My mind is scrambled, My heart is pounding, any advice?

[Guest guest]

Hello ladies,

You have all been the best!! Thank you for all that I've been reading

and receiving from all of you for the past two weeks since I've

joined. I feel like you are all my new family!!

Here's how today's follow up appt. went.. and I really need input as

to whether or not this is normal procedure. Some of you long term

survivors might know the answers. I will put out my history again,

as I feel it is important before answering.

Diagnosed with b/c 2 areas in left breast 5/05. Had mastectomy, tram

flap reconstruction and hysterectomy as I am BRAC1 positive and also

triple negative. At this time I was Stage 1, grade 2, DCIS and

invasive ductal carcinoma... THEN in 7/06, local reoccurrence..same

left side 4 large nodes on pectoral muscle. Removed with clear

margins in 7/06. Two clean PET CTs in 8/06. No idea what staging

this was as I am just now realizing I have no pathology on this

surgery.

Here's what I've been presented with my last 2 visits with the

oncologist. We know I am high risk, with a close reoccurrence. She

does not believe in CT scans, MRI's etc. to look for reoccurrences.

She will maintain with 2-3 month visits and have yearly mammo and MRI

done on right breast. She says studies have been proven that by

scanning when unnecessary only to find something that isn't cancerous

causes more problems and anxiety. Whether the cancer is found at a

small size or when at a larger size, the life expectancy isn't any

different according to the statistics. This is Dana Farber hospital

in Boston, MA by the way, which is supposed to be ONE of the better

hospitals.

My problem with this is, if it can be seen on my liver, brain, lungs,

whatever, in a small portion, ok, we know it has mets and no longer

curable, but start treatment. Why do I want to wait till its

everywhere to find it again only to have a shitty quality of life

left as well as quantity. It is left with follow ups like I

mentioned and if anything appears out of the norm, aches, pains, etc.

that don't go away with advil, to contact her to further

investigate. Until then, enjoy life as it is, put this cancer thing

on the back burner and don't waste quality time.

I'm not sure if I'm having a hard time with this because it means

giving up control, or if its because I'm not comfortable with the

plan of action. Are many of you scanned regulary? Blood work done

regulary?.. What is protocol for this.. I feel like I'm lost and I

don't know where to turn or what I'm actually looking for.

Any feedback on how anyone else is being monitored would be greatly

appreciated as well as any comments to this posting.

Peace and Prayers to all...

Michele

[Guest guest]

Personally I would rather have a little anxiety waiting for tests/results than

find out too late that the cancer has spread.

They must have changed the statistics. I never heard of her version before. I

was always told the earlier its caught the better chance of remission or cure.

If it were me I would get a second opinion or let her know you definitely are

NOT happy with the plan she has. She is working for YOU. Its your body and you

have a right to disagree if you want to. I will keep you in my prayers.

I had many bones scans and had chest xrays and alka phos blood tests for TEN

years plus my mammos.

Hugs

nne

Hugs

nne

Breast Cancer Patients Soul Mates for Life

http://www.geocities.com/chucky5741/breastcancerpatients.html

BreastCancerStories.com

http://www.breastcancerstories.com/content/view/433/161/

Angel Feather Loomer

www.angelfeatherloomer.blogspot.com

Check out my other ornaments at

www.geocities.com/chucky5741/bcornament.html

Lots of info and gifts at:

www.cancerclub.com

My mind is scrambled, My heart is pounding, any

advice?

Hello ladies,

You have all been the best!! Thank you for all that I've been reading

and receiving from all of you for the past two weeks since I've

joined. I feel like you are all my new family!!

Here's how today's follow up appt. went.. and I really need input as

to whether or not this is normal procedure. Some of you long term

survivors might know the answers. I will put out my history again,

as I feel it is important before answering.

Diagnosed with b/c 2 areas in left breast 5/05. Had mastectomy, tram

flap reconstruction and hysterectomy as I am BRAC1 positive and also

triple negative. At this time I was Stage 1, grade 2, DCIS and

invasive ductal carcinoma... THEN in 7/06, local reoccurrence..same

left side 4 large nodes on pectoral muscle. Removed with clear

margins in 7/06. Two clean PET CTs in 8/06. No idea what staging

this was as I am just now realizing I have no pathology on this

surgery.

Here's what I've been presented with my last 2 visits with the

oncologist. We know I am high risk, with a close reoccurrence. She

does not believe in CT scans, MRI's etc. to look for reoccurrences.

She will maintain with 2-3 month visits and have yearly mammo and MRI

done on right breast. She says studies have been proven that by

scanning when unnecessary only to find something that isn't cancerous

causes more problems and anxiety. Whether the cancer is found at a

small size or when at a larger size, the life expectancy isn't any

different according to the statistics. This is Dana Farber hospital

in Boston, MA by the way, which is supposed to be ONE of the better

hospitals.

My problem with this is, if it can be seen on my liver, brain, lungs,

whatever, in a small portion, ok, we know it has mets and no longer

curable, but start treatment. Why do I want to wait till its

everywhere to find it again only to have a shitty quality of life

left as well as quantity. It is left with follow ups like I

mentioned and if anything appears out of the norm, aches, pains, etc.

that don't go away with advil, to contact her to further

investigate. Until then, enjoy life as it is, put this cancer thing

on the back burner and don't waste quality time.

I'm not sure if I'm having a hard time with this because it means

giving up control, or if its because I'm not comfortable with the

plan of action. Are many of you scanned regulary? Blood work done

regulary?.. What is protocol for this.. I feel like I'm lost and I

don't know where to turn or what I'm actually looking for.

Any feedback on how anyone else is being monitored would be greatly

appreciated as well as any comments to this posting.

Peace and Prayers to all...

Michele

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[Guest guest]

Hey Neighbor! I'm being treated right next door at Beth Israel

Deconess in Boston. My follow up is basically the same, if I'm

reading you correctly. I'm on the " every three month plan " for now

and will probably go to every 6 after the first year. I get blood

work done (liver, markers, etc) and I am being followed up with a

Chest CT every 3 months because of some " suspicious " spots on my

right lung - but other than that - no planned on bone scans or MRI's

that I know of. The part about " waiting for it to show up " is also

something that I struggle with, but I can certainly understand your

concern, especially with your history of a quick recurrance.

If I were you, I think I'd push for more testing, if they'll agree,

at least get baseline MRI or CT - something to go on. There's a

really good book that I read today called, After Breast Cancer

written by Hester Hill Schipper (I think that's how you spell her

last name) - she is a 2 time survivor and happens to work at the BID

in Boston - anyway - the book deals specifically with learning to

live with B/C " after " treatment is done. It's something I am

struggeling with now and found the book very helpful - you may too.

Sending you hope and strength and a " space heater " - cuz it's

freezing here in Boston today!

Hugs!

Ellen

>

> Hello ladies,

>

> You have all been the best!! Thank you for all that I've been

reading

> and receiving from all of you for the past two weeks since I've

> joined. I feel like you are all my new family!!

>

> Here's how today's follow up appt. went.. and I really need input

as

> to whether or not this is normal procedure. Some of you long term

> survivors might know the answers. I will put out my history again,

> as I feel it is important before answering.

> Diagnosed with b/c 2 areas in left breast 5/05. Had mastectomy,

tram

> flap reconstruction and hysterectomy as I am BRAC1 positive and

also

> triple negative. At this time I was Stage 1, grade 2, DCIS and

> invasive ductal carcinoma... THEN in 7/06, local reoccurrence..same

> left side 4 large nodes on pectoral muscle. Removed with clear

> margins in 7/06. Two clean PET CTs in 8/06. No idea what staging

> this was as I am just now realizing I have no pathology on this

> surgery.

>

> Here's what I've been presented with my last 2 visits with the

> oncologist. We know I am high risk, with a close reoccurrence.

She

> does not believe in CT scans, MRI's etc. to look for

reoccurrences.

> She will maintain with 2-3 month visits and have yearly mammo and

MRI

> done on right breast. She says studies have been proven that by

> scanning when unnecessary only to find something that isn't

cancerous

> causes more problems and anxiety. Whether the cancer is found at a

> small size or when at a larger size, the life expectancy isn't any

> different according to the statistics. This is Dana Farber

hospital

> in Boston, MA by the way, which is supposed to be ONE of the better

> hospitals.

> My problem with this is, if it can be seen on my liver, brain,

lungs,

> whatever, in a small portion, ok, we know it has mets and no longer

> curable, but start treatment. Why do I want to wait till its

> everywhere to find it again only to have a shitty quality of life

> left as well as quantity. It is left with follow ups like I

> mentioned and if anything appears out of the norm, aches, pains,

etc.

> that don't go away with advil, to contact her to further

> investigate. Until then, enjoy life as it is, put this cancer

thing

> on the back burner and don't waste quality time.

> I'm not sure if I'm having a hard time with this because it means

> giving up control, or if its because I'm not comfortable with the

> plan of action. Are many of you scanned regulary? Blood work done

> regulary?.. What is protocol for this.. I feel like I'm lost and I

> don't know where to turn or what I'm actually looking for.

