Adding a baby to stage iv cancer life: Looking for real-life experiences

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karaj
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Adding a baby to stage iv cancer life: Looking for real-life experiences

Postby karaj » Wed Oct 26, 2016 11:37 am

Hello,

When I was first diagnosed, my husband and I were allowed the opportunity to freeze embryos before I started treatment. We don't have children but both want a family. Four months ago a friend offered to be our surrogate. This is an incredible offer from a great friend and her husband. We didn't ask, they just offered!

I am currently NED and my oncologist has said that based on my response to treatments she expects me to continue to do well. She does not want me to try and carry a child myself because of the risk that the cancer will return while pregnant. I do know the average life-expectancy associated with stage iv colon cancer and I am all too aware of the reality. We can't help but consider both the negatives and the positives of the situation. I have spoken with my oncologist and my therapist who runs the young adult program and has been through this with patients before.

This is an incredibly difficult and emotional decision and so, we are looking for real life experiences with the hope of either connecting with the couple or even just reading about their experience. My therapist has reached out to one such couple, where the wife is the one with cancer, but they haven't responded yet (busy with their new baby, probably).

If you have added a child to your family after a stage iv diagnosis (either naturally or via surrogacy or adoption), know anyone who has, or have come across an article or blog that addresses such a decision, I would be grateful to hear from you. And while I do very much appreciate the candor and input from this board, I ask that you please don't respond to tell me why this could be a bad idea. We are going about this decision as responsibly and thoroughly as we can and, as I mentioned, I am all too aware of reality but I think it is also healthy to have hope, especially considering the new treatments in trial. We have already been seriously considering this offer for four months and would like to decide in the next two months or so because if it is going to happen then we want to put those wheels in motion and if it is not going to happen then we need to mourn the loss and move on.

Thank you!
Kara
36 y/o female, dx at 32
8/14 dx Stage IIIC, 10/30 lymph nodes
8/14-9/14: sigmoidoscopy, fertility preservation, port-a-cath
9/14 - 3/15: FOLFOX (allergic to oxaliplatin, underwent desensitization)
4/15: NED
1/16: dx Stage IV, recurrence in three lymph nodes behind abdomen
2/16: FOLFIRI
8/16: NED
8/17: NED, currently under no treatment, scans every 3 months
http://www.karaincancerland.com

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: Adding a baby to stage iv cancer life: Looking for real-life experiences

Postby stu » Wed Oct 26, 2016 11:58 am

Hi,
There is a member here called SkiFletch, a lovely member who is busy with his own life now but sometimes pops on. If you search for him you will see some lovely photos of his baby, who must be a toddler now. He was ned for a longer period of time but you might like look into his story.
take care,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

User avatar
juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: Adding a baby to stage iv cancer life: Looking for real-life experiences

Postby juliej » Wed Oct 26, 2016 5:42 pm

First of all, this decision is yours to make and yours alone. No one has the right to judge you for wanting to move forward with your life, Stage IV diagnosis be damned! Freezing your embryos was a display of hope that is now coming to fruition. It gives all of us a reason to smile in our hearts, treasure those around the family dinner table with us now, and look forward to those who will join us in the future. Your children will be blessed to have such a courageous mother who saved a seat for them next to her.

I know of a great blog by a Stage IV lung cancer patient who had twin girls via gestational surrogate! :D

https://embenkickscancer.wordpress.com/updates-on-emben/

And here's an article about her in Cancer Today Magazine: Reasons to Dream

Hope this helps!
Julie
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

karaj
Posts: 49
Joined: Mon Aug 18, 2014 10:17 pm
Location: Boston
Contact:

