How are you now?
I have Lynch Syndrome too (HNPCC). Similar to you but not the same. I had a total colectomy.
I have a hernia in my stomach (3 hernia) and I need to have more surgery. I really, really don't want to go under the knife again. I've lost count of how many surgeries I've had.
Just be honest with them it’s hard I know I told my sons that I never want to hurt but the reality is or was whilst they were upset the are handling it in their own ways. For me it’s hard to see them suffer but I fell that I am no longer needing to act as if it’s all ok because it’s not. At least we are all going through it together as a family which strangely brings with it comfort to all. Everybody can be just how they need to be. We have cried together and still enjoy the time we have. Creating those good memories will I hope help my sons and family when I am gone.
good luck just follow your heart.
I wasn't here for some time. I needed some time alone honestly.
Hm ... My throat is still hurting like hell. I'm pretty sure I will get Esophageal cancer so ....
I pretty much don't care anymore honestly.
My body is in phase that I feel "strange". Not like it's hurting me anything ..... I just general feel strange in my body.
Only throat is killing me ....
My whole body just feels strange, like super strange. I can't describe it, it just feels strange.
Last time that I told doctor I feel strange in my body, he wanted to give me alcohol test. xD So I learned my lession in terms of going to doctor with sentence; I feel strange. xD
I will die anyway soon, so I don't care anymore.
I can just pick cause. xD
Do I want throat cancer cause acit will destroy my throat, do I want colon cancer cause I have leg hernia and I maybe can't go to colonoscopy anymore, do I want heart stroke cause of too much stress.
My body just feels strange in general. And I'm slowly loosing controll over my body. My body is starting to giving up on me so ......
And if I go to like get rid of throath pain .. I need to go to few surgeries, which I wouldn't make alive out of .... so it's pretty much pointless to do them.
And if in some rare case I survive them, I will get cancer 2 weeks later cause of polyps in tissue below my stomach.
If I get rid of throat pain, I will get cancer in duodenum cause I have 40 polyps there so .......
If I decide to get rid of throat pain - duodenum cancer.
And if I don't - esophageal cancer
And I'm f**ked no matter which one I chose. xD
I would already do colectomy if I had polyps only in colon / rectum, I would risk with that.
But I'm one on 13% of cases who has polyps in duodenum also.
So I'm not sure if my polyps from duodenum will go to small intestine, or not.
I'm not sure if there is a case of someone having polyps in small intestine.
I might have them in future so .....
If it was colon only, I would do it instantly.
But I was unlucky to have polyps in duodenum also ....
Mate, if I can be completely frank with you - I'm not an expert, I'm just a guy. I've been facing a life threatening cancer and right now am dealing with a possible recurrence issue. I understand life threatening illness and empathise with fellow sufferers.
It sounds to me like you're diagnosing yourself with untreatable cancers that you don't even have ?
I think you need care, mate - sounds like you've tried talking to your doctor and gotten a pretty poor response, but I think you should persevere.
Any problem needs to be broken down into individual pieces that can be tackled and ideally overcome. "I better not get my throat fixed, it's probably cancer, and if it doesn't kill me the cancer in my rectum will, or I'll die in surgery … and …. etc" … you deserve better than that, mate. I think you should try and talk again to your doctor, and also specifically raise getting access to a counsellor - I don't know exactly what your situation is, but for me, they have counsellors working in cancer care at the hospital I attend, and I can call them at any time and seek help.
I think you need to find a way to navigate forward, and it sounds to me like you need proper help to do that. I'm sorry that you feel almost as if you don't belong in your body .. I feel that too myself sometimes (mainly from lack of sleep I think!) .. but I wouldn't be defeatist about it … I think everybody deserves hope and some kind of forward direction.
If you're not getting that now, I just reckon you shouldn't give up, but try and find new avenues to get the support you need.
I'm sorry mate, I'm not trying to impose on your way of thinking and living - it just sounds like you've given up on any hope of any kind of viable future, and I think you should do a little stock-take, and see if you can find some way to galvanise yourself into continuing to fight (for life, health, happiness and wellbeing)
Based on the information I've read that you've written, I agree with CaptainAustrali.
I would advise going to see a doctor or a surgeon and discuss with them what the treatment options are, if you haven't already.
Discuss with the same medical professionals what the monitoring options are.
I know that it can feel utterly overwhelming. I get that.
But now is the time to discuss with medical professionals what you and they can put in place to at least try and manage some of these risks.
Be part of this supportive community