When I received the diagnosis (from genetic testing after cancer diagnosis) it came with recommendations for various screenings. Did you receive something similar?
And, I also received a letter to send to my kids and siblings because they were at risk for also being in our boat. Did you get such a letter?
My relatively new primary care doctor ordered all the screenings recommended, and I've been doing those the last year.
Do you have a primary care doctor you can follow up with?
I was notified to get tested because my aunt lost her battle with cancer at age 38, and all her kids are positive. Long and short is we have moved provinces and I do not have anyone overseeing my care or ordering the screenings.
My husband has this. If his experiences can be of any help, just ask. I think the main thing is to get a doctor that is familiar with it and get any suggested screenings
When I received the diagnosis (from genetic testing after cancer diagnosis) it came with recommendations for various screenings. Did you receive something similar?
And, I also received a letter to send to my kids and siblings because they were at risk for also being in our boat. Did you get such a letter?
My relatively new primary care doctor ordered all the screenings recommended, and I've been doing those the last year.
Do you have a primary care doctor you can follow up with?
@annewoodmayo I also have PMS2 and I follow with Dr. Boardman at Mayo in MN. She is really good and has a lot of patients with Lynch Syndrome. I also have auto immune diseases (Rheumatoid Arthritis and EOS Asthma). I unfortunately didn't find out about my Lynch until after we took out my uterus due to pre-malignant cells - that is the only reason we did genetic testing.
I would not rush into a radical hysterectomy without getting another opinion especially if you have no symptoms. I had symptoms - like a lot of pain and abnormal bleeding so I had signs something was wrong. If you still want kids I would wait - if you are done with having kids then it depends on what is best for you. I am not sure how old you are but I was 40 and it forced me into early menopause which was also tough for me so I wouldn't just rush into it.
My autoimmune disease complicates things too because I have to be careful about taking immunosuppressants. My doctors just recently approved me to start on one but they watch everything closely. It can be a lot
I would see if you can get an appointment with Dr. Boardman. Also there is a doctor in FL who is also up to date on it depending which location is better for you. Hope that helps. If you don't mind me asking what auto immune disease do you have?
Hi, Heather!
Thanks for your reply!
I have a PT appointment this morning so I need to watch my time. Sorry if my reply sounds abrupt!
I am 62 yrs old and post menopause, so fertility and sudden menopause are not issues for me. It must have been difficult for you...
I have had multiple diagnoses for the autoimmune crap: Lupus, not Lupus, spondyloarthropathy, sero-negative RA. I think the final one is "undifferentiated spondyloarthorpathy consistent with ankylosing spondylitis." I think this means that spinal bones grow in places they shouldn't and that causes pain. Also, pain in other joints. Bone growth in other places. Inflamation of cartiledge (chest, ribs, nose). Dry eyes, mouth. Gastro-intestinal issues like GERD and IBD. Skin is super dry and very sensitive to metals and fragrances and lanolin and adhesives. Frankly, my symptoms don't fit neatly into any one specific disease.
I have been on the immunosuppressant medication since about 2015. The only worrisome infection I got was one eye infected with uveitis. Used drops and it has not recurred. I do have chronic athletes foot! Ha! Stupid but a real, daily annoyance. Also, I've had significant dental infections, but I am bad about brushing and flossing.
The immuno drugs are scarey. I resisted taking them for about 3 years. I think it's good to ask yourself / remind yourself of the risk-benefit of the meds. When I decided to start taking them, I had reached the point of having lots of problems with normal life. I had clearly reached the point where the benefits outweighted the risk. In other words, I was willing to take the risk in order to get the potential benefits.
One of the real benefits of the immuno meds is the likelihood that they can stop the disease from getting worse. When I got Covid in Oct of 2020, I had a long interruption of my immuno meds, and, Boy! I did get worse! It's 27 months later and I'm still not back to where I was before Covid.
Regarding the infection with Covid-- I was a teacher and my school was live AND virtual at the same time (very difficult for teaching). I'm pretty sure I got Covid from one of my students. Her sister was absent at the time, and she was absent the week after my positive test. The school didn't tell us teachers officially who was absent with Covid, but the students did tell us!
I probably was more susceptible because of my meds but I needed to keep my health insurance so I had to work. Risk-benefit, again, but I lost haha!
The immunosuppressant meds have helped with low energy-- which is better but still my 2nd worst symptom-- AND with guts, eyes and skin. I can tell when I'm due up for another shot/infusion.
I take a daily pill (azathioprine, invented for organ transplant patients) and now evyer 8 weeks a shot of Tremfya. For me, all of the risks of the meds are worth the benefit. But Covid has really added a nasty social-isolation element.
