Now I have more energy than ever
Margot, 52 years old
“If I had known about bowel cancer prevention back then, things might not have got so bad.”
Life has changed a lot since I got bowel cancer. That was six years ago. At that time, when it was diagnosed, I was 45 years old. But I am no longer angry about having the fate of getting this disease. Today I feel stronger and have more energy than ever before. Finding out how finite life is was a real shock at first, but it is ultimately a very healing experience as well.
If I had known about bowel cancer prevention back then, things might not have got so bad. My grandma died of bowel cancer at age 64, my mother at age 52 and my aunt at age 37. It was crystal clear that bowel cancer runs in my family, but no one talked to us about the risk. And if I hadn’t had it myself, who knows what would have happened to my daughter or my sister. I just didn’t know anything at all about what kind of steps to take as far as prevention was concerned.
I woke up one morning and was about to set off to work as usual. But then I suddenly had massive bleeding. I was scared and drove straight to the doctor. Two days later I was still at the hospital and wondering if I would ever be going back home.
Bowel cancer runs in our family
Because so many people in my family have died of bowel cancer I thought I would just have a few weeks to live after it was diagnosed. It didn’t dawn on me that I could survive. I was extremely lucky to have such professional doctors in charge of my treatment.
Right before I got cancer I had been on vacation. I had a great time and was feeling fantastic. It never occurred to me that there was any chance I might get cancer. I didn’t notice anything at all – no pain, no weight loss and no problems with digestion. If the tumor had not started bleeding I probably would have first noticed it much later on.
When I was out of the hospital and back home, I felt I had to do something. I couldn’t just wait thinking that I had no influence and would just see if things improved or not. I went to the library and checked out every book on bowel cancer to learn and read about my condition. There I read about a clinic that can test whether your cancer is hereditary. I then also had this test done. They also put together my family tree and diagnosed HNPCC (hereditary nonpolyposis colorectal cancer).
After getting out of the hospital I stayed at a health resort. It was then that I realized I had to start doing more. I can’t just think that now the cancer has been cut out and everything has been taken care of. I wanted to make sure that the cancer never comes back. It was while I was at the health resort that I happened to meet my current doctor. That was the best thing that could have happened to me.
I now regularly have a colonoscopy once a year. The colonoscopy isn’t painful at all – it isn’t a big deal. There’s no reason to be scared of having it done.
My quality of life is one of my main priorities
I do a lot of sports and eat healthy. I make sure that I do things that I simply enjoy. I now have a membership at a really nice gym. When I work out for two hours and then go in the sauna and whirlpool I notice that it is simply good for both my body and my soul. I now go three times a week. My quality of life is one of my main priorities.
In the past five years I just had a cold last year and that’s it. My immune system is very stable. I think that I have stayed so healthy up to now by doing all of these things.
I am also trying to have things in my life that are good for me. Back when I had just left the hospital, I visited an animal shelter and adopted a dog. I had always wanted to have a dog, and having him is the best therapy I can imagine. When I’m not feeling that great, I take my dog and then go for a walk through the forest and over the fields. I also take along some music to listen to and then I start feeling better.
The genetic predisposition is the worst thing about the disease. I love my daughter more than anything and the thought that I could have passed defective genes to her weighs heavy on my mind. In five years my daughter also needs to start having a regular annual colonoscopy. I still don’t really know whether she has inherited this specific predisposition.
Back then I tried talking with my daughter about it because it could have a major impact on her life later on if she has inherited this genetic predisposition – be it finding in choosing a partner or deciding about having children. If I had known about it back then I would have decided not to have children. My daughter brings me a lot of joy and I love her more than anything, but if I had known then ... My daughter has told me that she doesn’t want to know if she has the gene, and I can understand that. But she would also know if she doesn’t have it. This way she always has to live with the uncertainty, and that can be difficult. My sister wanted to know right away.
We go to have the colonoscopy together
My sister and I drive together to our colonoscopy appointments. Like me, she has witnessed what has happened in our family, and also feels the need to have a colonoscopy every year. Bowel cancer is a type of cancer that is easier to treat provided it is detected early on.
Now I want to live my life in a way that is best for me. Not that I am indifferent to what my friends or family want, but just to live life more intensely and with greater awareness. I try not to live too much for the future, but in the present, for today. I don’t make any more long-term plans. That used to be different. I’m actually very happy with my life. I wish it would just stay like it is.
Our real-life stories summarize interviews with people who are affected by the medical condition. Our interview partners have given us permission to publish their stories. We would like to express our sincere thanks to them.
The real-life stories give an insight into how other people cope and live with a medical condition. Their opinions and comments are not recommendations by IQWiG.
Please note: The names of our interview partners have been changed to protect their identity. The photos are of models.