New survey: Who is triple negative?

[Guest guest]

Lately I have seen a few posts concerning triple negative breast

cancer. Maybe we could conduct a survey to see who is a triple neggy (

as my doctor calls it) Please respond! Thanks!

Carol from Ohio/ triple negative

[Guest guest]

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New survey: Who is triple negative?

Lately I have seen a few posts concerning triple negative breast

cancer. Maybe we could conduct a survey to see who is a triple neggy (

as my doctor calls it) Please respond! Thanks!

Carol from Ohio/ triple negative

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[Guest guest]

Michele from MA, triple -

lazeee3 lazeee3@...> wrote: Lately I have seen a few posts

concerning triple negative breast

cancer. Maybe we could conduct a survey to see who is a triple neggy (

as my doctor calls it) Please respond! Thanks!

Carol from Ohio/ triple negative

[Guest guest]

Me, too.

Ann

Lately I have seen a few

posts concerning triple negative breast

> cancer. Maybe we could conduct a survey to see who is a triple

neggy (

> as my doctor calls it) Please respond! Thanks!

>

> Carol from Ohio/ triple negative

>

>

>

>

>

>

>

[Guest guest]

Don't laugh....

what does triple negative mean?

Is it good or bad?

Rose

>

> Lately I have seen a few posts concerning triple negative breast

> cancer. Maybe we could conduct a survey to see who is a triple neggy

(

> as my doctor calls it) Please respond! Thanks!

>

> Carol from Ohio/ triple negative

>

[Guest guest]

>

> Don't laugh....

This is supposed to be a safe place to learn things. I'm sure our mod

would chastise anyone who ridiculed someone who had questions. Even

the docs don't know all the answers.

> what does triple negative mean?

The pathology looks at various attributes the cancer cells have: over

the last several decades, the docs have learned that cancer isn't a

single disease. It's more like a group of related diseases caused by

out-of-control cell growth. Some of the attributes cancer cells have

is what 'feeds' it. Triple negative refers to the cancer cells having

no estrogen receptors, progesterone receptors, or HER2, or ER-/PR-

/HER2-.

About 70% of BCs are ER+ - that is, they are estrogen-receptor

positive. These are the ones where you see the argument about eating

soy, taking HRT, milk by cows fed hormones, etc. because of the

estrogens. ER+ cancer cells are fed by the estrogens.

These days, a lot of therapy is targeted to which type of cell you

have. For example, women who are ER+ will often be on tamoxifen after

chemo, whereas those who are ER- usually won't be.

> Is it good or bad?

Is triple-negative good or bad? It's mixed. I've read that it's not

good in the short-term - the 5-year survival rate is somewhat lower

than for non-triple-negative. However, beyond 5 years, the survival

rates between the two even out.

If I remember right, this information is either on www.cancer.gov, or

the website for the national cancer society. You can do a websearch

on 'triple negative breast cancer' and all sorts of sites should come

up. I've checked using Yahoo and Google search, but I haven't tried

MSN or AOL or Ask.

Hope this helped.

Ann

PS - I have all the academic contacts, but I don't have the practical

answers - like how long does it take to recover full use of my arms,

when can I drive, etc. That's why I'm on this group - don't laugh ;-)

[Guest guest]

In a message dated 1/30/2007 9:22:25 A.M. Eastern Standard Time,

denisempinheiro@... writes:

Many times I wished my BC wasn't hormone positive, specially because I am

not going to go through the 5 years of tamoxifen.

Mine is Estrogen receptive. I started taking Tamoxifen in June. I am pre

menopausal. Anyone out there take Tamoxifen and have it put you into

menopause? My ONC told me that if it didn't happen, I could have my ovaries

zapped

to stop their functioning, be given a series of injections to stop my ovaries

from working or a hysterectomy. Anyone go through any of this. As of right

now, my cycles are still very normal.

[Guest guest]

I am also triple negative

>

> Lately I have seen a few posts concerning triple negative breast

> cancer. Maybe we could conduct a survey to see who is a triple neggy

(

> as my doctor calls it) Please respond! Thanks!

