bilateral mastectomy/MRI

ohilly
ohilly Member Posts: 441
edited March 2014 in Breast Cancer #1
This is not the first time I have posted on this topic, but I am hoping to get more replies. I had a mastectomy in February, had invasive intraductal which did not spread to the lymph nodes and a small tumor(1.1. cm). After I had the mastectomy, I found out I was BRCA positive and in Sept. will have a preventive mastectomy of the other breast. I am terrified of getting cancer again and want to have annual 'breast' MRIs although I will have had a bilateral mastectomy. I have asked several doctors about this, and they all say that the monitoring after the mastectomy will consist of just 'palpating' me, that MRI is not considered necessary after a bilateral mastectomy. I don't care what they say: I want an MRI once a year anyway, even if I have to pay for it out of pocket. My sister is a pediatrician and agreed to order the test if no other doctor will, but I am still hoping to convince my breast cancer doctors to order it. Has anyone else had MRIs after a bilateral, and if so, how did you convince your doctors? I also saw a nationally recognized BRCA expert at the University of Chicago for a second opinion: she told me I should at least have an MRI before the preventive mastectomy to be sure I don't have cancer in the second breast. I am going to talk to my breast surgeon again about this, but the last time I talked to her she said she would not do this, although she agreed to perform a sentinel node biopsy at the time of the preventive mastectomy. Her rationale is that I already had chemo for my cancer and will have had a bilateral mastectomy, so what would I do differently if I do find out via MRI that I have cancer in the other breast that is going to be removed in the preventive procedure? My argument to her is going to be that on the off chance they found an aggressive cancer in the other breast, they MIGHT do something different, like giving longer or different chemo. I feel frustrated, like my doctors don't want to help me although I have checked everywhere and what they are saying (no MRI with bilateral mastectomy) seems to be the standard of care. Still, I want an MRI! Any advice? Ohilly

Comments

  • Unknown
    Unknown
    #2
    I certainly understand your concerns ohilly.
    I am a 22 year survivor and have had only one MRI in my entire life and that was for a different issue.
    Stick to your guns and do whatever you must to get peace of mind. How can they refuse if you are willing to pay for it yourself?
    I agree about the MRI before your second mast. If they did find anything abnormal (God forbid) it might have a real effect on how you are treated in the future. Can't imaging that a reputable oncologist would not see the wisdom in that.
    Good luck, hun, and God bless.
  • Unknown
    Unknown
    #3
    Ohilly, I don't understand why they are refusing your request. Being proactive is a good thing especially with cancer. I had a lumpectomy and sentinal node biopsy 2 yrs ago and I have had 3 MRIs and the doctor at the breast clinic where I was diagnosed has scheduled another MRI for me for next month "just to be safe"--they do this at or around the 2 yr anniversary of diagnosis for all of their breast cancer patients. I asked my medical oncologist about it and he said he agrees that MRI is a good tool to use with mammogram and palpation to monitor and make sure theres not anything going on that shouldn't be(recurrance). It gives you peace of mind and is worth every penny. I think you should stick to your guns. Good luck and keep us updated on how you make out. Eileen
  • lfly
    lfly Member Posts: 50
    #4
    I am no expert but i think it would be a good idea for MRI before next surgery. If your willing to pay out of pocket then do what you need to and don't let them stop you.

    I heard from different ones over the years that their opinion was that when being opened up during surgery is what caused their own CA mets. They felt like maybe they shouldn't even have had the operation.

    My own experience was that i asked the surgeon to remove both. He said he wouldn't because i was only 32 yrs old. I still wish he would have. I never had an MRI before the surgery. Only a mammogram and needle biopsy. Once a month Onc "feels" me up on both sides. Every 2 or 3 months i go through the whole multiple scan business unless i stay in "remission" longer than a few months.

    It's nice to not have to hang out in hospitals and Dr offices. I hope my day is coming again.

    Hang tough,lorie

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