More things they don’t tell you

By | Wed August 10, 2016

I’ve been thinking a lot about the things they don’t tell you, thanks to Caroline’s blog post. I think about where I am today and wonder.

One thing they tell you is that if you have a double mastectomy, you won’t need to screening every 6 months – so no more mammograms. What they don’t tell you is that they likely don’t do ANY screening. This can actually be very stressful, because of that inner voice that says What if they missed something? or What if it comes back?

For me this has been a challenge. I go days forgetting about it and just going about my day (yay). And then something happens, a muscle pulls, something hurts, and the questions pop up. But as far as my doctors are concerned I’m fine, in remission, nothing to worry about. If I have no symptoms of concern, then they are not concerned. I have to have faith that I’ll be OK so that I can move on, live for today, but also plan for the future. My oncologists likes to say, we are making this or that decision so that you will be healthy 30 years from now. We are not just thinking about the now. I suppose that this is true for any early stage (“curable” – although they don’t use that term anymore) breast cancer. The idea is that treatment sucks but you do it so that you have a good long life afterwards.

The point I wanted to make is that the downside to not have scans every 6 months is not having any scans, and the anxiety that not having scans can cause. The information to help you make your decision emphasized that not needing scans as a benefit, but it doesn’t really tell you that not having scans can have a down side from your mental health perspective. They don’t do a particularly good job of considering your mental health when they make up their decision tree tools. They look at your interactions with the medical system, and their goal is to reduce them (although they still make you wastes plenty of hours in the waiting room when you do come).

Last night I found out that a friend died. She was just 30 years old (maybe 30, I recall her 30th birthday). She was diagnosed a few months after me. When we met she was almost finished chemo (or just finished – not sure), and happy to be getting back to things. She moved on from cancer. She moved away from here, so I had not seen her in the last year. Her husband wrote a really nice letter listing all the wondering things she did in the last year from publishing articles (she was nearing the end of her PhD studies), to swimming a mile in open water, to getting married – something I know she really wanted. She was living. Then only three weeks ago she was diagnosed with metastatic (stage 4) breast cancer. She only lived three weeks after mets diagnosis. That is so very quick.

I think losing friends is what makes the first five years so difficult. Not only are you dealing with your own mortality, and all the physical and mental aftermath of treatments, you are also dealing with the death of friends. Friends who had the same disease you had. In your mind you struggle with thoughts of that could be me? am I next? But also a profound sadness for all those left behind. For the strong men or women in our lives that care for us. We are sad for them too.

But I’m not sad for having known them. When I think of my friend, I see the light that was in her. I see her smile. I see the energy he had and the good things she did with her short life. She lived. And although her death came quickly, it means that she didn’t have to live with the idea of dying too young for long. It all happened so fast. I’m still in shock.

Feature image CC0 from Pixabay.

3 thoughts on “More things they don’t tell you

  1. Stephanie Sugars

    Hi Becky,

    I agree that one of the hardest things about living in cancer land is the devastating loss to disease and death of our beloved community members.

    Dealing with survivor guilt, grief and anger are difficult tasks that all survivors face.

    Totally “get it” about wanting medical follow-up after life-threatening diagnosis. If something was missed once, why couldn’t it be missed again? And isn’t catching it earlier better than catching it later?

    I’m on hospice and not doing blood tests, scans or much beyond nurses’ exams is like entering the void after all those years of monitoring cancer, treatment response, options for new treatments, etc.

    I found myself laughing at myself yesterday when I realized that I wanted the nurse to take my blood pressure – not to be touched, but for something to be measured and my predicament assessed. :)

    We are modern creatures who think these measurements are the modern crystal ball.

    As I often say though, “my crystal ball is on the fritz.”

    warmly, Stephanie

    PS, since you too enjoy medical research and literature, you might appreciate reading the choosing wisely guidelines:
    http://www.choosingwisely.org/patient-resources/cancer-tests-and-treatments/

    4. Follow-up tumor-marker tests and advanced-imaging tests for people treated for breast cancer

    After being treated for breast cancer, people often ask how they will know if the disease has returned.