>

> Carol from Ohio/ triple negative

>

[Guest guest]

Rose,

I'm not sure its good or bad... In the long run, I think we all catch up to

each other just in different forms of treatment. Basically a triple neg result

means that we cannot rely on tamoxafin or hormones, etc for the 5 year stretch

because our body would reject them. So, there are pro's and con's to everything

I think.. I believe it was Ann or Ruth who explained in well in a previous

email..

Peace and Prayers,

Michele

Rose rosemunch@...> wrote:

Don't laugh....

what does triple negative mean?

Is it good or bad?

Rose

>

> Lately I have seen a few posts concerning triple negative breast

> cancer. Maybe we could conduct a survey to see who is a triple neggy

(

> as my doctor calls it) Please respond! Thanks!

>

> Carol from Ohio/ triple negative

>

[Guest guest]

Acutally, women who are triple negative cannot use those drugs because they

won't do any good, not because the body regects them. It is like using

antibiotics for viral diseases, no good come from this. The good side of this is

that you can carry on your life as before, without decisions as removing the

ovaries, or going into premature menopause. Many times I wished my BC wasn't

hormone positive, specially because I am not going to go through the 5 years of

tamoxifen.

Hugs

Re: Re: New survey: Who is triple negative?

Rose,

I'm not sure its good or bad... In the long run, I think we all catch up to each

other just in different forms of treatment. Basically a triple neg result means

that we cannot rely on tamoxafin or hormones, etc for the 5 year stretch because

our body would reject them. So, there are pro's and con's to everything I

think.. I believe it was Ann or Ruth who explained in well in a previous email..

Peace and Prayers,

Michele

Rose wrote:

Don't laugh....

what does triple negative mean?

Is it good or bad?

Rose

>

> Lately I have seen a few posts concerning triple negative breast

> cancer. Maybe we could conduct a survey to see who is a triple neggy

(

> as my doctor calls it) Please respond! Thanks!

>

> Carol from Ohio/ triple negative

>

[Guest guest]

,

However, in triple neg women, most of us remove as much as we can because

those are the precautions the oncologists want to take. We are at a much higher

risk for reoccurence. I did not take my other breast, but I did do a complete

hysterectomy.

Michele

Pinheiro denisempinheiro@...> wrote:

Acutally, women who are triple negative cannot use those drugs because

they won't do any good, not because the body regects them. It is like using

antibiotics for viral diseases, no good come from this. The good side of this is

that you can carry on your life as before, without decisions as removing the

ovaries, or going into premature menopause. Many times I wished my BC wasn't

hormone positive, specially because I am not going to go through the 5 years of

tamoxifen.

Hugs

Re: Re: New survey: Who is triple negative?

Rose,

I'm not sure its good or bad... In the long run, I think we all catch up to each

other just in different forms of treatment. Basically a triple neg result means

that we cannot rely on tamoxafin or hormones, etc for the 5 year stretch because

our body would reject them. So, there are pro's and con's to everything I

think.. I believe it was Ann or Ruth who explained in well in a previous email..

Peace and Prayers,

Michele

Rose wrote:

Don't laugh....

what does triple negative mean?

Is it good or bad?

Rose

>

> Lately I have seen a few posts concerning triple negative breast

> cancer. Maybe we could conduct a survey to see who is a triple neggy

(

> as my doctor calls it) Please respond! Thanks!

>

> Carol from Ohio/ triple negative

>

[Guest guest]

I'm just taking Tamoxifen until I can get my ovaries removed. I was

going to wait until I was about 50 (I'm 45 now) to have this done,

but since my breast cancer is es+, I'm doing it now. Ovarian cancer

runs in my family, so this seems to be the best option for me.

After my surgery, I will be taking whatever drug they give to post

menopausal women.

>

>

> In a message dated 1/30/2007 9:22:25 A.M. Eastern Standard Time,

> denisempinheiro@... writes:

>

> Many times I wished my BC wasn't hormone positive, specially

because I am

> not going to go through the 5 years of tamoxifen.

>

>

> Mine is Estrogen receptive. I started taking Tamoxifen in June.

I am pre

> menopausal. Anyone out there take Tamoxifen and have it put you

into

> menopause? My ONC told me that if it didn't happen, I could have

my ovaries zapped

> to stop their functioning, be given a series of injections to

stop my ovaries

> from working or a hysterectomy. Anyone go through any of this.

