Oncotype 17 --what have others decided about Chemo

Tbirdy321 · November 2016

My oncotype is 17. Since I am borderline I get to make this decision --although MO would recc short treatment of 4 cycles. Would value some opinions from others please. I have my 2nd op tommorrow and I am very terrified I may have 2 answers. If anyone could help. The MO stresses the oncotype predicts recurrance in 10 yrs. Treatment would be for years 11-30. I am 49.

Thanks

Mombytheriver · November 2016

one of my oncotypes was also 17. Based on all of the other data, my MO recommended no chemo. As it is just below the cutoff of 18, it can be a tough call. I think may be worth getting a second opinion if you are stuck between two choices. Sending hugs - you will soon get to a place of comfort.

Patti

PoohBear-61 · November 2016

Hi Tbirdy

My onco score was 18 ...diagnosed at 46 ...now 50. I was offered 4 rounds of chemo OR Zoladex shots for 2 years .

I did the shots ...less side effects than chemo and very tolerable .

Same results /recurrence rates for either option .

Good luck !!!

Carlsoda · November 2016

Mine was 16 and it wasn't even on the books as a possibility! Yay!! good luck with your decision

Hopeful82014 · November 2016

Tbirdy, did your Oncotype results show the percentage benefit of chemo vs. tamoxifen only? If so (and it should) I would definitely take that into consideration. A score of 17 is still in the low range so if there's not much of a predicted benefit from chemo (as opposed to likelihood of recurrence) it may not make sense to do chemo.

When you have your 2nd opinion consult, please be sure to raise that issue, as well as your age and any other factors. Don't leave until you feel that your questions have been answered to your satisfaction. And, as always (you've probably heard this before) if at all possible take a list of questions, as well as a good friend or family member who can think through some of the responses as well as taking notes. If at all possible to record the meeting (on your phone or whatever) you may find it extremely helpful to listen to the session again, in the quiet of your own home. Good luck.

hummingbirdlover · November 2016

Hi tbirday,

I am also 49 (well, for two more days anyway) and had an Oncotype score of 17. My MO did not recommend chemo and told me in his opinion the risk outweighed the benefit. Although I would have been much happier with a "lower" low number, he said he was comfortable with Tamoxifen as a treatment plan and I considered myself blessed and put it behind me. Good luck with your decision. None of these choices are easy or good. Take care.

PoohBear-61 · November 2016

http://www.ascopost.com/News/20664

RE : SOFT trial

This article regarding the SOFT trial may be helpful to you for your visit on Friday.

Good luck Tbirdy ....ill be thinking of you on Friday.

Happy

wendymk2016 · November 2016

hummingbirdlover

How large is your tumor?

If it is very small and with ER/PR+, doctor normally will not recommend chemo. Oncotype DX 17 is just close to the borderline, but I think it is safe enough to skip chemo. Lots of my friends even got higher onco score and also opt no chemo, they are doing fine and never regret their choices.

hummingbirdlover · November 2016

Hi Wendymk2016,

It was 9 mm but was upgraded from Grade 1 to Grade 3 after final pathology. I got the impression it was the Grade 3 component that prompted having it sent in for Oncotype scoring because up to that point it had all been "as good of news as possible" considering, but the Grade 3 was not great news.

Kessa619 · November 2016

my oncotype was 18. my MO first recommended chemo and then backed off. he left the decision to me, but noted that there is now mounting evidence that chemo isn't effective for luminal A. he consulted a few experts who said they don't really recommend chemo until the oncotype reaches the low 20s. i ultimately opted out of chemo because I felt that there were no proven benefits and substantial risks. In the end, i chose to do Lupron shots plus an AI. it was such a close call and really an agonizing decision so i am sending you lots of positive vibes.

