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Conceiving After Cancer

Sep08

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Advice Smackdown ArchivesHi Amy,

Since I love your blog and think that you give such wonderful advice that really looks at things from all angles, I thought I’d write and ask for your input…if you decide to print this, feel free to edit and take out as much as you see fit. Also, I am really sorry if this is TMI or grosses you out, I just don’t know who else to ask, as everyone that I would be comfortable asking is Fertile Myrtle.

I am 30 years old and a childhood cancer survivor, off therapy for 24 years next week. I had Wilms’ Tumor, which is a kidney cancer, so I am missing my left kidney. Six months after I completed treatment, I relapsed in my lower bowel, that time they were able to remove the just the tumor. I am in really good health otherwise, and consider myself so lucky that this is really the first late effect I have ever had to deal with. I am a normal weight for my height and never had to deal with learning disabilities that a lot of childhood cancer survivors, especially survivors that have a reoccurrence. Almost two years ago, a pediatric endocrinologist that heads up a long term survivorship program scared the BEH-JEEZUS out of me at our initial (and only…It was a transitional appointment and I have since transferred over to an Adult Long Term Survivorship Program) appointment and told me that I needed to start trying to get pregnant yesterday. My husband and I immediately started trying, and here we are 20 months later and we’re not pregnant.

A year ago, we met with a reproductive endocrinologist and everything was within the normal range, my FSH, LH, my ovaries were both developed the way that they were supposed to be (which really surprised everyone), my uterus looked good, my cycles are very regular and his sperm count was normal and had normal motility. Since everything was normal, my husband and I decided to give it another year on our own. We’ve tried everything that we can without going back to the doctor, OPKs, “not trying”, etc. *I* think that I have a hostile environment due to the fact that there is never any egg white CM.

So, in this past year I have taken it upon myself to see a cardiologist, oncologist, and nephrologist and get their okays for getting pregnant and carrying a baby to term. All of them are totally on board. Since I have everyone’s okay and my husband has recently caught TEH BABEH FEVER, we’ve made another appointment with the reproductive endocrinologists. I am kind of terrified at the idea of using clomid, but not opposed to it either, but sort of don’t see the point of going on it without doing something like IUI or doing something like IUI without the clomid.

Am I getting way ahead of myself? What questions should we ask that may not be thinking about? What are some things that you wish you had known when you went to see fertility specialist?

I would really appreciate insight you might be able to give!

Hayley

On the contrary, I don’t think you’re getting ahead of yourself at all. Despite getting the “all-clear” from all your doctors, I think going with a reproductive endocrinologist is the best choice for you, or for anyone who has ANY inkling or reason to believe that their ability to conceive and carry a child might be in any way considered different or high-risk. I’m not saying your (eventual) pregnancy will be high-risk — it sounds incredibly likely that you’ll be JUST FINE — but hey, your body has been though a lot. More than most. I don’t see any reason why you should take on an ounce more risk than necessary, be it with your trying-to-conceive timeframe or with the pregnancy itself.

That said, you’ve been scared and rattled in the past, but I want you to take a deep breath and look at your soon-to-be-RE as not just another figure in a white coat who is going to poke and prod and give you bad news. This person is going to be your partner in Making This Happen. And believe me, you are NOT going to be the first couple he or she has seen with perfect “everything” (FSH, LH, cycles, sperm count) that are still struggling to get pregnant. Chances are you won’t even be the first couple he or she sees THAT DAY in the same boat. There’s a reason so many of women end up in the large, fuzzy, frustrating category of “unexplained.”

I don’t know what your doctor will recommend. I don’t know if he or she will suggest waiting or more temperature charting (just to determine if the lack of CM means your regular cycles are still, in fact, annovulatory), or if he or she will be immediately more gung-ho on the interventions like Clomid or an IUI. You should know that medicated IUIs have a MUCH higher rate of multiples, which I imagine might not be recommended for you. (Kate Gosselin is perhaps the most famous face of an over-responsive medicated IUI cycle — she did not do IVF.) That’s why many women start with Clomid without an IUI at first, though I would insist that your cycle and follicle count be monitored at the clinic all month either way. This can be frustrating if you produce TOO MANY eggs and your cycle gets canceled, but it’s safer than plodding ahead and getting high-order multiples. (My doctor essentially sent me home with a Clomid prescription and a calendar. I didn’t get pregnant. I also didn’t end up with quadruplets. So…yay?)