>

> Any feedback on how anyone else is being monitored would be greatly

> appreciated as well as any comments to this posting.

>

> Peace and Prayers to all...

> Michele

>

[Guest guest]

Ellen,

Why the blood work for liver, etc.? I can understand the CT scans if there

are suspicious spots, but I've also been told blood work doesn't show much.

Also, what helped you decide on Brighams and not Dana? R U from MA?

Thanks for the quick response, you have no idea how much this group helps me!

Love

Michele

Ellen emc_mom4@...> wrote:

Hey Neighbor! I'm being treated right next door at Beth Israel

Deconess in Boston. My follow up is basically the same, if I'm

reading you correctly. I'm on the " every three month plan " for now

and will probably go to every 6 after the first year. I get blood

work done (liver, markers, etc) and I am being followed up with a

Chest CT every 3 months because of some " suspicious " spots on my

right lung - but other than that - no planned on bone scans or MRI's

that I know of. The part about " waiting for it to show up " is also

something that I struggle with, but I can certainly understand your

concern, especially with your history of a quick recurrance.

If I were you, I think I'd push for more testing, if they'll agree,

at least get baseline MRI or CT - something to go on. There's a

really good book that I read today called, After Breast Cancer

written by Hester Hill Schipper (I think that's how you spell her

last name) - she is a 2 time survivor and happens to work at the BID

in Boston - anyway - the book deals specifically with learning to

live with B/C " after " treatment is done. It's something I am

struggeling with now and found the book very helpful - you may too.

Sending you hope and strength and a " space heater " - cuz it's

freezing here in Boston today!

Hugs!

Ellen

>

> Hello ladies,

>

> You have all been the best!! Thank you for all that I've been

reading

> and receiving from all of you for the past two weeks since I've

> joined. I feel like you are all my new family!!

>

> Here's how today's follow up appt. went.. and I really need input

as

> to whether or not this is normal procedure. Some of you long term

> survivors might know the answers. I will put out my history again,

> as I feel it is important before answering.

> Diagnosed with b/c 2 areas in left breast 5/05. Had mastectomy,

tram

> flap reconstruction and hysterectomy as I am BRAC1 positive and

also

> triple negative. At this time I was Stage 1, grade 2, DCIS and

> invasive ductal carcinoma... THEN in 7/06, local reoccurrence..same

> left side 4 large nodes on pectoral muscle. Removed with clear

> margins in 7/06. Two clean PET CTs in 8/06. No idea what staging

> this was as I am just now realizing I have no pathology on this

> surgery.

>

> Here's what I've been presented with my last 2 visits with the

> oncologist. We know I am high risk, with a close reoccurrence.

She

> does not believe in CT scans, MRI's etc. to look for

reoccurrences.

> She will maintain with 2-3 month visits and have yearly mammo and

MRI

> done on right breast. She says studies have been proven that by

> scanning when unnecessary only to find something that isn't

cancerous

> causes more problems and anxiety. Whether the cancer is found at a

> small size or when at a larger size, the life expectancy isn't any

> different according to the statistics. This is Dana Farber

hospital

> in Boston, MA by the way, which is supposed to be ONE of the better

> hospitals.

> My problem with this is, if it can be seen on my liver, brain,

lungs,

> whatever, in a small portion, ok, we know it has mets and no longer

> curable, but start treatment. Why do I want to wait till its

> everywhere to find it again only to have a shitty quality of life

> left as well as quantity. It is left with follow ups like I

> mentioned and if anything appears out of the norm, aches, pains,

etc.

> that don't go away with advil, to contact her to further

> investigate. Until then, enjoy life as it is, put this cancer

thing

> on the back burner and don't waste quality time.

> I'm not sure if I'm having a hard time with this because it means

> giving up control, or if its because I'm not comfortable with the

> plan of action. Are many of you scanned regulary? Blood work done

> regulary?.. What is protocol for this.. I feel like I'm lost and I

> don't know where to turn or what I'm actually looking for.

>

> Any feedback on how anyone else is being monitored would be greatly

> appreciated as well as any comments to this posting.

>

> Peace and Prayers to all...

> Michele

>

[Guest guest]

Michele,

My surgeon did alka phos blood work to check for mets to the liver.

Hugs

nne

Breast Cancer Patients Soul Mates for Life

http://www.geocities.com/chucky5741/breastcancerpatients.html

BreastCancerStories.com

http://www.breastcancerstories.com/content/view/433/161/

Angel Feather Loomer

www.angelfeatherloomer.blogspot.com

Check out my other ornaments at

www.geocities.com/chucky5741/bcornament.html

Lots of info and gifts at:

www.cancerclub.com

Re: Re: My mind is scrambled, My heart is pounding,

any advice?

Ellen,

Why the blood work for liver, etc.? I can understand the CT scans if there are

suspicious spots, but I've also been told blood work doesn't show much. Also,

what helped you decide on Brighams and not Dana? R U from MA?

Thanks for the quick response, you have no idea how much this group helps me!

Love

Michele

Ellen emc_mom4@...> wrote:

Hey Neighbor! I'm being treated right next door at Beth Israel

Deconess in Boston. My follow up is basically the same, if I'm

reading you correctly. I'm on the " every three month plan " for now

and will probably go to every 6 after the first year. I get blood

work done (liver, markers, etc) and I am being followed up with a

Chest CT every 3 months because of some " suspicious " spots on my

right lung - but other than that - no planned on bone scans or MRI's

that I know of. The part about " waiting for it to show up " is also

something that I struggle with, but I can certainly understand your

concern, especially with your history of a quick recurrance.

If I were you, I think I'd push for more testing, if they'll agree,

at least get baseline MRI or CT - something to go on. There's a

really good book that I read today called, After Breast Cancer

written by Hester Hill Schipper (I think that's how you spell her

last name) - she is a 2 time survivor and happens to work at the BID

in Boston - anyway - the book deals specifically with learning to

live with B/C " after " treatment is done. It's something I am

struggeling with now and found the book very helpful - you may too.

Sending you hope and strength and a " space heater " - cuz it's

freezing here in Boston today!

Hugs!

Ellen

>

> Hello ladies,

>

> You have all been the best!! Thank you for all that I've been

reading

> and receiving from all of you for the past two weeks since I've

> joined. I feel like you are all my new family!!

>

> Here's how today's follow up appt. went.. and I really need input

as

> to whether or not this is normal procedure. Some of you long term

> survivors might know the answers. I will put out my history again,

> as I feel it is important before answering.

> Diagnosed with b/c 2 areas in left breast 5/05. Had mastectomy,

tram

> flap reconstruction and hysterectomy as I am BRAC1 positive and

also

> triple negative. At this time I was Stage 1, grade 2, DCIS and

> invasive ductal carcinoma... THEN in 7/06, local reoccurrence..same

> left side 4 large nodes on pectoral muscle. Removed with clear

> margins in 7/06. Two clean PET CTs in 8/06. No idea what staging

> this was as I am just now realizing I have no pathology on this

> surgery.

>

> Here's what I've been presented with my last 2 visits with the

> oncologist. We know I am high risk, with a close reoccurrence.

She

> does not believe in CT scans, MRI's etc. to look for

reoccurrences.

> She will maintain with 2-3 month visits and have yearly mammo and

MRI

> done on right breast. She says studies have been proven that by

> scanning when unnecessary only to find something that isn't

cancerous

> causes more problems and anxiety. Whether the cancer is found at a

> small size or when at a larger size, the life expectancy isn't any

> different according to the statistics. This is Dana Farber

hospital

> in Boston, MA by the way, which is supposed to be ONE of the better

> hospitals.

> My problem with this is, if it can be seen on my liver, brain,

lungs,

> whatever, in a small portion, ok, we know it has mets and no longer

> curable, but start treatment. Why do I want to wait till its

> everywhere to find it again only to have a shitty quality of life

> left as well as quantity. It is left with follow ups like I

> mentioned and if anything appears out of the norm, aches, pains,

etc.

> that don't go away with advil, to contact her to further

> investigate. Until then, enjoy life as it is, put this cancer

thing

> on the back burner and don't waste quality time.

> I'm not sure if I'm having a hard time with this because it means

> giving up control, or if its because I'm not comfortable with the

> plan of action. Are many of you scanned regulary? Blood work done

> regulary?.. What is protocol for this.. I feel like I'm lost and I

> don't know where to turn or what I'm actually looking for.

>

> Any feedback on how anyone else is being monitored would be greatly

> appreciated as well as any comments to this posting.

>

> Peace and Prayers to all...

> Michele

>

[Guest guest]

My oncologist doesn't do any kind of scans to look for recurrence

either. I got the same information as you. Finding a recurrence

early doesn't improve the long term survival rate. Scans produce a

large number of false postive results which lead to more biopsies

and stress for the patient.

I am not sure I believe this logic, but he is the cancer expert, not

me, and I trust him.

