Cancer and Lynch Syndrome

Cancer Survivors, Previvors and Anxiety

Cancer survivors and previvors often feel anxious. We are more likely to question every ache and pain and wonder if it is cancer. I just had my one-year checkup, which, I am grateful to say, was all good. There are no signs of the cancer returning.

I didn’t think I felt that anxious before the checkup. But I kept waking up at night and found it hard to focus. Hence the gap in new posts. After the appointment and the good news, I have been sleeping so well. So, obviously, there was anxiousness even if I wasn’t consciously admitting it.

Survivors and previvors alike, need to learn to live with and manage the anxiety that comes with being predisposed to cancer.

Who Are Cancer Previvors?

cancer, dna, micro, technology
Mutated genes can increase cancer risk

I had never heard the term previvor and had no idea that I was one before my own diagnosis. The term previvor refers to a person who has a predisposition to cancer. They might have an increased risk because of a genetic mutation or a family history of cancers.

Genetic mutations that put the carriers at risk include Lynch Syndrome which is what I, my sister and mum have. This puts us more at risk of several cancers with the top two being womb and colorectal cancers. Alterations in BRCA1 and BRCA2 genes increase the risk of breast cancer in women and male breast cancer and prostate cancer in men.

If you have a history of cancer in your family and want to find out more about cancer genetics, you can read more on the NHS website. Interestingly, this page does not mention Lynch Syndrome even though researchers estimate 1 in 300 people have the gene, most just don’t know it. Clearly, there is much need for raising awareness of Lynch Syndrome.

Options For Previvors

Knowing that you have a genetic fault that puts you in a higher risk group is scary. There are different options available to previvors, which can help reduce their anxiety. Some are more invasive and life-changing than others.

The least invasive is regular monitoring. For example, in the UK people with Lynch Syndrome get colonoscopies every 18 months. Although, to say it is not invasive, is not entirely true since it involves putting a camera up your anus and round your colon. It is bloody uncomfortable if not painful, especially if you have bendy bowels like me.

Women at a higher risk of developing breast cancer get annual mammograms or MRI scans to detect any changes.

More Invasive Options

Lynch Syndrome carriers get regular colonoscopies

There are also more invasive options available. Women with Lynch Syndrome can opt to have their womb and ovaries removed. Even if you don’t want any or more children, this is a tough decision to make.

Even if you have decided to have no more children, deep down you might like to keep that option open. Removing the womb takes away that possibility. Removing the ovaries kick starts the menopause. I can tell you hot flushes suck. Especially the night ones which wake you up drenched in sweat in the middle of the night. But on the positive side, life without periods is great!

I never had a choice whether to take out my womb or ovaries. Getting cancer made that decision for me. If I’d had the choice? I never wanted children anyway (which increases your chances of developing womb cancer, but more of that in another post), so I think I would have opted for a hysterectomy and the removal of ovaries. But had I actually faced that choice, who knows.

Women with faulty BRCA genes can opt to have a preventative mastectomy. Angelina Jolie famously opted for a double mastectomy. I think that the decision to have preventative breast surgery is no easier than having your womb or ovaries taken out. I don’t know about you, but even though they get droopier each year, my boobs are part of who I am.

Managing Your Anxiety

Whether you are a survivor or a previvor, it is important to control the anxiety and not let it rule your life. I went through a period where I questioned every change or symptom. Especially when I developed aches in my joints. I was convinced that the cancer had somehow spread to my bones. Especially when I Googled signs of bone cancer. Never a good idea to turn to Google!

One year checkup

What has helped me are my three monthly meetings with my oncologist. I have had four CT scans in the last year and each time I see her, I have a blood test to check for cancer markers. Talking to her about my symptoms and feelings helps to calm fears and doubts.

If you feel anxious or have symptoms talk to your oncologist or GP. Don’t keep them to yourself and let your worries grow.

Knowing that as a Lynch Syndrome carrier I get regular colonoscopies (as long as they can find a way to get the camera round the bends), helps, too. Getting regular screenings means any signs of cancer are detected early and, remember, early diagnosis saves lives.

Importance of Lifestyle in Managing Cancer Anxiety

I believe that our lifestyle has a direct impact on whether or not we develop cancer. Why I believe this? Because my mum who has Lynch has never developed cancer. Neither did her parents, one of whom must have had the gene. They both lived into their nineties. And when I compare their lifestyles to mine, theirs are definitely healthier.

When I look at habits that increase your risk of developing cancer, the pre-cancer me ticked pretty much every box. That’s why the post-cancer me lives a much healthier life. I will share the changes I have made in a future post.

Healthy body, healthy mind (and vice versa)

Knowing that I am doing everything I can to manage the risks, makes me feel more powerful. Whilst I don’t think you can cure cancer by drinking carrot juice or water mixed with molasses and baking soda (oh yes, I Googled them all); I believe a healthy diet is important. As are exercise, sleep and keeping to a healthy weight. The last one I’m still working on.

Taking control and managing the physical aspects of your life can really help to manage the mental aspects, too. As they say, a healthy mind in a healthy body.

Finally, having faith has really helped me to deal with the anxiety and worry, but more about that in another post.

Thank you for taking the time to visit our blog and reading the post. We hope to see you back again soon.

Until next time!

To help us raise money for The Royal Marsden Cancer Charity and to spread awareness of Lynch syndrome and womb cancer, you can:

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2 thoughts on “Cancer Survivors, Previvors and Anxiety

  1. I have Lynch Syndrome and I’m a previvor. There’s definitely not enough awareness of Lynch.

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