    For people who had early-stage cancer and who are now disease-free, research shows the best way to keep tabs on their condition is to undergo regular mammograms and clinical exams and to be aware of the physical symptoms that could signal a recurrence. If a patient does experience symptoms such as new breast lumps, pain, or shortness of breath, then advanced imaging tests such as CT, PET, or bone scans may be helpful to find other areas of the body to which the cancer may have spread.

    For patients with advanced breast cancer, doctors may monitor the disease through blood tests for tumor markers, also called serum markers or biomarkers, which are higher than normal in some people with cancer. (People without cancer can also have elevated tumor markers, so those tests are always used along with other types of testing.) The three tumor markers used in breast cancer care are cancer antigen 15-3, cancer antigen 27.29, and carcinoembryonic antigen (CEA).

    But, in patients who had early-stage breast cancer and remain free of symptoms, neither tumor marker nor advanced imaging tests have been shown to lengthen lives and, in fact, often lead to anxiety, wrong diagnoses, and overtreatment due to falsely positive results.

    The recommendation. ASCO recommends that tumor marker tests, as well as CT, PET, and bone scans, not be used to watch for a recurrence of breast cancer in people who had early-stage breast cancer and have no signs or symptoms that the disease has returned.

    What’s behind this recommendation? Thanks to mammograms, which can detect cancer in its earliest stages, and effective treatments, women diagnosed with breast cancer today often have a normal life expectancy and a low risk for recurrence. That means that if these women are subjected to advanced imaging and tumor marker tests, there’s a very good chance that an abnormal finding would be falsely positive. In addition, no evidence suggests that finding a recurrence of the breast cancer using these tests before it causes symptoms improves survival.

    Research also shows that most recurrences are detected through symptoms and not by screening. What women who’ve had breast cancer can do is talk to their doctors about appropriate follow up, typically yearly mammograms and a breast exam by an experienced clinician every six months. Some women may also benefit from magnetic resonance imaging (MRI) of the breast, including women with dense, less fatty breasts and those with a very high risk for recurrence due to carrying a genetic mutation such as the BRCA mutation or having a strong family history of the disease.

    Questions to ask. If you have been treated for breast cancer, make sure you understand your follow-up care. Ask your doctor:

    What tests will I need and how often? What are the goals of the tests? If you had early-stage cancer and are now disease-free and don’t have symptoms, you should question the need for imaging tests of other parts of the body.
    What signs and symptoms should I report right away? What should I report at my next follow-up visit?

    Reply
    1. Becky Post author

      Thanks Stephanie,
      I’m so honored that you are reading my blog! I do hope that you are finding ways to laugh and stay comfortable.
      I think the item for 4 you posted is exactly what I mean by missing something. The assumption is that women are having mammograms. If you don’t have breasts, so you don’t do mammograms. So, no screening at all. All the caveats about mammography being the best way to screen/catch don’t apply if you don’t have breasts (or have reconstructed breasts – I would be so worried that the mammogram would injure the blood flow to my flaps. Now, that should be seen a good thing. It is a sign that the doctors don’t think my cancer will return. And the reality is that survival outcomes don’t change – but that is because stage 4 is still stage 4. Do you live longer with an earlier stage 4 diagnosis? Is the quality of your life better if stage 4 is diagnoses earlier? I remember going through the thoughts of – I was happier when I didn’t have cancer, so I’d rather not know too soon, and live with a sense of being cancer free as long as I can. But also, at diagnosis I did not at all react the way I thought I would react. So that tells me, that if some day I’m told the cancer spread, I really have no clue how I will react and what I will think. All I can do is take things one day at a time, and for now, plan for a longer life, while trying to make the most of my now …
      Hugs,
      Becky

      Reply
  2. bethgainer

    Becky, this post really resonates with me. You are right: medical professionals don’t tell us lots of things. I never knew after my “last” treatment that I would be so psychologically damaged. There was no survivorship plan in place. And I’ve also had friends die from the disease and have wondered “will I be next?” This question, I feel, is sometimes selfish because I feel guilty worrying about myself when a friend dies. Then again, I feel really sad when a friend dies. Breast cancer, or any cancer for that matter, really does a number on our minds. Excellent post!

    Reply

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