herceptain w/out chemo

[Jean]

Hi to Everyone,
I am a new member - I would greatly appreciate advise from all -
I have been fighting over treatment decisions with onc. -
I live 18 miles from NYC - have been to three top oncs.
All have said the same and I am not convinced that my treatment is correct.
Found this site and was thrilled to learn about all of you.
Here it goes.
Was dx in April - 6MM tumor, her2 +++ er/p - was ductal invasive,
had lumpectomy - lymph nodes were neg. had 26 treatment of radiation
and 6 boosters. I am now on Arimidex.
The dr. say that since the size of the tumor was 6MM there is no need for chemo - and they would not recommend herceptin. Also NONE of them would
acknowledge the oncoytpe test at all - it is not gold seal yet. They
all said even if the test came back high they would not change my treatment.
It appears that the tumor size is the main decision and not the type of
cancer - I am so exhausted from the battle - I am seeing another onc.
12/6. I feel as if I am wasting time just dealing with the onc in regards
to treatment. It is all a mystery - the oncs are concerned to offer herceptin to stage I patients with small tumors node neg. I am terrified
of the cancer returning and I am having a difficult time to understand
why the system is concerned with tumor size and not the type of
cancer. All of the three oncs were greatly concerned about introducing
a risk of heart problems. I am more terrified of the cancer.
Please give some advise!!!!!

Thank you,
Jean

[Becky]

Jean


Did you go to Sloan Kettering? I am just wondering because I go there for second opinions. Although I am node positive, Sloan is giving Herceptin via the HERA trial to those who finished chemo within one year. The HERA trial consisted of node negative and node positive women so if you went there or go there, this is an argument you could use to get Herceptin. I know because I was able to obtain Herceptin from the center I go to in NJ because I went to Sloan who would willing give it to me since I fit the trial protocol. When I told my NJ doctor I was going to leave and go to Sloan to get my Herceptin, he agreed to give it to me.

I don't want to assume that just because you are close to NYC that you have gone to Sloan but if you haven't, you should and if you have, you should argue with them since they are very much into "trial protocol" there.

Peace

Becky

[Jean]

Hi Becky,
Thank you for answering!
I have been to Mt. Sinai, Cornell B.C. , and Hackensack Med. Ctr and NY Preb. hosptial.

In the beginning I was appt.with Sloan - do you remember back in March
the Dr. Jeanne Patrik was killed by a traffic accident. - She was to do my
surgery - after her death I went to Cornell.....


Where do you live in NJ - I also live in NJ.....

Jean

[bjj]

Hi

I live in the UK. I was diagnosed Jan 2005. Had WLE and axillary clearance. All my lymph nodes were clear. My tumour was Grade 2 and 13mm and ER+. I was told that I didn't need chemo but had 7 weeks of radiotherapy. I was happy with the no chemo decision at the time.

If you look at adjuvantonline.com you can see what difference the various options make for your particular cancer. Only look though if you really want to know the stats! Chemo in my case would have made very very little difference and my oncologist felt that the side effects just simply weren't worth it.

I have only just been tested for HER2 - it's not standard in this country. I had to insist. It has come back positive but the letter I had from my oncologist stated that she would not be recommending Herceptin in my case. I do not understand why. I have an appointment with her in a few weeks time.

I have read up a lot about the HERA trial. About a third of the people on it were node negative but the tumour size had to be over 1 cm. This might be why it is not recommended in your case.

Like you, I am terrified of recurrences. I was before I knew I was HER2+ and am even more scared now as it seems to indicate a worse prognosis and an increased chance of recurrence. I do not know why my oncologist is not recommending Herceptin as I fill the criteria needed for the HERA trial - the conclusion from that trial is that everyone meeting the criteria should be given Herceptin. I have a horrible feeling that it is because I didn't have chemo orginally. Personally I would find it hard to psyche myself up for chemo now having been told I didn't need it and as I am now starting to feel better after radiotherapy side effects. I just don't know what to do.

It seems that HER2+ could become in the future one of the indicators for having chemo or not. I wonder if I had been freshly diagnosed this week whether my onc would have insisted on chemo instead of advising me not to have it as she did in January when HER2 wasn't known.

You might find the following link helpful. It is a report from a meeting of experts about how to go about treating breast cancer and combinations of risk factors etc.

http://annonc.oxfordjournals.org/cgi...tract/mdi326v1

On the right hand side there is a link to download the full text of the meeting.

Hope this helps.

I'm still confused though!