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neeter
@neeter

Posts: 2
Joined: Apr 07, 2016

Lynch syndrome and GYN cancer

Posted by @neeter, Apr 7, 2016

I would like to hear about treatment experiences for women with a diagnosis of Lynch syndrome and GYN cancer. I am having difficulty establishing a treatment plan for a 2nd cancer in the peritoneum (stage 2). My initial cancer was 10 yrs ago in the endometrium. Any thoughts?

REPLY

Hi @neeter, welcome to Connect.
I’d like to introduce you to a few members, who also have experience with a double cancer diagnosis. First meet @travelgirl who was diagnosed with two primary cancers two weeks apart: cecum cancer and follicular lymphoma. @sue_in_delaware who also has colon cancer. And @martid who is also dealing with 2 primary cancers: breast cancer and now liver mets from colon cancer. @hopeful33250 was just recently diagnosed with her third neuroendocrine tumor.

I realize that none of your diagnoses are the same, but it might help to connect with others. I’m sure they’ll share with you here or you can join @travelgirl @martid and @hopeful33250 in this thread https://connect.mayoclinic.org/discussion/diagnosed-with-two-primary-cancers-two-weeks-apart-cecum-cancer-and-follicular/

@neeter – what issues are you having with establishing a treatment plan?

Welcome @neeter, I believe that you will find encouragement and support in this group. We have all had difficult diagnoses to face. Best wishes as you seek the best treatment.

Hi @neeter, welcome to the group and so sorry you get be part of the family…

I was diagnosed on 12/19/15 with Cecum Cancer and then on 1/4/16 with Follicular Lymphoma. With the Cecum cancer, Mayo took blood to test me for Lynch Syndrome. however tests came back further testing needed. When they found the follicular lymphoma, that kind of of explained why Lynch isn’t an easy find. So I go back in May for more testing.

I hate say my Mother died from Endometriosis cancer at age 59 back in 2002. She was a pretty stubborn woman and didn’t trust doctors. Refusing any and all treatments. Which she followed in the same direction as her father, who died of Bladder cancer in his 60’s. who refused treatments. Same with on my Dad’s side my Grandfather died of liver cancer . He also had a brother who died of liver cancer both in their 60’s, Plus he had 2 more siblings die of colon cancer in their 50’s and one of breast cancer. I am surrounded by relatives who died with cancer. I don’t have any brothers or sisters and my support group is all men. My Mom and Grandma died and left me with 7 men. Trust me there not the best at being a supportive group. Horrible I might say.

So how am I handling this? You just live while you can. And I look at other people who have other debilitating diseases. God, having a disease of any sorts is a horrible to have to deal with. Yes I have my moments and days where I break down feeling sorry for myself. But I just have to keep reminding myself that I am going to kill cancer. I want to add Miracle, into the phrase doctors kept telling me about my case that I am “Rare but not Unusual”

I actually feel fine even after the colon surgery. The surgery was in 1/11. I came home and all I needed was over the counter Tylenol. I never needed the stronger pain pills they gave. I swear the Doctor’s at Mayo were godly. Cause I have to be an odd case, of only needing Tylenol after a foot of your colon removed.

6 weeks after surgery (Shhh I shouldn’t say this but) I went on a Rock cruise. I go the hell with it, what do you do when get diagnosed with 2 cancers, you go party like a rock star. (I didn’t drink or smoke) Today, I am just about 12 weeks after surgery. I am getting back on my mountain bike (Colon surgeon said no mountain bike for 12 weeks) and I am heading straight to the gym. (hematology DR says don’t loose any weight).

Well I been gaining weight and I can’t be sitting around the house, working and thinking about cancer. It will make us crazy doing that. So I need to channel my energy into making myself feel better and not stressing about life.

So you know I am on, what is called a wait and watch approach. Colon cancer was removed and the follicular lymphoma, well I am not having any symptoms that they treat. So your sent home to wait and see if and ever your lymphoma morphs into something more serious. You become a CT scan patient. Cause that is what is, my current course of treatments.

So with my all I said.

Can I just recommend to you that you need to seek out 2nd and 3rd opinions. I saw 3 GI Doctors. Mayo Clinic was my 3rd opinion. I can honestly say I trust them wholeheartedly. And when I went too them, my gut knew something wasn’t right about my body. The first two doctors made me feel like I was making stuff up. Like there was no way with what I was saying could I look so good and have perfect blood work. They swore up and down to me all I had was a precancerous polyp. If I would of listened too them. Well it scares me to think of what I would be going through now. They only recommended removing my Cecum. Even their surgeon felt the same. Told me to go home and think about what kind of surgery I would like? Asked me what I felt was best to do remove, just my cecum or let him take 6 inches of my colon and a few lymph nodes. Just incase there was a slight possibility that it came back cancerous.

Personally, I don’t want doctors leaving what is the best course of action for my medical care up to me. You really need really good Doctors. One you can trust, and one who makes you feel like your life is most important to them. The Doctor should know what is the best treatment plan for you. When you find that doctor you will know what will be the best treatment plan or course to take.

I wish I could offer you more.. God Bless.