He wants to know if I have any pain that is concentrated in a

particular area for more than 2 weeks. Other than that, I have to

see him every 3-6 months to check for local recurrences.

>

> Hello ladies,

>

> You have all been the best!! Thank you for all that I've been

reading

> and receiving from all of you for the past two weeks since I've

> joined. I feel like you are all my new family!!

>

> Here's how today's follow up appt. went.. and I really need input

as

> to whether or not this is normal procedure. Some of you long term

> survivors might know the answers. I will put out my history

again,

> as I feel it is important before answering.

> Diagnosed with b/c 2 areas in left breast 5/05. Had mastectomy,

tram

> flap reconstruction and hysterectomy as I am BRAC1 positive and

also

> triple negative. At this time I was Stage 1, grade 2, DCIS and

> invasive ductal carcinoma... THEN in 7/06, local

reoccurrence..same

> left side 4 large nodes on pectoral muscle. Removed with clear

> margins in 7/06. Two clean PET CTs in 8/06. No idea what staging

> this was as I am just now realizing I have no pathology on this

> surgery.

>

> Here's what I've been presented with my last 2 visits with the

> oncologist. We know I am high risk, with a close reoccurrence.

She

> does not believe in CT scans, MRI's etc. to look for

reoccurrences.

> She will maintain with 2-3 month visits and have yearly mammo and

MRI

> done on right breast. She says studies have been proven that by

> scanning when unnecessary only to find something that isn't

cancerous

> causes more problems and anxiety. Whether the cancer is found at

a

> small size or when at a larger size, the life expectancy isn't any

> different according to the statistics. This is Dana Farber

hospital

> in Boston, MA by the way, which is supposed to be ONE of the

better

> hospitals.

> My problem with this is, if it can be seen on my liver, brain,

lungs,

> whatever, in a small portion, ok, we know it has mets and no

longer

> curable, but start treatment. Why do I want to wait till its

> everywhere to find it again only to have a shitty quality of life

> left as well as quantity. It is left with follow ups like I

> mentioned and if anything appears out of the norm, aches, pains,

etc.

> that don't go away with advil, to contact her to further

> investigate. Until then, enjoy life as it is, put this cancer

thing

> on the back burner and don't waste quality time.

> I'm not sure if I'm having a hard time with this because it means

> giving up control, or if its because I'm not comfortable with the

> plan of action. Are many of you scanned regulary? Blood work

done

> regulary?.. What is protocol for this.. I feel like I'm lost and I

> don't know where to turn or what I'm actually looking for.

>

> Any feedback on how anyone else is being monitored would be

greatly

> appreciated as well as any comments to this posting.

>

> Peace and Prayers to all...

> Michele

>

[Guest guest]

,

Thank you so much, I can feel the beat of my heart slow down already! It is

comforting to know that someone else is being told the exact same information.

I am with you when you say it doesn't make sense.. but I also feel a though its

my body and I don't want any mistakes either!

Where are you from and what hospital are you attending?

Thanks again for the comfort!

Peace and Prayers,

Michele

laurava23233 jeff.laura@...> wrote:

My oncologist doesn't do any kind of scans to look for recurrence

either. I got the same information as you. Finding a recurrence

early doesn't improve the long term survival rate. Scans produce a

large number of false postive results which lead to more biopsies

and stress for the patient.

I am not sure I believe this logic, but he is the cancer expert, not

me, and I trust him.

He wants to know if I have any pain that is concentrated in a

particular area for more than 2 weeks. Other than that, I have to

see him every 3-6 months to check for local recurrences.

>

> Hello ladies,

>

> You have all been the best!! Thank you for all that I've been

reading

> and receiving from all of you for the past two weeks since I've

> joined. I feel like you are all my new family!!

>

> Here's how today's follow up appt. went.. and I really need input

as

> to whether or not this is normal procedure. Some of you long term

> survivors might know the answers. I will put out my history

again,

> as I feel it is important before answering.

> Diagnosed with b/c 2 areas in left breast 5/05. Had mastectomy,

tram

> flap reconstruction and hysterectomy as I am BRAC1 positive and

also

> triple negative. At this time I was Stage 1, grade 2, DCIS and

> invasive ductal carcinoma... THEN in 7/06, local

reoccurrence..same

> left side 4 large nodes on pectoral muscle. Removed with clear

> margins in 7/06. Two clean PET CTs in 8/06. No idea what staging

> this was as I am just now realizing I have no pathology on this

> surgery.

>

> Here's what I've been presented with my last 2 visits with the

> oncologist. We know I am high risk, with a close reoccurrence.

She

> does not believe in CT scans, MRI's etc. to look for

reoccurrences.

> She will maintain with 2-3 month visits and have yearly mammo and

MRI

> done on right breast. She says studies have been proven that by

> scanning when unnecessary only to find something that isn't

cancerous

> causes more problems and anxiety. Whether the cancer is found at

a

> small size or when at a larger size, the life expectancy isn't any

> different according to the statistics. This is Dana Farber

hospital

> in Boston, MA by the way, which is supposed to be ONE of the

better

> hospitals.

> My problem with this is, if it can be seen on my liver, brain,

lungs,

> whatever, in a small portion, ok, we know it has mets and no

longer

> curable, but start treatment. Why do I want to wait till its

> everywhere to find it again only to have a shitty quality of life

> left as well as quantity. It is left with follow ups like I

> mentioned and if anything appears out of the norm, aches, pains,

etc.

> that don't go away with advil, to contact her to further

> investigate. Until then, enjoy life as it is, put this cancer

thing

> on the back burner and don't waste quality time.

> I'm not sure if I'm having a hard time with this because it means

> giving up control, or if its because I'm not comfortable with the

> plan of action. Are many of you scanned regulary? Blood work

done

> regulary?.. What is protocol for this.. I feel like I'm lost and I

> don't know where to turn or what I'm actually looking for.

>

> Any feedback on how anyone else is being monitored would be

greatly

> appreciated as well as any comments to this posting.

>

> Peace and Prayers to all...

> Michele

>

[Guest guest]

The doctor I am seeing used to be at the Medical College of

Virginia. Now he is with the Virginia Cancer Institute.

One of my neighbors used to be an oncology nurse and worked w/him.

The thing she said that she liked best about him was how meticulous

he was. She said he was obsessive about being sure things were done

right and that if she had cancer, he is the kind of doctor she would

want.

I know what you mean about wanting to do what is best. If you think

you need to get scans to give you peace of mind, you could check

w/another onc. People get second opinions all the time.

> >

> > Hello ladies,

> >

> > You have all been the best!! Thank you for all that I've been

> reading

> > and receiving from all of you for the past two weeks since I've

> > joined. I feel like you are all my new family!!

> >

> > Here's how today's follow up appt. went.. and I really need

input

> as

> > to whether or not this is normal procedure. Some of you long

term

> > survivors might know the answers. I will put out my history

> again,

> > as I feel it is important before answering.

> > Diagnosed with b/c 2 areas in left breast 5/05. Had mastectomy,

> tram

> > flap reconstruction and hysterectomy as I am BRAC1 positive and

> also

> > triple negative. At this time I was Stage 1, grade 2, DCIS and

> > invasive ductal carcinoma... THEN in 7/06, local

> reoccurrence..same

> > left side 4 large nodes on pectoral muscle. Removed with clear

> > margins in 7/06. Two clean PET CTs in 8/06. No idea what staging

> > this was as I am just now realizing I have no pathology on this

> > surgery.

> >

> > Here's what I've been presented with my last 2 visits with the

> > oncologist. We know I am high risk, with a close reoccurrence.

> She

> > does not believe in CT scans, MRI's etc. to look for

> reoccurrences.

> > She will maintain with 2-3 month visits and have yearly mammo

and

> MRI

> > done on right breast. She says studies have been proven that by

> > scanning when unnecessary only to find something that isn't

> cancerous

> > causes more problems and anxiety. Whether the cancer is found at

> a

> > small size or when at a larger size, the life expectancy isn't

any

> > different according to the statistics. This is Dana Farber

> hospital

> > in Boston, MA by the way, which is supposed to be ONE of the

> better

> > hospitals.

> > My problem with this is, if it can be seen on my liver, brain,

> lungs,

> > whatever, in a small portion, ok, we know it has mets and no

> longer

> > curable, but start treatment. Why do I want to wait till its

> > everywhere to find it again only to have a shitty quality of

life

> > left as well as quantity. It is left with follow ups like I

> > mentioned and if anything appears out of the norm, aches, pains,

> etc.

> > that don't go away with advil, to contact her to further

> > investigate. Until then, enjoy life as it is, put this cancer

> thing

> > on the back burner and don't waste quality time.

> > I'm not sure if I'm having a hard time with this because it

means

> > giving up control, or if its because I'm not comfortable with

the

> > plan of action. Are many of you scanned regulary? Blood work

> done

> > regulary?.. What is protocol for this.. I feel like I'm lost and

I

> > don't know where to turn or what I'm actually looking for.

> >

> > Any feedback on how anyone else is being monitored would be

> greatly

> > appreciated as well as any comments to this posting.

