Lynch Syndrome 101: Research vs Reality

Before my sister was diagnosed with colon cancer, it seemed as if she was constantly coming down with colds  and sinus infections. She regularly visited her family doctor because she simply couldn’t shake Strep throat either.

I can’t help but wonder — were the illnesses an indication of the colon cancer? Of course, no one can say. But she hasn’t had Strep since the surgery. [I realize I am completely ignorant of the science behind all this.]

Every year, more often and and multiple times throughout the year, for the past 4-5 years (but even before that), I’ve had my own chronic sinus infections, and last year, I even had walking pneumonia. I don’t present (or test positive) for allergies. No asthma.

Now, I’m wondering. These colds — each time — are they a sign of a cancer unnoticed?

I keep telling myself. The statistics for MSH6 Lynch mutation indicate that we aren’t at as high a risk as other mutations. Only uterine cancer is higher for MSH6. [But my aunt had ovarian cancer at age 46.]

lynchsyndromecancer-risks

Dana-Farber Cancer Institute, Lynch Syndrome Cancer Risks, 2013, http://goo.gl/vxTIKU

My paternal great-grandparents.

My paternal grandparents.

Their siblings.

Their children.

My generation.

Of my grandmother’s 7 brothers and sister, 6 developed colon cancer.

Roughly 63% of tested relatives from my dad’s generation tested positive for Lynch. They all have had cancer.

From my generation, two have already had cancer — both under the age of 40. And 75% of the relatives in my generation who have been tested also tested positive for Lynch.

Running list of Lynch cancers (and others) my family members have developed:

  • Pancreatic
  • Ovarian
  • Endometrial
  • Skin
  • Colon
  • Prostate
  • Pancreas
  • Bladder
  • Breast
  • Thyroid

Some of the Lynch cancers are considered so rare, that — I am told by some doctors — I don’t even need to worry about them. The research, the numbers, say so.

But I am learning that statistics aren’t as accurate in representing reality as I had been taught.

According to the statistics, my sister shouldn’t have had colon cancer (yet). I shouldn’t be developing polyps in my right colon (yet). But that isn’t the reality we are living.

My anxiety level is running high tonight. I don’t know why. Dr. Jasmine wants me to use my CBT Thought Record at these times.

Here goes:

Where are you:

I’m at home. It is night I have another sinus infection.

Emotion:

I feel anxious, worried, a little depressed.

Negative automatic thought:

I have cancer. I just don’t test positive for it. Yet.

Evidence that supports the thought:

I seem to catch colds easily. I don’t fully recover. My sister had the same situation. She had colon cancer. I have colon cancer. The statistics aren’t accurate.

Evidence that does not support the thought:

My gastroenterologist did not find any other polyps. He removed the one he did. It wasn’t even precancerous. All blood tests and urinalysis tests have come back negative.

Alternative thought:

I feel tired because I have a cold, I’m coping with my anxiety and depression, and the semester just began. I have 3 young children and they bring home lots of germs. And I teach college students during the day at work.

This is normal. And my family doctor often reminds me that I can’t waste my life worrying — syndrome or no syndrome.

Emotion or feeling:

I’m not buying it.

I’m a dead woman walking.

 

 

 

 

 

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6 thoughts on “Lynch Syndrome 101: Research vs Reality

  1. I can see why you are anxious and can’t really comprehend how you’d be feeling. What a tragic family history. Your alternative thought IS the most logical. My mother-in-law is dying and has outlived her prognosis. The thought of having this hanging over her is awful and she’s trying to make the best of the time she has. I think she’s in denial to be honest. If it were me in her situation, I hope I’d be trying to cram in as much as I could and live before my time’s up. As I said though, it’s easy for me to say.

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    • I think this is why I feel all the more driven to write. I put it off and put it off, but now, I want to do and write as much as I can. I heartily agree with you! I just desperately want the alternative, logical thought to take root so that I can believe it. Thank you so much for sharing and respond. 🙂 Whether it is you or a loved one, cancer/the threat of cancer can feel absolutely awful.