I have tried to get all of my central docs (rheumatologist, gastro and skin and eye) all in the same medical association. They don't really talk to each other, but they know each other and have easy access to my records. The gastro, skin and eye doctors all seem at least a little scared of my rheumatologist. I consider that a good thing. They don't want to mess up with one of her patients.
You are lucky to be at Mayo. I live in Pennsylvania, near Philly. You would think that getting access to good care would be easy near so many academic institutions, but that has not been my experience. You have planted the idea of my getting a virtual appointment at Mayo...
Sorry this got so long and rambling and probably lost of misspellings! I have to get ready for PT right now.
I'd be happy to tell you more about my experience with the many, many meds I have taken.
Could you tell me more about the doctor at Mayo? Specifically, how deeply did she go into the PMS2 vs. the other Lynch genes? Did she discuss the exons? I've got 11,12 duplication. Did she discuss the most current research? Based on my research, the PMS2 carries very little risk for gyn cancers, which is my current issue. I'm back to risk-benefit analysis for the hysterectomy.
@bevers89 I would call Mayo and see if they can give you an estimate before you go - I know for some of the procedures like even CTs and MRIs I need pre-approval from my insurance. You also should call your insurance and ask them about it. They have to cover procedures if you have Lynch. It can be a headache I know. Did you call your insurance company and ask them about it? *Sorry it took me so long to respond. I had been sick for awhile.
I was diagnosed with Lynch last June (2022). I'm sorry to piggy back on this thread, but I didn't know how to start a new one that would be really effective at eliciting responses.
Are there any docs are Mayo who are researching- or at least really up-to-date on- the connection between Lynch PMS2 and GYN cancers?
I've got the PMS2 (exons 11, 12 dup). I read the link to the Mayo gastroenterologist. In it, he said that most gastr Lynch cancers would start before age 60-65.
My gastro screenings are all done and looking good.
Right now, I'm dealing with GYN screening. I feel like I'm kinda being bullied by doctors into having a radical hysterectomy when I am asymptomatic.
I have an autoimmune disease, too, that will complicate recovery from surgery. I don't want another abdominal surgery ( had my gall bladder out) without a solid reason for it.
Thanks for any help you can provide. Sorry that I'm not being strongly supportive of the previous poster/s.
@annewoodmayo I also have PMS2 and I follow with Dr. Boardman at Mayo in MN. She is really good and has a lot of patients with Lynch Syndrome. I also have auto immune diseases (Rheumatoid Arthritis and EOS Asthma). I unfortunately didn't find out about my Lynch until after we took out my uterus due to pre-malignant cells - that is the only reason we did genetic testing.
I would not rush into a radical hysterectomy without getting another opinion especially if you have no symptoms. I had symptoms - like a lot of pain and abnormal bleeding so I had signs something was wrong. If you still want kids I would wait - if you are done with having kids then it depends on what is best for you. I am not sure how old you are but I was 40 and it forced me into early menopause which was also tough for me so I wouldn't just rush into it.
My autoimmune disease complicates things too because I have to be careful about taking immunosuppressants. My doctors just recently approved me to start on one but they watch everything closely. It can be a lot
I would see if you can get an appointment with Dr. Boardman. Also there is a doctor in FL who is also up to date on it depending which location is better for you. Hope that helps. If you don't mind me asking what auto immune disease do you have?
Bevers, I recommend talking to your team at Mayo. You may have options regarding having more kids and preventative measures for cancer. You're certainly not alone. Besides connecting with others here, you can talk with a genetic counselor at Mayo Clinic.
I was diagnosed with Lynch last June (2022). I'm sorry to piggy back on this thread, but I didn't know how to start a new one that would be really effective at eliciting responses.
Are there any docs are Mayo who are researching- or at least really up-to-date on- the connection between Lynch PMS2 and GYN cancers?
I've got the PMS2 (exons 11, 12 dup). I read the link to the Mayo gastroenterologist. In it, he said that most gastr Lynch cancers would start before age 60-65.
My gastro screenings are all done and looking good.
Right now, I'm dealing with GYN screening. I feel like I'm kinda being bullied by doctors into having a radical hysterectomy when I am asymptomatic.
I have an autoimmune disease, too, that will complicate recovery from surgery. I don't want another abdominal surgery ( had my gall bladder out) without a solid reason for it.
Thanks for any help you can provide. Sorry that I'm not being strongly supportive of the previous poster/s.
