Bilateral mastectomy. No meds. Annual MO appointments?

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Texas357
Texas357 Member Posts: 1,552
edited March 2019 in Stage III Breast Cancer

I'm 10 years out from Stage three breast cancer and had a double mastectomy. My MO stopped my Femara two years ago so at this point, I'm not taking any medications (for breast cancer or anything else). My MO orders annual chest x-ray and blood work including tumor markers. However, I have learned that neither test is actually part of the standard survivorship protocol. She does a 5-second exam of my implants.

While on one hand it feels reassuring to get the all-clear every year, on the other hand going to the hospital for the x-ray and then to another location for blood work is a PIA. If I decline getting the tests, I know my MO will fire me as her patient. She's very emphatic about my having them.

What are others who are 10-15 years out doing as far as annual exams?




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  • IAmElaine
    IAmElaine Member Posts: 87
    edited March 2019

    Hi, Texas357. I also had ILC with a large tumor and lots of positive nodes. I hit my 15 year mark last Friday. I am still taking letrozole since ILC is highly ER sensitive. I began seeing my onc annually at year six or seven (my choice). He wanted me to come in every 6 months until year 10 but let me make that decision. I never get scans of any kind except for the DEXA scan to monitor my bone density. He will order them if I choose to, but I simply do not want them. He does a full chem panel and of course a CBC. He will do tumor markers if I want him to but he tells me they are very unreliable post treatment and he only uses them on stage 4 patients in order to monitor treatment response. I don't get those either.

    This is just the way I choose to proceed. Waiting for test results is absolutely tortuous for me. I have no regrets in keeping my follow ups simple.

    Hope this helps.

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  • sugarplum
    sugarplum Member Posts: 318
    edited March 2019

    I'll be 13 years out in April. The last time I saw my onc, he finally put me on annual checkups instead of bi-annual. I'm still taking Arimidex and therefore getting annual DEXA scans (I was osteopenic even before my diagnosis). My exams used to involve a blood test and a physical check of my lymph nodes & implants, but I notice lately they haven't even been doing that (my original onc is long gone so I've had a succession of them ever since).

    I've never had tumor markers done - just a couple of nuclear bone scans over the years for various aches & pains. However, I'm now watched very closely by my cardiologist (I had to have a defibrillator implanted last year due to heart damage from chemo).

    I guess we're lucky that we've been around long enough to even be addressing this!

    Best - Julie

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  • Texas357
    Texas357 Member Posts: 1,552
    edited March 2019

    Julie, so sorry to hear about the heart damage. So far, my only long-term side effects are more annoying than life-threatening. I still have no feeling in my fingertips, my fingernail beds are so damaged that some of my nails still peel off, and my tear ducts are permanently scarred closed. I could have had surgery for the latter but the idea of one more surgery, and a lifetime of caring for glass tubes implanted in my eyes, was too overwhelming. The Femara did knock me from osteopenia into osteoporosis, which is why I had to stop that after 8 years. I did a couple shots of Prolia and I'm back to being osteopenic. No medications.

    My current MO does a physical exam so brief that it's over in about 60 seconds.




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  • karen1956
    karen1956 Member Posts: 6,503
    edited March 2019

    Texas - I'm 13 years out and my MO stills sees me every 6 months - I see him later this week for 6 month visit. He does labs (CBC, CMP and tumor markers) when I arrive for visit as well as update history and physical exam. I quit AIs in in 2010 due to side effects. Now MO would like me to go on Zometa (brought up in September). I'm not ready to sign on for that (2 years of infusions every 6 months). I want to wait till my next DEXA scan in the fall. I have a few new medical issues that I want to bring up with him, but not sure that they are related to BC Tx - I have mixed feelings about going to annual visits - but so far MO has not brought that up yet - he saw me every 3 months till year 5 and since then its twice year.

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  • Texas357
    Texas357 Member Posts: 1,552
    edited March 2019

    Thanks, Karen.

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