      Liked by 1 person

  2. Hi Suzy,

    Thank you for sharing. Just writing about this, you are doing more to help others than you could ever realize.

    About five years ago, I was diagnosed with colon cancer and Lynch Syndrome. I agree the statistics can be quite daunting especially at times when one’s mood is down.

    Through my journey, I have found keeping the following in mind to be helpful:

    (1) Now that I am aware of the syndrome, I am eligible for frequent screenings to catch any new cancers quickly. This is key in fighting all cancers. The earlier you can start treatment, the better the survival rate. I know it is a little bit of a silver lining thing, but the regular population doesn’t have this opportunity.

    (2) Lynch Syndrome caused cancers by their very nature respond to treatments much more readily. I need to look up the reference, but if I recall correctly the overall five year survival rate for Lynch Syndrome related cancers is 97%.

    (3) While the statistics are high, having Lynch Syndrome, does not mean you are guaranteed to get cancer.

    I know that the above doesn’t make cancer or the threat of it any less scary; but, perhaps it gives you more hope.

    Thanks again for sharing your post,

    Ben

    Liked by 1 person

    • Thank you so much for reading my post and for reaching out, Ben. I am so sorry to learn that you were diagnosed with colon cancer and Lynch. I hope that your health has continued to improve since then.

      What you shared actually is a comfort – thank you. 🙂 It helps to be reminded that I can trust the prevention recommendations and the research. Some days it is easier than others.

      My knee jerk reaction was to busy myself in and bury myself with work until I just couldn’t do it anymore. I suppose some (or possibly all) of the writing on this blog is part of my process to face the reality I’ve been ignoring.

      I’m struggling with the range of emotions I’ve experienced, including the pity party I feel like I’m throwing for myself when I admit to myself how damn depressed I feel about all this.

      But it is nice to know that, maybe by sharing my struggle with this “new normal,” I might be help others.

      Thank you again for taking the time to respond.

      -Suzy

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      • Hi Suzy,

        All considering, I am very fortunate as the cancer was caught early enough. Surgery alone was enough to get me back to 100% health. If I may ask, how is your sister doing? I hope that she also has been on the road to a successful recovery.

        The mental battle is a tough one. It is so difficult to find that right balance between not ignoring your feelings and not letting them control your life. Five years later, I still have times of depression, sadness, anger, anxiety, and etc. Of course, we shouldn’t forget about feeling guilty about having those feelings which only adds to the doom and gloom. Cancer or predisposed to cancer, it doesn’t matter. Both are extremely difficult to deal with.

        It is a lot easier when I am able to just forgive myself and say it is okay to be feeling those things. I have learned to accept the feelings, but accept them for what they are…. just feelings. However, acknowledging them doesn’t mean I have to let them define me. What we do in spite of them is far more important.

        I will be the first to admit that I still struggle with all of this, but it does seem to have established a pathway for me to be happier and enjoy life more.

        Your writing appears to me to be part of your pathway. If it helps you find more joy in life, then that is another good reason to keep doing it.

        Hope this makes sense and that you find it helpful,

        Ben

        Liked by 1 person

        • I am so glad to hear that your recovery has been going well and that you remaining healthy (not to mention cancer-free) as well. 🙂

          My sister is doing quite well, actually. Thank you for asking. There was one number from some blood test that continued to increase, which could possibly indicate the cancer had spread. But the last test showed that she was remaining cancer free. Such relief (definitely something that is still worrisome some days).

          I completely relate to feeling the guilt — for being healthy, for potentially not being healthy. It is a struggle that I definitely stumble over some days. And then I see individuals who struggle with much greater challenges than I do. It puts things into perspective (at least for a bit). I am learning to cope and forgive, which is definitely a human condition.

          I hope all of us find the peace of mind, forgiveness, and balance we’re all striving to achieve.

          Definitely helpful to hear your thoughts on this, Ben – thank you!

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