Dealing with Lynch Syndrome and Constant Screenings

Welcome, @stlsampsondev. Having Lynch sydrome can sometimes feel like you're a ticking time bomb. While the constant screenings can give you assurance that you and your care team are staying on top of things, I can understand how time consuming and mentally exhausting this must all be. @moo1 @barblacanne @graphicedge have also mentioned Lynch syndrome and may have some experience to share with you.

In the meantime, you might appreciate this video by Mayo Clinic gastroenterologist and medical oncologist, Dr. Frank Sinicrope, M.D., about Lynch syndrome:
– Understanding Lynch Syndrome https://connect.mayoclinic.org/blog/gastroenterology-and-gi-surgery/newsfeed-post/understanding-lynch-syndrome/

@stlsampsondev, you mentioned you're getting sick again. What kind of sick? What symptoms do you have?

I currently have iron deficiency and we are going to do an infusion next week to see if my numbers go back up. If they don't my doctor said we have to figure out why and might have to do more scopes although I just did my yearly scopes in June. I have this really bad pain in my upper arms, calfs in my legs and my hand/feet. It is getting harder to use my hands because of the pain. I am on all sorts of medications to try to help deal with it but pain is your body's signal that something is wrong. We are also doing a Pet-Ct scan because of a blood marker we found - not sure if any of this will help figure out the source of the pain which wakes me up every 3 hours at night. I have found ways to deal with it - ice, medicine, etc, but it is getting worse not better. I am not sure if it is related to Lynch or something else. Things like driving and holding on to things is getting worse - yes I can do OT but I am already doing PT for other reasons and I work full time so I hope we can find a cause for the pain. We did xrays of my hands/ankles/feet recently so maybe that will show something as well. For now I am not on the estrogen path - I didn't like the side effects. Some of them could be related to early menopause (surgically induced). I follow at Mayo in Rochester - where I am going to be doing all my Lynch screenings.

I’ll be interested to hear what you learn after your appointments next week. Please post an update.

So a quick update - we did a CT because insurance would not cover the Pet Ct until we found something that could be thymic hyperplasia or something else, but usually patients tend to get that in their 20s not 40s which I am. Has anyone heard of this? I did do a Pet-CT yesterday. Waiting for results never seems to get easier. We keep finding things that sit outside of Lynch but then again not as much is known about the PMS2 mutation exon 9 and 10 is one of the newer ones I think. This is not originally why we were going to do the Pet but that is the only way we got it approved so now I try to wait patiently (which is not my strong suit).

Waiting is never easy. So glad that you were able to get a PET scan after all for a clearer view of what is going on. Did you get the results yet? When will you be able to discuss the results with your doctor?

Does anyone else have Lynch syndrome? Recently found out after positive cancer of both uterine and ovarian cancers

@kaycieb, I moved your question to this existing discussion about Lynch syndrome:
- Dealing with Lynch Syndrome and Constant Screenings
https://connect.mayoclinic.org/discussion/dealing-with-lynch-syndrome-and-constant-screenings/
I did this so you can read previous posts and connect easily with other members who have Lynch syndrome like @stlsampsondev @timmc64 @nrocpop @bevers89 @annewoodmayo and others. You'll find more related discussions on Lynch by using the Search bar at the top of the page as well.

Since finding out that you have Lynch, what changes have been recommended regarding surveillance and cancer screening?

I sincerely hope that they figure out how to turn around whatever is making you feel so poorly. The way in which I want to encourage you is to point out what a blessing it is that they now can identify Lynch syndrome and do screenings so that you can avoid cancers instead of having to be treated for them. My husband has Lynch syndrome, and he was the first person to find that out. He has seen a lot of cancers in his family because it was not able to be identified in the past. Now, his relatives can get the necessary screenings to avoid cancer. I also want to encourage you that you absolutely can live a long life and feel well again. Even without knowing it was Lynch, my husband's mother has had to have treatment for uterine and colon cancers. Yet, she is going strong at 85 years old. You can do it. It is tough to have to get all of those screenings, but you can do it and live all the better for it. I feel pretty confident that they can identify the things that are bothering you now and get you back to where you feel well. Hang in there.