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Priorities: Stage IV but I want to have kids August 20, 2009

Posted by PAS in cancer, pets, survivorship.
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This is a hard post for me to write, and I’m sure for some it won’t be an easy post to read. But I hesitate to put it on a support board because any response to someone who has discovered s/he or a partner is infertile due to chemo and radiation treatments always sounds as if it’s being insensitive.

A support board discussion about infertility or preserving fertility during treatment for rectal or colon cancer usually starts something like this:

I have just been diagnosed with Stage IV rectal (or colorectal) cancer. I have mets to my (liver) (lungs) (peritoneum). I’ve been reading all of the posts about what happens after (radiation) (chemo) and my doctor didn’t tell me that I wouldn’t be able to have children! I don’t have time to save my (eggs) (sperm) because I’ve already started (radiation) (chemo). Why didn’t the doctors tell me more about this?

Often, the responses will include other peoples’ stories and experiences. But sometimes the advice (if the person hasn’t started treatment yet) to take ovary-sparing measures during radiation, bank sperm or preserve eggs to use to conceive a child when treatment is completed, etc. And reading it is heartbreaking — not because the doctor didn’t discuss infertility with the patient, but because the doctor clearly didn’t make the gravity of the Stage IV diagnosis clear to the patient.

Stage IV in any cancer is serious business — but stage IV CRC is a cage fight. Despite advances in treatment and care which are helping those of us with stage IV CRC live better and live longer, the prognosis for a stage IV diagnosis is still very grave. Most patients will be in some form of treatment for the remainder of their lives with only very short breaks. If chemo and radiation work, there’s a chance at surgical intervention which may be curative, but that option only becomes available for about 30% of the patients diagnosed in stage IV. Curative intent of surgery isn’t guaranteed.

I am a five-year Stage IV survivor of rectal cancer. The longest period I’ve been NED during these last five years has been 21 months — and six of those 21 months were spent in surgical recovery and post-op chemo, so they weren’t treatment free. I know a few five-year survivors; only a handful have been NED (no evidence of disease) for most of those five years. I know only a handful of 10-year survivors, and only one has been NED since initial treatment and diagnosis.

Now — here’s the really hard thing to say, the thing that is perceived to be insensitive when posted to a support board. If you or your partner has just been diagnosed with stage IV rectal or colon cancer, the chances of surviving for more than five years — much less ten years — and the chances of being alive and healthy and free of disease long enough to bear and raise a child are very, very small. And the difficult question to ask is, in light of that information about the gravity of the diagnosis, should having a child or preserving your fertility be any priority at all? Shouldn’t the first, and maybe the only, priority of a person with a stage IV CRC diagnosis be dealing with treatment?

More of us are living longer with CRC and treatment, yes — but five years where most of the time is spent in chemo and radiation and surgery is certainly not the best environment in which to try to bear a child. Five years, even ten years, is not long enough to raise a child — in many breeds of dogs, it’s not long enough to raise a puppy! It’s not long enough to see a kitten into old age, and birds often outlive their healthy owners!

It’s at this point in the post that, on a support board, most responses will get vehement:

  • Someone has to be in that 30% who live; why can’t it be me?
  • The doctors still should have told us that I/we couldn’t have children!
  • I’ve heard of lots of people who have children after treatment!
  • I’m going to beat this and I want the option to be a parent!

So am I saying that a stage IV patient shouldn’t have kids, shouldn’t have pets? Of course not.

However, my responses to each of those vehement protests is just one thing: what if you don’t survive? Is having a child (who will probably grow up without a parent because you are more likely to die than live) more important than living yourself?

I waited a year after being declared NED the first time before looking for a new dog — and I didn’t want a puppy, I wanted an older dog who I’d have a better chance of training and showing, who had a safety-net established for a new home in case I got sick again. And when I did have a recurrence, I was very glad that Madison and my older dog Casey have established safety nets for their care. They’re adult dogs, relatively care-free and trained to accept that sometimes I can’t function as well as I’d like. They are not babies (human or canine) who need 100% attention and care 24/7.

I knew the chances that I’d be around to raise a puppy into an adult and safely retired old dog were slim (and still are), and I didn’t want to take that responsibility…for a pet. I confess, I’m mystified that anyone with a terminal prognosis like most stage IV CRC patients would want to take on the responsibility of bearing a human child, knowing that s/he would likely not be around to raise the child to adulthood.

If you are one of the lucky ones who does experience extended survival time after a stage IV CRC diagnosis, there are many ways to parent without personally bearing your own child, or even raising a child born of your eggs or sperm. Adoption, foster parenting, simply being an active adult in the lives of children who are not your own are all options — viable options for contributing to the life of a child without creating a life you’re not going to be able to be responsible for raising. Or you can try to roll the dice, and bet that you won’t be one of the 70% of patients who don’t enjoy survival much longer than five years.

What about you? Is bearing a child so important to you that you would bring a baby into the world knowing that you had a fatal disease which would prevent you from being around to raise your child to adulthood?

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1. barrie - August 20, 2009

I’m with you and the MS boards are similar that saying that you have chosen not to have children because of your diagnosis is waving a red flag at a bull or something.

There is a VERY high risk that any child I had would have a greatly increased risk of not necessarily MS but another immunological disease such as RA or ALS and I just cannot bear the idea of inflicting that on an innocent child.

Plus, like you, my energy level is not normal and I never know when I am going to have a flare up and be unable to care for my dogs much less a child! I also have safety nets set up for my dogs in case of something horrible happening.

2. Whidbeywoman - August 20, 2009

A very brave post that raises some serious questions. Thank you.

3. rotorhead - August 22, 2009

Gaelen- A thought-provoking, balanced post. I love the internet people too; it seems one can’t start a thread without someone misreading it and getting offended. Then the fun begins. I’ve quit a number of forums for that reason alone. The religious, cultural and deep socio-psychological implications of the subject are polarizing. It is amplified when fired broadside to the diverse audience across the globe. It’s always a crap shoot-most of the folks who agree will be silent; the dissenters may respond without getting the real message. There are subjects which, to myself, are not issues at all (body image, sex, etc) that to other people are just devastating. We can just keep trying, but it is not possible to broach a subject such as this without bruising egos. You know there are subjects which we’ve disagreed on in the past-but we keep it civil and respect others’ opinions, and hopefully in the end some good comes of it.

THANK YOU for mentioning the alternatives of fostering and adopting – so many of our friends who are having difficulties conceiving (“normal” people) won’t even consider that option, which I have a hard time understanding.


gaelenscafe - August 23, 2009

Thanks, everyone, for ‘getting’ this message — as RH said, most of the people on support forums who respond as if they’re insulted don’t take the time to think it through before firing off their outrage that anyone would suggest maybe getting pregnant isn’t a Stage IV patient’s first priority.
I did actually try another tack on a support board — I approached it from whether it’s ethical for a doc to bring up fertility preservation to a Stage IV patient. So far, no flames. Maybe some folks are taking time to think before hitting ‘send.’
RH, adoption and fostering children, and being an active adult in the lives of kids around me are actions close to my heart. If I am ever in a position to adopt or foster, I will. Meanwhile, being an active adult in children’s lives gives me a chance to have many meaningful relationships with kids, some who I can see to young adulthood. I couldn’t imagine NOT considering those opportunities to make a difference in the life of a child!

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