Travelgirl

@travelgirl

Hi @neeter, welcome to the group and so sorry you get be part of the family…

I was diagnosed on 12/19/15 with Cecum Cancer and then on 1/4/16 with Follicular Lymphoma. With the Cecum cancer, Mayo took blood to test me for Lynch Syndrome. however tests came back further testing needed. When they found the follicular lymphoma, that kind of of explained why Lynch isn’t an easy find. So I go back in May for more testing.

I hate say my Mother died from Endometriosis cancer at age 59 back in 2002. She was a pretty stubborn woman and didn’t trust doctors. Refusing any and all treatments. Which she followed in the same direction as her father, who died of Bladder cancer in his 60’s. who refused treatments. Same with on my Dad’s side my Grandfather died of liver cancer . He also had a brother who died of liver cancer both in their 60’s, Plus he had 2 more siblings die of colon cancer in their 50’s and one of breast cancer. I am surrounded by relatives who died with cancer. I don’t have any brothers or sisters and my support group is all men. My Mom and Grandma died and left me with 7 men. Trust me there not the best at being a supportive group. Horrible I might say.

So how am I handling this? You just live while you can. And I look at other people who have other debilitating diseases. God, having a disease of any sorts is a horrible to have to deal with. Yes I have my moments and days where I break down feeling sorry for myself. But I just have to keep reminding myself that I am going to kill cancer. I want to add Miracle, into the phrase doctors kept telling me about my case that I am “Rare but not Unusual”

I actually feel fine even after the colon surgery. The surgery was in 1/11. I came home and all I needed was over the counter Tylenol. I never needed the stronger pain pills they gave. I swear the Doctor’s at Mayo were godly. Cause I have to be an odd case, of only needing Tylenol after a foot of your colon removed.

6 weeks after surgery (Shhh I shouldn’t say this but) I went on a Rock cruise. I go the hell with it, what do you do when get diagnosed with 2 cancers, you go party like a rock star. (I didn’t drink or smoke) Today, I am just about 12 weeks after surgery. I am getting back on my mountain bike (Colon surgeon said no mountain bike for 12 weeks) and I am heading straight to the gym. (hematology DR says don’t loose any weight).

Well I been gaining weight and I can’t be sitting around the house, working and thinking about cancer. It will make us crazy doing that. So I need to channel my energy into making myself feel better and not stressing about life.

So you know I am on, what is called a wait and watch approach. Colon cancer was removed and the follicular lymphoma, well I am not having any symptoms that they treat. So your sent home to wait and see if and ever your lymphoma morphs into something more serious. You become a CT scan patient. Cause that is what is, my current course of treatments.

So with my all I said.

Can I just recommend to you that you need to seek out 2nd and 3rd opinions. I saw 3 GI Doctors. Mayo Clinic was my 3rd opinion. I can honestly say I trust them wholeheartedly. And when I went too them, my gut knew something wasn’t right about my body. The first two doctors made me feel like I was making stuff up. Like there was no way with what I was saying could I look so good and have perfect blood work. They swore up and down to me all I had was a precancerous polyp. If I would of listened too them. Well it scares me to think of what I would be going through now. They only recommended removing my Cecum. Even their surgeon felt the same. Told me to go home and think about what kind of surgery I would like? Asked me what I felt was best to do remove, just my cecum or let him take 6 inches of my colon and a few lymph nodes. Just incase there was a slight possibility that it came back cancerous.

Personally, I don’t want doctors leaving what is the best course of action for my medical care up to me. You really need really good Doctors. One you can trust, and one who makes you feel like your life is most important to them. The Doctor should know what is the best treatment plan for you. When you find that doctor you will know what will be the best treatment plan or course to take.

I wish I could offer you more.. God Bless.

Travelgirl

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 Good advice from travelgirl.  When my 3rd neuroendocrine tumor was found in February, I got three different opinions from three different medical centers in the SE Michigan area where I live.  I finally found a doc who could do the least invasive type of surgery available (and who had also trained the docs in the other medical centers in this type of procedure), so I decided on him.  My surgery will be Monday, April 11.
Best advice is to talk to lots of medical folks.  One of my cardiologists told me that it is a good idea to be your own advocate in your medical care and I believe him.  Ask all the questions you want and don’t hesitate to ask more! 

I have Lynch Syndrome but have never had internal cancers. I have had squamous cell skin cancer and sebaceous adenomas. I do go to Mayo for yearly tests and screenings to check for any cancers. I have found you do have to be your own advocate. No one is more concerned about your life and health than you are. I did double check after one of my tests and someone had missed something on a pathology report and it was a big miss, but through my double checking with my doctor, the miss was found and I needed to have surgery which prevented gastric cancer. So, stay on top of it and be persistent. If they don’t like it, maybe you need a different Dr. because I believe a good Dr. would listen and do some checking, which my doctor was willing to do. I believe a good help for all of us with Lynch would be to have a support group. I did go to the Lynch Symposium in Minneapolis one year (2013). It was so helpful. The next year it was in Michigan and I was unable to go. The next year (2015) I never heard about it. Prayers for the strength and guidance you need to
get through everything.

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