KentRunner · November 2016

I hope it's okay for me to ask a question here. Five weeks ago I got the results of my oncotype indicating a score of 12 for one tumor and 16 for the other. I was thrilled to know I didn't need chemo! Well, they all say this is a roller coaster ride for everyone. Today I received a call from my MO saying there had been some type of mistake made (something about one tumor being tested twice, I think?), and the retest showed my scores to be 16 and 20. She said due to my age (I just turned 45), she recommends chemo. What a blow! I've been happily taking my tamoxifen and experiencing no side effects and am gearing up for my next reconstructive surgery. Now what? Every ounce of my being says don't do chemo, but I want to make an informed decision and not just an emotional one. I have two kids, ages 13 and 9, so I have to do what will keep me around for them. My husband and I are going in to meet with my MO Thursday afternoon, so hopefully we can get some better answers as to what just happened. I'm not even sure what questions to ask. Can anyone recommend what I should be asking? Thanks!

gracie22 · November 2016

A lot of people in your situation get a MammaPrint, It tests a wider range of genetic factors and results are high or low risk (no intermediate.) Sometimes it is covered by insurance, sometimes not, but since you are in the low intermediate territory you may find it to be worthwhile to have as much info as possible before making this big decision.

jenny153 · November 2016

Hi... I had an Oncotype score of 18 and my MO did not even consider chemo. She said the risk of chemo would far outweigh the benefits. I was 50 when diagnosed with stage 1 grade 1 bc, no node involvement. Go by your instinct and if you are still concerned, look into getting a second opinion.

KentRunner · November 2016

Thanks gracie22. I've never heard of a MammaPrint. I'll definitely ask about that. Jenny153, I think if my MO really pushes for chemo, I'll get a second opinion. She seems like the kind of doctor who really listens to patients, so we'll see what she says. Thanks for your help.

BarredOwl · November 2016

KentRunner:

Jenny153 has posted elsewhere that she is node-negative. If you are actually node-positive, then the medical advice you receive might reasonably be expected to differ in some way.

I am confused by your profile information, which is showing Stage IA but 1/2 lymph nodes positive.

What type of lymph node involvement do you actually have? Isolated tumor cells, micrometastasis, or macrometastasis?

https://cancerstaging.org/references-tools/quickreferences/Documents/BreastMedium.pdf

Isolated tumor cell clusters (ITC) are defined as small clusters of cells not greater than 0.2 mm, or single tumor cells, or a cluster of fewer than 200 cells in a single histologic cross-section. ITCs may be detected by routine histology or by immunohistochemical (IHC) methods. Nodes containing only ITCs are excluded from the total positive node count for purposes of N classification but should be included in the total number of nodes evaluated.

Micrometastases (greater than 0.2 mm and/or more than 200 cells, but none greater than 2.0 mm)

Metastases with at least one metastasis greater than 2.0 mm

BarredOwl

KentRunner · November 2016

BarredOwl, I had two lymph nodes removed during surgery. The pathologist at the time found no cancer in either node. When they ran the test again, a "speck of something" was found in the sentinel node with nothing in the second node. My MO said it was not anything to warrant radiation or chemo at the time. As for Stage 1A, that may not be correct. I know I was considered Stage 1, but as for the "A," that I'm not sure of. I can't find it in my records.

BarredOwl · November 2016

Hi Kentrunner:

You can check your surgical pathology report (which you should definitely obtain for your review and records) for the pathologist's description of the node. The pathologist may have also assigned a lymph node status designation ("N" component of "TNM" stage).

With one node:

If it was deemed to be "isolated tumor cells" as detected by IHC: N0(i+) or pN0(i+)

If it was deemed to be a "micromet" (less likely with the description, but your report controls): N1mi or pN1mi

(For completeness, if at least one "macromet": N1 or pN1

For example, if a person had a tumor ≤ 20 mm (2 cm) in greatest dimension, size-wise, they would be pT1. If that person had isolated tumor cells, they would be pT1 N0(i+). Look for something like that in your report or ask your MO if you are interested.

BarredOwl

warrior6 · November 2016

I just got my Oncotye back and am a 21..

I'm a young 64, had mastectomy but will need Radiation due to "unclean" margins..

My oncotype is intermediate as a 21 and it is up to me and the oncologist regarding chemo...any input?

Stage 1A IDC, 1.3cm, stage 2, 0/8 nodes, unclean margins, Oncotype 21

stellamaris · November 2016

warrior6 and tbirdy - I was diagnosed at 65 and am now 66; ILC 4.5 cm, node negative; mx because they could not get clean margins. My Oncotype dx was 27. My MO did not recommend chemo. He had 2 reasons: Chemo is not as effective against ILC and the chemo would only have improved my risk of recurrence by 3%. In his opinion that was not worth the side effects. I am on Femara for 5 years (AI as I am post menopausal). My MO said that AIs are a bigger gun than tamoxifen, so my recurrence risk of 18% was probably lower, because the Oncotype dx bases the score on tamoxifen.

