Dealing with Lynch Syndrome and Constant Screenings

Posted by stlsampsondev @stlsampsondev, Nov 19, 2021

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.

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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?

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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.

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@stlsampsondev

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.

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

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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).

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@stlsampsondev

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).

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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?

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