Feel like an astronaut with no tether after treatment

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Liloefer
Liloefer Member Posts: 13
edited September 2016 in Not Diagnosed With a Recurrence or Metastases but Concerned

I finished chemo in May 2016 and Proton radiation in July. I am currently taking tamoxifen for the next five years so technically I am still being treated. I went through the Mayo here in Minnesota, which is like the best treatment you can get, the doctors are top notch, the equipment is too. I trust they know what they are doing, obviously BUT I was told I will get no yearly exams, no scans, no blood tests, nothing. Only if I develop symptoms will I need to see them because they found the stress of going into an annual scan was worse for the quality of life than not until needing to worry. That makes me worried in and of itself. The being doted on and watched during treatment was "comforting" and now that I'm done--its see ya when ya need ta! Everyone I know who has had cancer gets at least blood work for tumor markers, which is not a term my docs ever used. I am afraid that any symptom that presents itself that I finally don't dismiss as my normal beaten up body will have gotten to the point I'm done for. Has anyone else had that kind of finish and it work out well?

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  • KathyL624
    KathyL624 Member Posts: 217
    edited September 2016

    I am at Sloane Kettering and they told me the same--no tumor markers or scans unless I have a symptom. They do bloodwork though: a complete blood count, Vitamin D check and a metabolic panel at my oncology visits. It seems like the no-scan or tumor markers is standard for the big institutions, at least.

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  • KBeee
    KBeee Member Posts: 5,109
    edited September 2016

    Liloefer, I know Mayo does no blood work (even CBC) which surprises me. I was seen there for a while, but when I had my recurrence, I transferred locally for convenience. I understand the rationale for no tumor markers, but when I had my recurrence, they did not even do a CBC. I was pretty floored by that. I did however, get really good advice and information from the surgeons and the radiation oncologist up there. I really like the system overall, and would recommend it, but I was surprised at such a minimalist approach at follow-up. I do not like the excuse of "it causes more anxiety". Why don't they let us decide the level of anxiety we're comfortable with? This isn't just them, it is the NCI recommendations. It's frustrating though. You should still be getting check-ups though, and getting breast exams. I know they don't do imaging, but they still should do a clinical breast exam. Someone should also be monitoring you for side effects from Tamoxifen.

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