As of right

> now, my cycles are still very normal.

>

>

>

>

[Guest guest]

Hi -

I am both estrogen and progesterone positive and HER2 +. I just started

tamoxifen this week. I was told that tamoxifen may or may not put you

into menopause. My oncologist told me that some patients went into

what they thought was menopause with tamoxifen but when they went off

it, their periods came back. She told me if my periods stop, she would

have me stop the tamoxifen to make sure it is menopause and not drug

induced. If it was not drug inducted and the real thing, she would then

take me off tamoxifen and have me go on something else. The doctor never

mentioned about stopping my ovary function. However, I have fibroids

and if my periods get worse with tamoxifen, I could have an eblation to

have the fibroids removed. Guess I have to wait and see what happens.

You still produce estrogen after the ovaries stop functioning and the

tamoxifen is an estrogen blocker and prevents that hormone from entering

the breast inwhich the cancer feeds on. Unfortunately when you are

premenapausal it is the only choice. There are more choices for

post-menapausal women. I hope what I wrote makes sense.

Hugs

Eileen

>

>

> In a message dated 1/30/2007 9:22:25 A.M. Eastern Standard Time,

> denisempinheiro@... writes:

>

> Many times I wished my BC wasn't hormone positive, specially because I

am

> not going to go through the 5 years of tamoxifen.

>

>

> Mine is Estrogen receptive. I started taking Tamoxifen in June. I am

pre

> menopausal. Anyone out there take Tamoxifen and have it put you into

> menopause? My ONC told me that if it didn't happen, I could have my

ovaries zapped

> to stop their functioning, be given a series of injections to stop my

ovaries

> from working or a hysterectomy. Anyone go through any of this. As of

right

> now, my cycles are still very normal.

>

>

>

>

[Guest guest]

Hi , i am 33 years old, my oncologist want to remove my ovaries, because my

bc was hormono-dependent and since i am going to have a mastectomy in the other

side(i already had in the right side) i was planning to do it the same day, but

now i am thinking that maybe i have a chance to frezze my eggs and be pregnant

when i finish treatment or can avoid that surgery with a new treatment or

whatever, thing is that i am afraid to do that because is no way to come back

and i deserve to at least try to have a baby.

Well, take care and i hope everything will be fine with us.

Anggy.

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

Any questions? Get answers on any topic at Yahoo! Answers. Try it now.

[Guest guest]

Interesting....

I wonder why they would take this precaution if the cancer is not hormone

related. Just out of curiosity I would like to know their reasoning.

Re: Re: New survey: Who is triple negative?

Rose,

I'm not sure its good or bad... In the long run, I think we all catch up to each

other just in different forms of treatment. Basically a triple neg result means

that we cannot rely on tamoxafin or hormones, etc for the 5 year stretch because

our body would reject them. So, there are pro's and con's to everything I

think.. I believe it was Ann or Ruth who explained in well in a previous email..

Peace and Prayers,

Michele

Rose wrote:

Don't laugh....

what does triple negative mean?

Is it good or bad?

Rose

>

> Lately I have seen a few posts concerning triple negative breast

> cancer. Maybe we could conduct a survey to see who is a triple neggy

(

> as my doctor calls it) Please respond! Thanks!

>

> Carol from Ohio/ triple negative

>

[Guest guest]

>

> ,

>

> However, in triple neg women, most of us remove as much as we

can because those are the precautions the oncologists want to take.

We are at a much higher risk for reoccurence. I did not take my

other breast, but I did do a complete hysterectomy.

> Michele

>

There might also be something else involved. Because of my father's

having had BC and my being triple neg, my surgeon suspected a

enetic mutation, so she had me tested. A lot of BRCA1 people have

triple-negative cancers. If you are BRCA1, then the chance of

recurrence in the other breast is quite high, and the chance of

ovarian cancer, for which there is no good screening as there is now

for BC, is also very high. That's my I'm going through bilateral

mastectomy and oophorectomy next week.

It could be that the doc doesn't want to be bothered with going

through the testing, or feels that putting you through the tests

will mark you with the insurance companies, and so is doing this

because of the chance you might be one of the ones with the

mutation.

