Should I get pregnant with a Glioma?
Updated: Apr 3, 2019
Let's start by saying it is a HUGE risk!! A risk to you, your babies and your entire future health. Is it possible? Yes. Would a high risk pregnancy doctor advise it? Hopefully NO and mine at UCLA definitely did not and broke down the risks I would expect to have. There is a serious lack of evidence out there on how to proceed with pregnancy after brain cancer and none of my doctors have been able to give me a solid answer as to whether or not with my tumor, an AA3 I should get pregnant and if I did, what the risks would be. At first I was told yes it would probably be ok but they still didnt have enough hard evidence to advise me not to……SCARY! So I knew I had to research and find out for myself. I have read success stories but then I have also read horror stories. It seemed almost impossible to find the answer I have been searching for and FINALLY we got it this past week from an amazing high risk OBGYN Dr. Ngyuen at UCLA. I feel this blog is SOOO necessary and I hope it can be helpful for many out there searching for the questions I was so desperately looking for.
If you read my other blog on preparing for the future with a brain tumor then you will already know my husband Philip and I froze our embryos this past December before my surgery in January. We had successful results that ended with 8 healthy embryos now frozen at the Pacific Reproductive Center. You may have also read that because of many things from the surgery/tumor but mainly the IVF and high dose of hormones I got a blood clot in the back of my brain. This has been an issue and I deep down knew that hormones may have also contributed to my tumor growing back so quickly.
Now, I get everyone is different, has different tumor types and everyone will take what they want from this and how badly the need of bearing your own child really is but I want to be around for my children's lives and remain healthy and with my tumor and history that seems to be a real risk! Read below and then you can go from there and of course this is just based on me, my tumor and health. I would for sure make an appt with a high risk OBGYN that works with brain tumor patients and can really answer every question you have. This is not something to experiment with, it could happen and be too late.
Side effects of getting pregnant
On a scale of 1-10 I would be considered an 8 for how risky this pregnancy would be so an 80% RISK of SERIOUS complications to my health during pregnancy.
Because of the hormones the risks involved would be:
-My blood clot never going away and most likely getting more clots so would have to take twice a day Enoxoparin shots in my stomach for 1.5 years at least and until I could switch to a pill form and would have to stay on them for life. If you aren't like me and already have a blood clot the risk to develop one is high.
-Tumor regrowth (my worst nightmare) which could turn it a more aggressive growing tumor. I have gone through ALL this so far and then to think I get pregnant and would be so happy and then find out the tumor has begun to grow back!!!!!!!! NO WAY!
-Vision problems and possible blindness in my right eye from tumor
-Right ear problems from tumor growth
-Strokes from blood clots
-Inflammation build up in my brain causing neurological problems and damage
-Constant seizures from hormone imbalance
-Fluid build up in my brain so I would need the fluid to be drained frequently
-Constant headaches which could mean tumor is growing or would require immediate doctor attention to check and make sure it is all okay
-Any symptoms that arise I would need to go straight to the hospital to make sure tumor is not growing and would need constant scans
-So basically seems like if I wanted to do this I would need to move into UCLA for a year
What really made my mouth drop was while in the room with the doctor she told me that morning a woman my age and same tumor family (Glioma) was being rushed into surgery at 27 weeks pregnant because the tumor was growing so aggressive she couldn’t wait to have it removed. The potential is so risky that it could lead to having to choose between me or the baby depending on what happens and that is my WORST nightmare. Dr. also mentioned she has seen this happen way more times then she would like.
Termination of pregnancy if any signs or symptoms arise and if the tumor starts to grow it could be fatal.
It would be a LONG, stressful and painful year, future and I am sure not willing to take that risk.
My doctors advice: Do not get pregnant unless I am 100% willing to take the risks and complications that WILL arise and NO I am not. For more info and stories of women that did get pregnant check out http://astrocytomaoptions.com/pregnancy-and-gliomas/
Thank God we froze our embryos and were so successful we have 8 healthy ones waiting for us!! We will find a way and the way will have to be through surrogacy. I never thought I would need a surrogate, I was young, healthy and fertile. Ready to start a family with my husband and be the Mom I have always wanted to be. But then again I never thought I would have brain cancer. You can’t determine the future or look back and stress over the What ifs. It is too late and now it is what it is. Philip and I want so badly to be parents and it WILL happen. We have accepted this is the reality and how we will start our family and that is OK. We are thankful this is even an option and once again fortunate we were able to go through with the IVF and have such success.
If I could wish for 2 things in my life it would be children and to be cancer free. Did I ever imagine these would be my 2 wishes in life at 32?? Absolutely not. BUT I WILL MAKE THEM BOTH HAPPEN!!!! I also look back and feel upset how I took a lot for granted and didn’t appreciate maybe as much as I should have. All these material things I wanted so bad and for what??? But I always found a way and this new bump in the road, I WILL find a way. It is what it is and I will do everything I can to make them happen. Can both happen? Absolutely. Will they? Absolutely. Why can’t they? If I didn’t think they could then I would most likely not be sharing all this with the world. I share to create awareness that this is REAL. That this can happen to anyone. Infertility is real and even more real when it comes to cancer. And if it does you know you will and can get through it all just like I am doing. Now time to find a surrogate! And because we only want to do this once we are going for twins!!!!!! :) XOXO