> >

> > Peace and Prayers to all...

> > Michele

> >

>

>

>

>

>

>

>

[Guest guest]

Hi & Michele,

I'm just about to have my 1st post-treatment visit with my oncologist.

She's already told me the same thing - scans are not done unless there's

a specific area of concern. This is according to the latest guidelines

from the 2006 ASCO meeting. I've also read that earlier detection of a

recurrence doesn't affect overall survival, but I would like to think

that statistic doesn't reflect the new data with the new drugs and

treatments coming out.

It seems that in the year+ that I was diagnosed and underwent treatment

that alot of new research has come out that is helping women prevent

recurrences and live with cancer. I keep up with message boards at

her2support.org and there are many women with stage iv who are doing

fine with treatments.

Also, we all respond to treaments differently, and detection methods may

work for some, but not for others. Michele, does your doctor recommend

blood work? You can test for certain markers. Again, those markers may

not work for every woman. But I believe some of the blood work can test

for liver function. I'm just throwing this out there - I don't know what

all blood work is usually done, but hope to find out this Friday. I

think that's the one thing my onc. said she would recommend doing.

-

laurava23233 wrote on 2/5/2007, 9:01 PM:

> My oncologist doesn't do any kind of scans to look for recurrence

> either. I got the same information as you. Finding a recurrence

> early doesn't improve the long term survival rate. Scans produce a

> large number of false postive results which lead to more biopsies

> and stress for the patient.

>

> I am not sure I believe this logic, but he is the cancer expert, not

> me, and I trust him.

>

> He wants to know if I have any pain that is concentrated in a

> particular area for more than 2 weeks. Other than that, I have to

> see him every 3-6 months to check for local recurrences.

>

>

>

>

>

[Guest guest]

I have gotten the exact same info from 3 different oncs. Finding a

recurrance early doesn't improve long term survival and scans give a

lot of false positives. Pain is what my current onc is interested in.

I am just going to assume that not having chemo doesn't influence

long term survival either!

Ruth

> >

> > Hello ladies,

> >

> > You have all been the best!! Thank you for all that I've been

> reading

> > and receiving from all of you for the past two weeks since I've

> > joined. I feel like you are all my new family!!

> >

> > Here's how today's follow up appt. went.. and I really need input

> as

> > to whether or not this is normal procedure. Some of you long term

> > survivors might know the answers. I will put out my history

> again,

> > as I feel it is important before answering.

> > Diagnosed with b/c 2 areas in left breast 5/05. Had mastectomy,

> tram

> > flap reconstruction and hysterectomy as I am BRAC1 positive and

> also

> > triple negative. At this time I was Stage 1, grade 2, DCIS and

> > invasive ductal carcinoma... THEN in 7/06, local

> reoccurrence..same

> > left side 4 large nodes on pectoral muscle. Removed with clear

> > margins in 7/06. Two clean PET CTs in 8/06. No idea what staging

> > this was as I am just now realizing I have no pathology on this

> > surgery.

> >

> > Here's what I've been presented with my last 2 visits with the

> > oncologist. We know I am high risk, with a close reoccurrence.

> She

> > does not believe in CT scans, MRI's etc. to look for

> reoccurrences.

> > She will maintain with 2-3 month visits and have yearly mammo and

> MRI

> > done on right breast. She says studies have been proven that by

> > scanning when unnecessary only to find something that isn't

> cancerous

> > causes more problems and anxiety. Whether the cancer is found at

> a

> > small size or when at a larger size, the life expectancy isn't any

> > different according to the statistics. This is Dana Farber

> hospital

> > in Boston, MA by the way, which is supposed to be ONE of the

> better

> > hospitals.

> > My problem with this is, if it can be seen on my liver, brain,

> lungs,

> > whatever, in a small portion, ok, we know it has mets and no

> longer

> > curable, but start treatment. Why do I want to wait till its

> > everywhere to find it again only to have a shitty quality of life

> > left as well as quantity. It is left with follow ups like I

> > mentioned and if anything appears out of the norm, aches, pains,

> etc.

> > that don't go away with advil, to contact her to further

> > investigate. Until then, enjoy life as it is, put this cancer

> thing

> > on the back burner and don't waste quality time.

> > I'm not sure if I'm having a hard time with this because it means

> > giving up control, or if its because I'm not comfortable with the

> > plan of action. Are many of you scanned regulary? Blood work

> done

> > regulary?.. What is protocol for this.. I feel like I'm lost and I

> > don't know where to turn or what I'm actually looking for.

> >

> > Any feedback on how anyone else is being monitored would be

> greatly

> > appreciated as well as any comments to this posting.

> >

> > Peace and Prayers to all...

> > Michele

> >

>

>

>

>

>

>

>

[Guest guest]

Hi Michele,

You know I'm 22 years out and I have bloodwork each year. After 5

years they stopped the scans 'looking' for something. My occurences

were 3 1/2 years apart, but they were separate cancers, not a

reoccurence. I know I was one of the few who had no further problems.

Now having said that I think I would want to be proactive and want it

followed closely. I think it would be easier to worry a bit when

appointments or tests are due than to wait. I remember doing just that

after each mast.

Whichever way you choose, let it be what you can live with, no one

else. Make your decision so that each day you don't second guess

yourself. Blessings, prayers and positive thoughts to all the so very

special people on this list!

--

Angel (A.K.A. Mari)

mfgershman@...

Please click each day to help others, IT'S FREE!

http://www.thebreastcancersite.com/cgi-bin/WebObjects/CTDSites

[Guest guest]

Michele:

No wonder you hate the facility and hate your doctor! I would, too. With

your history of reoccurence, what is she thinking?

I would find another doctor and facility. Being the best doing always mean

being the best for you.

Girlfriend, I am sending you large doses of caring and

((((((((((hugs)))))))))).

Jan K

Michele tinkkerbelle2002@...> wrote:

Hello ladies,

You have all been the best!! Thank you for all that I've been reading

and receiving from all of you for the past two weeks since I've

joined. I feel like you are all my new family!!

Here's how today's follow up appt. went.. and I really need input as

to whether or not this is normal procedure. Some of you long term

survivors might know the answers. I will put out my history again,

as I feel it is important before answering.

Diagnosed with b/c 2 areas in left breast 5/05. Had mastectomy, tram

flap reconstruction and hysterectomy as I am BRAC1 positive and also

triple negative. At this time I was Stage 1, grade 2, DCIS and

invasive ductal carcinoma... THEN in 7/06, local reoccurrence..same

left side 4 large nodes on pectoral muscle. Removed with clear

margins in 7/06. Two clean PET CTs in 8/06. No idea what staging

this was as I am just now realizing I have no pathology on this

surgery.

Here's what I've been presented with my last 2 visits with the

oncologist. We know I am high risk, with a close reoccurrence. She

does not believe in CT scans, MRI's etc. to look for reoccurrences.

She will maintain with 2-3 month visits and have yearly mammo and MRI

done on right breast. She says studies have been proven that by

scanning when unnecessary only to find something that isn't cancerous

causes more problems and anxiety. Whether the cancer is found at a

small size or when at a larger size, the life expectancy isn't any

different according to the statistics. This is Dana Farber hospital

in Boston, MA by the way, which is supposed to be ONE of the better

hospitals.

My problem with this is, if it can be seen on my liver, brain, lungs,

whatever, in a small portion, ok, we know it has mets and no longer

curable, but start treatment. Why do I want to wait till its

everywhere to find it again only to have a shitty quality of life

left as well as quantity. It is left with follow ups like I

mentioned and if anything appears out of the norm, aches, pains, etc.

that don't go away with advil, to contact her to further

investigate. Until then, enjoy life as it is, put this cancer thing

on the back burner and don't waste quality time.

I'm not sure if I'm having a hard time with this because it means

giving up control, or if its because I'm not comfortable with the

plan of action. Are many of you scanned regulary? Blood work done

regulary?.. What is protocol for this.. I feel like I'm lost and I

don't know where to turn or what I'm actually looking for.

Any feedback on how anyone else is being monitored would be greatly

appreciated as well as any comments to this posting.

Peace and Prayers to all...

Michele

Jan Koelsch

---------------------------------

Food fight? Enjoy some healthy debate

in the Yahoo! Answers Food & Drink Q&A.

[Guest guest]

Hi Michele,

My doctor, highly renowned in this area, told me the EXACT same thing

in terms of follow-up care. Your doctor is actually following the

National Cancer Institute's guidelines. For more information, see:

http://www.cancer.gov/cancertopics/pdq/treatment/breast/healthprofessi

onal#Section_14

It's a little unnerving, but on the other hand, false-positives on

scans and such would be stressful as well.

Hugs,

Janet B.

>

> Hello ladies,

>

> You have all been the best!! Thank you for all that I've been

reading

> and receiving from all of you for the past two weeks since I've

> joined. I feel like you are all my new family!!