Or, it could also be that they don't read the whole journal article

or they only remember pieces. Remember that most of the time the

articles are couched in very cautionary language. I'm not up

enough on the literature to know if non BRCA1 triple negs are also

more likely to suffer increased rates of these cancers.

Ann

[Guest guest]

: why you don't going tot ake the 5 years tamoxifen?, i am going to talk

with my oncologist tomorrow, i want him to reffer me to a gynecologist

oncologist to tell me all my options and make a best decision, eitherway he want

to remove my ovaries when i finish the herceptin and i don't sure what else.

Hugs, Anggy.

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

8:00? 8:25? 8:40? Find a flick in no time

with theYahoo! Search movie showtime shortcut.

[Guest guest]

,

I agree, I think the same thing, but I know when I had a reoccurence a year

after, all the doctors kept saying was thank goodness you took those ovaries...

I see my onc on Monday, I've been jotting down lots of questions from things

I've learned here.. I will keep you posted on this one!

Michele

Pinheiro denisempinheiro@...> wrote:

Interesting....

I wonder why they would take this precaution if the cancer is not hormone

related. Just out of curiosity I would like to know their reasoning.

Re: Re: New survey: Who is triple negative?

Rose,

I'm not sure its good or bad... In the long run, I think we all catch up to each

other just in different forms of treatment. Basically a triple neg result means

that we cannot rely on tamoxafin or hormones, etc for the 5 year stretch because

our body would reject them. So, there are pro's and con's to everything I

think.. I believe it was Ann or Ruth who explained in well in a previous email..

Peace and Prayers,

Michele

Rose wrote:

Don't laugh....

what does triple negative mean?

Is it good or bad?

Rose

>

> Lately I have seen a few posts concerning triple negative breast

> cancer. Maybe we could conduct a survey to see who is a triple neggy

(

> as my doctor calls it) Please respond! Thanks!

>

> Carol from Ohio/ triple negative

>

[Guest guest]

I am the person who began this question on triple negs a few days ago

and wow have I learned a lot from it! Some of you have stated that

thier docs suggested mastectomy if you are a triple negative. When I

was diagnosed, the surgeon told me that I didn't need a mastectomy,

and that having one would not add one minute to my life! I listened

to him and really didn't think too much about mastectomy when the

margins came back clear and there was no node involvement. I was

however, told I should have adjuvent chemo and radiation, which I

did. I was also tested for the BRACA genes and found to have the

BRCA1 gene mutation. Therefore, I was told I should have a preventive

hysterectomy, to lower my odds of getting ovarian cancer, which has

higher risk in women with either BRCA gene. Last Monday I had the

hysterectomy and really thought that was the last step in beating

this breast cnacer monster. Now I am wondering if I should have had

the mastectomy too. I had already decided that if EVER they found

another tumor, I ws going to have a double and get it over with. Now

I am a little scared that I made the wrong choice initially. What do

you ladies think? And, what did the doctors tell all you triple

negatives? I am amazed that there are so many of us when I was told

it was rare.

Carol from Ohio

> >

> > However, in triple neg women, most of us remove as much as we

> can because those are the precautions the oncologists want to

take.

> We are at a much higher risk for reoccurence. I did not take my

> other breast, but I did do a complete hysterectomy.

> > Michele

> >

> There might also be something else involved. Because of my

father's

> having had BC and my being triple neg, my surgeon suspected a

> enetic mutation, so she had me tested. A lot of BRCA1 people have

> triple-negative cancers. If you are BRCA1, then the chance of

> recurrence in the other breast is quite high, and the chance of

> ovarian cancer, for which there is no good screening as there is

now

> for BC, is also very high. That's my I'm going through bilateral

> mastectomy and oophorectomy next week.

> It could be that the doc doesn't want to be bothered with going

> through the testing, or feels that putting you through the tests

> will mark you with the insurance companies, and so is doing this

> because of the chance you might be one of the ones with the

> mutation.

>

> Or, it could also be that they don't read the whole journal article

> or they only remember pieces. Remember that most of the time the

> articles are couched in very cautionary language. I'm not up

> enough on the literature to know if non BRCA1 triple negs are also

> more likely to suffer increased rates of these cancers.

