Hello. My name is Maryeileen.
I found out I have Lynch syndrome about 3 months ago. My father, his sister, and my grandfather all had colon cancer. My father is still living and cancer free for almost 10 years. Since his diagnosis I went for a colonoscopy at the age of 27; 2 polyps found but no cancer thankfully. Last year I had my first tumor cut out (lower back). Not benign but not cancerous. What ever that means! After getting the test results back for Lynch syndrome the doctors recommended I have a hysterectomy before I turn 40 (I am 34). I am going to get a second opinion but already decided that I am going to have the hysterectomy.
I am wondering
1. If anyone else has been told to have a hysterectomy and if so what did you decided to do? How did you feel afterwards? If you didn't do it...why not?
2. Since there is so little information about this are there are any specially good resources you found that you could direct me to with more information?
3. What should I expect? Is my little tumor just the beginning? What can I do to prevent this? diet?
I also just found another lump on my stomach. I have an appointment set up to see if it is another tumor.
I feel great. I am grateful that my insurance covers all of the tests and treatments. I have a terrific family that cares dearly for me. I just want to be better prepared.
Any advice would be appreciated.
Thank you in advance.
Maryeileen
I found out I have Lynch syndrome about 3 months ago. My father, his sister, and my grandfather all had colon cancer. My father is still living and cancer free for almost 10 years. Since his diagnosis I went for a colonoscopy at the age of 27; 2 polyps found but no cancer thankfully. Last year I had my first tumor cut out (lower back). Not benign but not cancerous. What ever that means! After getting the test results back for Lynch syndrome the doctors recommended I have a hysterectomy before I turn 40 (I am 34). I am going to get a second opinion but already decided that I am going to have the hysterectomy.
I am wondering
1. If anyone else has been told to have a hysterectomy and if so what did you decided to do? How did you feel afterwards? If you didn't do it...why not?
2. Since there is so little information about this are there are any specially good resources you found that you could direct me to with more information?
3. What should I expect? Is my little tumor just the beginning? What can I do to prevent this? diet?
I also just found another lump on my stomach. I have an appointment set up to see if it is another tumor.
I feel great. I am grateful that my insurance covers all of the tests and treatments. I have a terrific family that cares dearly for me. I just want to be better prepared.
Any advice would be appreciated.
Thank you in advance.
Maryeileen
I have familial genealogy (Amsterdam criteria) .....Please feel free to email me. Not a dr, nor do I play one on TV but I am a research junky.
I am struggling with the decision of having another baby. My daughter is 2 and my husband would like another child. He said the decision is up to me and he will be happy with one or two. I am not struggling becuase of the syndrome. I am just so tired as it is. :) I am also tired of being poked at and since I had a c-section with the first and it was a difficult recovery. Between the c-section, colon screenings, tumour remomal et al I am just sick of it. But I realize that after reading the discussion board I am having a pitty part for my self and should be grateful I have not had as much to deal with in comparison...yet. That is the scary part...the yet.
My current doctors are at the Univ of Penn and I am going to Fox Chase for my second opinion. I am going to do some more poking around. I'll let you know if they tell me anything different.
Best of luck to you both. I'll keep you posted. It is nice to have someone to talk to about this. The people I told either think this is not a big deal or act like I am going to die. Thank you.
Just look under Women's Risk, and it has some stories about Dr. Lu.
I've told my story before but here's a short version. I have Lynch Syndrome (Muir-Torre) with the MSH-2 mutation. I come from a very small family, so there isn't a long history of cancer. My grandfather had colon cancer in his early 50's and lived until his late 90's even though he was a smoker! His daughter, my mom, died at age 40 of something totally unrelated. The only other family member who had cancers is my aunt who is in her mid-60's and has had breast cancer and colon cancer twice. She's still alive and still working as a teacher. I was diagnosed with ovarian and uterine cancer at the same time when I was 42. No one suspected Lynch Syndrome at the time, and because the doctors really didn't listen to my symptoms (two years of doctor's visits) the ovarian cancer was Stage 3, which is usually deadly. I surprised them by surviving, and twelve years later (last year) I was diagnosed with Stage 1 colon cancer. I've also had skin tumors associated with Muir-Torre.
I honestly don't know what I would do in your situation. Though I've had uterine and ovarian cancer, I know they're pretty rare, and uterine cancer is very curable if caught early. I'm also convinced my ovarian cancer could have been caught early if the doctors hand't been asleep at the wheel. (BTW, my first doctors were not at HUP but at Jefferson, just so you don't worry.) I think what I would do - honestly - is contact Dr. Lu's group. Or call the number in the link above and see if you can talk to someone.