In honor of National Infertility Awareness week, check out my Medium piece about “flipping the script” on infertility. Hopefully someone reading it won’t feel alone anymore in their infertility struggles.
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’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.
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.
Last summer, I let you know that I was becoming an Oncology Nurse. I started in August, and was on the solid tumor oncology floor for 6 months. I learned a lot and had experiences with patients that I’ll always remember, but I realized that working in oncology was too close to home for me. My BRCA mutation and family history of cancer was what originally drew me to oncology, but working in it in real life, especially the end of life process, was emotionally difficult. Luckily, I worked in an environment where I felt comfortable enough to share my concerns with my managers, who were very supportive. I was very open with them during the interview process about my BRCA mutation and family history, and they totally understood why I was having a difficult time.
I got extremely lucky to be able to transfer within the same hospital to my other nursing passion, and become a Perinatal Nurse. I’m now working in the Postpartum unit and I’ll eventually cross-train in Labor & Delivery. I feel like I’ve found my calling in nursing. I love all of the patient education in perinatal nursing, and being a part of such an important milestone in my patients’ lives. I’m still going to be very involved with cancer prevention and my work in the BRCA community, and I’ll keep you all posted on my ongoing BRCA journey.
I just realized I forgot to post an update about my second skin excision. I got the same great pathology results from excision numero dos – both were pre-melanoma and had not mutated into skin cancer yet. I feel very lucky and happy to have a great medical team and supportive hubby who reminds me to get skin checks.
The mole excision that I had went well – the pathology results came back and it was pre-melanoma. This is great news because it means I caught it early, and that it isn’t skin cancer! I have one more excision next week, so hopefully I get the same good pathology results from that one. I’ll keep everyone posted!
When I last wrote, I was waiting for the pathology results from the two skin biopsies I had because of 2 suspicious looking moles (I have an increased risk for melanoma because of my BRCA2 mutation and my mom’s history of melanoma). The results came back and both moles were severely atypical/pre-melanoma. I was very relieved they weren’t melanoma, but a bit surprised that both of them were pre-melanoma. My dermatologist explained they would both have to be excised (removed) in two separate procedures.
I had the first excision this morning, which was the site on my left hip. When the surgeon showed me the area he was going to remove – it was a bigger are than I had expected – but he explained that if the pathology comes back as melanoma (which is very unlikely) – they will have excised enough that I don’t have to get anything additional removed. That was a relief to me! Also, I made sure antibiotics were being prescribed (they were) because my breast surgeon had told me any time I have any procedure – even a dental procedure – I need to be on antibiotics. After a mastectomy, the highest reason for capsular contracture is infection.
The surgeon put on some relaxing music and began numbing me with burning needles aka lidocaine – if any of you have experienced the burn of lidocaine, you understand what I’m talking about. The actual excision wasn’t bad bc of the magic numbing lidocaine – but it did feel really strange to feel the pressure and pulling of all the stitches – but not be in pain. I actually felt a bit queasy because of how odd the sensation was.
He finished up and Adam (right by my side as always – best hubby ever) took a picture to show me, and I was really impressed with how good it looked. This mole was right below a huge ass star tattoo that I have (yay first year of college on Haight St in San Francisco), and I was thinking a huge corner chunk of the star would be gone, but the surgeon removed it in a way that now it just kinda looks like one of the edges is crooked – or as Adam says, “looks like a star fish.” I have a bunch of stitches – 2 layers of them – but it is the internal kind so it doesn’t look bad at all. I’m actually really lucky that the mole was below the tattoo so I was able to see it. So if you have tattoos, make sure to take a close look for moles underneath and get annual skin checks at the dermatologist.
It’s gonna be sore while I’m healing since it is in a spot that moves a lot whenever I move up and down – so I’m taking it easy per the doctor’s orders, and switching off between binge watching Dash Dolls while taking pain killers. Adam’s literally a saint for enduring hours of this show.
I’ll keep everyone posted about the pathology results and when I get the next site removed. Here are pictures of the before and after, so click if you wanna see! The pic on the left is the marker site of what they were going to remove (the red stuff is iodine, not blood) and the right is the final result w my starfish 🙂
I’m all about advocacy, and knowledge being power, but lately – I haven’t done the best job of taking my own advice when it comes to my risk for skin cancer. Even though breast and ovarian cancer are the two biggies when it comes to BRCA risks, there are other cancer risks that come with the BRCA mutation as well. Specifically, there is an increased skin cancer risk with the BRCA2 mutation, which is the one I have.
My mom (also a BRCA2 carrier), was diagnosed with malignant melanoma in 2008 (it’s now gone, woohoo), which also makes my melanoma risk higher. I’m usually good about going to the dermatologist for skin and ocular melanoma checks every 6-12 months, which is the recommendation for BRCA2 carriers. I wear face and body sunscreen every day, and makeup containing SPF. I basically stalked Sephora and Shiseido when my favorite foundation suddenly lost its SPF factor on the label (still figuring out that mystery).
The last time I went in for a skin check was over a year ago, in July 2014, before my prophylactic mastectomy. Between mastectomy complications, recovery, reconstructive surgery, finishing nursing school and becoming a nurse – I didn’t practice what I preached – I went over a year without going to the dermatologist. Luckily, my observant hubby noticed a mole that suddenly looked different. He urged me to see the dermatologist and I kept saying “I will, I will. As soon as [insert excuse here] is finished I’ll make an appointment.” I kept delaying making an appointment and he kept asking me to make one. He even ratted me out to my mom who also got on the bandwagon. Flash forward to a few weeks ago, when I went to a 2 day oncology nursing course. We had a section on skin cancer and that put me in check to make a dermatologist appointment.
I had my appointment yesterday and my dermatologist asked if there was anything of concern to me, and I pointed out the mole. To give you some context, the dermatology office has bookmarks they give out that have the ABCDE‘s of melanoma, and my mole definitely fit most of the categories. My dermatologist agreed that she was concerned about the mole, and biopsied it, along with one on my back that she’s not as concerned about. I liked the doctor a lot, she’s a straight shooter and gave me all the information I needed, in case the mole is melanoma. So now I’m a bit sore from the biopsies, and a bit freaked out waiting for my results – which take 10 days to get back. I’m trying to think positive, because the results could totally come back that everything is a-ok, but it could also be melanoma, so I’m just hoping for the best but being realistic about all the possibilities.
If it’s melanoma, I most likely caught it early enough (knock on wood) that all they’d need to do is an excision to remove it, and that’s it. Of course that specific treatment doesn’t always remove everything, so testing/procedures could be necessary. Inpatient, quick, and pretty easy. So, as a reminder to all my readers, make sure to go to all your doctor’s appointments!
If you have a BRCA2 mutation or family history of skin cancer, get those annual skin checks. If you notice a mole that changes or fits the ABCDE criteria, get it checked out!
Please send good vibes about the biopsy results and I’ll keep everyone posted as soon as I hear back!