>

> Ann

>

[Guest guest]

>

> I listened

> to him and really didn't think too much about mastectomy when the

> margins came back clear and there was no node involvement. I was

> however, told I should have adjuvent chemo and radiation, which I

> did. I was also tested for the BRACA genes and found to have the

> BRCA1 gene mutation. Therefore, I was told I should have a

preventive

> hysterectomy, to lower my odds of getting ovarian cancer, which

has

> higher risk in women with either BRCA gene.

And I'm one of the people who replied that I was getting 'the works'

next week.

First off, I am having a mastectomy anyway because I have *two*

sites in one breast. Even though I'm far from small, the surgeon

basically said two lumpectomies wouldn't work. I originally thought

I would have a single mastectomy, and the surgeon said she'd push

for the oophorectomy if I was BRCA1 because of the high chance of

ovarian cancer that is hard to detect early. She told me if I chose

to keep the now-healthy breast, she wasn't so fearful for me,

because there are good screening tools for BC. I am the one who

chose to do the whole shebang, given the numbers. I just don't like

the idea of having yet another 8-9 months should the BC recur in the

other breast, and the chances of that are higher than for most BC

patients.

> Last Monday I had the

> hysterectomy and really thought that was the last step in beating

> this breast cnacer monster. Now I am wondering if I should have

had

> the mastectomy too.

Now, to argue on the other side, and hopefully make you feel better

about your decision. My older sister was diagnosed with BC 7 years

ago, also triple-neg, and probably BRCA1+ given that I am and my

father must be. She had a lumpectomy, and chemo/radiation. She had

at least 1 node involved as well. She'd had a hysterectomy

afterwards for other reasons. But she *is* doing well - no

recurrence so far in either breast. She didn't go haywire over my

news about BRCA1 and rush out to make an appt for a bilateral

mastectomy.

Also my father has not had recurrence of BC after 10 years. His

recent bout with larynx cancer is clearly due to his smoking

history, even though he quit years ago, and is not a metastasis of

the BC.

> I had already decided that if EVER they found

> another tumor, I ws going to have a double and get it over with.

Now

> I am a little scared that I made the wrong choice initially. What

do

> you ladies think? And, what did the doctors tell all you triple

> negatives? I am amazed that there are so many of us when I was

told

> it was rare.

Did they give you a brochure with your risks when you got your BRCA1

results back? Did a counsellor sit down and talk with you about it?

If not, maybe you should dig up those results and find yourself

someone who can help you make your decision.

I am going through the decision I made mainly because I live alone

and have to work to support myself. I just want to get it over with

at once rather than go through the possibility of being on

disability again. I'm almost 55, was laid off for a couple years at

age 50 and am still trying to recover from that financially. My

personal decision is that I can't afford either the time or the

money to deal with surgery and chemo more than once if I can do

something to prevent it. On the other hand, as I said, my father

and sister had the standard treatment and are doing well after at

least 7 years.

Good luck with your decision, and most of all, don't drive yourself

nuts over it. See which course of action you feel better about, and

go with that.

Best,

Ann

[Guest guest]

Excuse me Ann, did you had an oophorectomy or hysterectomy? because i am

thinking in both possibilities.

Thanks for your time Ann, and take care.

Anggy.

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

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[Guest guest]

Carol, how i see, all the case are differents, you could ask for a second

opinion if you want, but if your doctor did't reccomend you to to have a

mastectomy must be because you don't need it.

Take care, Anggy.

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

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[Guest guest]

Hi Carol, I was told by my surgeon that if it were his wife he would

have her do a lumpectomy so I did, found one postive node, did chemo

and rads. I'm three years out from treatment and doing good.

I have a heavy family history, gm died young of bc, mother died young

of ovarian cancer, daughter diagnosed recently but haven't had the

brca test done but did have a abdominal complete hysterectomy in

December for other reasons. I had consulted three docs, one of whom

was a GYN/ONC and he said a hysterectomy would significantly decrease

my chances of ovarian cancer w/my history and my family.

Have you read about the news on Nestin, the new marker they think

they've found for triple negs?

