Survivorship Care

Rayna_666
Rayna_666 Member Posts: 24
edited October 2019 in High Risk for Breast Cancer

I was wondering how everyone's oncologists handle survivorship care. I am 36 years old and about 2 years post triple negative breast cancer. I had chemo, bilateral mastectomy, and radiation. I also have the BRCA1 mutation and had some lymph node involvement. I had all of my treatments and surgeries in Wisconsin and I adored my doctors. They did not do much for follow-up other than a basic exam every so many months. They said blood work and scans were unreliable and more stress than they are worth.

I have recently moved to Texas. My oncologist now had me do a bunch of blood work (CBC, tumor markers, etc.) He also wants a PET scan. Is this excessive? Or was my oncologist in Wisconsin too lax? They were amazing all around and I trust them. I was curious how others handle it.

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  • gb2115
    gb2115 Member Posts: 1,894
    edited October 2019

    What stage was your cancer, and how extensive was your lymph node involvement? Did you present any symptoms that make them want to check for spread?

    Getting a routine PET doesn't sound normal for 2 years after an early stage cancer. Unless it's different for triple negative? I don't know.

    I had one lymph node involved. I had a CT and bone scan done right after surgery, but then it's the mammogram yearly. No one has done blood work and from what I can tell my doctor is following standard of care.

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  • Rayna_666
    Rayna_666 Member Posts: 24
    edited October 2019

    It was stage 2 or 3 (I was right on the brink between the two) and 5 lymph nodes. And, no, unless he was concerned about occasional back aches but I attributed it to my horrible posture that I have been consciously trying to correct.

    I did get ahold of my oncologist from Wisconsin and she said that they do not do all of those tests because they feel that the anxiety and possible false positives do not justify the benefits. She said she follows national standards and she would not.

    I mean maybe it is because he did not treat me and wants to get a picture of any possible issues? And I guess it probably wouldn't hurt me to do it. It is just kind if stressful and brings back old memories...

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  • Beaverntx
    Beaverntx Member Posts: 3,183
    edited October 2019

    Rayna, I am in Texas also and am being followed much as you were in Wisconsin, with the exception of mammograms which are now annual (only had a lumpectomy so still have breast tissue to be checked). I suspect you are right that your new physician wants a baseline of your current status. As I read threads here I see that some are followed with more tests than others, even with similar stats. You might want to ask how often your new physician repeats such testing. All that said, welcome to Texas!

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  • Rayna_666
    Rayna_666 Member Posts: 24
    edited October 2019

    Thanks! I guess I should be thankful that he is being thorough. It just kind of took me off guard since I was not expecting scans. I was curious if anyone else has had these suggestions for follow up.

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  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited October 2019

    Sounds like you have a wonderful new oncologist, just as you had a wonderful oncologist in the beginning. I agree, since you didn't start with him it makes sense. For myself, I would be grateful to have this level of care.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited October 2019

    I too would be thankful that someone wants to take a close look.

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  • Scrafgal
    Scrafgal Member Posts: 631
    edited October 2019

    I am in Texas too....I had lots of upfront testing because my tumor was aggressive and they needed to be sure that I was node negative...they even sent me to the expert among their experts for a particular test because they just needed to be sure...I went there first, so when active treatment ended, I never had a followup PET, CT etc because there was no need at that point. Almost everyone that I speak with that comes here after they have been treated elsewhere gets more of a workup than they expected because the doctors wind up changing the original diagnosis 20% of the time. So, some might think it is too much testing but on the front end of a diagnosis, I didn't mind really. They only do blood work and a clinical breast exam every 4 months now...annual mammogram...a bone scan periodically because I started an AI. I will go to every 6 months blood work soon, presuming all is well.

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  • Scrafgal
    Scrafgal Member Posts: 631
    edited October 2019

    For Texans...are you loving this long awaited cold front or what!

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited October 2019

    Scarf - eeeks. Forty degree temperature change in Houston in 24 hours!!!

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  • Scrafgal
    Scrafgal Member Posts: 631
    edited October 2019

    It feels chilly but I need a relief from this heat!!

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