Oncotype score 17- what's next?

At85

Good morning

I am new to this site so wondering if anyone may be in or was in a similar situation. I am actually freaking out that I may not need chemo based on my oncotype score. I know it's under 18 but it is so close. Also worried because of the lymph node involvement. I know chemo sucks but I feel like it would give me peace of mind. Any insights people would be greatly appreciated!!!

katcar0001

Amy - Welcome, and I am sorry--it is so tough to be in the intermediate zone, and you will get varying opinions from doctors. Maybe take your case to a tumor board? You did not mention the other characteristics of your tumor--stage, size, histologic type, # of nodes, etc. I had the same oncotype result. Two doctors told me absolutely no chemo--the risks outweighed the benefits, one doctor told me chemo was optional up to 4 nodes positive, and one said for sure because in Mexico they give chemo for all breast cancer tumors over 1cm regardless of everything else. I think if I had had any positive nodes, I would have opted for chemo. However, I would have wanted a Foundation One test done on the tumor to determine a more targeted course.

I hope that sure stage II ladies will chime in soon.

At85

Hi katcare. I just updated my settings so you could see my diagnosis/ treatment etc. Thanks for the reply. I haven't heard of a foundation one test. What does that determine? Also wondering how you made the decision to have a mastectomy vs a lumpectomy.

Icietla

Welcome Amy. Sorry you need to be here, but glad you found this site. Here you will find true understanding and connection with others in this situation.

My tumor measured at least 2.1 centimeters, appreciably larger than the size estimate from mammogram and ultrasound imaging. My OncotypeDx score was 13. My treatment with Letrozole was started shortly before the low/intermediate/high recurrence score range classifications were changed.

I had learned from my reading through much of the ILC forum section that ILC tends to be sneaky as it can be very difficult to detect by medical imaging. I had heard -- from sources I deemed knowledgeable -- various estimates of probability of ILC turning up in the contralateral breast also or possibly being there already but undetected. My maternal grandmother died of breast cancer at age 50. My breasts were very dense. I had still more increased risk factors too. I am quite physically challenged, with only very limited arm use from both biceps being torn, besides other disabling conditions. My breasts had long been very burdensome to me. I wished to be free of my breasts.

Here are some discussions that may interest you, some threads from the ILC section here on BCO. There are many more discussion threads from which you can learn a great deal about ILC in particular. You will find that some of us have had lumpectomies; some have had mastectomies; some have had chemo; some have rejected chemo; some have been advised against chemo; etc. The extent-of-surgery decision is very personal to each person. It is often said that each breast cancer patient makes the best (right, correct) choice for herself/himself.

https://community.breastcancer.org/forum/71/topics/834405?page=1

https://community.breastcancer.org/forum/71/topics/840697?page=1

https://community.breastcancer.org/forum/71/topics/826619?page=1

Sjacobs146

I am also stage IIA, my Oncotype was 23. My age at time of diagnosis factored into the decision to have chemo. I was 48. It was a close call, but my docs recommended it. I would avoid it if at all possible. I can't say that I have peace of mind following chemo. Someone I know just learned that she has a recurrence, one year after completing chemo. It really is a crap shoot. My doc did not recommend mastectomy, survival rate is the same with lumpectomy. Also. MX is not a guarantee that you will not have a recurrence. Some women go for the MX so that they never have to go for a mammo again. I decided to hang on to mine as long as I can

Hopeful82014

Re: the above statement: "My treatment with Letrozole was started shortly before the low/intermediate/high recurrence score range classifications were changed."

The classifications were NOT changed. It's extremely important to understand that ONE study used a different set as their low, intermediate and high ranges. However, the Oncotype DX still uses the original set of scores. If your Oncotype was 13, you are still in the low range, although under the TAILORX study you would have been classified as intermediate.

I'm not trying to pound anyone and I truly apologize for any hurt feelings. I do, however, believe that it's vitally important that we all get this straight. It's so easy for misunderstanding to become misinformation and that's one thing we surely don't need when we're dealing with cancer and faced with all these tough decisions!