Re: Adding a baby to stage iv cancer life: Looking for real-life experiences

Postby karaj » Thu Oct 27, 2016 9:59 am

Thank you, Stu and Julie! These are both great resources. Many, many thanks!
36 y/o female, dx at 32
8/14 dx Stage IIIC, 10/30 lymph nodes
8/14-9/14: sigmoidoscopy, fertility preservation, port-a-cath
9/14 - 3/15: FOLFOX (allergic to oxaliplatin, underwent desensitization)
4/15: NED
1/16: dx Stage IV, recurrence in three lymph nodes behind abdomen
2/16: FOLFIRI
8/16: NED
8/17: NED, currently under no treatment, scans every 3 months
http://www.karaincancerland.com

jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: Adding a baby to stage iv cancer life: Looking for real-life experiences

Postby jhocno197 » Thu Oct 27, 2016 10:48 am

There is an autobiography called When Breathe Becomes Air. The man, who was dying of cancer, and his wife decided to have a baby, even though they knew he would die soon. He talks about how much joy he had in their child; they never regretted it.

We didn't know about my husband's cancer when we had our youngest, though it must have already been there as he was stage IV and had a pretty large tumor at diagnosis when our baby was only 8 months old. While there is the sadness of knowing he will not be there as she grows up, quite frankly she is the only reason we have gotten through and not lost it completely on many days. She has absolutely been a gift.
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

zx10guy
Posts: 233
Joined: Mon Jan 07, 2013 12:54 pm

Re: Adding a baby to stage iv cancer life: Looking for real-life experiences

Postby zx10guy » Thu Oct 27, 2016 10:52 am

I'm the one with cancer so things are a bit different in my perspective along with the fact I was Stage 3B and recently had to deal with what is probably going to be considered a new primary, which was caught early enough for a Stage 0 diagnosis. My wife was pregnant with our daughter a few months after I ended treatment. While everyone worries about what lies ahead with the what if the cancer comes back, no one, including myself ever thought of the psychological challenges which has cast a dark cloud over what most parents view as the most joyous time of their lives.

If you want to talk further about what I have gone through and what I continue to go through, feel free to reach out to me.

Nik Colon

Re: Adding a baby to stage iv cancer life: Looking for real-life experiences

Postby Nik Colon » Thu Oct 27, 2016 1:24 pm

I can't say much since my daughter is 13 and I was only dx 2 yrs ago.
Just from what you wrote it sounds like you have already made up your mind since you only want to hear the positives. So, I would say you gave yourself your answer.
Best wishes to you and your family (current and future)

Chayo
Posts: 25
Joined: Thu Nov 26, 2015 10:42 pm
Facebook Username: Chayo.ramirez

Re: Adding a baby to stage iv cancer life: Looking for real-life experiences

Postby Chayo » Thu Oct 27, 2016 8:17 pm

Are you part of Colontown on Facebook? There's a parents group there that would likely have people in this situation in it.
Chayo
Dx 11/24/2015 Colon Cancer at age 45
Adenocarcinoma in the sigmoid colon
12/16/15 colectomy
Stage 2, T3N0
Started Folfiri Feb 1, 2016

Ehut
Posts: 233
Joined: Wed Sep 26, 2012 4:24 pm
Location: Algonquin, IL

Re: Adding a baby to stage iv cancer life: Looking for real-life experiences

Postby Ehut » Fri Oct 28, 2016 2:11 pm

Congrats on being NED! My wife and I faced a similar situation after my stage IV treatment (radiation, surgery, and Folfox/Folfiri) was completed 4 years ago. I had banked a sample before treatment in case my fertility was permanently compromised, but we later decided that IVF was not for us anyway. That being said, we were advised to wait at least 2 years post treatment since studies have shown the sperm genetic quality is normal by then. However, my sperm count was extremely low for 3 years after treatment anyway, before completely springing back to normal about a year ago, and we are now expecting a baby girl in February.

