Confused about treatment

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kaceyr0423
kaceyr0423 Member Posts: 31
edited August 2016 in Radiation Therapy - Before, During, and After

Hello everyone, I have just been told that chemo isn't an option with an oncotype of 20. My case is a bit complicated because I have a very active case of Lupus. Rad Onc said radiation will be very dangerous...connective tissue problems as well as risk of lymph edema, even though only 4 lymph nodes removed and all 4 were negative. She is willing to do it, just made me sign extra waivers and wanted me to know it's extra risky. My problem is they have scared the ever living hell out of me and now I don't know what to do. I'm on hormone therapy, (just started yesterday) and was actually hoping for chemo,because I felt that would be less dangerous than the radiation, and I was told by my rheumatologist that it would also help my Lupus. The Oncologist made the decision without me, and pretty much said sorry about your luck, it's not an option......however, 2 weeks ago she was all about chemo (before she had the oncotype). I have been reading a lot on the discussion boards and there are many cases where chemo was done with a 20 oncotype, so I'm just wondering why the change of heart all of a sudden? I was told by the radiation doc to go back to the surgeon and have a mastectomy (after already having lumpectomy) and then the Oncologist also hinted at this as well. I didn't have one because the surgeon assured me it wasn't necessary. Why, now, after the fact, would I go back and do it??? So now they are taking the let's just watch it approach...and I am absolutely not comfortable with that. What would you do??

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited August 2016

    Both chemo and hormonal (anti-estrogen) therapy are systemic treatments, designed to keep the cancer from coming back elsewhere in the body, in case any cells escaped. So, Kacey, you can look at it this way: Low Oncotype tumors are the kind that only need anti-estrogen therapy and High Oncotype tumors are the kind that need chemo plus anti-estrogen therapy. I know 20 is in the intermediate, gray area, so then they look at all the factors of your particular case. Negative nodes is a good sign.

    Keep in mind the difference between local and systemic therapy. Radiation is a local treatment; in other words it is designed to kill any stray cells in the breast and keep the cancer from coming back in the breast. The standard of care for local treatment with negative nodes is lumpectomy plus radiation, or mastectomy without radiation. The two options have similar survival. So if someone can't have radiation, a mastectomy would be the alternative. I would ask the doctors-and they should meet as a team to discuss your case--for an estimate what your risk of local recurrence would be with lumpectomy only vs. mastectomy. Also, if you don't have a mastectomy, will they consider a yearly breast MRI for better detection of ILC. If lupus would give you an increased lymphedema risk with radiation, that is an important consideration. Everything is cancer-land is about risks vs. benefits.

    It sounds like your doctors may not be meeting as a tumor board where the pathologist, surgeon, medical oncologist, radiation oncologist, etc. all talk together about a person's treatment plan. You might consider a second opinion at a university hospital or NCI cancer center where that is standard. And see if a rheumatologist can join them, hopefully yours.

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