Support groups and medical tests

By | Mon March 23, 2015

I’ve talked previously on the double-edge sword that can be a support group meeting. Support groups give you a space to share your thoughts and frustrations. They can be a place of information gathering, to help you better know what questions you should be asking your doctors. But support groups can also be difficult. They can be a place where you find yourself questioning your care. Whey didn’t my doctor order this test or that test? What is a ‘normal’ duration for follow ups? The meetings can leave you thinking that you are not getting the best care possible.

This is especially a challenge in an area and culture where we do a lot of tests. A lot of the tests that are done are completely unnecessary. Tests are done because the patient requests it, and the insurance company pays for it, so why not have it? This of course is one of the reasons for the high cost of healthcare. It is also one of the reasons why some cancers are over-treated.

I saw a specialist today (gynecologist). Because of all the discussion in various support groups, I was very worried about my risk for gyne cancers. I was worried about whether or not I was in menopause and how that might effect my health. Most of the breast cancer chemotherapy treatments cause a temporary menopause which is often called ‘chemopause’. It can last for months or years after chemotherapy. Then the hormone therapy that I’m on (tamoxifen) can also cause menopause in some people (but not everyone). There were concerns – many of which came from the various discussions at support groups, although others were from my history. I learned that my breast cancer does not increase my risk for gyn cancers (I have no genetic predisposition). I learned that I didn’t need to worry about a lot of things that had been concerning me. I learned that there was no point in measuring whether or not I’m actually in menopause, since it will not a change any treatment decisions (I kind of wish my oncologist mentioned that – as it was a big question I had lingering – I wondered why if everyone else was being tested, why I was not). And that is the key point of this post – support groups can in some ways encourage people to ask for various tests, but if the test doesn’t affect a treatment decision, then it is an unnecessary test. And with each test there are risks – unnecessary exposure to radiation, false positives, patient discomfort/inconvenience, additional cost, etc. Medical tests of any kind are not side-effect neutral – especially when you include mental health and financial health as potential side effects.

So I am very glad for my appointment today. I’m happy to learn that I’m not at greater risk than the general population my age for ovarian cancer, and the tamoxifen risk for uterine cancer is low but it is also a cancer that shows clear signs (unexpected bleeding). Treatment is not nearly as dramatic as for ovarian or breast cancer. I’m glad that the gyne doc did not find anything seriously wrong – just stuff that can be attributed to ‘normal’ women with pre-mature menopause and tamoxifen side effects – nothing serious – no signs of additional cancers … deep breath … feeling much better now.

 

One thought on “Support groups and medical tests

  1. Scott Johnson

    Like the idea of too many tests being over-doing. Outside some minor lung function and blood pressure monitoring are two major ones for my heart and for cancer. For my heart I have been “watched” by echo-cardiogram and contrast fluids. Since both my heart surgeries were done under crisis conditions there is a considerable amount scar tissue and mesh around my heart that makes the echo unreliable.

    Fortunately, the cancer exams necessitate CT scanning that actually does a better job of imaging my heart too. So one test now pleases two specialists, I lose less time traveling to the city and the system saves some money. Ultimately, the clearer image may put off the need for discovery surgery on my heart. My sternum has had enough and needs a rest.

    Not sure about support groups. They aren’t available North of Edmonton and clinic waiting room talk creates enough discomfort. In my case it turns out I never see my oncologist after intake day and though she “directs” my care (how I would know that–unsure) my contact is second and third hand interviews followed by messaging (that I know doesn’t work) and sadly I come to believe it’s safer to not live under the illusion of a care network that doesn’t exist.

    Glad your news was good.

    Reply

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