Re:My mind is scrambled, My heart is pounding, any advice? FAO Michele

[Guest guest]

Hi Michele, My oncologist told me that their national oncologist organization

does NOT recommend scans following the completion of active treatment for the

same reasons that your doctor gave you. I came back at him with the same

rationale as you - I would rather know sooner than later if I have mets in other

locations even IF the mortality rates are the same.

As a result, we had a good thorough biomedical/ethical/financial discussion re

the issue of scans. As a general rule, his advice IS the same as the national

organization; HOWEVER, he will order scans within reason (except for a PET scan

which is ultrasensitive, horribly expensive, and discloses many false positives)

when the patient wants/needs some ongoing reassurance that new cancer activity

is not discernable.

My tumors (3 contiguous, multifocal) were Grade 3 (very aggressive) and based on

the size of them and the extent of my lymph node involvement etc, I was

classified as Stage IIIa. ALSO, I found my tumors during a monthly self-exam

but the mammogram film taken a week later does NOT show the tumors even though

they were over 1 cm when I found them. I have dense breasts even at age 58+,

and mammograms frequently miss tumors I'm learning when the woman has dense

breasts. Also a recent Canadian study showed that women with dense breast have

3 to 5 time the normal probability of having breast cancer. Having had it once

doesn't decrease my chances of having it again.

So we have jointly decided that I will be followed with an annual MRI as well as

a mammogram - they each provide different information.

Blue Cross Blue Shield, as a cost containment measure, recently announced that

it was going to require that doctor requests for patient scans be pre-approved

for their insureds. BCBS is a large insurer, so I doubt that they're the only

insurer moving in this direction. So it's probably going to be increasingly

difficult in the future for us bc survivors to get scans unless we're

symptomatic.

I intend to be pretty aggressive if necessary to get that extra follow-up. I've

heard it said that you should live every day as if it's your last, but frankly I

don't think that anyone can really do that - you need to plan and provide for

the future. If I knew that my future was likely going to be shorter rather than

longer because my cancer had metastasized, I'd be using a good chunk of that

retirement money that I've got set aside for my old age to go NOW to several of

the places I want to see in this lifetime rather than space them out over the

next dozen years.

Is that kind of how you feel about it too? ...

SharonK_MN

[Guest guest]

Sharon,

Thank you for the feedback, your the 2nd person so far (although I have tons

of mail to get through) thats had told me they have been told the same thing.

It still does not make it alright... How I feel, is sick to my stomach. I DO

NOT want to live in fear. I thought today would be a better day, but so far, it

isn't. I hate having things hang over my head and I just need to let this go

and I don't know how right now. I am on the same page as far as a mammo and

mri, however, why watch just a breast? Thats what bothers me.. I feel all the

other organs should be watched just as much as that other breast, they are all

at the same risk!! Maybe I am just plain crazy.. if not, I will be and I will

be dead from stress, not cancer!

Big Hugs!

Michele

" Sharon K. Kirts " kirts.s@...> wrote:

Hi Michele, My oncologist told me that their national oncologist

organization does NOT recommend scans following the completion of active

treatment for the same reasons that your doctor gave you. I came back at him

with the same rationale as you - I would rather know sooner than later if I have

mets in other locations even IF the mortality rates are the same.

As a result, we had a good thorough biomedical/ethical/financial discussion re

the issue of scans. As a general rule, his advice IS the same as the national

organization; HOWEVER, he will order scans within reason (except for a PET scan

which is ultrasensitive, horribly expensive, and discloses many false positives)

when the patient wants/needs some ongoing reassurance that new cancer activity

is not discernable.

My tumors (3 contiguous, multifocal) were Grade 3 (very aggressive) and based on

the size of them and the extent of my lymph node involvement etc, I was

classified as Stage IIIa. ALSO, I found my tumors during a monthly self-exam but

the mammogram film taken a week later does NOT show the tumors even though they

were over 1 cm when I found them. I have dense breasts even at age 58+, and

mammograms frequently miss tumors I'm learning when the woman has dense breasts.

Also a recent Canadian study showed that women with dense breast have 3 to 5

time the normal probability of having breast cancer. Having had it once doesn't

decrease my chances of having it again.

So we have jointly decided that I will be followed with an annual MRI as well as

a mammogram - they each provide different information.

