Question for those diagnosed in their 40s- Oncotype

Renschwa

Hello my new friends,

Just days before my 45th birthday in December, I was diagnosed with invasive ductal carcinoma with lobular features (according to lumpectomy report) . Lymph nodes clear (sentinel biopsy), 11mm size, grade 1, stage 1, Her2-,estrogen & progesterone positive(99% for both) Just had lumpectomy January 27, 2020. My surgeon consults (2) and radiation oncologist had said that I had a low chance of needing chemo. But the nurse from my surgeon's office called this week and said my oncotype score is 20 and therefore chemo would be recommended. I'm so upset about this. I was mentally prepared to do radiation & then tamoxifen. I really really don't want chemo. Just wondering if there's any 40 somethings out there in my same boat who have not taken chemo? I've even thought about removing my ovaries. I see my medical oncologist & radiation oncologist next week as well as another medical oncologist at MD Anderson on March 4. I'm just very overwhelmed by making such a difficult and important decision. Thanks everyone in advance for your support ❤️

voraciousreader

sorry to hear about your diagnosis...

Some women in their 40s will be here to chime in...but here is the most recent evidence recommending chemo for patients in your situation.

https://www.breastcancer.org/research-news/adding-clinical-risk-of-recurrence-to-oncotype-dx-score

you are very fortunate to be diagnosed now and not several years ago, before the results of the landmark study was published.

As you can see from my signature, I was on the other side of 50 when I was diagnosed with a score of 15 and premenopausal. I am glad, now, that I chose ovarian suppression because my score was on the cusp for “younger" patients to consider receiving chemo....

ultimately, the decision is yours and yours alone.years ago, we had a woman on this board who had gone to Sloan Kettering and with a score of 11 INSISTED on chemo and the doctors REFUSED. You wouldn't believe how many people supported her decision to get chemo despite the medical community refusing her. Not sure what she ended up doing. Did she find someone to give her chemo? We will never know unless she once again returns and tells us what she did and how she is doing.

that said, in your situation, you are on the upper cusp with a score of 20.. It is now up to you to consider it. And yes, ovarian suppression should also be discussed at your medical oncologist appointment. For many years there has been the discussion that the benefit from chemo for younger women may actually be due to ovarian suppression caused by the chemo. Does ovarian suppression give you the same benefit as chemo? No one knows. But what we do know is the above study's results. Enlighten yourself about the study and also register on the NCCN's website and read about the breast cancer treatment guidelines....

also...you can ask for a tumor board to review your case. Personally, I think you will have many choices and, at the end of the day, you still have excellent prognostics!

good luck

Renschwa

thank you so much for the helpful info! For ovarian succession did you opt for meds or surgery? Just curious how bad the surgery is... still would rather do that than chemo if it’s an option. Not to mention at my age my periods are so unpredictable/irregular. I wouldn’t miss that a bit either. I’m well aware menopause isn’t fun either. Honestly, none of this is fun though lol!

Jackster51

I'm surprised with a grade 1 and 11m size they are recommending chemo as a given.. ? But I'm not up on the latest information either.. I do know people on here ask for the mamoprint test that comes back as a yes or no - not so much grey area.. I had chemo at 47 - and it's not to be taken lightly! I'm hopeful with your upcoming appointments that they can shed some light on your situation.. Not what you were hoping for for your birthday! Sorry you find yourself here, but it's a great group of ladies/men that have been where you are now, and can walk you through everything your going through. Best of luck with your decisions.

Renschwa

Hi Jackster51,

My score was given to me quickly over the phone by my surgeon's nurse. When I asked what a 20 meant, she said at your age it suggests the need for further treatment with chemo and radiation. I was shocked because my surgeon and radiation oncologist both thought I wouldn't need chemo but those discussions occurred before the oncotype score came back. If I'm reading the guidelines correctly at a 20 there is about a 2% benefit from chemo and at score 21 it increases to about 7% (for under age 50). I don't think those are high enough for me to justify subjecting my body to chemo. Plus tamoxifen and it's side effects will be coming too.

I have thought about the MammoPrint... and ovarian suppression as well.

I will be seeing 2 medical oncologists that can hopefully help guide me. One appointment is on Monday thankfully. I've been told the doctor is great but that he's old, like upper 60s (not so old to me anymore). However since at my age I'll be seeing an MO for numerous years to come , I did research and found another MO closer to home & much younger at an MD Anderson facility. I see him March 4. The radiation oncologist said it was ok to wait that long. That was a concern for me. But the waiting is driving me nuts mentally... I had initially thought I'd be starting radiation by March 4 or around then but I guess not. Lumpectomy was January 27 and I am a bit sore still so at least I can heal a bit more. I see my radiation onc next week as well.

Thanks for listening/ reading! Happy Galentine's day ladies!

voraciousreader

jack...when you are on the cusp...nothing is a given. When I was diagnosed, the TailorX study was still under way. We now know there MAY be some benefit of chemo for patients under 50 with oncotype DX scores of 16-20.

Ren.. there is a thread...premenopausal stage 1 grade 1 that Annice started many years ago and is still active. You can visit the thread and chime in....

i did Lupron injections for three years. For me, it was very doable