Pregnancy post esophageal cancer and Esophagogastrectomy

Amber W

Hi. I am 28 years old and am quickly approaching my 1st anniversary of surgery. July 2008 I had an Esophagogastrectomy at Duke University. My surgeon removed most of my esophagus and the upper part my stomach that connects to the esophagus, since my Stage I tumor was in both the lower part of the esophagus and the upper stomach. My tumor was very rare and was non-responsive to chemo so I had no choice but to have major surgery.

Although I had a rough recovery (wound dehiscence, extreme nausea, aspiration pneumonia, etc) I am doing very well now and have been medication free for the last 2 months. I have been on a normal diet for several months now and have been working on my overall all physical fitness as well as keeping weight on. I was given a fairly clear bill of health back in January for my 6 month check up. My doctors have told me and my husband that I need to wait at least a year after surgery but otherwise and clear to start trying to have more children (we have a 9 year old son). I have an appointment with a Maternal Fetal Specialist here in a few weeks for preconception counseling.

My question is simply this, has anyone else had this surgery then gone on to have children?? I have not found anyone nor does my surgeon or GYN know anyone that has. Most people I have read about have been past their child bearing years or male. I think women make up only about 14% of those with esophageal cancer. I know that I will be considered high risk but I'd like to hear if anyone else has been down this road too. I am sure I am not the ONLY one, so if you know someone who has I’d be very greatfull to hear about it.

Thanks for listening!
Amber

kitten0385

Hi Amber! I am 24 and am
Hi Amber! I am 24 and am just finishing up chemo here in the next few weeks. I also had my esophagus and upper part of my stomach removed in October of this past year. My cancer was stage 3, but had not spread anywhere else in my body, just to a couple nearby lymph nodes. My husband and I just got married a few months before my diagnosis so have not yet had the opportunity to have children. I too have the same questions you do, and would like to have children before I am 30. I will have my CT scan in June to give me the "cancer free" report. My CT in December looked good and I was told the chemotherapy and radiation treatments have been a preventative measure. I am about 6 months out from surgery and am beginning to be able to eat what I want, though I am nauseous quite often, most likely due to chemotherapy. It is hard being young and there not being a whole lot of research for us out there! You are one of the youngest that I have come in contact with that has the same type of cancer. I wish you the best of luck with your pregnancy journey, and hope that you get everything you could wish for!

Cathy

Amber W

kitten0385 said:

Hi Amber! I am 24 and am
Hi Amber! I am 24 and am just finishing up chemo here in the next few weeks. I also had my esophagus and upper part of my stomach removed in October of this past year. My cancer was stage 3, but had not spread anywhere else in my body, just to a couple nearby lymph nodes. My husband and I just got married a few months before my diagnosis so have not yet had the opportunity to have children. I too have the same questions you do, and would like to have children before I am 30. I will have my CT scan in June to give me the "cancer free" report. My CT in December looked good and I was told the chemotherapy and radiation treatments have been a preventative measure. I am about 6 months out from surgery and am beginning to be able to eat what I want, though I am nauseous quite often, most likely due to chemotherapy. It is hard being young and there not being a whole lot of research for us out there! You are one of the youngest that I have come in contact with that has the same type of cancer. I wish you the best of luck with your pregnancy journey, and hope that you get everything you could wish for!

Cathy

Thanks for your feedback
Thanks for your feedback Cathy! It's nice knowing there is someone else out there with a similar profile to mine. My husband and I were just starting discuss pregnancy when I was diagnosed, big bummer. i too want to try to have biological children before I hit 30, but we've also started looking into adoption "just in case".
Best of luck with your recovery! I had a lot of problems with nausea for about 6+ months post op. I was even readmitted for a week because I wasn't tolerating my tube feedings at all and was loosing a lot of weight. I have been off of phenergan completely now for about 2 months and am very excited! There were times I wondered if this was going to be my life from then on.
My surgeon kept telling me that it was a blessing to get this kind of cancer at my age verses 60+ because my overal health was very good. My parents are in their mid 50s and have blood pressure issues, diabetes, and the like; so undergoing major cardiothorsic surgery would be considerably more difficult for them to recover.
Do you have to sleep propped up? I still have problems with aspiration if I lie flat on a regular pillow at night. My surgeon expects this issue to resolve itself sometime between 1-2 years post op but I haven't had a lot of people to compare with...
I wish you the best in your recovery as well!!
Amber

kitten0385

Amber W said:

Thanks for your feedback
Thanks for your feedback Cathy! It's nice knowing there is someone else out there with a similar profile to mine. My husband and I were just starting discuss pregnancy when I was diagnosed, big bummer. i too want to try to have biological children before I hit 30, but we've also started looking into adoption "just in case".
Best of luck with your recovery! I had a lot of problems with nausea for about 6+ months post op. I was even readmitted for a week because I wasn't tolerating my tube feedings at all and was loosing a lot of weight. I have been off of phenergan completely now for about 2 months and am very excited! There were times I wondered if this was going to be my life from then on.
My surgeon kept telling me that it was a blessing to get this kind of cancer at my age verses 60+ because my overal health was very good. My parents are in their mid 50s and have blood pressure issues, diabetes, and the like; so undergoing major cardiothorsic surgery would be considerably more difficult for them to recover.
Do you have to sleep propped up? I still have problems with aspiration if I lie flat on a regular pillow at night. My surgeon expects this issue to resolve itself sometime between 1-2 years post op but I haven't had a lot of people to compare with...
I wish you the best in your recovery as well!!
Amber

Amber,
My husband and I were
Amber,
My husband and I were just starting to discuss children when I got diagnosed as well. I get nauseous quite often, but am able to control it pretty well with compazine and ativan. When I was on tube feedings I tolerated them pretty well, although they had to switch the type of food I was receiving once due to it not agreeing with my body, then I was fine. I had to sleep propped up at first, and I was not comfortable at all...my doc told met that if I avoided eating 3 hours before bed that I could try sleeping without my wedge...I now sleep without it and am doing fine...although prior to beginning taking prevacid a few weeks ago I did have acid backup in my throat a few nights and it was horrible, I'd be up for an hour coughing and had horrible burning, but since taking prevacid have not had problems. I have also been told that age is on my side, so I guess we have that going for us! I am so happy for you that you have not been on your nausea medicine for a couple of months now, that's great! I go for my last round of chemo on Monday, I am looking forward to getting that over with, the first few days after the injection are no fun at all! You said you had chemo first, what kind did you have? When you had surgery, how long were you in the hospital? I was in the hospital for a week and then the week after my husband stayed home to help me, but then I was able to get up on my own. I had the feeding tube for about 5 weeks. I'm very glad to talk to you...it's nice to know someone is in the same boat out there...if you ever want to e-mail me, my e-mail is kitten0385@gmail.com Talk to you soon!

Cathy

CaitlynZ

I see this is from a while

I see this is from a while ago but I just wanted to know if anyone ended up having kids. I was diagnosed at the age of 33 in 2011. My doctors and ob dont have any esophageal cancer patients who went on to have kids (since most pepole with this type are older males). I would like to have kids but my Drs are concerned that I'll have a difficult time maintaining my weight and they don't know how a pregnancy would affect the esophygectomy 

please let me know. Thank you! 

srija

CaitlynZ said:

I see this is from a while

I see this is from a while ago but I just wanted to know if anyone ended up having kids. I was diagnosed at the age of 33 in 2011. My doctors and ob dont have any esophageal cancer patients who went on to have kids (since most pepole with this type are older males). I would like to have kids but my Drs are concerned that I'll have a difficult time maintaining my weight and they don't know how a pregnancy would affect the esophygectomy 

please let me know. Thank you! 

Private message

CaitlynZ I sent you a private msg...

slpmom

srija said:

Private message

CaitlynZ I sent you a private msg...

there are people out there...

Go to www.cancercompass.com under the esophageal forums and look up Aoife - she had two children after esophagestomy. Amazing!