But again, your course of action is something you and your RE should plan together. You know your medical history and probably have a good sense for when doctors are a good “fit” for you or if you should thank them for their time and find someone else. You are not at all being hysterical by looking at your stack of all-clears and “perfect” results and still saying, “My circumstances are special. Bring on the experts because I’m not messing around.” You have the right to listen to your doctor’s options and to ask a zillion tough questions about them (success rate? risk of multiples? could I carry a twin/triplet pregnancy or would reduction be recommended? side effects of medication? how much monitoring? what else could a lack of CM indicate? if X procedure doesn’t work, would we move on to Y or Z?).

And I think you know all this — I think you know more about your health and the world of infertility than your anxiety about it all is letting you take credit for. You’ve kicked cancer’s ass, for crying out loud. Infertility has NOTHING on you, lady. I wish you nothing but the best of luck at your appointment and a speedy, non-invasive-as-possible, completely healthy pregnancy.

About the author

Amalah

http://www.amalah.com
Amalah is a pseudonym of Amy Corbett Storch. She is the author of the Advice Smackdown and Bounce Back. You can follow Amy's daily mothering adventures at Amalah. Also, it's pronounced AIM-ah-lah.

If there is a question you would like answered on the Advice Smackdown, please submit it to amyadvice@gmail.com.

Amy also documented her second pregnancy (with Ezra) in our wildly popular Weekly Pregnancy Calendar, Zero to Forty.

Amy is mother to rising first-grader Noah, preschooler Ezra, and toddler Ike.


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17 Responses to “Conceiving After Cancer”

  1. DK Sep 08 at 4:27 pm Reply Reply

    Completely not my realm of kicking in ‘advice’ across the interwebs. Just want to send along my good thoughts and best of luck!

  2. Hi, I'm Natalie. Sep 08 at 7:58 pm Reply Reply

    *cough*TakingChargeOfYourFertilityBook*cough*

    It sounds like you’re doing a great job of getting things going – Best of luck!

  3. EW Sep 08 at 8:08 pm Reply Reply

    Just one note — Clomid raises your chances of twins (around 10% of Clomid pregancies are twins) but doesn’t lead to a high rate of high order multiples.  Same thing for Femara/letrizole, which is your other pill option.

    IUI with injectibles can lead to high multiple rates, and yeah, there you absolutely need a lot of monitoring.  Even with Clomid or Femara, a good RE will be doing plenty of monitoring.  I typically saw the RE on day 3 and again on day 12 (a couple of days before I got a trigger shot to make sure ovulation was happening).  Then bloodwork on day 28 or when my period started, to make sure I wasn’t pregnant before the next cycle.

    Agree with Amalah — you want to be as comfortable as possible with your RE!

  4. Laura Sep 08 at 8:12 pm Reply Reply

    Seconding Natalie’s vote for the book Taking Charge of Your Fertility!

  5. Kati Sep 08 at 8:40 pm Reply Reply

    I’m coming from a very similar back ground (20+ year childhood cancer survivor). I was also told that we would have a hard time conceiving. Remember that your case is very different from the average person with infertility. There is still a lot of research to be done on what exactly our treatment has done to our bodies. We also received much higher doses of chemo than what is currently used.
    Be up front with your RE and be specific of your fears. Try to find one that has worked with childhood cancer survivors. Sometimes they can help you out with the cost of treatment and can also give you a more direct line of treatment.
    I used FertilityFriend.com for tracking and found it very user friendly and helpful.
    When you do get pregnant keep up with your cardiologist and oncologist. Even if you have no problems now you could develop them. I developed them during my second trimester after having years of clear echos.
    I wish you tons of luck!

  6. Mary Sep 08 at 9:36 pm Reply Reply

    You say you don’t think you have good CM…what have you done about that? Are you eating carrots every day? Taking Robitussin? I know you are really anxious to conceive, but if you have an idea of what your problem might be, and there are simple solutions to that problem, it makes sense to try those first. It will save you lots of money for sure, but it might save you time in the long run too! I third “Taking Charge of Your Fertility.” Also check out “Fertility, Cycles and Nutrition” by Marilyn Shannon.

    Good luck!

  7. Sharon Sep 09 at 9:42 am Reply Reply

    One thing that I have anecdotal evidence (i.e., 2 wonderful boys) that helps with no eggwhite CM is the lubricant PreSeed…. don’t even know if they still make it, but if so, check it out. As a bonus… it’s a really nice lube!  If it weren’t so expensive, I might buy it for all the time, instead of just the I-want-a-baby times!

  8. Hayley Sep 09 at 1:02 pm Reply Reply

    Thank you guys for all of your positive feedback…We have done TCOYF. That was the first book I bought when we started trying. I did my temps and charting for about a month. We’ve been using preseed for about a year and a half. I’ve also done robitussin and mucinex for the cm. If I could try it at home, believe me, I did. Thank you again guys…Our appointment is Monday. I will be sure and let everyone know what happens.

