FAP & pregnancy

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shebefergy
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Joined: Sun Jan 27, 2013 11:13 pm

FAP & pregnancy

Postby shebefergy » Sun Jan 27, 2013 11:42 pm

Hello everybody!

So obviously, my question has to do with FAP and pregnancy. Bit of some background about me--I'm 29 was diagnosed with FAP when I was 11, had surgery when I was 14 and with the exception of two not-so-great check-ups, I haven't had any problems or difficulties. I get checked up every year and whatever polyps are found in my J-pouch and duodenum, are removed. Also, I take Sulindac daily and have done so for several years now.

After going round and round with my husband, having looked into adoption--even starting the homestudy process, we have decided to have a child ourselves and naturally. I have...I suppose you can say moral issues with IVF--I just...well, if my parents had known my mom (died of metastasized CC when she was 46), if they had FAP 30 years ago and went with IVF, I wouldn't be here today. I know the arguments for it--and believe me when I say I've gone through them all but this is something that I'm not going to suddenly going to be okay with. This particular water is too murky for me to wade into. And while I'm pro-choice, when it comes to my situation, I'm adamantly against abortion.

Tomorrow, I'm meeting with my OBGYN, get my IUD removed and next week, I'm seeing my GI about concerns with getting pregnant with FAP--what a pregnancy will can, the possibilities and what not. Lucky for me, my GI has had a few patients with FAP--he was involved in research down in Irvine but he only has had one patient with FAP who I believed was diagnosed when she was pregnant so he doesn't exactly have first hand experience with a pregnancy involving FAP. As for my other doctors, I'm their first patient with FAP. (Anybody else out there that get those wide-eyed looks from doctors the first time you meet them?)

My question is to all you mom and dads with FAP--regardless of how your kids were conceived, what were your pregnancies like? Any troubles with sudden issues like desmoid tumors? For those moms out there, Nutritional concerns? How bad was your morning sickness? That is, if you had morning sickness, was it so extreme that there were issues with hydration? I ask because the one time I caught a stomach bug, I ended up in the ER within two hours b/c I was near shock from dehydration. If you happened to take Sulindac or Celebrex (I think they are similiar drugs), were you able to take it through your pregnancy/breast feeding? I'm sure there are more questions but I can't think of them right now.


Thanks!
Nickie

Oh, by the way--I'm all for discussion but for those of you who don't agree with my decision to have a child--please keep it to yourself. Trust me when I say, I've heard it all from others already and been there done that with upsetting conversations.

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beccab1
Posts: 624
Joined: Wed Apr 14, 2010 7:37 pm
Location: Raleigh, NC

Re: FAP & pregnancy

Postby beccab1 » Mon Jan 28, 2013 9:38 am

I don't have any information but there are a couple of sites that may help -

http://www.polypeople.net/

http://www.fapgene.com/

Hope everything works out for you!
My husband, Eric, dx @ age 35
Stage IIIb RC (T3N1M0), 3/10
Finished 6 weeks rad/xeloda 5/10
Surgery 7/10, Lap LAR, Colonic J Pouch, Temp. Ileostomy
ypT2N0M0
Xelox (5 rounds)
Takedown 12/13/10
Clear CT - 2011-2015

Hall0731
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Joined: Sat Sep 08, 2012 1:55 pm
Facebook Username: Teresa Hall
Location: Spring, Tx ( right outside Houston)

Re: FAP & pregnancy

Postby Hall0731 » Mon Jan 28, 2013 1:56 pm

Welcome to the club.

I am not sure how much I will be able to help. I was diagnosed with FAP after I had my colonscopy, endoscopy, ct scan, and had surgery to remove my whole colon. I do not have a jpouch. I opted not to have it for the simple fact that I was (am) stage 3 cc. I had this dreaded cancer in me through my whole pregnancy. I didn't have any bathroom problems that I remember. My pregnancy with my daughter went very well, besides my labor being quicker than my first. In fact I had FAP through both of my pregnancies. From my ct scan they never saw anything, so i didn't have problems with desmoids that I know of. I never had morning sickness with either of my pregnancies. I think that one will depend on the person.I would drink as much water and drinks as you can to keep up the fluids. I know with a jpouch you go to the bathroom more. I would ask your ob/gyn about the sulindac or celebrex.. I would check out a website called www.fapinfo.com It has everything you could possibly want to know about fap. I beleive it has a section for fap and pregnancy. Also I know Dr. Lynch with MD Anderson in Houston is a specialist in FAP. I am currently going to him as my 12 year old son is in his clinical study using celebrex to prohibit the growth. I hop this helps you some. I know mine was discovered after my pregnancies, but it has been growing in me since I was in my teens I am assuming.
Dx 7/12 stage 3
8/13 1 lung met & 5 liver mets
1/14 2 sided liver wedge resection
3/14 lung wedge resection
10/14 It's back. 1 liver lesion
2nd liver resect. 1/5/15 Clean
5/22/15 back again 5-10 lung mets

advansteyn
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Joined: Thu Nov 14, 2013 9:32 am

Re: FAP & pregnancy

Postby advansteyn » Thu Nov 14, 2013 9:37 am

Hi,

I am 27 years old and I was diagnosed with FAP at 14 and had my colon removed with a j-pouch at 16. I also have 2 younger sisters that have all been through the same thing.