>

> Here's how today's follow up appt. went.. and I really need input

as

> to whether or not this is normal procedure. Some of you long term

> survivors might know the answers. I will put out my history again,

> as I feel it is important before answering.

> Diagnosed with b/c 2 areas in left breast 5/05. Had mastectomy,

tram

> flap reconstruction and hysterectomy as I am BRAC1 positive and

also

> triple negative. At this time I was Stage 1, grade 2, DCIS and

> invasive ductal carcinoma... THEN in 7/06, local reoccurrence..same

> left side 4 large nodes on pectoral muscle. Removed with clear

> margins in 7/06. Two clean PET CTs in 8/06. No idea what staging

> this was as I am just now realizing I have no pathology on this

> surgery.

>

> Here's what I've been presented with my last 2 visits with the

> oncologist. We know I am high risk, with a close reoccurrence.

She

> does not believe in CT scans, MRI's etc. to look for

reoccurrences.

> She will maintain with 2-3 month visits and have yearly mammo and

MRI

> done on right breast. She says studies have been proven that by

> scanning when unnecessary only to find something that isn't

cancerous

> causes more problems and anxiety. Whether the cancer is found at a

> small size or when at a larger size, the life expectancy isn't any

> different according to the statistics. This is Dana Farber

hospital

> in Boston, MA by the way, which is supposed to be ONE of the better

> hospitals.

> My problem with this is, if it can be seen on my liver, brain,

lungs,

> whatever, in a small portion, ok, we know it has mets and no longer

> curable, but start treatment. Why do I want to wait till its

> everywhere to find it again only to have a shitty quality of life

> left as well as quantity. It is left with follow ups like I

> mentioned and if anything appears out of the norm, aches, pains,

etc.

> that don't go away with advil, to contact her to further

> investigate. Until then, enjoy life as it is, put this cancer

thing

> on the back burner and don't waste quality time.

> I'm not sure if I'm having a hard time with this because it means

> giving up control, or if its because I'm not comfortable with the

> plan of action. Are many of you scanned regulary? Blood work done

> regulary?.. What is protocol for this.. I feel like I'm lost and I

> don't know where to turn or what I'm actually looking for.

>

> Any feedback on how anyone else is being monitored would be greatly

> appreciated as well as any comments to this posting.

>

> Peace and Prayers to all...

> Michele

>

[Guest guest]

The blood work is just a precautionary marker type of test to see if

my liver enzymes are okay and to look for tumor markers. She groups

these tests along with all of my other " 3 month " blood tests, iron,

white and red's etc. So far, so good.

I got hooked up at the BIDMC because my surgeon works there. I

chose him because I happen to know him - our kids play basketball

together and he lives in my town and he's a great oncology surgeon,

so all of my other Doc's are referred by him. I have two friends

who have been treated at the Dana Farber - great hospital! As a

matter of fact, my surgeon's wife works at the DF.

Yes, I'm from Mass originally - lived here all my life - how about

you? I live in a small town south of Boston - about 30 minutes from

the city.

Hugs and best!

Ellen

> >

> > Hello ladies,

> >

> > You have all been the best!! Thank you for all that I've been

> reading

> > and receiving from all of you for the past two weeks since I've

> > joined. I feel like you are all my new family!!

> >

> > Here's how today's follow up appt. went.. and I really need

input

> as

> > to whether or not this is normal procedure. Some of you long

term

> > survivors might know the answers. I will put out my history

again,

> > as I feel it is important before answering.

> > Diagnosed with b/c 2 areas in left breast 5/05. Had mastectomy,

> tram

> > flap reconstruction and hysterectomy as I am BRAC1 positive and

> also

> > triple negative. At this time I was Stage 1, grade 2, DCIS and

> > invasive ductal carcinoma... THEN in 7/06, local

reoccurrence..same

> > left side 4 large nodes on pectoral muscle. Removed with clear

> > margins in 7/06. Two clean PET CTs in 8/06. No idea what staging

> > this was as I am just now realizing I have no pathology on this

> > surgery.

> >

> > Here's what I've been presented with my last 2 visits with the

> > oncologist. We know I am high risk, with a close reoccurrence.

> She

> > does not believe in CT scans, MRI's etc. to look for

> reoccurrences.

> > She will maintain with 2-3 month visits and have yearly mammo

and

> MRI

> > done on right breast. She says studies have been proven that by

> > scanning when unnecessary only to find something that isn't

> cancerous

> > causes more problems and anxiety. Whether the cancer is found at

a

> > small size or when at a larger size, the life expectancy isn't

any

> > different according to the statistics. This is Dana Farber

> hospital

> > in Boston, MA by the way, which is supposed to be ONE of the

better

> > hospitals.

> > My problem with this is, if it can be seen on my liver, brain,

> lungs,

> > whatever, in a small portion, ok, we know it has mets and no

longer

> > curable, but start treatment. Why do I want to wait till its

> > everywhere to find it again only to have a shitty quality of

life

> > left as well as quantity. It is left with follow ups like I

> > mentioned and if anything appears out of the norm, aches, pains,

> etc.

> > that don't go away with advil, to contact her to further

> > investigate. Until then, enjoy life as it is, put this cancer

> thing

> > on the back burner and don't waste quality time.

> > I'm not sure if I'm having a hard time with this because it

means

> > giving up control, or if its because I'm not comfortable with

the

> > plan of action. Are many of you scanned regulary? Blood work

done

> > regulary?.. What is protocol for this.. I feel like I'm lost and

I

> > don't know where to turn or what I'm actually looking for.

> >

> > Any feedback on how anyone else is being monitored would be

greatly

> > appreciated as well as any comments to this posting.

> >

> > Peace and Prayers to all...

> > Michele

> >

>

>

>

>

>

>

>

[Guest guest]

Thank You Janet B for your comments.. It is getting better to hear that we are

all in the same boat I guess, but is following the guidelines to save for the

insurance or to save our lives?!

Michele

xo

lilahope777 lilahope777@...> wrote:

Hi Michele,

My doctor, highly renowned in this area, told me the EXACT same thing

in terms of follow-up care. Your doctor is actually following the

National Cancer Institute's guidelines. For more information, see:

http://www.cancer.gov/cancertopics/pdq/treatment/breast/healthprofessi

onal#Section_14

It's a little unnerving, but on the other hand, false-positives on

scans and such would be stressful as well.

Hugs,

Janet B.

>

> Hello ladies,

>

> You have all been the best!! Thank you for all that I've been

reading

> and receiving from all of you for the past two weeks since I've

> joined. I feel like you are all my new family!!

>

> Here's how today's follow up appt. went.. and I really need input

as

> to whether or not this is normal procedure. Some of you long term

> survivors might know the answers. I will put out my history again,

> as I feel it is important before answering.

> Diagnosed with b/c 2 areas in left breast 5/05. Had mastectomy,

tram

> flap reconstruction and hysterectomy as I am BRAC1 positive and

also

> triple negative. At this time I was Stage 1, grade 2, DCIS and

> invasive ductal carcinoma... THEN in 7/06, local reoccurrence..same

> left side 4 large nodes on pectoral muscle. Removed with clear

> margins in 7/06. Two clean PET CTs in 8/06. No idea what staging

> this was as I am just now realizing I have no pathology on this

> surgery.

>

> Here's what I've been presented with my last 2 visits with the

> oncologist. We know I am high risk, with a close reoccurrence.

She

> does not believe in CT scans, MRI's etc. to look for

reoccurrences.

> She will maintain with 2-3 month visits and have yearly mammo and

MRI

> done on right breast. She says studies have been proven that by

> scanning when unnecessary only to find something that isn't

cancerous

> causes more problems and anxiety. Whether the cancer is found at a

> small size or when at a larger size, the life expectancy isn't any

> different according to the statistics. This is Dana Farber

hospital

> in Boston, MA by the way, which is supposed to be ONE of the better

> hospitals.

> My problem with this is, if it can be seen on my liver, brain,

lungs,

> whatever, in a small portion, ok, we know it has mets and no longer

> curable, but start treatment. Why do I want to wait till its

> everywhere to find it again only to have a shitty quality of life

> left as well as quantity. It is left with follow ups like I

> mentioned and if anything appears out of the norm, aches, pains,

etc.

> that don't go away with advil, to contact her to further

> investigate. Until then, enjoy life as it is, put this cancer

thing

> on the back burner and don't waste quality time.

> I'm not sure if I'm having a hard time with this because it means

> giving up control, or if its because I'm not comfortable with the

> plan of action. Are many of you scanned regulary? Blood work done

> regulary?.. What is protocol for this.. I feel like I'm lost and I

> don't know where to turn or what I'm actually looking for.

>

> Any feedback on how anyone else is being monitored would be greatly

> appreciated as well as any comments to this posting.

>

> Peace and Prayers to all...

> Michele

>

[Guest guest]

Jan K...

You are the most compassionate person I have ever met.. as you are headed to

your appts. today on pins and needles yourself, you took the time to read my

email yesterday and offer your support and big HUGS!! Thank you my friend, for

who you are, and for being YOU! I have been thinking of you all day and hope to

results of your tests are as clean as a whistle!!