Blue Cross Blue Shield, as a cost containment measure, recently announced that

it was going to require that doctor requests for patient scans be pre-approved

for their insureds. BCBS is a large insurer, so I doubt that they're the only

insurer moving in this direction. So it's probably going to be increasingly

difficult in the future for us bc survivors to get scans unless we're

symptomatic.

I intend to be pretty aggressive if necessary to get that extra follow-up. I've

heard it said that you should live every day as if it's your last, but frankly I

don't think that anyone can really do that - you need to plan and provide for

the future. If I knew that my future was likely going to be shorter rather than

longer because my cancer had metastasized, I'd be using a good chunk of that

retirement money that I've got set aside for my old age to go NOW to several of

the places I want to see in this lifetime rather than space them out over the

next dozen years.

Is that kind of how you feel about it too? ...

SharonK_MN

[Guest guest]

Michele,

If you feel this strongly about having other tests I would definitely talk to

you dr about it. Are you on any anti anxiety drugs? You 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: Re:My mind is scrambled, My heart is pounding,

any advice? FAO Michele

Sharon,

Thank you for the feedback, your the 2nd person so far (although I have tons

of mail to get through) thats had told me they have been told the same thing. It

still does not make it alright... How I feel, is sick to my stomach. I DO NOT

want to live in fear. I thought today would be a better day, but so far, it

isn't. I hate having things hang over my head and I just need to let this go and

I don't know how right now. I am on the same page as far as a mammo and mri,

however, why watch just a breast? Thats what bothers me.. I feel all the other

organs should be watched just as much as that other breast, they are all at the

same risk!! Maybe I am just plain crazy.. if not, I will be and I will be dead

from stress, not cancer!

Big Hugs!

Michele

" Sharon K. Kirts " kirts.s@...> wrote:

Hi Michele, My oncologist told me that their national oncologist organization

does NOT recommend scans following the completion of active treatment for the

same reasons that your doctor gave you. I came back at him with the same

rationale as you - I would rather know sooner than later if I have mets in other

locations even IF the mortality rates are the same.

As a result, we had a good thorough biomedical/ethical/financial discussion re

the issue of scans. As a general rule, his advice IS the same as the national

organization; HOWEVER, he will order scans within reason (except for a PET scan

which is ultrasensitive, horribly expensive, and discloses many false positives)

when the patient wants/needs some ongoing reassurance that new cancer activity

is not discernable.

My tumors (3 contiguous, multifocal) were Grade 3 (very aggressive) and based

on the size of them and the extent of my lymph node involvement etc, I was

classified as Stage IIIa. ALSO, I found my tumors during a monthly self-exam but

the mammogram film taken a week later does NOT show the tumors even though they

were over 1 cm when I found them. I have dense breasts even at age 58+, and

mammograms frequently miss tumors I'm learning when the woman has dense breasts.

Also a recent Canadian study showed that women with dense breast have 3 to 5

time the normal probability of having breast cancer. Having had it once doesn't

decrease my chances of having it again.

So we have jointly decided that I will be followed with an annual MRI as well

as a mammogram - they each provide different information.

Blue Cross Blue Shield, as a cost containment measure, recently announced that

it was going to require that doctor requests for patient scans be pre-approved

for their insureds. BCBS is a large insurer, so I doubt that they're the only

insurer moving in this direction. So it's probably going to be increasingly

difficult in the future for us bc survivors to get scans unless we're

symptomatic.

I intend to be pretty aggressive if necessary to get that extra follow-up.

I've heard it said that you should live every day as if it's your last, but

frankly I don't think that anyone can really do that - you need to plan and

provide for the future. If I knew that my future was likely going to be shorter

rather than longer because my cancer had metastasized, I'd be using a good chunk

of that retirement money that I've got set aside for my old age to go NOW to

several of the places I want to see in this lifetime rather than space them out

over the next dozen years.

Is that kind of how you feel about it too? ...

SharonK_MN

[Guest guest]

nne,

Plenty of anxiety drugs on board here!! Not to worry there.. which is scary to

think that I can take those and still get this crazed!! Sad but true!