Recently I met with my GI doctor to discuss pregnancy. She did tell me that she has seen many FAP patients that have gotten pregnant but that getting pregnant may be difficult.

I would love to discuss with you anything that you may have heard.

-Alison

Pkarmz
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Joined: Tue Nov 19, 2013 7:16 pm

Re: FAP & pregnancy

Postby Pkarmz » Tue Nov 19, 2013 7:41 pm

Hi,

I have FAP and was not diagnosed until I was 21. For one reason or another my father didn't feel the need to inform me of this family disorder for I found out after have many symptoms, including dropping down to 80lbs (I have always been light, but around 95 lbs). I am 30 years old and had a total colectomy ileostomy j pouch with osmosis when I was 21 (November 2004). To make my medical history even more interesting, I also have a ventricular septal defect (VSD). I was born with a very small hole in the septal wall of my heart. I had my first son prior to my surgery (I did have him young- when I was 18) and now my husband and I are expecting another child. I am currently 8 weeks pregnant. Before conceiving I had discussed our interest in having another child with my OBGYN, Colorectal Surgeon, and Cardiologist- they were all on board saying I should have a normal pregnancy and should even be able to deliver vaginally. The only concerns at this point are making sure I stay hydrated, that my body absorbs enough nutrients for myself & the baby, as well as having enough weight gain.

I do have an endoscopy procedure every 2 years to monitor any polyp growths in my stomach & small intestines. So aside from my GI tract & bowel frequency, everything is relatively normal. I workout often and even ran a half marathon. Everyone's body is different and reacts differently to procedures/surgeries- the best suggestion is to discuss your concerns with both your GI Physician/Surgeon and OBGYN. If some answers don't seem right or are concerning, ask them to explain it in a way you will fully understand it better & always consider a second opinion.

Hope this is helpful & good luck!

-Pauline :D

Candice Carter
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Re: FAP & pregnancy

Postby Candice Carter » Sat Mar 28, 2015 12:06 pm

Hi I have FAP it's genetic in my family and affects the 2 oldest children of the eldest child.
From being 11 I have had regular screening and at the at of 16, 19 and 23 had my children 2 boys and a girl. Had healthy full term pregnancies. At the age of 25 I had my colon removed and they left 5 inches of my colon so that I did not have to have a stoma bag. Im now 30 almost 31 years old and have had several issues of pain, problems with eating, certain foods and drinks that make me I'll, pain up on earing food, bleeding from back passage etc... from having my opp 6 years ago I should have been going in to hospital every 3 months for screening however my life is busy and have not. Recently I went back to hospital where I was told that I need to have my completion opp. Which will involve the removal of the rest of my large colon, some of my small intestine, duadeanal and a stoma bag on either permanently or temp and then a reversal opp to make an internal pouch. I was also told that after this opp i could never have any more children.
I was 15 when I was told this the first time so had 3 children before having my opp and unfortunately my relationship with children's fathers failed. I am now married and my husband doesn't have children. We have been given a short time frame to have a child before I need to have my opp and this has put lots of pressure on to us. Plus I worry as i had my 3 other children previous to the first opp. Since having the first opp I've had 5 miscarriages. My body isn't as strong as it once was. I am fever in pain and discomfort. I wonder if I can actually carry a baby and I'm terrified of not getting pregnant this year as I will lose my chance. My husband will never be a biological father. I also wonder how my body will react to being pregnant.
If anyone has any answers or is going through same/ simular situation I would love to hear from you.

lpas
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Joined: Wed Nov 19, 2014 11:11 pm

Re: FAP & pregnancy

Postby lpas » Sat Mar 28, 2015 8:18 pm

Candice Carter wrote:Hi I have FAP it's genetic in my family and affects the 2 oldest children of the eldest child.
From being 11 I have had regular screening and at the at of 16, 19 and 23 had my children 2 boys and a girl. Had healthy full term pregnancies. At the age of 25 I had my colon removed and they left 5 inches of my colon so that I did not have to have a stoma bag. Im now 30 almost 31 years old and have had several issues of pain, problems with eating, certain foods and drinks that make me I'll, pain up on earing food, bleeding from back passage etc... from having my opp 6 years ago I should have been going in to hospital every 3 months for screening however my life is busy and have not. Recently I went back to hospital where I was told that I need to have my completion opp. Which will involve the removal of the rest of my large colon, some of my small intestine, duadeanal and a stoma bag on either permanently or temp and then a reversal opp to make an internal pouch. I was also told that after this opp i could never have any more children.
I was 15 when I was told this the first time so had 3 children before having my opp and unfortunately my relationship with children's fathers failed. I am now married and my husband doesn't have children. We have been given a short time frame to have a child before I need to have my opp and this has put lots of pressure on to us. Plus I worry as i had my 3 other children previous to the first opp. Since having the first opp I've had 5 miscarriages. My body isn't as strong as it once was. I am fever in pain and discomfort. I wonder if I can actually carry a baby and I'm terrified of not getting pregnant this year as I will lose my chance. My husband will never be a biological father. I also wonder how my body will react to being pregnant.
If anyone has any answers or is going through same/ simular situation I would love to hear from you.


