Gray area for chemo

Hi Nina,

 This is my first post as well. I'm 25 and was diagnosed 11/08 with double mastectomy 12/08. IDC .8cm, node neg, ER/PR+, HER2-. My oncotype score was 24--believe it or not, my onc said chemo was up to me as well. She said my distant recurrance risk was 15% with tamoxifen and no chemo. Chemo would put me at 11%-15% chance of recurrance (unfortunately, she could not tell me whether chemo would provide a benefit for me). My first instinct was no chemo. I asked her what she'd do in my situation, she said she would have it. Then I thought about if somebody close to me was going through this, I'd want them to have the chemo. I decided even the *possible* benefit was enough for me to choose to go for it if it reduces my chances of a distant recurrance, and figured I'd regret not doing everything I could now if it came back. I found this out 1/28--yesterday I started the IVF process and will start chemo at the end of February--4 rounds of TC. Best of luck with your decision!

Hi Nina.  I know how tough this decision is for you.  I went through the same thing.  If you go to the Genomic Health website they have some great info on interpreting your results and how it all shakes down.  I think the fact that your tumor is larger than 1 cm, and that you're on the younger side all contribute to the rec. to do chemo. 

My own situation was that my oncotype was 14 and I was 35 at dx.  I consulted with 2 oncos who both recommended AC x4.  I agonized over this decision, but ultimately decided to go with the chemo.  I finished in Nov and am glad I did it, though the longterm side effects are always a concern for me.  My advice: get a couple of opinions, do your homework, pray, and when you make your decision, don't look back.

Hi Nina, We are a little different. I am Her2+ but grade 1, low Ki-67, negative nodes and 5 mm tumor. My onc didn't do the oncotype test. There wasn't anymore cancerous tissue available at the mast, but she did say that my risk of spread was about 10% - similar to your 8%. I went ahead and did the chemo for two reasons. One - I am 42 and have 3 small children under the age of 10. Two - I didn't want to pass on the herceptin. So chemo plus herceptin plus tamoxifen takes my 10% to ( chemo -3%, herceptin -3.5%, tamox -1 ) 2-3%. If you are her2- you wouldn't get the herceptin so you would just get the 3% chemo and then whatever hormonal you would take. My onc actually said she hoped I wouldn't do the chemo and that she only offered because of my age. I think generally 10% or less risk is considered low. I told her I had to do it because of my kids and she understood. Now I am out two months and it just seems like a bad dream. I am on tamoxifen and feel that I have done everything I could to help my kids grow up with a mom. But I must say that chemo is hard and that had my kids been older I probably would have passed.

I think your decision would depend alot on how ER+ you are and whether you could take tamoxifen or an AI. I think the more strongly ER+ you are the better insurance you get from those meds. AIs have a better result, so possibly your onc could put you in chemical menopause with a shot and prescribe an AI. Many studies I have seen say that hormonals work as well as chemo for ER+, especially someone whose tumor looks pretty low grade like yours. Good luck with your decision. I don't think there is a right answer.

Hi Nina - I agree with Buffy that you should go with your gut - I've been to 3 of the best cancer centers in the county (I'm in New York) and after two wishy-washy oncologists, I consulted with a third who is highly respected and he said "no chemo" very confidently. I'm pre-menopausal and in my late 30s. I'm stage 1, grade 1, <1cm, ER+, PR+, Her2- and node neg. I had a lumpectomy and am currently doing radiation and plan to take tamoxifen. However, I'm also getting the 2d6 test to make sure I'm able to convert the tamoxifen properly (there was a story in the NY Times recently about women being on tamoxifen for years without any real benefit). So, best to get all the data you can - I'm now a firm believer in personalized medicine. Best of luck to you!  

Nina,

Here is just another case study for you to add and hopefully it will help you make your decision.  Most importantly, remember, IT IS YOUR DECISION.

I am 63 and still consider myself quite young with many years of living left to do.  I had a 3.5 cm tumor and after my lumpectomy found myself with grade 3 IDC, er/pr positive her-, stage 2A, and oncotype dx of 17.  At first the decision was no chemo just radiation.

I then had an MRI, just to check out the other breast, since nothing (even a 3.5cm tumor) never showed in any of my mammos.  The MRI showed "something" in both breasts and I had surgery to remove those also.  The "good" breast had some atypical cells, but lo and behold the already dx'd breast had another primary cancer in another quadrant of the same breast.  It was much smaller and 90% contained DCIS, so very early stage and grade.   They were not really so concerned about the second tumor, but it was enough for me to reconsider my chemo decision more as an insurance policy.

I knew, for me, I could never look back if I had a recurrance and be okay that I didn't do everything I could have to fight this thing.  I personally thought about if it happened, could I face my husband, my three children and my first grandbaby,  who was only 6 weeks when I was diagnosed.  So for me it was chemo.

I did fine and finished Jan 6th.  Yes, some side effects, but nothing I can't handle.  Do I worry about something it may have caused for me to deal with down the road, yes, but I was at peace with my decision.   That is what you need to do, find peace and then move forward and do not look back.

I am now in radiation, #6 today out of 35.  I worry about that too in terms of long term damage.  But I am marching forward.

You will know when the decisions are right for you.

It is so much to handle at times, but somehow we all keep going forward and this thread is one of the big reasons why.

Caren

Hi all, I like you Nina, just got my Oncotype scores today - 19.  I really appreciate all the good thoughts on here, dang here I thought all my decisions were made.

Caren, I read your post with interest, I am feeling that way as well.  thanks all.  Lori