  9. Rebecca Sep 09 at 1:14 pm Reply Reply

    I’m not a cancer survivor, but I did suffer infertility that fell in the unexplained category. Just wanted to concur that Clomid on its own only increases your chance of twins to 10% and is less than that for triplets or higher. I did Clomid with IUI (monitored cycle) and had a singleton. Did it again and had twins. I am the daughter of another case of unexplained infertility and for my mom all that was needed was a single round of Clomid. I’m only adding that to say that in some cases, there really is no need for the IUI.

    I don’t think IUI with Clomid is as risky as it sounds in terms of higher order multiples IF you have a good RE and follow his advice re: cancelling an IUI. I wish you the best of luck whatever course of action you, your husband, and your doctors decide is best.

  10. Alex Sep 09 at 1:22 pm Reply Reply

    Hey- just wanted to pitch in a comment as I work for the NCI and talk to many many childhood cancer survivors that have similar concerns. You are doing a great job getting yourself informed, using your health care team, and preparing any questions you may need to have. Here are a couple other resources that may be helpful. They may be oriented more towards more survivors that have dealt with treatment more recently than in your case.
    Best of luck!

    MyOncofertility.org
    (1-866-708-3378 (1-866-708-FERT))

    http://www.fertilehope.org/index.cfm

  11. Nancy Sep 09 at 9:12 pm Reply Reply

    I recommend Preseed too — it can’t hurt, might help. I liked it a lot better than eating raw garlic or taking Robitussin to try to help facilitate things. FWIW, it took less than one box for us — we have our lovely twin girls (now 3 years old). No history of health issues for us, and no history of twins either. Just very blessed – and I’m convinced Preseed helped. We TTC and I charted for 9 months total… had one very early miscarriage about halfway through that, then ended up with our girls. Good luck!

  12. Alex Sep 10 at 10:34 am Reply Reply

    Oop- one more thing, an interesting article! Hope it helps, at least with perspective. Take care.

    http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/1482/

  13. Julie Sep 10 at 10:40 am Reply Reply

    Good luck!

    You may have already done this, but I tend to think it falls into the “can’t hurt, might help” category. There’s a book called “The Fertility Diet” that I found helpful. It looks at the results of a like 20 year nurse story and connections between diet and fertility. Most of it is common sense stuff like “eat lots of veggies and whole grains” but some are more surprising, like “drink whole milk instead of lowfat.”

    It will only really help if you have certain causes of infertility, but since it’s a pretty healthy diet, I figure it can’t hurt to follow when you’re trying to get pregnant.

  14. cheken Sep 10 at 10:38 pm Reply Reply

    Oh! Oh! I know this one! Well, not the cancer part, but the going into the whole having a baby thing guns a-blazing into various specialists before conception. My first stop was my regular ob/gyn, who deals with a lot of high-risk cases. After that, it was my gastroenterologist and then my rheumatologist. After I got the all clear all testing from each of them, I had a consult with a perinatologist (before getting pregnant, or knowing I was pregnant, as it turned out). They were unwilling to treat me, so I got a referral to different one. I wasn’t technically high-risk really going into it, I had a complicated medical history with borderline clotting disorder and Crohn’s Disease, but they were circumstances that could make things go south. But, crazy as I might have looked, I lined up the medical team ahead of time, made sure they were all communicating with eachother, and went along procreating. As it turns out, it’s a good thing I did it that way, because my body reacted weirdly to pregnancy and since they knew about my history, I was taken seriously where any other first time mom wouldn’t. And it saved my life. So in short, no, you aren’t nuts. It’s better to be the paranoid patient and have everything be ok, than to be very relaxed and have it be not ok.

  15. Bonnie Sep 11 at 3:54 am Reply Reply

    I have nothing helpful to add. I just wanted to wish you luck! :)

  16. Nerwal Sep 11 at 11:26 pm Reply Reply

    As someone who went through infertility in order to have babies, I suggest asking for more testing. A lot of doctors won’t do them right away, but I hope that given your past medical history they will for you. You may have to pay for them, but IMO its better to pay for them now than after expensive procedures and heartache. 

    Don’t worry about the Clomid; make sure you have a responsible doctor who will monitor you in case you do produce a ton of mature eggs.

    Good luck!

  17. Hayley Sep 13 at 4:51 pm Reply Reply

    We have a plan…I’ll let ya’ll know what happens when it happens!

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