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Ali47 05/14/2011

I was diagnosed with Lynch Syndrome MSH2, Muir Torre variant this past February. I remembered the doctor at the genetic study stressing the Muir Torre and the need to see a dermatologist. Not knowing any determatologists, I went to one my best friend goes to and felt confident about. When I made the appointment and explained why I neede to be seen, the office seemed to know what I was refering to. While seeing the doctor, she identified that she had not heard of Lynch Syndrome, but she was familiar with Muir Torre. She took a glance over me, told me not to worry that I may never have any problems and she would see me in about a year she guessed.

After leaving her office, I did not feel comfortable. I did not feel that I got to ask any questions, and that she did not really check me well. I struggled with this, and then within a week after seeing her I noticed a lesion forming near my arm. I was not sure of the lesion, and struggled with returning to this doctor, or asking around about a different doctor. I brought this up when I went to see my gynecologist ( they have been the most proactive in my health care) and a nurse in the office who has Lynch MSH2 and a cancer survivor looked at my lesion. They both said that I needed to be seen, and made an appointment for me with a dermatologist they were confident about. My genetic counselor also was about to refer me to the same dermatologist.

I went to the appointment, and she thoroughly checked me over. She explained what she was doing and why. She found two cysts, the lesion in question, and is keeping a watch on a dark pigmented area on my face. I left her with a script, advice, and recommendation for a long lasting sunscreen. She wants to recheck me in 4 months.

I have been blessed in finding the right people to ask through trial and error. I feel like a fish out of water at times with where to turn to in finding doctors who know what Lynch Syndrome is. I know that it is new, but it can get a little frustrating when I have questions, but still know more than the doctor I am seeing.

I guess my long winded point is, are other people experiencing the same issues? Due the insurance companies give any trouble? Also, with my lesion being benign (thankfully) at present the doctor wants to keep an eye on it, and chose not to remove it at this time? Is that standard to wait and see, or should I further advocate to have it removed? Everything I have read seems to indicate that you should have it removed.

deleted_user 05/15/2011

Hi! I have Muir-Torre with the MSH2 mutation as well. I understand your frustration. I knew I had Muir-Torre three years before any doctors would listen to me. My current dermatologist thinks I was very smart to figure it out, but the truth is it wasn't exactly rocket science. I had two types of lesions that are rare, especially in younger people. When I googled them together, the first ten hits or so were articles about Muir-Torre. It was a no-brainer when I took my family history into acount. Still, I went to three dermatologists who wouldn't read the articles I printed out, and it wasn't until I was diagnosed with colon cancer (luckily, Stage 1) that I got the genetic testing.

Now, I have a wonderful dermatologist who is both brilliant and humble (the stupid ones seem to have the biggest egos), and I see him every six months. I've had one suspicious (but benign) lesion removed from my face since then, and the surgeon who was recommended by my dermatologist is so skillful that he left no scar. The dermatologist himself has removed two smaller (benign) lesions from other parts of my body (elbow and chest area). He won't touch my face for cosmetic reasons so he sends me to the brilliant surgeon :-)

To answer your other questions, I think it's okay to wait and see. My first lesion was on my face for over two years - I was told it was acne <sigh> - before it was removed, and I was fine. At first my new dermatologist was very aggressive, but now that he knows me better he takes more of a wait and see attitude. I have one lesion that we've been watching for two years, and it hasn't gotten any larger.

I haven't had any trouble from my insurance company.

I am curious what script you got. My dermatologist and I have talked about Accutane but decided against it for now.

You are not long winded. Even though I hate to see other people daaling with this, it's also kind of nice not to feel so alone. There are a couple of other Muir-Torre people here.

And, by the way, it really isn't all that new. Muir-Torre and Lynch Syndrome were both identified in the 1960's, and the MSH-2 gene was discovered in the early 90's.

