In your 40's with low Oncotype score, what was your decision?

It seems ridiculous that I am somehow comforted knowing I am not the only one out there driving myself crazy with ifs and statistics. I'm currently waiting on my oncatype for some sort of help with the decision. My MO says chemo. I wish all of you well. I wish for all of you peace once the decision is made.

Hi ladies,

Just to share my experience: I ended up with an oncotype score of 11, and as my stats show, no nodes involved, grade 2 tumor. I met w/my MO, who recommended no chemo.  As Annice (and others? have shared), she said chemo would only reduce recurrence chance 2-3%, and risks outweigh any benefit.  She said one of the benefits that chemo would have on me (pre-menopausal) is chemopause--stopping my periods, so instead she started me on Zoladex (monthly shot in my belly), which will shut down my ovaries (=stop producing estrogen).  In addition, I will start Tamoxifen next month--be on that for 5 years, and then on an AI 5 years after that.  She also will put me on Zometa (every three months), which helps with bone density, and studies are showing that there's additional benefit to reducing recurrence.

When I asked my MO about longer term, where will I be with all of this, she was optimistic.  On top of me being statistically in good shape, she said I'd be on these estrogen suppressing treatments for the next 10 years (starving any cancer trying to get a foothold) and 10 years from now we'll have that much more information about BC treatments. 

Renee and Lilly - I appreciate both of you sharing your stories. I totally agree, it's very helpful to hear what others went through and what meds you ended up on. 

I'm now one year and one month on tamoxifen, no side effects except my period has all but stopped. It went to every 3 months and just last week I had my first one in 5 months. The new medical onc I am seeing here since I moved ran all my hormone levels to compare to pre-lumpectomy levels where I was extremely pre-menopausal. My FSH and LH have finally started going down to peri-menopausal levels but my estrogen is still high. My former oncologist talked about putting me on Lupron or Zoladex injections to shut down my ovaries, so in 2 months at my next checkup with the new onc, she's going to measure again and then decide since my estrogen is still so high. I'm grateful for no side effects from the tamoxifen.

Cheri

kathy, I was in my 40's when I was dxed and had treatment. I decided not to take tamoxifin, but I did try it. One difference from you is that I had chemo so I felt I had cleared my system and wasn't real concerned with recurrance. The unfortunate thing is that they have no clue who will get it again and what treatments will completely keep it away. Yes, there are percentages, but from my years of experience, it's still a dice roll. My advise to you is to try it. Give it a few weeks, maybe a month and see how it feels. Some women have no SEs. That could be you and if you don't try you don't know. It's just another layer of protection. Good luck with your choices.

I suppose you have to weigh your options. Does anyone in your family history have uterine cancer? Was you IDC ER+ and are you close to menopause? What are the percentage of getting UC from tamoxifen versus percentage of recurrence without the meds? We are all scared one way or another regarding treatment and unfortunately after BC our bodies and minds are changed forever, Because of chemo I went into menopause fast and hard. Tamoxifen only made the emotional roller coaster worse at the time. Also, after having surgery, chemo and rads I was a mess and had little fight left in me. I now take an 81mg aspirin everyday since there have been studies that show it can help recurrence and other things. My MO respects my decisions and it was simply a trade off. The one thing I can say is that when all was said and done, my gut told me not be concerned with reassurance. I don't see your stats, but a lot depends on many of the fine details of what you had, how you treated it, your age, your concerns about the future, etc.

Just FYI, while tamoxifen doubles the risk of uterine cancer, it only goes from 1/1000 to approximately 2/1000, so unless you have other risk factors, for most people your risk of breast cancer recurrence without the tamoxifen is much higher than your risk of uterine cancer with it. Everyone has to make their own decisions, but please discuss the actual risks/benefits with your doctor before deciding.

I was diagnosed with stage 1 breast cancer with No lymph node involvement and clear margins but my oncotype score was 22. My oncologist told me that I will be needing chemo. Was anyone here on the cytoxan and taxotere regimen? I would need only 4 rounds every 3 weeks

Stage 1 with no lymph node involvement does not lend itself to chemo unless the cancer is aggressive and the patient is young. Chemo is usually suggested when the cancer is found in the lymph nodes. Doctors will prescribe chemo in the hope it will kill of any cells that may have traveled because of the nodes. The onocotype test does not tell you if you need chemo. The test tells you how your tumor cells (if they have escaped) will react to chemo.

Basically lower than 18 means the breast cancer has a low risk of recurrence with hormonal therapy and the benefit of chemo is small and will not outweigh the risks of side effects. When the score is between 18 and 31 the cancer has an intermediate risk of recurrence with hormonal therapy. It is unclear whether the benefits of chemotherapy outweigh the risks of side effects and greater than 31 means the cancer has a high risk of recurrence with hormonal therapy, and the benefits of chemotherapy are likely to be greater than the risks of side effects.

All these numbers are based on if you are ER+ and use hormonal therapy when all other treatment is completed. If I were you, Luttece, I would run for a 2nd opinion (unless you are in your 30's). I did the TC x 4 and although I got though alright, chemo can permanently damage your body. I still have some effects today and it's been four years. If my cancer hadn't gone to my lymph nodes, neither of my doctors would have recommended it.

Ask to have the Mammaprint test. For patients in the intermediate range, it will give you more info about whether or not you will benefit from chemo. Also ask that your case be presented to a tumor board.

Rebeccam, as I am sure you know a score of 19 is considered intermediate, so it is really hard to make a decision. What was your mitotic rate? People on here say that a higher mitotic score responds better to chemo. Have you considered a second opinion?

I am 39, 38 at diagnosis. My oncotype score was low, but if it was intermediate, I would have done chemo but I made up my mind to be as aggressive as possible with my treatment. I know other women on here feel differently, and it's hard that in some situations, these decisions are left to us.

I was diagnosed with IDC stage 1, grade 1, 0/2 lymph nodes, oncotype 12 on March 11, 2012, 5 yrs ago. That time I wanted to have chemo but because my oncotest is still considered low I was told I won't benefit on chemotherapy and also because I have low grade cells. So I just had bilateral mastectomy then Tamoxifen. Fast forward almost 5 yrs. Last Feb 15 on our wedding anniversary I found 3 lumps on my left breast by accident. Feb. 22nd biopsy confirmed recurrence. I was devastated and terrified. My last dose of Tamoxifen should be this April 31st but Tamoxifen did not worked on me. Luckily my PET scan and Bone scan came back negative. I had axillary lymph node biopsy this morning and I'll find out the result in a few days. This time I will have chemo and radiation. I was told I still have options this time but no more if it comes back again. I'm still debating if I would have lymph node dissection or just have prophylactic axillary radiation. I do a lot of biking and backpacking and I'm scared if I end up having lymph edema I won't be able to work out anymore and do the things I love to do.