I also have other conditions (e.g. rheumatoid arthritis) for which I also take life long meds (immunosuppressant), which may have influenced his decision.

Women who are younger, or who have node involvement, very large tumours, and other considerations may want to consider chemo, but I am comfortable going forward without it.

I feel good, am having no health issues and can keep up with the herd. As long as I can preserve quality of life without chemo, I am going for it.

It's not an easy decision - hugs and good luck

Misty879 · November 2016

I opted not to do chemo for my situation. I'm 37, diagnosed at 36, 1.4cm tumor, no lymph nose involvement, no LVI, and I was able to keep my own nipple during my surgery because there were clean margins in the nipple/aereola area. My oncotype score was 24 which is considered to be smack dab in the middle of everything. My MO said chemo was up to me, but that he was ok with me saying no to it. He said without any treatment I have a 20-30% chance of recurrence, with tamoxifen it lowers it to 10-15% and if I were to have chemo the benefit would be an additional 3-4%. He said he would give me 4 rounds of chemo if I wanted it because the intermediate scores aren't well researched and there isn't a lot they know about how chemo benefits people with intermediate scores. He said he offered it because that would be throwing everything possible at it and there are some people who would take even a 1% benefit. But he said I wasn't someone he needed to try to convince to take chemo because he said the benefit was little, but that it was my decision and he'd do it if I said yes.

I'm trying not to have any hard feelings about saying no to chemo, but I'm also not taking tamoxifen either. I can't bring myself to take those pills. I had the mammaprint test ordered but haven't heard back from my doctor on whether or not the results are in. He doesn't believe in the mammaprint testing and only ran them because I begged him and because I got an appointment with 3 other doctors to see if one of them would order the test. I was just curious as to what the results are.

KentRunner · November 2016

Thanks, everyone, for your help and comments. I met with my MO Thursday, and I felt we had a really good discussion. I thought when she called me on Tuesday that she was recommending chemo (the shock probably had me hearing things). What she actually said was now that my oncotype was in the intermediate range, she was offering me chemo...if I wanted it. She did not come out and say do it or don't do it. She left it completely up to me. I did feel, however, that she would prefer I not do it because my score was only 20. She gave me quite a list of negative side effects if I had chemo, and since my chance of recurrence only went up be 2% with the change in scoring, I felt there was not a good enough reason to start chemo. She completely supports me. I did ask her about the mammaprint test, and she didn't feel it was necessary. I guess I would have pushed for it if she felt I needed chemo.

Misty, I was really dreading taking tamoxifen. Historically I don't take a lot of medication, preferring natural methods instead. I read so many accounts of women who had horrible side effects from it, so taking that first pill was hard. I'm one of the lucky ones, however. I have not had any of the side effects I was dreading...so far. I've been on the tamoxifen for 5.5 weeks, and my MO said if I haven't had side effects yet, I probably won't ever really develop anything too severe. I don't know if that is what you are worried about with tamoxifen, but just know not everyone has a bad experience. You could also try them and then stop if the side effects hit you too hard. If you're comfortable with your decision, that is great. I just wanted to give you another person's experience in case you were at all unsure. Good luck with everything!

rosannadana · November 2016

Tbirdy321,

I feel your angst. I recently received my oncotype score of 17. I was very anxious about the prospect of having to have chemo, but my doctor did not recommend it. I also went for a second opinion at a well-known cancer center and the medical oncologist there said I definitely was not a candidate for chemotherapy. That was a huge relief, as I felt that 17 was awfully close to 18, the bottom end of the "intermediate" range, and everything I had read said if yr score falls in the intermediate range, it is up to you and your doctor to decide. Having the 2nd opinion agree with my doc, and being so definite about no benefit to chemo for me was such a relief. I hope you can find some peace with whatever decision you make. My Dx is IDC, lumpectomy, getting ready for radiation and then an aromatase inhibitor for 5 to 10 yrs. the 2nd opinion doc said the endocrine therapy for 5 to 10 yrs is the most important part of my treatment. i wish you well!

GLK · June 2018

Hi. In light of the new tailorx study results, do you think woman under the age of 50, who had a score between 16-24 and who have previously been told they do not need chemo be concerned. The goal posts seem to have been moved for this group. Has anyone’s any info on this?

Oncotype 17 --what have others decided about Chemo

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