37y/o onco score of 27 and considering no chemo - Please advise!

Fukcancer

Reposting here from the IDC forum.

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Here are my stats:

36 years old at diagnosis IDC. My tumor was 1.7cm stage 1. I had a lumpectomy with clear margins and no node involvement. Grade 3. ER+ (80-90%) PR+ (60-70%), Her2-. Ki67 80-90%. Oncotype score of 27.

From the beginning of this nightmare, I've been getting conflicting information. After my initial biopsy and diagnosis, the nurse navigator said chemo was unlikely and I would proceed with radiation and hormonal therapy after surgery, especially if my nodes came out negative. Now two different MOs are recommending chemo (specifically TC x 4) followed by radiation and hormonal therapy . I am terrified of chemo and am considering rolling the dice and going with the chance of distant recurrence of 18% vs. what they are saying COULD be 12% to 10% with the recommended chemo. I have also read that Taxotere can cause permanent hair loss in up to 15% of patients.

Is declining the recommended chemo just stupid? Are there any other survivors out there who got hit with this disease in their 30s or 40s with stats similar to mine who declined chemo and have not had a distant recurrence? Please give me hope!

JoE777

I think the grade 3 which indicates the aggressiveness of the cancer would be a major factor for me.

Meow13

I declined chemo with an oncodx score of 34. I did 4 years on AIs, seven yesrs out.

I was 53, very good health.

edwards750

It’s a tough call to be sure. I didn’t have to make that decision but I was saved by a low Oncotype score of 11. Had it been high I honestly am not sure what I would have done had chemo been recommended. I had a micromet in my SN which is the reason chemo was even on the table. My MO said women have been overtreated for years which is why a lot of them rely on the Oncotype test to determine the course of treatment.

Meow is truly an encouraging example as someone who opted out of chemo. I am 7 years out too. I did have 33 radiation treatments and took Tamoxifen for 5 years.

I have friends who did chemo. Their tumors were aggressive. The side effects for them were barely manageable.

Bottom line is it’s your life and your call. Just don’t second guess yourself and look back and say what if...

Good luck whatever you decide

Diane

bluepearl

Your age is of concern. If you were 50+, a more reasonable choice to not do chemotherapy. That said, I get where you are coming from because I sort of wanted chemo for my grade 3 but it wasn't recommended and I never had either the Ki67 nor OncotypeDX....but I still considered it. Do you know if there was any lymph vascular invasion or not? I think that would seal the deal if it were positive. If not, you have a good chance of not revisiting this disease if you take the anti hormonal only. And, no, your choice isn't stupid. Ever.

buttonsmachine

It's ultimately your decision. Because of your age, I would get an opinion from an NCI designated, comprehensive cancer center if you haven't already. You need to see someone who is a specialist in BC, not just a general MO. See: https://www.cancer.gov/research/nci-role/cancer-centers/find

You could also ask an MO to order FoundationOne testing, which gives additional information about how risky your cancer is. See: https://www.foundationmedicine.com/

My concerns are your young age and high grade. I was initially diagnosed at age 32 with Stage 1A, Oncotype 32, 1.6cm IDC, Grade 3, node negative disease. I had two local recurrences despite doing chemo, whole breast radiation, and tamoxifen. Now that I'm at a better cancer center they got it under control, but I dearly wish my cancer had been managed better from the beginning, and not treated like an "ordinary" breast cancer.

I hated the idea of chemo in the beginning too - but in my case I really did need more aggressive treatment. I'm sorry you're in this situation, I know it sucks. Hugs and best wishes to you.

stephilosphy00

I was diagnosed at even a younger age than you! Mine was also grade 3 but with low ki67 (in tumor and sentinel node), I did chemo and even oral chemo. No regrets at all!

Meow13

It is pretty sad that even after doing chemo people get recurrences. We definitely need better treatment. I would get other opinions the grade 3 suggests chemo could knock it down. I would ask if possibly doing chemo before surgery to see if it has an effect on your tumor? I have heard taxol is just as effective as taxotere and the risk of permanent hair loss appears to be less. You could also check out cold caps. Don't dismiss hormone therapy either it more effective than so oncologists believe.

star2017

I was 37 at diagnosis, also grade 3, but my tumor was bigger and with lymph node involvement, so i was stage 3a and I did chemo and radiation. I had AC and Taxol. It was tiring but not as bad as I thought it would be.

