Dealing with Lynch Syndrome and Constant Screenings
I am new to Mayo Connect and just trying to figure out my way around. I have Lynch Syndrome – which we found out two years ago after we took out my uterus due to premalignant cells. So far we have been one step ahead of full on cancer but it is still a lot to deal with, especially as we are finding other things along the way and having to make tough medical decisions. Dealing with early menopause (took out ovaries as preventative) and ongoing screenings is a lot and curveballs keep coming my way. I have IDA now and we are going to do an iron infusion – if my iron doesn't come back up they want to do more scopes to see where I am bleeding from but I just had two scopes in June. We found two flat polyps in the stomach – so far I have had four polyps in my stomach – none had cancer yet. I have to do an endoscopy and colonoscopy every year on top of other screenings but it seems like we have had to do them more frequently. On top of that I am doing a pet-ct soon since we found a weird marker in my blood. Also I have other cancers we have to screen for that sit outside of Lynch – like ocular melanoma. I just had another surgery to repair an anal fissure and to biopsy that.
My life seems to be a lot of screenings and surgeries/trying not to worry about if it is cancer. I do walk an hour on the treadmill a day and do yoga. I am not cleared to run yet which is hard because I love running. How do other people with Lynch Syndrome deal with constant screenings and not feeling well? *Currently I am getting really sick again so that makes it even harder to know how to cope.