choosing tamoxifen over chemotherapy

u2dan7

I respect that all have to make decisions for themselves and really believe that if you believe in your decision you will do well. However I encourage you to look at some of the recent data on HER 2 and less than 1cm tumors. There is a retrospective study out of MD ANDERSOn that states without the Hercepin even ladies with less than 1cm HER2 tumors recurr at a much higher rate, I think something like only 75% were recurrance free at 5 years vs 95% non HER2.

That being said with a year of Herceptin we are looking at an equal outcome to Non Her2 stage one. I was quoted this by head of research former MD Anderson ONc now at U OF A.

Please PM me if you more questions, by the way I am also a huge u2 fan have traveled many places to see them>>

U2fan7 - welcome. My invasive component was stage 1 grade 2 and 3mm large.  I consulted with two oncologists who both said no chemo no herceptin.  I did not feel comfortable with this but could not keep viisiting doctors hoping to get a different recommendation (or perhaps hoping not to get a different recommendation).  My sister was just diagnosed with breast cancer and she is doing 8 sessions of chemo, a year of herceptin and 33 radiation sessions.  I look at what she is going through and think - maybe this is what I should have done.  However, when I last saw my oncologist she said if she were to see me for the first time today, she would still not recommend chemo for me. Perhaps the second doctor would have, based on the MD Anderson findings. Swimangel did a different type of chemo - perhaps you should speak with your doctor about Navelbine.  If I were just diagnosed, I certainly would bring that into the conversation.  Good luck to you what ever you decide!  I wish you good health.

Im a U2 Fan too!

My her2+ Tumor was 1.2mm.  I am ER+ 18%. I am Grade I.   My Onco 1 year ago said no Chemo, No Herceptin.  She consulted with several other Oncos.  I agreed with her.   I did try to get her to give me just Herceptin- But she wouldnt & there were no studies to back it anyway & insurance would not pay for it.

I am not taking Tamox.  I had a BLM

That was a year ago.  The San Antonio Study Now says tumors that are Her2+ under 1 cm should get Chemo & Herceptin.   I wish they would actually address the 1 & 2 mm tumors.  But they dont.  We all know 1 & 2 mm is alot smaller then 7-9 mm.

A while back it was brought up that Tamox may not help Her2+ As well as AI.   Do you have plans to take Tamox & later switch to an AI?

I think they will do the OncoDX test for Her2+.  But some Oncos may not want to ...As usually it comes back with a high # .  Though not always...I recall someones coming back at 20 I think.

It is a hard decision to make.  Sometimes you may 2nd guess yourself...Especially when you read or hear about new info.

I feel comfortable in my Choices & have for some time.

Wishing you well,

Pam

The Oncotype DX is definitely done for small Her2+ tumors with no metastasis to the lymph nodes. I had it done with a 9 mm ER+ (100% staining) and HER2+, grade 3 tumor and it came back as a 23. That indicates a 15% recurrence rate. I opted for 6 TCH treatments and am continuing with the full year of Herceptin, which will bring my recurrence rate down to approximately 8%.

Everyone has to make their own decision regarding risks of chemo vs no chemo, and it can be a very uncomfortable choice to make. I was very hesitant at first, because I am biased toward alternative approaches, but am glad now that the worst chemo is over with, that I have done everything standard medicine has to offer for the aggressive HER2+ cancer I have. That peace of mind has a beneficial effect on my health, even if the chemo did nothing for me.

u2fan,

I also did not have chemo or herceptin and I have similar stats to yours.  I posted a more detailed explanation on your other post on the IDC board.

Sandee

I was stage 2, node negative, no evidence of vascular spread, ER+, and HER+.  I had a bilateral mastectomy with reconstruction, didn't do chemo or herceptin and am taking Tamoxifen.  I am convinced that I made the right decision for me. 

If there was a good study showing that Herceptin is effective without chemo, I might have made a different decision, but the studies that were available a year ago when I was making that decision all showed that Herceptin was only effective with chemo, and the long term risks of chemo were too much for me.

The Tamoxifen is effective against any stray cells that may have escaped.  I also lost weight in an effort to reduce the volume of hormones that my body stores.

Whatever course of treatment you choose, you need to be sure that you feel confident in your choice.  Given your diagnosis date, it seems like you have already fully made your choice, and are seeking validation.  I have been on this treatment plan for over a year now, and while Tamoxifen has some less than fun side effects, it seems to be working for me.

Hi I'm not sure if I'm on the right thread,but my question is how do you know if the Tamoxifen is working? Cause I heard if you don't have hot flashes or anything it's not working is this true? I don't feel any difference with or without it. Is this normal?

                                    thanks Lynn

funthing, there are many arguements both for and against chemotherapy.  Some people are all for throwing everything possible at this beast up front.  Others believe that chemo isn't magically more effective against early spread than it is against more advanced disease, and that if the cancer does come back, the chemo can actually cause it to become more agressive.

Chemotherapy has also been found to be significantly less effective against breast cancer than it is against some other cancers.

http://www.oasisadvancedwellness.com/learning/chemotherapy-effectiveness.html

Please check out the Quality of life and Longevity thread on the Moving Beyond Cancer Forum.  Some of those women would still have chosen to do chemo, but others would not have, and you might find their insights helpful in your decision making.  You are young enough to have many years to deal with the potentially life changing long term or permanent side effects of chemo.

I am currently enjoying my second summer of good health since diagnosis.  I chose not to do chemo.  I have made changes in my life including losing a lot of weight, and improving my sleeping habits and stress level.  I had no lymphovascular involvement, but my cancer was grade 3, and my OncotypeDX was high. 

I hope that whatever you decide, you find peace with that decision, and have confidence that it is the right choice for you, whether or not it might be the right choice for someone else.

Thanks its really helpful to have the feedback. Its so hard to choose chemo with neg nodes ever thing was suppose to be black and white now in major Grey. Oh well

bluedasher wrote:

That oaisisadvancedwellness site gives no info on how the chart was determined so it isn't at all clear what it means. For example, if they compared those who had chemo to those who didn't, how did the equalize for different stages and types of cancer? In any case, the effectiveness of the chemo also depends on the details of the cancer type and there has been a lot of improvement in chemo regimens in recent years.

The chart compares chemotherapy's effectiveness against various types of cancer in comparison to other treatments such as surgery and radiation.  It was compiled by oncologists in Australia, (two of the threee were radiation oncologists so there may have been some bias).  It shows that for blood borne cancers, chemotherapy seems to make a substantial difference in the number of people alive 5 years after diagnosis.  For solid cancers like breast cancer, it seems to make significantly less difference in outcome, of course if you are one of the more than 400people for whom chemotherapy made a difference, it means the whole world. 

Hi, My bc was stage 1, er and pr negative. no nodes involved, I had a mactecomy, and clear margins. My tumor was only .17mm so my oncologist recommended no treatment. I am 58, and post menopause already. I have gone to another oncologist, and still no Herceptin for me. They still not know enough about tiny tumors, so they dont treat. They claim risks from treatment outweight any benefit you could get. I dont understand, w/o Herceptin recurrance rate is 23% and with about 10%. I am still checking for another doctor to get another opinion.

Hugs,

Cookie