BTW, I'm on that prayer campaign with you g/f!!!!

Love

Michele

Jan Koelsch jkoelsch1950@...> wrote:

Michele:

No wonder you hate the facility and hate your doctor! I would, too. With your

history of reoccurence, what is she thinking?

I would find another doctor and facility. Being the best doing always mean being

the best for you.

Girlfriend, I am sending you large doses of caring and ((((((((((hugs)))))))))).

Jan K

Michele tinkkerbelle2002@...> wrote:

Hello ladies,

You have all been the best!! Thank you for all that I've been reading

and receiving from all of you for the past two weeks since I've

joined. I feel like you are all my new family!!

Here's how today's follow up appt. went.. and I really need input as

to whether or not this is normal procedure. Some of you long term

survivors might know the answers. I will put out my history again,

as I feel it is important before answering.

Diagnosed with b/c 2 areas in left breast 5/05. Had mastectomy, tram

flap reconstruction and hysterectomy as I am BRAC1 positive and also

triple negative. At this time I was Stage 1, grade 2, DCIS and

invasive ductal carcinoma... THEN in 7/06, local reoccurrence..same

left side 4 large nodes on pectoral muscle. Removed with clear

margins in 7/06. Two clean PET CTs in 8/06. No idea what staging

this was as I am just now realizing I have no pathology on this

surgery.

Here's what I've been presented with my last 2 visits with the

oncologist. We know I am high risk, with a close reoccurrence. She

does not believe in CT scans, MRI's etc. to look for reoccurrences.

She will maintain with 2-3 month visits and have yearly mammo and MRI

done on right breast. She says studies have been proven that by

scanning when unnecessary only to find something that isn't cancerous

causes more problems and anxiety. Whether the cancer is found at a

small size or when at a larger size, the life expectancy isn't any

different according to the statistics. This is Dana Farber hospital

in Boston, MA by the way, which is supposed to be ONE of the better

hospitals.

My problem with this is, if it can be seen on my liver, brain, lungs,

whatever, in a small portion, ok, we know it has mets and no longer

curable, but start treatment. Why do I want to wait till its

everywhere to find it again only to have a shitty quality of life

left as well as quantity. It is left with follow ups like I

mentioned and if anything appears out of the norm, aches, pains, etc.

that don't go away with advil, to contact her to further

investigate. Until then, enjoy life as it is, put this cancer thing

on the back burner and don't waste quality time.

I'm not sure if I'm having a hard time with this because it means

giving up control, or if its because I'm not comfortable with the

plan of action. Are many of you scanned regulary? Blood work done

regulary?.. What is protocol for this.. I feel like I'm lost and I

don't know where to turn or what I'm actually looking for.

Any feedback on how anyone else is being monitored would be greatly

appreciated as well as any comments to this posting.

Peace and Prayers to all...

Michele

Jan Koelsch

---------------------------------

Food fight? Enjoy some healthy debate

in the Yahoo! Answers Food & Drink Q&A.

[Guest guest]

Mari,

God bless you, for 22 years out, that just seem like a miracle.. I can only

hope that I get that much time... I will fight for it, thats for darn sure!

Thank you for your kind words and helpful information..

Peace and Prayers,

Michele

Mari mfgershman@...> wrote:

Hi Michele,

You know I'm 22 years out and I have bloodwork each year. After 5

years they stopped the scans 'looking' for something. My occurences

were 3 1/2 years apart, but they were separate cancers, not a

reoccurence. I know I was one of the few who had no further problems.

Now having said that I think I would want to be proactive and want it

followed closely. I think it would be easier to worry a bit when

appointments or tests are due than to wait. I remember doing just that

after each mast.

Whichever way you choose, let it be what you can live with, no one

else. Make your decision so that each day you don't second guess

yourself. Blessings, prayers and positive thoughts to all the so very

special people on this list!

--

Angel (A.K.A. Mari)

mfgershman@...

Please click each day to help others, IT'S FREE!

http://www.thebreastcancersite.com/cgi-bin/WebObjects/CTDSites

[Guest guest]

Thank you Ruth,

The more I read the more things make sense, but I still don't agree with it!

LOL... You actually already talked to 3 different doctors and got the same info,

I'd be going to a third if I switch again now too... It's so hard to wonder if

we are in the best of hands or not...do you jump ship just to land in a worse

place?? I dunno, I just need to sort, read and follow my mind, which I have

always been told I have a good head on my shoulder, it just doesn't always work

in the right direction for me. Now my kids on the other hand, mess with them

and look out!!! LOL..

Thanks again Ruth, btw, what hospital to you go to ?

Hugs,

Michele

ruthiema36 ruthiema36@...> wrote:

I have gotten the exact same info from 3 different oncs. Finding a

recurrance early doesn't improve long term survival and scans give a

lot of false positives. Pain is what my current onc is interested in.

I am just going to assume that not having chemo doesn't influence

long term survival either!

Ruth

> >

> > Hello ladies,

> >

> > You have all been the best!! Thank you for all that I've been

> reading

> > and receiving from all of you for the past two weeks since I've

> > joined. I feel like you are all my new family!!

> >

> > Here's how today's follow up appt. went.. and I really need input

> as

> > to whether or not this is normal procedure. Some of you long term

> > survivors might know the answers. I will put out my history

> again,

> > as I feel it is important before answering.

> > Diagnosed with b/c 2 areas in left breast 5/05. Had mastectomy,

> tram

> > flap reconstruction and hysterectomy as I am BRAC1 positive and

> also

> > triple negative. At this time I was Stage 1, grade 2, DCIS and

> > invasive ductal carcinoma... THEN in 7/06, local

> reoccurrence..same

> > left side 4 large nodes on pectoral muscle. Removed with clear

> > margins in 7/06. Two clean PET CTs in 8/06. No idea what staging

> > this was as I am just now realizing I have no pathology on this

> > surgery.

> >

> > Here's what I've been presented with my last 2 visits with the

> > oncologist. We know I am high risk, with a close reoccurrence.

> She

> > does not believe in CT scans, MRI's etc. to look for

> reoccurrences.

> > She will maintain with 2-3 month visits and have yearly mammo and

> MRI

> > done on right breast. She says studies have been proven that by

> > scanning when unnecessary only to find something that isn't

> cancerous

> > causes more problems and anxiety. Whether the cancer is found at

> a

> > small size or when at a larger size, the life expectancy isn't any

> > different according to the statistics. This is Dana Farber

> hospital

> > in Boston, MA by the way, which is supposed to be ONE of the

> better

> > hospitals.

> > My problem with this is, if it can be seen on my liver, brain,

> lungs,

> > whatever, in a small portion, ok, we know it has mets and no

> longer

> > curable, but start treatment. Why do I want to wait till its

> > everywhere to find it again only to have a shitty quality of life

> > left as well as quantity. It is left with follow ups like I

> > mentioned and if anything appears out of the norm, aches, pains,

> etc.

> > that don't go away with advil, to contact her to further

> > investigate. Until then, enjoy life as it is, put this cancer

> thing

> > on the back burner and don't waste quality time.

> > I'm not sure if I'm having a hard time with this because it means

> > giving up control, or if its because I'm not comfortable with the

> > plan of action. Are many of you scanned regulary? Blood work

> done

> > regulary?.. What is protocol for this.. I feel like I'm lost and I

> > don't know where to turn or what I'm actually looking for.

> >

> > Any feedback on how anyone else is being monitored would be

> greatly

> > appreciated as well as any comments to this posting.

> >

> > Peace and Prayers to all...

> > Michele

> >

>

>

>

>

>

>

>

[Guest guest]

On the same note are we encouraged to take chemo to save our lives or

to line the pockets of the drug companies? Do a little research and

think absolute not relative statistic. Just another view point on a

very individual and personal decision.

Ruth

PS I have the very best insurance and the guidelines for follow up

are the same as as your docs have recommended.

>

but is following the guidelines to save for the insurance or to save

our lives?!

>

> Michele

> xo

>

[Guest guest]

Thanks, Michele:

The campaign is the most vital one ever in my prayer life. All help is

appreciated.

The radiologist said today that I should have followup with my doctor, but

nothing was found on the mammogram and the ultrasound. Not sure what the

followup is for. I am to call the doctor tomorrow afternoon if I don't here

something by then.

The ultrasound of the right breast sure looked different than when they did my

left breast.

I hope you are doing better.

Keep on keeping on.

Jan K

Michele Gately tinkkerbelle2002@...> wrote:

Jan K...

You are the most compassionate person I have ever met.. as you are headed to

your appts. today on pins and needles yourself, you took the time to read my

email yesterday and offer your support and big HUGS!! Thank you my friend, for

who you are, and for being YOU! I have been thinking of you all day and hope to

results of your tests are as clean as a whistle!!

BTW, I'm on that prayer campaign with you g/f!!!!

Love

Michele

Jan Koelsch jkoelsch1950@...> wrote:

Michele:

No wonder you hate the facility and hate your doctor! I would, too. With your

history of reoccurence, what is she thinking?

