Thanks to Adventure Nannies for sharing my story on their blog & helping to spread the word about pregnancy after mastectomy, BRCA related infertility, and BRCA education! Check out the article here.
I’m excited and honored to be speaking in a panel discussion at BinderCon LA today! The topic is “Self-Care, wellness and social media: How health writing is changing in the current climate”. If you happen to be at BinderCon, please stop by! Details are here.
I’ve had unexpected BRCA drama in the past few years. A lot of issues are because of my melanoma risk related to being BRCA2+. Even though my mom is BRCA2+ and had malignant melanoma in 2008, I didn’t think the melanoma risk associated with being BRCA+ would impact me so much. Maybe it’s because BRCA is known as the “breast and ovarian cancer gene.” Maybe since mastectomies and oophorectomies seem like such radical prophylactic surgeries, other BRCA associated cancers are swept under the rug, especially with media coverage. Angelina Jolie having an atypical mole definitely isn’t as headline grabbing as Angelina Jolie prophylactically removing her reproductive organs and breasts. I’d definitely rethink my guilty pleasure subscription to US Magazine if the cover story was about weird looking moles.
So, I went to the dermatologist for my annual skin checks, wore sunscreen – and thought
that would be the extent of it. Actually, that was the extent of it, until Nov. 2015, when I had moles biopsied that turned out to be pre-melanoma. I ended up having both moles removed through a process called a skin excision. Since 2015, I’ve had 6 biopsies and 5 of them turned out to be pre-melanoma, requiring excisions. The excision is required because of my BRCA mutation and making sure they get all of the borders. The good news is – being proactive and knowing I’m at high risk has led to me discovering all of these when they were pre-melanoma and not melanoma. The bad news is – the procedures and recovery are not very fun, and I’m collecting a cool Frankestein-ish collection of scars.
Of all the excisions, the scariest was the most recent, because I’m pregnant. Even though mole changes are common during pregnancy, I’m super lucky to have an amazing OB who noticed the atypical mole during my first exam with her. She urged me to keep an eye on it because of my BRCA mutation, so I followed up with my dermatologist and she agreed that it was suspicious looking, and biopsied it. It turned out to be pre-melanoma and I had to have a pretty gnarly excision because of the weird location of the mole (inner thigh/butt are), and only wanting to take tylenol because of the pregnancy. Also, having an excision that is a literal pain in the a$$ isn’t helped when you have to get up and pee every hour because you’re pregnant. It was also the scariest time waiting for results because I was completely freaked about what would happen if it was melanoma and the risk of it spreading to the fetus. Thankfully, they caught everything in time. I also was referred to a specialist who I’m seeing more frequently throughout pregnancy to take pictures and measurements of all my moles, to make sure any changes are just pregnancy related, and nothing suspicious. I just had my last prenatal mole check with that specialist and everything looked a-ok!
So, make sure to get your moles checked out! Know your ABCDE‘s, see a dermatologist, and wear sunscreen. Here’s a helpful video about self skin checks.
Women who have had double mastectomies aren’t able to breastfeed afterwards. This was the one part of the decision to have a prophylactic mastectomy that made me question whether or not I should do it – because of all the breastfeeding benefits for both baby and mom. In the end, I’m very happy with the decision I made, even though it means I won’t be able to breastfeed. My particular BRCA mutation (BRCA2) is known to activate during pregnancy, so the benefit of having a mastecomy before pregnancy definitely outweighed the risk for me, but it was still a tough choice. The melanoma part of my BRCA2 mutation has acted up during pregnancy (don’t worry, everything is ok), which has made me even more relieved I chose to have my ticking time bomb boobies removed and replaced with my lovely foobies before getting pregnant. I’m going to be writing separate posts soon about pregnancy and BRCA (including the pre-melanoma pregnancy drama).