I do follow at mayo. What kind of paperwork did your doctor submit to insurance? It does toy with the emotions! I am 32 yrs old and toying with the idea of having a hysterectomy just because my aunt had stage 4 Ovarian Cancer at age 38. It puts a lot of stress on the emotions to even think of having a hysterectomy and not being able to have anymore kids!
Bevers, I recommend talking to your team at Mayo. You may have options regarding having more kids and preventative measures for cancer. You're certainly not alone. Besides connecting with others here, you can talk with a genetic counselor at Mayo Clinic.
I have Lynch Syndrome which is a lot of screenings that insurance does cover. You might consider having your doctor submit paperwork to your insurance before your screenings and verify they will cover it. Do you follow at mayo? My doctors at mayo are very familiar with Lynch.
I am was thrown into early menopause because of Lynch which was rough. I had my uterus and ovaries out. They found premalignant cells in my uterus. It is hard because not everyone understands the emotional impact of Lynch unless they have it.
I do follow at mayo. What kind of paperwork did your doctor submit to insurance? It does toy with the emotions! I am 32 yrs old and toying with the idea of having a hysterectomy just because my aunt had stage 4 Ovarian Cancer at age 38. It puts a lot of stress on the emotions to even think of having a hysterectomy and not being able to have anymore kids!
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I was notified to get tested because my aunt lost her battle with cancer at age 38, and all her kids are positive. Long and short is we have moved provinces and I do not have anyone overseeing my care or ordering the screenings.
My husband has this. If his experiences can be of any help, just ask. I think the main thing is to get a doctor that is familiar with it and get any suggested screenings
I'm in that boat too.
When I received the diagnosis (from genetic testing after cancer diagnosis) it came with recommendations for various screenings. Did you receive something similar?
And, I also received a letter to send to my kids and siblings because they were at risk for also being in our boat. Did you get such a letter?
My relatively new primary care doctor ordered all the screenings recommended, and I've been doing those the last year.
Do you have a primary care doctor you can follow up with?
I have the Lynch diagnosis but no family doctor. I am looking to see if there is a way to get the various preventative screenings done?
Hi, Heather!
Thanks for your reply!
I have a PT appointment this morning so I need to watch my time. Sorry if my reply sounds abrupt!
I am 62 yrs old and post menopause, so fertility and sudden menopause are not issues for me. It must have been difficult for you...
I have had multiple diagnoses for the autoimmune crap: Lupus, not Lupus, spondyloarthropathy, sero-negative RA. I think the final one is "undifferentiated spondyloarthorpathy consistent with ankylosing spondylitis." I think this means that spinal bones grow in places they shouldn't and that causes pain. Also, pain in other joints. Bone growth in other places. Inflamation of cartiledge (chest, ribs, nose). Dry eyes, mouth. Gastro-intestinal issues like GERD and IBD. Skin is super dry and very sensitive to metals and fragrances and lanolin and adhesives. Frankly, my symptoms don't fit neatly into any one specific disease.
I have been on the immunosuppressant medication since about 2015. The only worrisome infection I got was one eye infected with uveitis. Used drops and it has not recurred. I do have chronic athletes foot! Ha! Stupid but a real, daily annoyance. Also, I've had significant dental infections, but I am bad about brushing and flossing.
The immuno drugs are scarey. I resisted taking them for about 3 years. I think it's good to ask yourself / remind yourself of the risk-benefit of the meds. When I decided to start taking them, I had reached the point of having lots of problems with normal life. I had clearly reached the point where the benefits outweighted the risk. In other words, I was willing to take the risk in order to get the potential benefits.
One of the real benefits of the immuno meds is the likelihood that they can stop the disease from getting worse. When I got Covid in Oct of 2020, I had a long interruption of my immuno meds, and, Boy! I did get worse! It's 27 months later and I'm still not back to where I was before Covid.
Regarding the infection with Covid-- I was a teacher and my school was live AND virtual at the same time (very difficult for teaching). I'm pretty sure I got Covid from one of my students. Her sister was absent at the time, and she was absent the week after my positive test. The school didn't tell us teachers officially who was absent with Covid, but the students did tell us!
I probably was more susceptible because of my meds but I needed to keep my health insurance so I had to work. Risk-benefit, again, but I lost haha!
The immunosuppressant meds have helped with low energy-- which is better but still my 2nd worst symptom-- AND with guts, eyes and skin. I can tell when I'm due up for another shot/infusion.
I take a daily pill (azathioprine, invented for organ transplant patients) and now evyer 8 weeks a shot of Tremfya. For me, all of the risks of the meds are worth the benefit. But Covid has really added a nasty social-isolation element.