Thanks for your concerns and hugs,

Love

Michele

& nne Svihlik moochie1@...> wrote:

Michele,

If you feel this strongly about having other tests I would definitely talk to

you dr about it. Are you on any anti anxiety drugs? You 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: Re:My mind is scrambled, My heart is pounding, any

advice? FAO Michele

Sharon,

Thank you for the feedback, your the 2nd person so far (although I have tons of

mail to get through) thats had told me they have been told the same thing. It

still does not make it alright... How I feel, is sick to my stomach. I DO NOT

want to live in fear. I thought today would be a better day, but so far, it

isn't. I hate having things hang over my head and I just need to let this go and

I don't know how right now. I am on the same page as far as a mammo and mri,

however, why watch just a breast? Thats what bothers me.. I feel all the other

organs should be watched just as much as that other breast, they are all at the

same risk!! Maybe I am just plain crazy.. if not, I will be and I will be dead

from stress, not cancer!

Big Hugs!

Michele

" Sharon K. Kirts " kirts.s@...> wrote:

Hi Michele, My oncologist told me that their national oncologist organization

does NOT recommend scans following the completion of active treatment for the

same reasons that your doctor gave you. I came back at him with the same

rationale as you - I would rather know sooner than later if I have mets in other

locations even IF the mortality rates are the same.

As a result, we had a good thorough biomedical/ethical/financial discussion re

the issue of scans. As a general rule, his advice IS the same as the national

organization; HOWEVER, he will order scans within reason (except for a PET scan

which is ultrasensitive, horribly expensive, and discloses many false positives)

when the patient wants/needs some ongoing reassurance that new cancer activity

is not discernable.

My tumors (3 contiguous, multifocal) were Grade 3 (very aggressive) and based on

the size of them and the extent of my lymph node involvement etc, I was

classified as Stage IIIa. ALSO, I found my tumors during a monthly self-exam but

the mammogram film taken a week later does NOT show the tumors even though they

were over 1 cm when I found them. I have dense breasts even at age 58+, and

mammograms frequently miss tumors I'm learning when the woman has dense breasts.

Also a recent Canadian study showed that women with dense breast have 3 to 5

time the normal probability of having breast cancer. Having had it once doesn't

decrease my chances of having it again.

So we have jointly decided that I will be followed with an annual MRI as well as

a mammogram - they each provide different information.

Blue Cross Blue Shield, as a cost containment measure, recently announced that

it was going to require that doctor requests for patient scans be pre-approved

for their insureds. BCBS is a large insurer, so I doubt that they're the only

insurer moving in this direction. So it's probably going to be increasingly

difficult in the future for us bc survivors to get scans unless we're

symptomatic.

I intend to be pretty aggressive if necessary to get that extra follow-up. I've

heard it said that you should live every day as if it's your last, but frankly I

don't think that anyone can really do that - you need to plan and provide for

the future. If I knew that my future was likely going to be shorter rather than

longer because my cancer had metastasized, I'd be using a good chunk of that

retirement money that I've got set aside for my old age to go NOW to several of

the places I want to see in this lifetime rather than space them out over the

next dozen years.

Is that kind of how you feel about it too? ...

SharonK_MN

[Guest guest]

Michele:

I happened to print off the first post that you ever posted. I remember

thinking how brave and courageous this woman is. She has been through so much

and is so positive. What a great person! And I was right, you are a great

person and very courageous and you will get through this just like you made it

through all the other " stuff " that you have been through.

We all experience things the doctor tells us in different ways, depending on

the day of the week and the time of day. So....take a deep breath and breathe.

And then do it again and again.

I pray that God's peace will permeate your very being and give you comfort.

What cancer does it seems is give us a different perspective on lots of things.

I agree that everything should be considered, given your background. Maybe a

second opinion is in order.

Keep us posted.

Jan K

Michele Gately tinkkerbelle2002@...> wrote:

Sharon,

Thank you for the feedback, your the 2nd person so far (although I have tons of

mail to get through) thats had told me they have been told the same thing. It

still does not make it alright... How I feel, is sick to my stomach. I DO NOT

want to live in fear. I thought today would be a better day, but so far, it

isn't. I hate having things hang over my head and I just need to let this go and

I don't know how right now. I am on the same page as far as a mammo and mri,

however, why watch just a breast? Thats what bothers me.. I feel all the other

organs should be watched just as much as that other breast, they are all at the

same risk!! Maybe I am just plain crazy.. if not, I will be and I will be dead

from stress, not cancer!

Big Hugs!

