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Onctoype 16- premenopausal…


what did you do when you were premenopausal and in what the doctor calls the “gray area” (16-25) for chemo and given the option? I’m not sure what to do because I had some things that worried me on my path report and the radiologist oncologist mentioned it as being “more advanced”. I had one of four nodes positive with extranodal extension and also had lymphovascular space invasion. I’m 35 years old. Had a double mastectomy. HR positive. I know a lot have been in my position and chemo sucks, but at the same time maybe would give me more of a feeling that I got “it all.” But does it even work like that? If I’m HR positive, does chemo even kill the cells or will it be a waste? I’m not sure what to do. Any insight with your experiences? Thanks.


  • maggie15
    maggie15 Member Posts: 999
    edited May 17

    Hi @ebfitzy , The "gray area" is a complicated place to be. Chemo should work as projected by the Oncotype score (benefit may not outweigh side effects) if you are HR positive. There are some cancer cells which are resistant to chemo and your Onco score takes that into consideration. I was similar to you but just barely in the above 50 "gray area" and did not do chemo because of the more likely adverse effects from being older. At your age you will probably tolerate chemo better and have a longer lifespan to plan for.

    LVI is something that is not taken into consideration in most treatment algorithms but from what I have read those with it are more likely to have a recurrence. I had some of those unaccounted for unfavorable characteristics (LVI, 1/3 nodes, close tumor margins, multiple radial scars in margins) but my team thought that axillary radiation would take care of all that. Right now I am in the process of trying to diagnose something the radiologists have decided is a bone met or a benign lesion that looks like one but is in a location that is difficult to biopsy. This has given me pause for thought. Statistical information which is all we have to go on can't predict what will happen to us as individuals. If you feel like you would regret not having chemo if you had a recurrence, go for it. Whatever happens I still think I made the best decision I could at the time but nobody can foretell the future. All the best in deciding what to do.

  • kaynotrealname
    kaynotrealname Member Posts: 410

    Up to you, EB, as it should be but I did chemo. I was in the more favorable space with it having a 23 on my oncotype and if I was over 50 could have avoided it but personally speaking I was glad to have the option. I did four rounds of T/C chemo three weeks apart. Not fun but doable and I recovered fully. As far as you, a 16 does put you in the might be favorable department in chemo and considering your other cancer characteristics personally speaking if I was you I would go for chemo. Would it be effective? Who knows whether it will be effective for anyone. But for me I wasn't comfortable unless I used all the medication my doctors had available. If it came back I wanted no regrets and I would have them if I skipped any treatment that might have killed the damn thing.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,952

    I agree that it’s up to you. After looking at all the pluses and minuses of your choices, you need to go with what’s best for you. Please understand that no treatment guarantees that you will never recur and that the experiences of others is not predictive of what you will experience.

    I was stage IV de novo with a solitary bone met. I have my primary mo and had a second opinion mo. My primary mo recommended an AI and radiation to the bone met. My second opinion mo said that although she thought was reasonable, she suggested chemo as another course of tx. Many MO’s who see patients with limited mets often like to throw everything at it to prevent progression but I figured that I could do chemo if the AI/rads did not work. The result? 12+ progression free years with mbc and I am currently on no tx at all. My point? There is clearly more than one approach and what is “best” for one patient isn’t necessarily best for others even when their disease seems similar. No mo today would recommend the course of tx I have followed yet it worked for me. My gut told me to try the gentler path first with the knowledge that I could move on if needed. This is not what most choose to do but for me, my gut instinct has proven right, so far.
    All the best to you with whatever you choose.