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FAP Stomach C

cstiller
Posts: 9
Joined: Aug 2021
cstiller
Posts: 9
Joined: Aug 2021

I was diagnosed with FAP in July 2009, I had a total colectomy 9/2009, reconnect surgery to my J-pouch 3/2010.  My son was going on 2 years old when I had my colectomy.  6/26/2013 I had a whipple 5 days after my son graduated from Kindergarten. The first 3 years recovering from that were 3 years of hell for my family and myself.  I could not be the mom or the wife that I had always been as a result.  My wonderful husband stood by me even though it was not easy.  During those 3 years of recovering from the whipple I was let go from my job as a nurse.  Then I was able to go back to work as a nurse in 2016.  Last year May of 2020 I was told I had osteosarcoma which thankfully was wrong.  However after having my most recent EGD I was found to have polyps all through my stomach which were all adenomas.  I have my GI doc and a few doctor friends telling me I need to have a gastrectomy.  I am now going to Cleveland Clinic to see Dr. Burke who specializes in FAP to see if there is any other potential options for me.  That appointment is not until 10/18.  MY PMD order some cancer/tumor markers for me at my request and the CA19-9 is at 37 the other markers were higher normal but wnl.  I am so scared.   I have an amazing husband but he is a wreck as a result of this sad news.  He cries a lot and tells me how much he loves me.  He has said multiple times he needs to be strong for me.  I don't mind as I can be strong for him as well.  I don't want him to see me break because I feel if he sees me break that he will know I'm not so certain there is anything good ahead.  We have not told our son yet as he is 13 and I don't want to scare him until we know more.

beaumontdave's picture
beaumontdave
Posts: 1170
Joined: Aug 2013

Sorry you are here, and dealing with all that, my primary doc has FAP and has had several absences to deal with it, but is still my doctor 11 years on. I feel especially close to him, knowing what he's dealing with. My son was just 13 when I was diagnosed, the granddaughter we raised was 8, but my CRC seemed ''gettable from the start, so it wasnt as terrifying for them. It was Cindy's brain tumor 14 months later that had us wondering what to tell the kids. Gliomas are always terminal, and that she made it 6 1/2 years was a major break, as it also allowed my son to get used to the situation [as much as anyone can] and get older in time to cope better with losing his mom. It was harder for the granddaughter, and it all hurt like h*ll for all of us. I'd break down driving to work, or in the middle of anything I was doing, every so often, just not around them. We all lived in the present, and tried to enjoy each day that allowed it. You are in a hard place with harsh choices, and it sucks. The only thing that occurs to me is grabbing the better days and making good moments for your son, you, and your hubby, when and where you can. I wish strength for all of you, to deal with it all...................................................Dave

cstiller
Posts: 9
Joined: Aug 2021

Thank you for your kind words.  I am truly sorry to hear of your families situation.  It is very devastating  to lose and know you will lose a wife, mother, friend.  I wish you and your family all the love and strength going forward.  My son has been dealing with my disease process since he was 18 months old I missed so much of the little things with him.  I am still trying to make up for those times. He is such a sweet, loving, boy and he always has been.  I have not always been the greatest mom to him because of the depression and I was dealing with from having my colectomy when I was 23, and the severe depression I went through after having the whipple when I was 28 and my son was 5 years old.  I missed so many little things and I don't want to miss anymore things he does and accomplishes in his life.

MandiePandie's picture
MandiePandie
Posts: 84
Joined: Dec 2020

But of course Im unhappy why you need to be here (as any member would say). You will find that the support, both the practical stuff and emotional stuff is amazing here. Beaumontdave has the best advice about trying to live in the present, although I am sure with everything you have gone through and are facing it will be difficult but it truley is the only way to not let f*ckin cancer take anything more from you. 

I am sure you have been a wonderful a mom and will continue to be so. Im here because my father was diagnosed and I think I feel similar heartache when I think of missing time with him and the chances of him not being here. Thats when the advice from Dave kicks in and I try and focus on the now.

I hope you get a great second opinion and keep us updated about whats going on. 

cstiller
Posts: 9
Joined: Aug 2021

Has anyone every heard of chemo for adenoma polyps that are not cancer yet?

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