It’s hard when doctors disagree or recommendations change. Are you at a university hospital or cancer center? Are you confident in the doctors you’ve seen?

Jinx27

I went through the same thing. My tumor was much larger than yours and I had 3 positive nodes. Chemo was a must because my tumor was big plus im young so most drs want bring out the big guns first. That what it sounds like the 2nd opinion Dr is thinking with you.

I went to a large research hospital and basically had my treatment plan specialized. Surgery first to test the tumor and see what it can react to, then endocrine therapy last.

Radiation wasn't offered because it was considered over treatment by my Dr its sounds like that is the same logic being used by your physician and how you are thinking as well.

Age and node/vasuclar involvement and grade solidified and made me understand why my doctors said chemo. Some tumors are small but mighty!!

Think long and hard!

asianmom

I am waiting for my test results but I am thinking to do the same

PebblesV

I’m age 43 with an oncotype DX score of 21. Also considering no chemo but would do the hormone therapy and radiation.

This is the thing that stands out to me which should be on your oncotype report. The report should show a risk of recurrence with tamoxifen alone, and risk of recurrent with tamoxifen plus chemo. On mine it says 13% for both options! So I’m thinking if the risk of recurrence is EXACTLY THE SAME with or without chemo then why take on the extra side effects of chemo? I’m less worried about short term side effects, a lot of people on these threads have great advice managing it like penguin cold caps to keep your hair etc but it’s the long term side effects like risk of a second cancer or damage to the heart.

The docs all say it’s a risk / benefit analysis and what risk you are willing to take on for what benefit. So it’s a very personal decision but remember the decision is YOURS. It’s your body, your life. Be as informed as you can be and make the decision that’s best for you.

Meow13

PebblesV, I didn't do chemo with a score of 34 but I was 53 years old. My cancer was 2 tumors each 1cm occuring probably at the same time multi centric one ilc one idc, no nodes. I had a mastectomy and DIEP and I chose no chemo because I was 95% er+ and 0% pr, with mitotic scores of 1, grade 1 and grade 2. I did 4 years AI drugs and I am 7 years out. I am so glad I didn't do chemo.

wallycat

Can you also get Mammoprint testing to see how it compares to the oncotypeDX score?

The TaylorX results seemed to indicate under 50 and intermediate score should do chemo. I was just shy of 50 and had a 20 but opted out of the chemo--4% benefit and surgeon did not think worth the risks, long term. The study was still on going and no results to help me decide.

I am so very, very sorry that you are so young and are here with us. Just breaks my heart.

My gyn in WI was 31 when she was dx and she did have chemo, but that was waaay back when because she's 66+ now and traveling the world to donate her time as a gyn.

PebblesV

Meow13 - Your story is so encouraging! Thank you for sharing that. Yours is one of the stories that keeps me inspired throughout this process. I am not doing chemo. Once I reconnected with the oncologist with my oncotype score, even he said as well that he would no longer recommend chemo for my case, and it felt like a cloud had lifted the moment he confirmed that. I was already leaning that way.

I'm almost done with the radiation treatments (will be done next week!) and I haven't really had any side effects from that, so far so good. After that I will start tamoxifen and am worried about side effects with that, but as it's currently my ticket out of chemo I will take it.

wallcat - am I reading your profile right in that you are now a 10+ year survivor with no chemo in your treatment plan? If so, that is really encouraging for me as well. I have a similar oncotype score to yours at 21.

Fukcancer - what did you ultimately decide? Update?

Fukcancer

I found an oncologist who was willing to give me CMF chemo. I’ve currently completely 2 of 6 rounds. The side effects so far have been minimal and I am happy with my choice. There is no risk of permanent hair loss or neuropathy. The worse part so far has been aggressive hair thinning. I’ve lost at least 50% of my hair. But it is temporary!

I also started lupron to protect my ovaries during chemo. I’m having mild hot flashes, some insomnia, and a much lower sex drive. Now I’m considering quitting the anti-hormonal treatment once I’m done with chemo. Seems like these side effects are worse, especially for premenopausal women like myself. And go on for years vs only months with chemo. I’m considered going with alternate methods instead of tamoxifen and lupron. But this is a whole new gamble than forgoing chemo, especially since the hormonal therapy is supposed to give me more benefit than chemo