I would find another doctor and facility. Being the best doing always mean being

the best for you.

Girlfriend, I am sending you large doses of caring and ((((((((((hugs)))))))))).

Jan K

Michele tinkkerbelle2002@...> wrote:

Hello ladies,

You have all been the best!! Thank you for all that I've been reading

and receiving from all of you for the past two weeks since I've

joined. I feel like you are all my new family!!

Here's how today's follow up appt. went.. and I really need input as

to whether or not this is normal procedure. Some of you long term

survivors might know the answers. I will put out my history again,

as I feel it is important before answering.

Diagnosed with b/c 2 areas in left breast 5/05. Had mastectomy, tram

flap reconstruction and hysterectomy as I am BRAC1 positive and also

triple negative. At this time I was Stage 1, grade 2, DCIS and

invasive ductal carcinoma... THEN in 7/06, local reoccurrence..same

left side 4 large nodes on pectoral muscle. Removed with clear

margins in 7/06. Two clean PET CTs in 8/06. No idea what staging

this was as I am just now realizing I have no pathology on this

surgery.

Here's what I've been presented with my last 2 visits with the

oncologist. We know I am high risk, with a close reoccurrence. She

does not believe in CT scans, MRI's etc. to look for reoccurrences.

She will maintain with 2-3 month visits and have yearly mammo and MRI

done on right breast. She says studies have been proven that by

scanning when unnecessary only to find something that isn't cancerous

causes more problems and anxiety. Whether the cancer is found at a

small size or when at a larger size, the life expectancy isn't any

different according to the statistics. This is Dana Farber hospital

in Boston, MA by the way, which is supposed to be ONE of the better

hospitals.

My problem with this is, if it can be seen on my liver, brain, lungs,

whatever, in a small portion, ok, we know it has mets and no longer

curable, but start treatment. Why do I want to wait till its

everywhere to find it again only to have a shitty quality of life

left as well as quantity. It is left with follow ups like I

mentioned and if anything appears out of the norm, aches, pains, etc.

that don't go away with advil, to contact her to further

investigate. Until then, enjoy life as it is, put this cancer thing

on the back burner and don't waste quality time.

I'm not sure if I'm having a hard time with this because it means

giving up control, or if its because I'm not comfortable with the

plan of action. Are many of you scanned regulary? Blood work done

regulary?.. What is protocol for this.. I feel like I'm lost and I

don't know where to turn or what I'm actually looking for.

Any feedback on how anyone else is being monitored would be greatly

appreciated as well as any comments to this posting.

Peace and Prayers to all...

Michele

Jan Koelsch

---------------------------------

Food fight? Enjoy some healthy debate

in the Yahoo! Answers Food & Drink Q&A.

[Guest guest]

HI Jan,

So far things so like they may be headed in a good direction?? When you say the

ultrasound looked different in the right than when they did the left, is that

for the better looking or worse looking?? Or just plain different altogther??

Keep us posted with the follow-up with the doctor or even if you get a phone

call..

Thinking of you! KOKO my friend!

Michele

Jan Koelsch jkoelsch1950@...> wrote:

Thanks, Michele:

The campaign is the most vital one ever in my prayer life. All help is

appreciated.

The radiologist said today that I should have followup with my doctor, but

nothing was found on the mammogram and the ultrasound. Not sure what the

followup is for. I am to call the doctor tomorrow afternoon if I don't here

something by then.

The ultrasound of the right breast sure looked different than when they did my

left breast.

I hope you are doing better.

Keep on keeping on.

Jan K

Michele Gately tinkkerbelle2002@...> wrote:

Jan K...

You are the most compassionate person I have ever met.. as you are headed to

your appts. today on pins and needles yourself, you took the time to read my

email yesterday and offer your support and big HUGS!! Thank you my friend, for

who you are, and for being YOU! I have been thinking of you all day and hope to

results of your tests are as clean as a whistle!!

BTW, I'm on that prayer campaign with you g/f!!!!

Love

Michele

Jan Koelsch jkoelsch1950@...> wrote:

Michele:

No wonder you hate the facility and hate your doctor! I would, too. With your

history of reoccurence, what is she thinking?

I would find another doctor and facility. Being the best doing always mean being

the best for you.

Girlfriend, I am sending you large doses of caring and ((((((((((hugs)))))))))).

Jan K

Michele tinkkerbelle2002@...> wrote:

Hello ladies,

You have all been the best!! Thank you for all that I've been reading

and receiving from all of you for the past two weeks since I've

joined. I feel like you are all my new family!!

Here's how today's follow up appt. went.. and I really need input as

to whether or not this is normal procedure. Some of you long term

survivors might know the answers. I will put out my history again,

as I feel it is important before answering.

Diagnosed with b/c 2 areas in left breast 5/05. Had mastectomy, tram

flap reconstruction and hysterectomy as I am BRAC1 positive and also

triple negative. At this time I was Stage 1, grade 2, DCIS and

invasive ductal carcinoma... THEN in 7/06, local reoccurrence..same

left side 4 large nodes on pectoral muscle. Removed with clear

margins in 7/06. Two clean PET CTs in 8/06. No idea what staging

this was as I am just now realizing I have no pathology on this

surgery.

Here's what I've been presented with my last 2 visits with the

oncologist. We know I am high risk, with a close reoccurrence. She

does not believe in CT scans, MRI's etc. to look for reoccurrences.

She will maintain with 2-3 month visits and have yearly mammo and MRI

done on right breast. She says studies have been proven that by

scanning when unnecessary only to find something that isn't cancerous

causes more problems and anxiety. Whether the cancer is found at a

small size or when at a larger size, the life expectancy isn't any

different according to the statistics. This is Dana Farber hospital

in Boston, MA by the way, which is supposed to be ONE of the better

hospitals.

My problem with this is, if it can be seen on my liver, brain, lungs,

whatever, in a small portion, ok, we know it has mets and no longer

curable, but start treatment. Why do I want to wait till its

everywhere to find it again only to have a shitty quality of life

left as well as quantity. It is left with follow ups like I

mentioned and if anything appears out of the norm, aches, pains, etc.

that don't go away with advil, to contact her to further

investigate. Until then, enjoy life as it is, put this cancer thing

on the back burner and don't waste quality time.

I'm not sure if I'm having a hard time with this because it means

giving up control, or if its because I'm not comfortable with the

plan of action. Are many of you scanned regulary? Blood work done

regulary?.. What is protocol for this.. I feel like I'm lost and I

don't know where to turn or what I'm actually looking for.

Any feedback on how anyone else is being monitored would be greatly

appreciated as well as any comments to this posting.

Peace and Prayers to all...

Michele

Jan Koelsch

---------------------------------

Food fight? Enjoy some healthy debate

in the Yahoo! Answers Food & Drink Q&A.

[Guest guest]

The ultrasound on the left breast was clearer, not so many lines and spots. The

tumor stood out like a sore thumb. I could tell from the face and demeanor of

the tech that something wasn't quite right.

The ultrasound for the right breast was full of lines and spots, it almost

looked solid white in places. And the tech immediately took the films to be

read by the radiologist. He was in the middle of a biopsy. She said that he

glanced at the films and said everything looked fine. That is why I had some

concern because I don't know how careful he read the films. She came back with

a big smile on her face after talking to him.

I am guessing a lot of scar tissue exists in that breast from the breast

reconstruction. I am hoping that is what we are looking at. Anyway, the breast

is somewhat sore today. That tech really knows how to smash a breast.

Please keep the mammo tech in our prayers. Her name is Joyce and she just

went through lung cancer surgery in late November. She didn't have to have

chemo and is doing pretty good. They are also watching her for colon cancer.

Cancer is everywhere these days.

I am trudging on every day, trying to maintain a positive attitude. Yesterday

caught me by surprise and so did the tears. But I knew I could come to my bosom

buddy sisters for support. I received it with much thanks to you and everyone

here. I don't ever want to find out what it is like to not have this " family " .

Thanks to all.

Jan K

Michele Gately tinkkerbelle2002@...> wrote:

HI Jan,

So far things so like they may be headed in a good direction?? When you say the

ultrasound looked different in the right than when they did the left, is that

for the better looking or worse looking?? Or just plain different altogther??

Keep us posted with the follow-up with the doctor or even if you get a phone

call..

Thinking of you! KOKO my friend!

Michele

Jan Koelsch jkoelsch1950@...> wrote:

Thanks, Michele:

The campaign is the most vital one ever in my prayer life. All help is

appreciated.

The radiologist said today that I should have followup with my doctor, but

nothing was found on the mammogram and the ultrasound. Not sure what the

followup is for. I am to call the doctor tomorrow afternoon if I don't here

something by then.

The ultrasound of the right breast sure looked different than when they did my

left breast.

I hope you are doing better.

Keep on keeping on.

Jan K

Michele Gately tinkkerbelle2002@...> wrote:

Jan K...