In my last post, I talked about how it’s been difficult for me to find info about being pregnant after having a mastectomy. With everything available online, it’s been frustrating trying to find out if things I’ve been experiencing are mastectomy related or not. I’m hoping to blog about everything I find out, so that other women with similar questions have a resource.
Weeks 1-13 (First Trimester)
Very early on in the pregnancy (probably weeks 5-6), I had really weird pains in my back like I’d never felt before. I got permission from my IVF doctor to see a perinatal chiropractor, which helped a lot. He explained to me that my pain was actually referred pain from the chest. Basically, because I had a mastectomy, my nerves were sending sensations to my back instead of breast pain.
Around that same time, I had weird lightning like sensations that felt like they were from my nipples. I hadn’t had any sensations in my nipples since the mastectomy, so I think pregnancy activated something. Also, areas where there was a bit of breast tissue left like underneath the incision and under my arms were tender. If you’re curious how I still have nipples after a mastectomy, check that out here.
Starting around week 18, I’ve noticed some swelling where there must be a small amount of breast tissue remaining. The areas under the incisions and under my arms are a bit swollen. Other than those areas, my breasts/nipples haven’t changed at all during pregnancy.
Around week 20, I had some strange/annoying phantom pain in the areas where I had drains after my mastectomy. Luckily that phantom drain sensation only lasted a few days bc I never wanna deal with that effing drain pain again!
Recently (weeks 20-22), my back has been generally hurting a lot and I have that weird back pain again. The general back pain is par for the course with being pregnant and carrying around a big basketball tummy (plus my expanding hips and bootylicious butt – I don’t think my back was ready for this jelly), but that same weird pain I had early on is related to the mastectomy again. Once again, my chiropractor has helped me a lot, along with starting to do prenatal stretches (thanks to my hubby for suggesting this over to my stubborn self over and over until I finally listened).
Second trimester is also when we started the baby registry and the reality of not being able to breastfeed has kicked in a bit more, which has been a bit tough. I told the woman helping me with my registry that I’m not able to breastfeed, and she was super helpful in pointing out nursing items I could register for meant for bottle/formula feeding, and not making me feel judged for not breastfeeding. My friend, Elana, who was with me, also helped make me excited about the cool bottle feeding items we found. In addition to my friend Elana, I want to give a special shoutout to Maddy at Buy Buy Baby in Encinitas, CA for helping this part of registering (that I was a bit worried about) actually be really fun instead of a downer.
I hope this list is helpful! I’m going to be continuing blog about pregnancy after mastectomy throughout the rest of my pregnancy (126 days, but who’s counting), and beyond.
I’m so happy to be able to share this wonderful news, especially after my last post, which was kind of a downer. Adam and I can’t express how much we appreciate all of the support and outreach after I shared our fertility struggles.
I’m 17 weeks pregnant with our baby girl, and feeling a lot better than I did in the first trimester (feeling hungover 24/7 is not fun). Of course, my BRCA mutation has caused a bit of drama during the pregnancy – but I’ve stayed on top of it.
During pregnancy, I’ve found a lack of information online about pregnancy after a mastectomy, so I’m excited to blog about it! So stay tuned for more posts about being pregnant and BRCA+.
The last 8 months have been pretty tough, so I decided to spill my guts in a Medium piece. When searching online for answers about BRCA related infertility, and having a miscarriage – there wasn’t as much as I’d expected. Hopefully this piece will contribute to these heartbreaking subjects – because I don’t think it’s right that there is still shame and a certain taboo associated with them. Thanks for reading.
Thanks for the patience while I re-did the Funky Genes site… and everyone who emailed me while the site was down for info. The question I was asked most while the site was down was for the mastectomy checklist! It’s right here on the new site.
I’ll be back blogging about adventures in BRCA land soon, but first – wanted to do a “beta test” that I learned about from one of my fave shows, Silicon Valley. Please check out the new site and comment or email me if you catch any bugs or have any suggestions for new content/changes. Hope you all enjoy!