Pam

>

> I am the person who began this question on triple negs a few days

ago

> and wow have I learned a lot from it! Some of you have stated that

> thier docs suggested mastectomy if you are a triple negative. When

I

> was diagnosed, the surgeon told me that I didn't need a mastectomy,

> and that having one would not add one minute to my life! I listened

> to him and really didn't think too much about mastectomy when the

> margins came back clear and there was no node involvement. I was

> however, told I should have adjuvent chemo and radiation, which I

> did. I was also tested for the BRACA genes and found to have the

> BRCA1 gene mutation. Therefore, I was told I should have a

preventive

> hysterectomy, to lower my odds of getting ovarian cancer, which has

> higher risk in women with either BRCA gene. Last Monday I had the

> hysterectomy and really thought that was the last step in beating

> this breast cnacer monster. Now I am wondering if I should have had

> the mastectomy too. I had already decided that if EVER they found

> another tumor, I ws going to have a double and get it over with.

Now

> I am a little scared that I made the wrong choice initially. What

do

> you ladies think? And, what did the doctors tell all you triple

> negatives? I am amazed that there are so many of us when I was told

> it was rare.

> Carol from Ohio

>

> > >

>> >

>

[Guest guest]

>

> ,

>

> I agree, I think the same thing, but I know when I had a

reoccurence a year after, all the doctors kept saying was thank

goodness you took those ovaries... I see my onc on Monday, I've been

jotting down lots of questions from things I've learned here.. I

will keep you posted on this one!

> Michele

> If you are triple neg, the reason why they might be glad they took

the ovaries is not because the ovaries produce estrogen, but because

of the higher risk of ovarian cancer. they might feel that you

would have had ovarian cancer as well as the recurrence of BC.

THere are two different reasons why they might want to take ovaries,

one to prevent ovarian canccer if you are at higher risk and the

other so that you reduce the amount of estrogen if you have an ER+.

You need to talk to your doc to find out why he took them. Just

having them out doesn't tell you the reason in your case (although

he should have made clear to you the reason. BUt often a doc will

take the attitude that s/he's the expert and you're just to leave

everything in his/her hands.

Ann

[Guest guest]

Ann,

Thank you, you are so well educated!!! I love your responses to everyone. I

do believe, now that I think back, it was due to my high risk of ovarian cancer

since my mom had passed away with that at 39. Plus I am a genetic carrier for

the gene. However, the surgeon didn't make the decision, I did, the morning of

surgery!! LOL.. He was planning on taking the uterus and cervix, but I told him

I wanted it all gone.. He was a bit defiant, as he didn't feel the need, but

came back to me as I awaited surgery and said, " I will justfiy this by the fact

that if I go in and see something, I'd have to go back to take them out

anyways " .. There was nothing there, thankfully, but I am glad that is still one

less thing to think of. HOWEVER, what people don't realize, is just because we

have masectomies and ovaries removed, still does not mean we can't get breast

cancer and ovarian cancer.. There is still that chance, from what I've been told

anyways. I also consider myself proof

that since I had the mastectomy, my cancer returned on the same side.. but,

what can you do? nothing, plug along and just keep on keeping on!! (I so love

that saying Jan) Why did it come back, because the darn cells are so

microscopic, nobody, not even the best surgeon in the world, knows for sure if

they get everything. We just have to have faith, follow treatment and wait.

Just like those who never have had cancer yet, its the same wait.. We all have

it, its just a matter of what triggers it to project itself. I am confident

they are closer and closer to finding cures and better treatment each and every

day!!!

XO

Michele

annk_71679 ann.kalinowski@...> wrote:

>

> ,

>

> I agree, I think the same thing, but I know when I had a

reoccurence a year after, all the doctors kept saying was thank

goodness you took those ovaries... I see my onc on Monday, I've been

jotting down lots of questions from things I've learned here.. I

will keep you posted on this one!

> Michele

> If you are triple neg, the reason why they might be glad they took

the ovaries is not because the ovaries produce estrogen, but because

of the higher risk of ovarian cancer. they might feel that you

would have had ovarian cancer as well as the recurrence of BC.

THere are two different reasons why they might want to take ovaries,

one to prevent ovarian canccer if you are at higher risk and the

other so that you reduce the amount of estrogen if you have an ER+.

You need to talk to your doc to find out why he took them. Just

having them out doesn't tell you the reason in your case (although

he should have made clear to you the reason. BUt often a doc will

take the attitude that s/he's the expert and you're just to leave

everything in his/her hands.

Ann