Colon Cancer Support Group

I am 4 weeks out from surgery for stage 2a tumor. They suspect Lynch Syndom since my brother was dx at age 39 almost 12 years ago. I am getting genetic testing.

Any Lynch cancer patients here?

Post edited by: mowgli, at: 05/22/2012 04:52 PM

I guess not.. Want you to know I'm with you when you go to surgery.

You be ok.. let me know how you doing ok ! And what is next for you.

Garry

Just wanted to let you know that I did try to find someone who knew something about Lynch Syndrome. Unfortunately, the only ones I did find had written months ago and never did respond to the pm's I sent asking them to pop on and maybe chat with people about it.

I'm so sorry nothing came of it, but hang in there! We're praying for you!

Let us know!

Hugz,

Zin

Hi!

I am new to all this my step dad got colon cancer at 32 and liver at 34 and now colon again at 42 we were informed that he has lynch as does my little brother who is 22.

He has had 90% of his colon taken about was placed on a bag.....he has recently gotten th bag out but is having a very hard time being able to control his "number 2s".

He is now taking medication that he must inject into his stomach 3 times a day.

If anyone is dealing with this please let me know!

Thanks!!

Hi,

I have Lynch Syndrome. I am 21 years old and have already had my first colonoscopy. It scared me to death. But, when the results came back negative I could breathe normally again. Those results felt like a fresh start. A very great portion of my family has it though. My mother has a bag because they had to take out too much of her colon. She has lived with it ever since. But, that is it. She is living with it. I realized that these things are very treatable and if caught early very curable. Hold your head up and try not to think of what could happen but what you want to happen. Being free of the syndrome and of cancer.

~Tala

Hi, toni4! Welcome to the group!

It sounds like your father is going through the exact same thing my husband went through a few weeks ago, and is still dealing with the aftermath of. What is the medication he is having to inject? It sounds like a blood clot prevention medication. But I could be wrong.

I know my husband was sooooooo happy to have that ileostomy reversed! Yes, there is going to be a time period in which he will have little warning about needing to go for the "2's". The doc explained it to us. The rectal region is actually the area of intestines that is closest to the sphincter muscle (the muscle that controls when everything goes out). The anus is the actual opening. But that section of rectum actually is a reservoir for the "#2's". It holds everything, giving you time to get to the bathroom. But, when that reservoir is removed, like in my husband and what sounds like is going on with your dad, there is no where for the "2's" to be stored, so they go straight through! Hence having very little warning beffore having to hit the bathroom! My husband had to actually wear the "adult diapers" for a few weeks before he gained enough control that he didn't have accidents. We only have one bathroom, so the standing order was, go in and get done so he has a clear path when he needs it.

That part will get better, as the area that was attached near the sphincter will gradually form a reservoir like the rectal area had done. Sooo....there is a light at the end of the tunnel. Is he watching his diet? No fresh fruits or veggies! Must be processed or cooked. Nothing spicy. Just general things like that. Watch for black stools or output. If it's BLACK, call the doc. If there's a little blood, don't worry about it. That is normal after a surgery like this. But if it's in excess, of course, call the doc. Will he have to get chemo after this? Do you know what stage he is? I'm just curious there.

Anytime you want to chat, I'd be happy to listen. I don't know alot about all of this, but I'm learning as my husband is going through this.

Take care, and you know where I am!

Hugz,

Zin

P.S. I'm sorry I took so long to comment on this thread, but things have been really crazy for me lately. I've barely had any time to breathe.

Hi Mowgli! Hope your surgery went well. Give us an update! I too have Lynch Syndrome (MSH6). Now I have to do all kinds of super fun annual cancer screenings: EGD (had polyps), colonoscopy, ultrasounds of my uterus and ovaries, urine cytology, mammogram, CA125... For any of you that have Lynch Syndrome, I highly recommend meeting with a genetics counselor to go over statistics, care options, and put together a game plan. Because of my much higher than normal risk of uterine/ovarian cancer (mom and aunt both had uterine/endometrial cancer), my plan was to have a total hysterectomy and oophorectomy at age 45 (I'm 37), then hormone replacement for 5 years only. Unfortunately my CA125 just came back slightly elevated at 36.2, so that plan may no longer be an option. My younger sister opted to have her uterus, cervix and one ovary removed, and will have the other ovary taken out at age 45, then 5 years of hormone replacement therapy. My biggest concerns are for my son, who won't need to be tested for Lynch until he's an adult, and of course the cost of screenings, treatments, and surgeries. My insurance won't cover any of my screenings as "preventive" even though that's exactly what they are. I've been told by the doctor's offices and insurance company that "there is no such code" in regards to preventive cancer screenings for Lynch Syndrome. I wish all of you with Lynch Syndrome good health, the best of luck, and long happy lives. Hugs to you all!

Hi, Jadesphinx!

You mentioned that the docs and insurance companies claimed there was "no such code". Then tell them to make one! I wouldn't normally say that, but a friend's late wife actually had to go through a lot of extra training to learn the codes the docs are talking about and all the details that went with them. This wonderful lady ended up working hard with the insurance company and actually managed to get a code created for a man who was quite ill and had the same difficulties in regard to coding. I wish she were with us, as I would send you to her in a heartbeat! All I can do is keep you in my thoughts and pray you find a determined, selfless individual who is willing to go the extra several miles! I wish I knew more. But I hope this helps in some way!

Hugz,

Zin