Amy, each case is individual so you really need to have a deep discussion with your MO and dig deep into all your factors as well as your Oncotype, going beyond the simple number to the projected benefit of chemo and the risk of recurrence (if you haven't done that already). I know it's counter-intuitive, but a lower number may indicate that you would derive little benefit from chemo - and chemo does carry serious side effects, some short term, some longer term, as you know. It's also no guarantee whatsoever of anything. I understand that being node positive takes things to a different level - I don't think that ever quits feeling pretty frightening. All I can say is DO start a long list of questions for your MO and DON'T freak out until you have to! Good luck, and welcome to BCO.

Icietla

Thank you so very much for that, Hope8201. I am sorry for my misunderstanding, and I so hope I have not caused confusion for anyone else.

Hopeful82014

No worries - there was a LOT of misunderstanding going around after the TAILORX results were published last fall and you quite likely were exposed to it here By the way, welcome to BCO (although, of course, I am very sorry you're here) and to the stage II group. I hope you're enjoying your holiday weekend!

ChiSandy

Actually, the TAILORx study didn’t classify ODX scores <10 as “low risk” and those 11 and above as “intermediate;” it considered <10 to be the lowest risk, and data regarding scores 11-17 is still being compiled. A score of 17 still places you, for now, in the “low risk” category--depending on your age and other medical conditions, the benefits of chemo may not be worth its risks, because grade 2 ER+/PR+/HER2- cancers are relatively slow-growing and may not be as vulnerable to cytotoxic drugs as would be more aggressive cancers. OTOH, your cancer is lobular, 3cm, and you had one node involved. I’d see what the hospital’s tumor board says. BTW, you would still be prescribed hormonal therapy regardless of chemo--only the timing would vary.

At85

Thanks for all the responses. I have not heard of the Tailorx study. I will google it. There are just so many factors to consider- it really is overwhelming. One thing I'm wondering right now is why the heck they don't have better screening for lobular cancer. It's almost useless to have mammograms in my situatio

windingshores

I got 4 opinions due to some discordant testing. My Oncotype score was 8 and one doctor still gave me the choice of chemo. I didn't do it, but it was my choice. I had a grade 3 tumor with lymphovascular invasion but nodes were okay.

The grade 3 (and a highish ki67) would have argued for chemo, but the low Oncotype conflicted with pathology.  In the end, it was my current health status that determined my choice.

My situation doesn't match yours but I just wanted to say that many of us sympathize with this difficult situation with a score like 17,  with other factors that would have, at one time, determined you would have chemo.

The folks at Genomic Health can be helpful if you call them. Also find out how strongly your tumor responded to hormones. If high, then hormonal treatment would be the way to go most likely, without chemo.

Most of all, keep going until a doctor really explores this with you and you feel like you are done deciding! Like I said, 4 opinions here....

BarredOwl

Hi:

Regarding the TAILORx trial, as ChiSandy correctly notes, no results from the TAILORx trial for the groups scoring either 11 to 25 or 26 and above have been published as of this date.

In addition, the study population of the TAILORx trial included node-negative (N0) patients only. Per the clinical trial protocol available via NEJM, to be eligible for the study, patients must have "Negative axillary nodes" as "assessed by a sentinel lymph node biopsy, an axillary dissection, or both procedures". See also,

http://www.nejm.org/doi/full/10.1056/NEJMoa1510764#t=article

Study Patients

The study included women 18 to 75 years of age with axillary node–negative invasive breast cancer that was estrogen-receptor–positive or progesterone-receptor–positive (or both) and that did not overexpress HER2. Patients had to meet National Comprehensive Cancer Network guidelines for the recommendation of adjuvant chemotherapy,(21) including a primary tumor size of 1.1 to 5.0 cm in the greatest dimension for a tumor of any grade or a size of 0.6 to 1.0 cm in the greatest dimension for a tumor of intermediate or high histologic grade or nuclear grade (or both).

