I think I'm dying ...

[SimpleAstronaut]

Hi all. ^^

Not a very nice place to write, but I will do my best to explain stuff.

I'm diagnosed with "familial adenomatous polyposis". I have about 100-120 polyps, both in stomack and rectum/colon ....

I just got out of hospital, and my release paper says that they discovered about 20-25 new polyps all over me. They sended me to some high tech .... cat scan kinda stuff, some sort of scan.

The thing is ... I'm 95% sure that my polyps will just paralyse my colon, until one of them turns to the dark side, and betray his evil master. xD

The thing is; I'm 95% sure that I'm dying, and I don't have idea how to tell anyone. My doctors are super quiet, no-one won't tell a thing, ... but I'm sure I'm done ....

Again, I don't have cancer yet, but my polyps just keeps on multiplying. And to me - it doesn't feel or sounds nice .....

So ... How to tell my girlfriend that, best friend that, best female friend that .... anyone has idea?

Thanks.

[dewsbu]

Polyps are generally removed during colonoscopy etc.......

Your GP should have access to your records and prognosis and are usually approachable.

Take your girlfriend or a family member with you when you next visit your specialist or GP.

When dealing with any serious condition it is good to have at least one other person with you to help you understand things and ask questions you may forget while trying to process the information you are being given. 

You can also get a second opinion.

[randrace]

I don't think you are dying. It sounds like you are still in stage 1 or 2. Just ask your doctor, "what is the average life expectancy of someone who has what I do." They should have no problem talking to you about possible outcomes.

[CaptainAustrali]

Mate, how are things going now ?

Honestly, to me your original post reads very scared, but also a little bit hypochondriac-y ?  (No offense, please, mate !).

The poster who suggested to ask your doctor straight up:  "what's the normal situation and life expectancy for people with my same disease profile?" ... I think that was golden advice ... did you find out ?

Is your health OK ?

I think it might add context for other people currently suffering death anxiety who see your post.  That feeling of "Oh Shit, I have cancer, I just *KNOW* it !" .. I've actually had a friend from France, young, healthy lovely guy named Thibauld, who would often talk about how convinced he was that he had cancer, and that he was going to die young from cancer.  (Ironically he's still fine, and it's ME who got hit, heh).

It's kinda a form of Munchausen Syndrome, where an otherwise healthy person suffers death anxiety.

Mate, not saying you don't have legitimate reasons, absolutely, not trying to dismiss or trivalise, just very curious if you're currently OK ?  From what I've read polyps are pretty normal .. although it sounds like you have them in abundance, which I imagine is no doubt a grave concern.

Did your condition escalate into cancer ?

Are you still OK ?

What words of wisdom would you impart to other folks browsing these forums who are suffering death anxiety ?

Me personally ?  Not sure that it's wisdom, but I'd say:  if you're preparing to die ... don't forget to live.  You're still breathing, so there's still time.

[SimpleAstronaut]

Wow, I wasn't here for some time.

After last colonoscopy, doctor was rough a little bit, so I got hernia after it. Now I need to go to hernia surgery, my schedule is to make it in next 10 days.

My polyps in stomach are back, even through my stomach was clean, they again keeps growing in stomach, so I have a lot of issues with drinking / eating,  cause food is reacting to polyps in stomack.

My colon is acutally really okey. I have like 40-50 polyps, but they are all 3-5 milimeters / mm.

But again, I think they are spreading like crazy.

Doctor said I'm ok with stomach for like 10 years. I don't need to take polyps out of stomach for 10 years, couse they are actually super slow growing.

And I think I kinda need to go on colectomy in about 5-7 years time, it looks like more real option as time is passing by.

Still don't have genetic conformation of disease. It's a slow proccess ... Since I'm like APC and MUTYH negative, it's hard to guess which gene did mutate in order for me to have 120+- polyps.

Sry for bad english.

[SimpleAstronaut]

Again, polyps are normal if you have 70 years, and you have about 2 of them maximum, and you get them if you ate Mcdonalds junk you whole life . XD I have 24 years, and I have 120 of them. xD That isn't very normal.

[SimpleAstronaut]

Just to give you update, I'm back from colon hernia surgery.

Bad news, I have second hernia - stomach one. So acid destroys my mouth. -.-

[SimpleAstronaut]

Just to give you update, I have 3rd hernia, on left side this time, ingunial hernia also ... I still have gas, peeing problems, need to go on scan to be 100% sure, but I think I have it.

F*** you F.A.P.

[CaptainAustrali]

Touch wood, mate.

There's a thing called a PET SCAN, if you don't already know, where they inject some kind of special radiation into your body that illuminates cancer cells. 

Diagnostically, it's apparently quite definitive.  

Biopsy of course is the way to go, but depending on location and concerns with occult (unknown) cancer, it can't give you the clarity and closure you might need/want.

But a pet scan lights up your entire system, highlighting even microscopic instances of cancer.

I've had two - one bad, one (after treatment) good.

Just mentioning it in case it helps you.  "Not knowing" is no place to live.

[looker_labs]

I don't have a lot to say but I want to give you hope.

First of all I think you have a great surgeon.

I still have one they can't get,  I'm type O and some just break off.

They do need to get all of them or at least most of them.

Hang tough.