Be careful, Candice. My doctor believes my tumor started growing sometime within the past 5 years, which spans two pregnancies for me. I was diagnosed just prior to my youngest's first birthday. I love my children and don't regret my decision to get pregnant for even a minute, but I do firmly believe my pregnancies played a role in the development of my cancer. The immune system is suppressed during pregnancy and albumin levels fall significantly during the third trimester. Both of these factors can lead cancer to develop in those who are predisposed. I posted a link below with some additional information.

It isn't cheap, but have you thought about the possibility of harvesting your eggs and using a surrogate? If you have a relative (maybe a sister?) who would be willing to carry a pregnancy for you it might be less expensive than you think. Good luck no matter what you decide.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2594292/pdf/jnma00324-0107b.pdf
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & Celebrex
3/16 Ovarian mass removed. Benign fibroid
9/16 clean scope
4/18 clean CT
Ongoing Celebrex, Tagamet & other carefully-targeted supplements
Post-chemo CEA 3.0, 2.5, 2.3, 2.0, 1.6, 1.3, 1.8, 2.1, 1.8, 2.0, 1.8, 1.9, 1.7, 1.5, 1.6, 1.5, 1.4, 1.4, 1.3, 1.3, 1.6, 1.6, 1.3, 1.4, 1.6, 2.2, 2.4, 2.1
Mom to a 4 & 6yo

Candice Carter
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Re: FAP & pregnancy

Postby Candice Carter » Fri Apr 03, 2015 3:54 am

thanks ipas for getting back to me.
i know what you mean when you say that you feel the pregnancies brought on the fast development of the cancer. all my parents and grandparents had children in there 20's polips had not turned until 40's with every generation in our family polyps seems to be turning years earlier. With me being a young mother having children at the ages of 15, 19 and 23 i too believe and had confirmation that the pregnancies helped towards the fast development and sudden aggressive change in the polips.
i want my own baby, i want to carry it myself, i don't want any to carry it for me. I just got married less than 2 months ago and we have been bombarded with this suddenly.
my heart breaks because my husband wants children just not yet, however we only have a short time frame so whilst he is making up his mind if he wants one i feel like i am going through hell and back every day, i feel so alone in this.
I want a baby very strongly myself but i want to have a child to my husband whilst i still have the opportunity to bare his child, i have this terrible fear that he dose not fully understand the rush and the need to get started on making a baby. i think with him kicking his heels we will miss our opportunity. i have this fear that in 10 years or so, he might want one and i will be unable to give a child to him. me and my husband are amazing together i love and adore, but he always seems to need to wait for everything. whilst he is waiting my life is ticking on by.
im a little emotional today, went in to hospital for a sigmoidoscopy and gastrocoy and i was awake for the full thing. horrible it was. within 3 years i have developed just in the 5 inches of my rectum from 30 polyps to 50. also in the last 5 years going from 5 polyps in my upper stomach to 40, thats a heck of a growth to me. they have taken some biopsies and im booked in for another sigmoidoscopy under sedation and a CT Scan soon.

Momlovesemmett
Posts: 1
Joined: Sat May 23, 2015 2:48 am

Re: FAP & pregnancy

Postby Momlovesemmett » Sat May 23, 2015 3:13 am

I know this is an old thread but for all those looking for answers: I am 28 haven't had surgery yet for j pouch. I had two childen 6 years apart. With my last one born 5 months ago I developed a Desmoid tumor. Grew to the size of a volley ball at the end of my pregnancy. They had to cut it out and 2 ft of my small intestine since it grew into it. Maybe it grew rapidly at the onset of labor? Idk since I wasn't that big being pregnant although my son was kinda small at 6 1/2 lbs. I had a terrible pain a few days after birth. The ob doc thought it was an infection. Weeks later I thought my uterus wasn't shrinking but waited till the 6wk post prego apt to tell her. Beware! Especially if you already had surgery. Now I have less intestine to work with. You may find yourself having to use the bag permanently! Also I wonder if the oxytocin produced in labor and breastfeeding would affect the polyp and or tumor development since it does relate to the other hormones in the body. I'm getting the paragard IUD just to make sure I don't get pregnant again. I am thankful that I have never taken birth control which would alter my hormones too. I had to stay in the hospital for 10 days post surgury. It was the worst pain of my life. And my baby suffered from not being near me for the few days right after surgury. My mother thought that babies need to eat every 5 hrs so I got my baby back lethargic. I figured she would've have overfed rather than underfed - I was sooo pissed and yet I was helpless in my situation... I have a scar all the way up my belly and I have to go through most of this all over again to get the j pouch surgery in a few months. I am waiting until I no longer need to breastfeed him at one year to be less of a pain. I hope this helps someone. If you already have at least one child I recommend just foster or adopt. There are so many children in need!


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