Node-positive subjects were not included, so the findings from this trial do not inform understanding of the recurrence risk of node-positive patients.

There are other validation studies in the node-positive setting. However, it would be best to discuss the results of the studies in the node-positive setting with your expert medical oncologist, how robust the findings are, and how these studies may or may not inform decision-making in your particular case, including nodal status and other relevant clinico-pathologic features (e.g., age).

BarredOwl

Anonymous

Hi Amy, as you can see my stats are very similar to yours, except your tumor is lobular and mine is ductal. My oncotype was 15. I didn't have LVI and the node was 4mm of cancer, no extension. Also, in my surgical report, the mitotic index was 1 out of 3, which means the cells were dividing slowly. The other two categories that make up grade were 3 out of 3. Another thing was that 30% of my tumor was DCIS. My ki-67 was 25%, but that didn't match up with the mitotic index, and none of the doctors seemed to care about that. I got a second opinion and he said that the benefit of chemo over 10 years was 5%, that's not taking oncotype into account. He said he can't comment on whether oncotype should be considered in node positive because it's just too soon to tell. But he did tell me that oncotype has been validated in all previous studies, and the RxPonder will probably be the same. I am sorry to bore you with so many details but I think it's important to know as much as you can before making a decision. BarredOwl always gives great information, that should help you too.

For me, I placed so much weight on the oncotype, and I was thankful my score was low risk. If it was 18 or higher, or if I had LVI, I would have gone with chemo no question. It was the most stressful time of my life. But I am glad it's over and now I live without thinking about cancer so much. Tamoxifen side effects are not pleasant but it is nothing compared to what some women and men go through with chemotherapy, God bless them.

Hugs to you and I know you will make the right decision because you are being proactive in your treatment. Wishing you all the best!

Lenn13ka

Hello Amy,

Same stats as you except a smaller tumor. Ductal/ lobular mix . Extensive LVI but Dana Farber stillsaid no chemo. I agreed. 2 1/2 years on Tamoxifen and now on anastrozole. I am also in a clinical trial with Palbociclib. Good luck with your decision.

Usernameforreal

Hi Amy,

My surgeon and MO were REALLY pushing me to have chemo first before surgery to shrink my tumors but I was very resistant to the idea of chemo and wanted surgery first before deciding on a treatment course. Ends up my OncDX score was 15 and I cried tears of joy at the relief of being in the low risk group. Then I got angry thinking about how horrible it would have been to have gone through chemo to find out that after the surgery, there was no benefit to it. My gut reaction told me to avoid chemo at all costs, and it ended up being the right decision miraculously.

I also have one lymph node positive with extra nodal extension. Which is unsettling to say the least, but I hope the radiation to my axilla is taking care of that. I wanted to treat my disease locally with lumpectomy and radiation. Not with systemic chemo. I wanted to spare all of my other healthy organs the toxicity of chemo and just treat only the parts of my body that had disease in it like my breast and axilla. This is what I was most comfortable with, so I would trust your instincts. If you think you'll sleep better at night doing every treatment modality available to you, then that's your answer. For me, I know I would lose sleep worrying about what horrible and irreversible side effects the chemo was doing to my previously healthy organs.

Today was day 26 out of 33 radiation treatments. I'm in the home stretch, and next week i start boost. Then I'll start tamoxifen. Good luck with your decisions, I wish you the best. ❤

---

sschreier

I hope some still follow this thread. I have an octo of 17. My tubular is 2, nuclear grade 2, and mitotic 2. My tumor was 8mm and diagnosed at Stage 1A. I am 39 years old. I to was given the choice of chemo and feel mentally I have to do. I start July 18. I am so stressed if its the right decision but feel I have to do all I can now because if reoccurence in the future I will I always second guess"what if.:

I just started writing on the forum and any advice would be great. I guess the bottom line is we have to do what is right for us,