Megan50 05/15/2011

My husband has Muir Torre. He'd had a several lesions removed that were basal and squamous removed through the years from our primary care doctor. When another (on his chest) came back it was a sebaceoma. The derm that did the path report mentioned Muir Torre, but I didn't follow up on it. When another lesion came (groin) about 6 months later the path report was sebaceous carcinoma. The derm was much stronger in his report about the risk of Muir Torre and the aggressiveness of that type of cancer. It was because of that my husband had another colonoscopy. He'd had one two years previous that was clean. This time he had a large mass. That was when we got the diagnosis of Lynch. Our insurance doesn't pay for the DNA testing, only protein. We have narrowed down to 4 abnormals, but not the particular gene.
The derm is in the same clinic as our Primary Care and surgeon. We haven't had any trouble with our insurance company.
Welcome to our small group. I've really appreciated having Notagaintoo to talk to about issues that relate to this diagnosis.

Ali47 05/16/2011

Notagaintoo, thank you for alleviating my concern. It is wonderful to not feel like I am hanging out there alone. I am sorry that it took so long for you! Also, thank you for the info that it is not as new as I thought. I have much more reading to do. The prescription I got was for a lightening cream for the pigmented area on my face. It is smack dab in the middle of my nose (I know! Couldn't be more noticable!). My derm did not want to jump right into anything that would risk a scar. As she put it we are going to try the slow boat to China over the summer and re-evaluate in Sept. when I see her again. Her husband is a plastic surgeon, and apparently very good. She usually refers out to him when things are tricky. She did however tell me about a longer lasting sunscreen that lasts 5 to 7 hours. It is called Anthelios by La Roche-Posay. It is available at CVS. She said it costs more, but then you do not have to worry about applying it as often. She was really helpful and wrote down what my lesion and dark pigment were so l could look up more information.

I was not diagnosed until I recently showed up with a precancerous polyp with significant growth. Apparently it was caught just in time. If I waited another couple of month I would have had bigger problems. Luckily my genetic counselor and gynecologist were suspicious of my family history and monitored me closely. Unfortunately, for the genetic study we had to wait until one of my family members or myself showed up with a polyp or cancer for the test to be covered. I do not understand why family history is not enough. I am greatful that everything thus far is caught in the precancerous stage. Hopefully, that will remain the case. I go to schedule my hysterectomy tomorrow, and cannot wait to have it over with and healed.

Karen822 05/17/2011

Hi Ali I was wondering why you needed a Hysterectomy, is if propyhlactic? I had one last year for that reason
Karen822

Ali47 05/17/2011

Hi Karen, I lost both my mother and my maternal aunt to ovarian cancer. They were sisters and both died at the age of 46. The genetic study team were concerned since ovarian cancer is higher with Lynch Syndrome, but still lower percentage wise than other associated cancers. There is concern that the mutation that runs through my family may be playing out more in this area. There is also a long history of stomach and colon cancer. At this point it is really just preventative. To be honest I was 17 when my mother died and I watched her struggle for two years. I do not want to even take the chance of that being my fate. I have already had my children and it was felt a long time before I was diagnosed with Lynch that around the age of 40 I should have my ovaries removed. Now with my positive diagnosis, it just makes sense. I actually met with an oncology surgeon today, and he feels we should proceed and not take a wait and see approach either.

Karen822 05/18/2011

I am so very sorry to hear of your losses Ali. I too have a strong family history of colon and stomach. I had colon ca last year. It was at stage 1 thank God, however I did have a resection along with a total hysterectomy plus my gallbladder was removed. I did not need chemo or radiation. I total agree with ur choice to have the surgery. It was a no brainer for me. Like you, I was done having my children ( I have 4).
Please keep me posted as to when ur surgery is. If you need anything at all I will be here. All the best to you Karen

deleted_user 05/18/2011

Ali, so sorry about your mother and aunt. I was diagnosed with Stage 3 ovarian cancer soon after I turned 40. Why I am alive and considered cured almost 15 years later is a mystery to me. I have a feeling ovarian cancer may be more common in Lynch than people think. It's usually diagnosed at an earlier age than other Lynch cancers and is usually deadly. If I had died of my ovarian cancer, I would never been diagnosed with Lynch and would have been just another ovarian cancer statistic instead of part of the "Lynch family."

Good luck and good wishes for a quick and painless recovery from your surgery.

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