Chemo vs no chemo for low Onco score

Options
kaos1
kaos1 Member Posts: 10


hello! Throwing out my DX to see if any of you can offer some guidance or share similar stories! I got my oncotype test back late Fri afternoon with a score of 8. Given the low score, along with my highly ER/PR+ (98%/80%) status, my MO is changing her treatment recommendation from chemo/rads/Tamo to Rads/Tamo/AI/ovarian suppression. I'm 45. I was all geared up for chemo before the results came in, but the onco test is showing very little or no benefit to me and I don't want to be overtreated. Anyone going through a similar treatment plan?

Comments

  • Gully
    Gully Member Posts: 268
    edited December 2013


    Hi kimosha,


    I was also diagnosed at the age of 45. You can see my treatments below. I had bilateral bc so I had two oncotypes. One side was a 5 and the other 19. I had BMX and chose to do the TC X4 because of some focal LVI. This chemo regime is doable but not a walk in the park either. One thing you may want to think about is that I have been slammed into menopause because of the chemo, so no need for me to do the ovarian suppression LOL, but I am suffering the effects of meno. In hindsight, I would not have done the chemo if the LVI was not there. Good luck with your decision....its a tough one.

  • kaos1
    kaos1 Member Posts: 10
    edited December 2013


    Thanks for your response, Gully. Does LVI have to do with lymph nodes? It looks like you're done with your treatment now, which is great. What's been your biggest SE with menopausal issues? Not right we're getting pushed into it early, though I think of it that we're just slightly ahead of our peers, LOL.

  • Racy
    Racy Member Posts: 2,651
    edited December 2013

    It will be great if you can avoid chemo. But I see you had three positive nodes. Maybe you should get another opinion.

    Best wishes.

  • Gully
    Gully Member Posts: 268
    edited December 2013


    Hi Kimosha,


    Hot flashes, hot flashes, hot flashes! Only at night, but I would wake up six or seven times a night completely soaked in sweat! I was not sleeping well at all. I have recently been put on Gabapentin to treat them and am doing much better! LVI means that the cancer cells found their way into the blood vessels and or the lymph vessels that drain into the lymph nodes at points around the tumor site. It is associated more with local recurrence than distant, but it was enough to put me over the edge with my chemo decision. I did not want to look back at my choice years down the road and think that I could have done something more if it does come back. My nodes were neg. I have to agree with Racy about the three pos lymph nodes though. Maybe a second opinion would help you with your decision. My MO sent me to Dana Farber for my second opinion, that is were the LVI was discovered, the pathology at my local center did not pick it up. I had a surprise cancer pop up in the prophylatic side as well, I just thought the odds were against me so I took the "aggressive" treatment. My MO would have supported me either way. Well off to get my tatoos done, the last recon step I think, guess we will see!

  • ruthbru
    ruthbru Member Posts: 57,235
    edited December 2013

    I would think that positive nodes would trump any test. With positive nodes, you KNOW that the cancer has already spread outside the breast. Plus you are young & it's ILC. I, myself, would be very uncomfortable NOT doing chemo. At very least, I think you should get a second opinion!

  • Ridley
    Ridley Member Posts: 634
    edited December 2013

    I would also suggest a second opinion -- I have an onco score of an 8 as well, and no chemo has been recommended, but my nodes were clear.   Is the cancer in the nodes microinvasion?  Maybe the thinking is that the radiation to that area will suffice? 

    Also -- if your case hasn't been presented to the tumour board and you are at hospital that has one, ask if it can be presented.

    Best of luck in your decision.

    Ridley

  • corgi09
    corgi09 Member Posts: 53
    edited December 2013


    I'm older but had a very similar onc test and ER/PR diagnosis. Also 2 nodes with micromets, one extra nodule. Uni, Rads and Tamoxifin. I was almost menopausal at the time. No chemo. My MO didn't want to over treat too, as long as the the Tami works, and I'm planning on 10 yrs, she felt it would be over treatment and might curtail my options if there is a reoccurrence. 2 yrs out I'm doing well. Its difficult to think it might come back but I think that's something that can happen to any of us.

  • ruthbru
    ruthbru Member Posts: 57,235
    edited December 2013

    Another thing that you consider is that, although most people do OK, not everyone handles the anti-hormonals well, and some people either choose, or need, to quit them before their prescribed time is up (especially if they change it to 10 years....yikes!). And, of course, Stage IIb is farther along the road than stage I, so treatment choices that make perfect sense for stage I may not make as much sense for where you are.

  • KBeee
    KBeee Member Posts: 5,109
    edited December 2013


    You also need to keep in mind that the oncotype is based on initial studies of post menopausal women, rather than premenopausal, though there are ongoing studies with premenopausal women. I would definitely get a second opinion. Tamoxifen is the most important thing for you, but I am 43, had a 2.0 cm tumor, no lymph node involvement, oncotype 16, and just completed 4 cycles of TC, and I feel very confident in my decision. Took my first tamoxifen this morning. Good luck. These decisions are not easy, and there are never any black and white definitive answers.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2013


    If I were you, I'd get a retest. Doesn't make sense, given your stats. Hard to believe an oncologist in the Boston area would base such a major decision on one test, especially as you are so young.

  • momand2kids
    momand2kids Member Posts: 1,508
    edited December 2013


    Hi


    I see that you had 3 positive nodes. Everyone is different, but for me, with positive nodes, I would choose chemo. I did not have positive nodes, but was higher on the onco test, so I chose chemo. I would get a second opinion. Research around nodes, chemo and the oncotype continues to change.... not really sure what the best practices are now (I am over 5 years out)


    I was treated at MGH and Dana Farber-- lots of good oncs there for second opinions.

  • ziggypop
    ziggypop Member Posts: 1,071
    edited December 2013


    Hi - Boy, it would be tough to chose chemo if your MO said you didn't need it, and usually I would say go with what the MO says, but in your case, I would get a second opinion. It's a great thing that your onco score is low, but with 3 positive nodes, from what I've heard chemo is usually a given. At a minimum, if the second opinion was to not do chemo, it would set your mind at rest about not doing it. And if the second opinion said do it, then if you decide to do it you would have more sort of 'back-up' that what you're doing is necessary. For me, I think getting through chemo would have been harder if a doctor had not told me it was in my best interest (in my case it was very cut and dry that I needed it). Keep us informed as to what happens.

  • coraleliz
    coraleliz Member Posts: 1,523
    edited December 2013


    You might want to look into participating in the Rxsponder trial http://www.swog.org/Visitors/S1007/patients.asp It's a stage 3 clinical trial trying to validate smaller studies that show the oncotype testing is relevant for node positive (1-3 nodes-I think) BC. I'm node positive & did not have chemo. I was given statistics & told I needed to decide for myself. My oncoscore was "4". I had IDC & was grade 1. I was not able to participate in the trial I mentioned above. Currently just over 2years into my 5 year Tamoxifen course. It was rough at first, but really felt I needed to ride it out. I took my time making my decision. Didn't really sink in that I wasn't having chemo until I was laying on the table getting RADs.

  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited December 2013


    With 3 positive nodes I'd do chemo. Good luck!

  • kaos1
    kaos1 Member Posts: 10
    edited December 2013


    Thanks, all, for your input. After meeting with my MO I have opted to not do chemo but radiation plus rigorous hormone therapy, including oophorectomy most likely in near future , which my doctor thought would be an appropriate course for me. It was a difficult decision, but was encouraged when my doc got same feedback from the chief oncologist at Dana Farber. I do feel good about my decision now.

Categories