For me, I would not have proceeded with having another child unless I felt reasonably certain the cancer would not return. I felt it important to remain disease free for at least 2-3 years based on recurrence statistics. Neither my wife nor I felt that she would do well raising another child on her own, so we wanted to be confident that wouldn't happen. That aspect of the decision each family has to make for themselves. We already had a daughter before my DX, which made the decision to wait easier.
Dx 12/11 rectal stage IV w/ 6 mets to liver, age 35
4 cycles FOLFOX 12/11 to 2/12
short course radiation 2/12
rectal/liver resection 3/12, temp ileostomy
8 cycles FOLFOX/FOLFIRI 4/12 to 8/12
ileostomy reversal 10/12
port out 10/13
1/17: Added daughter to family!
12/19: Added son to family!
NED for 11+ years and counting!

Canada777
Posts: 62
Joined: Mon Mar 28, 2016 6:24 pm

Re: Adding a baby to stage iv cancer life: Looking for real-life experiences

Postby Canada777 » Thu Dec 14, 2017 8:09 pm

Hi - I was hoping to revive this thread and wondering if the original poster had followed through with the surrogate or if anyone else is in a similar situation with stage iv diagnosis yet still planning to go through with starting a family? It's really hard to find blogs or stories....its seems to be a pretty rare situation to be in.
DH dx. Stage 4 Colon cancer with Peri mets Dec '15 @ age 29
12 Rounds FOLFOX & then successful HIPEC in 2016. Diagnosis changed to appendix cancer.
Recurrence to pelvis 9 months later.
Years of chemo.
At rest. Sept 2021.

karaj
Posts: 49
Joined: Mon Aug 18, 2014 10:17 pm
Location: Boston
Contact:

Re: Adding a baby to stage iv cancer life: Looking for real-life experiences

Postby karaj » Tue Dec 19, 2017 1:17 pm

Hi Canada777,

It has been a really long year wrestling with this. I was all in and my husband got to that point too. We had decided that if my January 2017 scan was NED we were going to do it, we'd even met with the fertility/surrogacy team at our hospital, but when it came down to hearing the the potential numbers from my onc, he just couldn't face it yet. Our embryos went to the "long-term" storage facility last week and it was a weepy day.

Where we are now:

We have decided to become foster parents and are moving to a new place next week so that we can accommodate siblings. We're still months away from it happening (FIL has been in the hospital for 3 mos, husband is closest caregiver) but I am excited. It took me months to make this decision though. I knew my husband would up for fostering so I didn't talk to him about it until I was really ready to. On one hand, I know it is a beautiful thing to do and when you start reading about kids who need a home, the decision should feel easy but, that other hand holds the dream of meeting these science babies that we created and it was difficult to realize that becoming foster parents doesn't mean the other won't happen, it just isn't happening right now.

I am still NED and have been since August 2016. At my last appointment, my oncologist said the most hopeful thing I could imagine, that if I'm NED at the next one (end of January) that we should talk about taking my port out. That thought and the possibility of expanding our family, albeit temporary, was enough to help me finally think of my life in more than 3 month scan intervals (kinda, some days I'm still deeply rooted in the timeline).

It has been really painful and is the greatest sacrifice this damn cancer has brought. I am sad about it almost daily. My therapist was worried about my marriage for awhile (that has since changed). When things are quiet or still, my heartbeat is a physical reminder of the one I'm not cradling to my chest. After getting too many public surprise pregnancy announcements I have made it clear to friends that I love them but they have to text me first so I can deal with my sadness privately to be genuinely thrilled for them publicly.

I could talk about this for days, feel free to message me if you'd like to connect more personally. If you haven't found this blog yet, this is a patient with managed stage iv disease who did use a surrogate: http://stilllifecreative.blogspot.com/. I haven't connected with her in a few months but did meet her daughter at a conference last spring.

Best of luck!