Michele

" Sharon K. Kirts " kirts.s@...> wrote:

Hi Michele, My oncologist told me that their national oncologist organization

does NOT recommend scans following the completion of active treatment for the

same reasons that your doctor gave you. I came back at him with the same

rationale as you - I would rather know sooner than later if I have mets in other

locations even IF the mortality rates are the same.

As a result, we had a good thorough biomedical/ethical/financial discussion re

the issue of scans. As a general rule, his advice IS the same as the national

organization; HOWEVER, he will order scans within reason (except for a PET scan

which is ultrasensitive, horribly expensive, and discloses many false positives)

when the patient wants/needs some ongoing reassurance that new cancer activity

is not discernable.

My tumors (3 contiguous, multifocal) were Grade 3 (very aggressive) and based on

the size of them and the extent of my lymph node involvement etc, I was

classified as Stage IIIa. ALSO, I found my tumors during a monthly self-exam but

the mammogram film taken a week later does NOT show the tumors even though they

were over 1 cm when I found them. I have dense breasts even at age 58+, and

mammograms frequently miss tumors I'm learning when the woman has dense breasts.

Also a recent Canadian study showed that women with dense breast have 3 to 5

time the normal probability of having breast cancer. Having had it once doesn't

decrease my chances of having it again.

So we have jointly decided that I will be followed with an annual MRI as well as

a mammogram - they each provide different information.

Blue Cross Blue Shield, as a cost containment measure, recently announced that

it was going to require that doctor requests for patient scans be pre-approved

for their insureds. BCBS is a large insurer, so I doubt that they're the only

insurer moving in this direction. So it's probably going to be increasingly

difficult in the future for us bc survivors to get scans unless we're

symptomatic.

I intend to be pretty aggressive if necessary to get that extra follow-up. I've

heard it said that you should live every day as if it's your last, but frankly I

don't think that anyone can really do that - you need to plan and provide for

the future. If I knew that my future was likely going to be shorter rather than

longer because my cancer had metastasized, I'd be using a good chunk of that

retirement money that I've got set aside for my old age to go NOW to several of

the places I want to see in this lifetime rather than space them out over the

next dozen years.

Is that kind of how you feel about it too? ...

SharonK_MN

[Guest guest]

> Hi Michele, My oncologist told me that their national oncologist

organization does

NOT recommend scans following the completion of active treatment for the same

reasons

that your doctor gave you. I came back at him with the same rationale as you - I

would

rather know sooner than later if I have mets in other locations even IF the

mortality rates

are the same.

>

> As a result, we had a good thorough biomedical/ethical/financial discussion re

the issue

of scans. As a general rule, his advice IS the same as the national

organization; HOWEVER,

he will order scans within reason (except for a PET scan which is

ultrasensitive, horribly

expensive, and discloses many false positives) when the patient wants/needs some

ongoing reassurance that new cancer activity is not discernable.

>

> My tumors (3 contiguous, multifocal) were Grade 3 (very aggressive) and based

on the

size of them and the extent of my lymph node involvement etc, I was classified

as Stage

IIIa. ALSO, I found my tumors during a monthly self-exam but the mammogram film

taken

a week later does NOT show the tumors even though they were over 1 cm when I

found

them. I have dense breasts even at age 58+, and mammograms frequently miss

tumors

I'm learning when the woman has dense breasts. Also a recent Canadian study

showed

that women with dense breast have 3 to 5 time the normal probability of having

breast

cancer. Having had it once doesn't decrease my chances of having it again.

>

> So we have jointly decided that I will be followed with an annual MRI as well

as a

mammogram - they each provide different information.

>

> Blue Cross Blue Shield, as a cost containment measure, recently announced that

it was

going to require that doctor requests for patient scans be pre-approved for

their insureds.

BCBS is a large insurer, so I doubt that they're the only insurer moving in this

direction. So

it's probably going to be increasingly difficult in the future for us bc

survivors to get scans

unless we're symptomatic.

>

> I intend to be pretty aggressive if necessary to get that extra follow-up.

I've heard it said

that you should live every day as if it's your last, but frankly I don't think

that anyone can

really do that - you need to plan and provide for the future. If I knew that my

future was

likely going to be shorter rather than longer because my cancer had

metastasized, I'd be

using a good chunk of that retirement money that I've got set aside for my old

age to go

NOW to several of the places I want to see in this lifetime rather than space

them out over

the next dozen years.

>

> Is that kind of how you feel about it too? ...

> SharonK_MN

>

>