You are the most compassionate person I have ever met.. as you are headed to

your appts. today on pins and needles yourself, you took the time to read my

email yesterday and offer your support and big HUGS!! Thank you my friend, for

who you are, and for being YOU! I have been thinking of you all day and hope to

results of your tests are as clean as a whistle!!

BTW, I'm on that prayer campaign with you g/f!!!!

Love

Michele

Jan Koelsch jkoelsch1950@...> wrote:

Michele:

No wonder you hate the facility and hate your doctor! I would, too. With your

history of reoccurence, what is she thinking?

I would find another doctor and facility. Being the best doing always mean being

the best for you.

Girlfriend, I am sending you large doses of caring and ((((((((((hugs)))))))))).

Jan K

Michele tinkkerbelle2002@...> wrote:

Hello ladies,

You have all been the best!! Thank you for all that I've been reading

and receiving from all of you for the past two weeks since I've

joined. I feel like you are all my new family!!

Here's how today's follow up appt. went.. and I really need input as

to whether or not this is normal procedure. Some of you long term

survivors might know the answers. I will put out my history again,

as I feel it is important before answering.

Diagnosed with b/c 2 areas in left breast 5/05. Had mastectomy, tram

flap reconstruction and hysterectomy as I am BRAC1 positive and also

triple negative. At this time I was Stage 1, grade 2, DCIS and

invasive ductal carcinoma... THEN in 7/06, local reoccurrence..same

left side 4 large nodes on pectoral muscle. Removed with clear

margins in 7/06. Two clean PET CTs in 8/06. No idea what staging

this was as I am just now realizing I have no pathology on this

surgery.

Here's what I've been presented with my last 2 visits with the

oncologist. We know I am high risk, with a close reoccurrence. She

does not believe in CT scans, MRI's etc. to look for reoccurrences.

She will maintain with 2-3 month visits and have yearly mammo and MRI

done on right breast. She says studies have been proven that by

scanning when unnecessary only to find something that isn't cancerous

causes more problems and anxiety. Whether the cancer is found at a

small size or when at a larger size, the life expectancy isn't any

different according to the statistics. This is Dana Farber hospital

in Boston, MA by the way, which is supposed to be ONE of the better

hospitals.

My problem with this is, if it can be seen on my liver, brain, lungs,

whatever, in a small portion, ok, we know it has mets and no longer

curable, but start treatment. Why do I want to wait till its

everywhere to find it again only to have a shitty quality of life

left as well as quantity. It is left with follow ups like I

mentioned and if anything appears out of the norm, aches, pains, etc.

that don't go away with advil, to contact her to further

investigate. Until then, enjoy life as it is, put this cancer thing

on the back burner and don't waste quality time.

I'm not sure if I'm having a hard time with this because it means

giving up control, or if its because I'm not comfortable with the

plan of action. Are many of you scanned regulary? Blood work done

regulary?.. What is protocol for this.. I feel like I'm lost and I

don't know where to turn or what I'm actually looking for.

Any feedback on how anyone else is being monitored would be greatly

appreciated as well as any comments to this posting.

Peace and Prayers to all...

Michele

Jan Koelsch

---------------------------------

Food fight? Enjoy some healthy debate

in the Yahoo! Answers Food & Drink Q&A.

[Guest guest]

Jan you and Joyce are in my prayers.

Hugs

nne

Breast Cancer Patients Soul Mates for Life

http://www.geocities.com/chucky5741/breastcancerpatients.html

BreastCancerStories.com

http://www.breastcancerstories.com/content/view/433/161/

Angel Feather Loomer

www.angelfeatherloomer.blogspot.com

Check out my other ornaments at

www.geocities.com/chucky5741/bcornament.html

Lots of info and gifts at:

www.cancerclub.com

Re: My mind is scrambled, My heart is pounding, any

advice?

The ultrasound on the left breast was clearer, not so many lines and spots.

The tumor stood out like a sore thumb. I could tell from the face and demeanor

of the tech that something wasn't quite right.

The ultrasound for the right breast was full of lines and spots, it almost

looked solid white in places. And the tech immediately took the films to be read

by the radiologist. He was in the middle of a biopsy. She said that he glanced

at the films and said everything looked fine. That is why I had some concern

because I don't know how careful he read the films. She came back with a big

smile on her face after talking to him.

I am guessing a lot of scar tissue exists in that breast from the breast

reconstruction. I am hoping that is what we are looking at. Anyway, the breast

is somewhat sore today. That tech really knows how to smash a breast.

Please keep the mammo tech in our prayers. Her name is Joyce and she just went

through lung cancer surgery in late November. She didn't have to have chemo and

is doing pretty good. They are also watching her for colon cancer. Cancer is

everywhere these days.

I am trudging on every day, trying to maintain a positive attitude. Yesterday

caught me by surprise and so did the tears. But I knew I could come to my bosom

buddy sisters for support. I received it with much thanks to you and everyone

here. I don't ever want to find out what it is like to not have this " family " .

Thanks to all.

Jan K

Michele Gately tinkkerbelle2002@...> wrote:

HI Jan,

So far things so like they may be headed in a good direction?? When you say

the ultrasound looked different in the right than when they did the left, is

that for the better looking or worse looking?? Or just plain different

altogther??

Keep us posted with the follow-up with the doctor or even if you get a phone

call..

Thinking of you! KOKO my friend!

Michele

Jan Koelsch jkoelsch1950@...> wrote:

Thanks, Michele:

The campaign is the most vital one ever in my prayer life. All help is

appreciated.

The radiologist said today that I should have followup with my doctor, but

nothing was found on the mammogram and the ultrasound. Not sure what the

followup is for. I am to call the doctor tomorrow afternoon if I don't here

something by then.

The ultrasound of the right breast sure looked different than when they did my

left breast.

I hope you are doing better.

Keep on keeping on.

Jan K

Michele Gately tinkkerbelle2002@...> wrote:

Jan K...

You are the most compassionate person I have ever met.. as you are headed to

your appts. today on pins and needles yourself, you took the time to read my

email yesterday and offer your support and big HUGS!! Thank you my friend, for

who you are, and for being YOU! I have been thinking of you all day and hope to

results of your tests are as clean as a whistle!!

BTW, I'm on that prayer campaign with you g/f!!!!

Love

Michele

Jan Koelsch jkoelsch1950@...> wrote:

Michele:

No wonder you hate the facility and hate your doctor! I would, too. With your

history of reoccurence, what is she thinking?

I would find another doctor and facility. Being the best doing always mean

being the best for you.

Girlfriend, I am sending you large doses of caring and

((((((((((hugs)))))))))).

Jan K

Michele tinkkerbelle2002@...> wrote:

Hello ladies,

You have all been the best!! Thank you for all that I've been reading

and receiving from all of you for the past two weeks since I've

joined. I feel like you are all my new family!!

Here's how today's follow up appt. went.. and I really need input as

to whether or not this is normal procedure. Some of you long term

survivors might know the answers. I will put out my history again,

as I feel it is important before answering.

Diagnosed with b/c 2 areas in left breast 5/05. Had mastectomy, tram

flap reconstruction and hysterectomy as I am BRAC1 positive and also

triple negative. At this time I was Stage 1, grade 2, DCIS and

invasive ductal carcinoma... THEN in 7/06, local reoccurrence..same

left side 4 large nodes on pectoral muscle. Removed with clear

margins in 7/06. Two clean PET CTs in 8/06. No idea what staging

this was as I am just now realizing I have no pathology on this

surgery.

Here's what I've been presented with my last 2 visits with the

oncologist. We know I am high risk, with a close reoccurrence. She

does not believe in CT scans, MRI's etc. to look for reoccurrences.

She will maintain with 2-3 month visits and have yearly mammo and MRI

done on right breast. She says studies have been proven that by

scanning when unnecessary only to find something that isn't cancerous

causes more problems and anxiety. Whether the cancer is found at a

small size or when at a larger size, the life expectancy isn't any

different according to the statistics. This is Dana Farber hospital

in Boston, MA by the way, which is supposed to be ONE of the better

hospitals.

My problem with this is, if it can be seen on my liver, brain, lungs,

whatever, in a small portion, ok, we know it has mets and no longer

curable, but start treatment. Why do I want to wait till its

everywhere to find it again only to have a shitty quality of life

left as well as quantity. It is left with follow ups like I

mentioned and if anything appears out of the norm, aches, pains, etc.

that don't go away with advil, to contact her to further

investigate. Until then, enjoy life as it is, put this cancer thing

on the back burner and don't waste quality time.

I'm not sure if I'm having a hard time with this because it means

giving up control, or if its because I'm not comfortable with the

plan of action. Are many of you scanned regulary? Blood work done

regulary?.. What is protocol for this.. I feel like I'm lost and I

don't know where to turn or what I'm actually looking for.

Any feedback on how anyone else is being monitored would be greatly

appreciated as well as any comments to this posting.

Peace and Prayers to all...

Michele

Jan Koelsch

---------------------------------

Food fight? Enjoy some healthy debate

in the Yahoo! Answers Food & Drink Q&A.