Stage 1B, ER+,PR+,HER2+++,Mastec Prognosis

[CLTann]

Sisters,

I had 1 cm invasive ductal cancer, postmenopause and no nodes problem, and opted for mastec one month ago. Since then I have been on Tamoxifen and no chemo. My onc says if I don't do Tamox, my disease free chance is 85%. Doing Tamox, the chance is up another 5% to 90%. If add chemo and Herceptin, the chance is further up another 5% to 95%. When I looked at these prognosis, I decided to go for no chemo and no Herceptin. Back in my moment of self reflection, I always wonder whether I made a right decision. The onc says whatever my decision is, it will be the right decision; basically, it is a guessing game and he is no better in predicting my specific case than I can. He also says that Herceptin can be used without chemo, as well as in addition to Tamox. These regimens are acceptable to FDA and insurance will pay for such combinations.

I thought the above info may be relevant to other early bc patients. I also would like to share other views from oncs specializing in bc and what they would recommend. Most likely, I will seek another onc specialist to confirm the above statistics. Please feel free to send me advices, criticisms, warnings and alerts.

Dear CLTann,

Thank you for your post. There are a few things you mentioned that you should possibly reconsider, or at least talk to your onc. or another one about.
First, if you are postmenopausal, you really should be an an aromatase inhibitor rather than Tamoxifen. Arimidex was strongly proven to be about 20% more effective than Tamoxifen in postmenopausal women. Somewhere on this site you should be able to find those studies. There is also some concern that Tamoxifen and Herceptin do not compliment eachother well, also studies on this site. Chemo is a tougher decision to make than Herceptin due to the side effects, but apparently your cancer was HER2/neu+ if Herceptin has been brought up at all. This causes your cancer to be considered more aggressive or as some say, more "tricky".
The 52% reduction in recurrence benefit from Herceptin comes when it is used first in combination with a taxane chemo, and then continued for one year. When used alone, there is still benefit, but it is significantly less. HER2/neu always makes us need to look at things a little differently, and possibly more aggressively. I also was Stage 1, no nodes, ER+, 1.7 cm, grade 3. You didn't mention some of these other prognostic factors in your post such as grade. I had bilateral masectomy, AC x 4, Taxol weekly with Herceptin x 12 and now Herceptin every three weeks for one year, longer if they will let me by then. I had my ovaries removed so that I could be postmenopausal and take Arimidex. As you may see, I'm not interested in doing this again if I can possibly avoid it.

Best of luck to you in your decision. Hope I didn't seem frightening to you.
Just want to make sure we all consider everything completely and then make the decision we are at peace with.

[CLTann]

Dear Cheryl,

Thanks a lot for your advice. I had grade 2, well differentiated lesion. Nodes status were done during as well as post operation. I also have fast heart beat problem (thus the reluctance of going into Herceptin). I am a pharmacist and know many people with this type of disease. However, I also know that BC is different among different people, and very unpredictable. We all are trying to guess what will happen; all trying to counter what may or may not happen.

My posting is also to gether info among other people with similar status. The reason (my own guess) that our type of cancer was never included in studies is that the survival rate is so high without drug/radiation intervention that would make any new method of intervention not easily identifiable in a short period of time. Therefore, I try to see whether I can compare my case with others in a similar situation. Volumes of medical paper were scanned yet I found very few real cases that could be applied to my own case.

Your various points are all well taken. I am aware of the better clinical reports on Arimidex. I am also aware of the contraindication of simultaneous use of Tamoxifen and Herceptin. If I am going to make a change, there will be a 2 to 3 week rest between different regimens. On the other hand, my onc seems to think Tamo and Hercep can be used together -- in fact, he has one patient currently in such a combined medication.

Please keep me posted if you have additional thoughts. You seem to possess a great deal of knowledge in this area.

Thanks again.

[Sheila]

CLTann
I knew when you said IDC it was invasive ductal....mine was also, but mine was 0.7 cm....no + nodes, ER PR - &
Her2 +++...Being ER PR -, Tamoxifen would not work for me...my tumor was small, neg nodes & Herceptin was not available for Stage 1 disease...no chemo was recommended...as the risk was higher than the benefit....well 1 1/2 years later the BC was back in my lymph nodes. ..then I became eligible for Herceptin as I was considered stage IV...even if you take the Herceptin without the chemo, you will gain a huge benefit...I honestly feel if I had qualified for it when I was stage 1, I wouldn't be where I am now....things have changed since 2002.
You have to make your own decision & be confident it is right for you..think about it & research your options. By the way, I also had a mastectomy.

[Barbara2]

Hi, CL Tann, This is just an opinion, but I would support 100% the information/advice from Cheryl and Sheila. Sure hope you will at least get a second opinion.

Blessings to you

[dskdrive]

I have IDC, Stage 2, Grade 2, ER,PR+, Her2+, I had lumpectomy, sentinal node biopsy(no node involvement), 4 chemo, 33 radiation. I am presently on Arimidex. I completed treatment 3/05. In August, I talked my oncologist into 6 mo. of Herceptin. Without Herceptin, my second opinion oncologist from a major medical center (Wake Forest) gave my chances of reoccurance at 15%. With a year of Herceptin, my chance of reoccurance would be half. Insurance would only approve 6 months for me since I have out of chemo since Dec. 04. I am going to try to get a full year if my heart stays OK. My personal feeling is that now is the time to beat this beast and I want to do whatever I can to prevent a reccurance but you have to do what you feel is best for you.

[suzan w]

I was dx'd in May 2005, invasive lobular. Had bilateral mastectomy, small (8mm) tumor, node neg, ER+. PR+, Her2+. Had fish test done (2.94-relatively low). Onc. said if it weren't for the Her2+ I would not be a candidate for chemo...arimidex for ER+. And the fish 'score' was fairly low. I had an oncotype DX test done, and it came back in the high intermediate range. The onc. was surprised that it was so high. Lobular is agressive, and combined with Her2...more so??? Anyway, I opted for 4 rounds of A/C and am now doing herceptin for a year (at least) and arimidex for 5 years. It was the results of the oncotype DX that convinced me. I have not run into many women with invasive lobular and would love to hear from them!!!