Kara
36 y/o female, dx at 32
8/14 dx Stage IIIC, 10/30 lymph nodes
8/14-9/14: sigmoidoscopy, fertility preservation, port-a-cath
9/14 - 3/15: FOLFOX (allergic to oxaliplatin, underwent desensitization)
4/15: NED
1/16: dx Stage IV, recurrence in three lymph nodes behind abdomen
2/16: FOLFIRI
8/16: NED
8/17: NED, currently under no treatment, scans every 3 months
http://www.karaincancerland.com

rachel2017
Posts: 33
Joined: Tue Oct 17, 2017 9:17 pm

Re: Adding a baby to stage iv cancer life: Looking for real-life experiences

Postby rachel2017 » Tue Dec 19, 2017 11:00 pm

karaj wrote:Hello,

When I was first diagnosed, my husband and I were allowed the opportunity to freeze embryos before I started treatment. We don't have children but both want a family. Four months ago a friend offered to be our surrogate. This is an incredible offer from a great friend and her husband. We didn't ask, they just offered!

I am currently NED and my oncologist has said that based on my response to treatments she expects me to continue to do well. She does not want me to try and carry a child myself because of the risk that the cancer will return while pregnant. I do know the average life-expectancy associated with stage iv colon cancer and I am all too aware of the reality. We can't help but consider both the negatives and the positives of the situation. I have spoken with my oncologist and my therapist who runs the young adult program and has been through this with patients before.

This is an incredibly difficult and emotional decision and so, we are looking for real life experiences with the hope of either connecting with the couple or even just reading about their experience. My therapist has reached out to one such couple, where the wife is the one with cancer, but they haven't responded yet (busy with their new baby, probably).

If you have added a child to your family after a stage iv diagnosis (either naturally or via surrogacy or adoption), know anyone who has, or have come across an article or blog that addresses such a decision, I would be grateful to hear from you. And while I do very much appreciate the candor and input from this board, I ask that you please don't respond to tell me why this could be a bad idea. We are going about this decision as responsibly and thoroughly as we can and, as I mentioned, I am all too aware of reality but I think it is also healthy to have hope, especially considering the new treatments in trial. We have already been seriously considering this offer for four months and would like to decide in the next two months or so because if it is going to happen then we want to put those wheels in motion and if it is not going to happen then we need to mourn the loss and move on.

Thank you!
Kara


hey, Kara, how many frozen embryo do you have? Did them passed the PGS? My friend told me her fertility doctor recommend transfer the embryo within 5 years. I am not sure is it sure or not?
DM 63. 11/16 colonoscopy (high dysplasia)
1/17 laparoscopic,6.5X4X3cm. Stage II. No chemo.
6/17 abdo pain. CEA 52. CT paracolic nodule 1.4X1.9cm
7/17 pet CT. Ascending colon 1.4X1.1cm SUV 2.4; midline scar 0.9cm SUV3.1
KRAS G12D
8/16/-9/26/17 Folfox 4 rounds
10/6/17 CT numorous perio seedings. ascending one 7cm; midline one 5.7cm.
10/16-1/5/2018 Folfox/avastin; 1/12/18 CT reviewed Slight progression
Stop chemo

Canada777
Posts: 62
Joined: Mon Mar 28, 2016 6:24 pm

Re: Adding a baby to stage iv cancer life: Looking for real-life experiences

Postby Canada777 » Wed Dec 20, 2017 9:44 pm

Hi Kara! Thanks so much for sharing. Fostering sounds like a great idea! I'd never thought of it actually. I hope you continue to stay NED and have a great experience fostering :)
DH dx. Stage 4 Colon cancer with Peri mets Dec '15 @ age 29
12 Rounds FOLFOX & then successful HIPEC in 2016. Diagnosis changed to appendix cancer.
Recurrence to pelvis 9 months later.
Years of chemo.
At rest. Sept 2021.

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: Adding a baby to stage iv cancer life: Looking for real-life experiences

Postby stu » Thu Dec 21, 2017 3:12 am

Hi Kara ,
Long may you stay NED . Fantastic news .
This world needs fantastic foster parents .
Well done you.
Love Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .


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