I have tried to get all of my central docs (rheumatologist, gastro and skin and eye) all in the same medical association. They don't really talk to each other, but they know each other and have easy access to my records. The gastro, skin and eye doctors all seem at least a little scared of my rheumatologist. I consider that a good thing. They don't want to mess up with one of her patients.
You are lucky to be at Mayo. I live in Pennsylvania, near Philly. You would think that getting access to good care would be easy near so many academic institutions, but that has not been my experience. You have planted the idea of my getting a virtual appointment at Mayo...
Sorry this got so long and rambling and probably lost of misspellings! I have to get ready for PT right now.
I'd be happy to tell you more about my experience with the many, many meds I have taken.
Could you tell me more about the doctor at Mayo? Specifically, how deeply did she go into the PMS2 vs. the other Lynch genes? Did she discuss the exons? I've got 11,12 duplication. Did she discuss the most current research? Based on my research, the PMS2 carries very little risk for gyn cancers, which is my current issue. I'm back to risk-benefit analysis for the hysterectomy.
Thanks so much! Sorry this is so long...
@bevers89 I would call Mayo and see if they can give you an estimate before you go - I know for some of the procedures like even CTs and MRIs I need pre-approval from my insurance. You also should call your insurance and ask them about it. They have to cover procedures if you have Lynch. It can be a headache I know. Did you call your insurance company and ask them about it? *Sorry it took me so long to respond. I had been sick for awhile.
@annewoodmayo I also have PMS2 and I follow with Dr. Boardman at Mayo in MN. She is really good and has a lot of patients with Lynch Syndrome. I also have auto immune diseases (Rheumatoid Arthritis and EOS Asthma). I unfortunately didn't find out about my Lynch until after we took out my uterus due to pre-malignant cells - that is the only reason we did genetic testing.
I would not rush into a radical hysterectomy without getting another opinion especially if you have no symptoms. I had symptoms - like a lot of pain and abnormal bleeding so I had signs something was wrong. If you still want kids I would wait - if you are done with having kids then it depends on what is best for you. I am not sure how old you are but I was 40 and it forced me into early menopause which was also tough for me so I wouldn't just rush into it.
My autoimmune disease complicates things too because I have to be careful about taking immunosuppressants. My doctors just recently approved me to start on one but they watch everything closely. It can be a lot
I would see if you can get an appointment with Dr. Boardman. Also there is a doctor in FL who is also up to date on it depending which location is better for you. Hope that helps. If you don't mind me asking what auto immune disease do you have?
Thanks,
Heather
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1 ReactionHi, everyone.
I was diagnosed with Lynch last June (2022). I'm sorry to piggy back on this thread, but I didn't know how to start a new one that would be really effective at eliciting responses.
Are there any docs are Mayo who are researching- or at least really up-to-date on- the connection between Lynch PMS2 and GYN cancers?
I've got the PMS2 (exons 11, 12 dup). I read the link to the Mayo gastroenterologist. In it, he said that most gastr Lynch cancers would start before age 60-65.
My gastro screenings are all done and looking good.
Right now, I'm dealing with GYN screening. I feel like I'm kinda being bullied by doctors into having a radical hysterectomy when I am asymptomatic.
I have an autoimmune disease, too, that will complicate recovery from surgery. I don't want another abdominal surgery ( had my gall bladder out) without a solid reason for it.
Thanks for any help you can provide. Sorry that I'm not being strongly supportive of the previous poster/s.
@bevers89, I hope @stlsampsondev will return to share how they were able to work with their doctors at Mayo to submit forms to get insurance to cover screenings. You may wish to speak to Insurance & Billing at Mayo Clinic to inquire further https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/insurance/accepted-insurance
I bet Sophie @doslovesdogs21 understands your stress and emotions about weighing your options regarding inheritable cancer, fertility and choices. See the discussion they started here:
- Feeling a Fertility Timeline Crunch https://connect.mayoclinic.org/discussion/feeling-a-fertility-timeline-crunch/
Bevers, I recommend talking to your team at Mayo. You may have options regarding having more kids and preventative measures for cancer. You're certainly not alone. Besides connecting with others here, you can talk with a genetic counselor at Mayo Clinic.
-
Like -
Helpful -
Hug
1 ReactionI do follow at mayo. What kind of paperwork did your doctor submit to insurance? It does toy with the emotions! I am 32 yrs old and toying with the idea of having a hysterectomy just because my aunt had stage 4 Ovarian Cancer at age 38. It puts a lot of stress on the emotions to even think of having a hysterectomy and not being able to have anymore kids!
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Like -
Helpful -
Hug
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