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.
Category: BRCA education
Pregnancy After Mastectomy: Weeks 5-21
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.
Can’t Catch a 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.
National Previvor Day
Today is National Previvor Day! The CDC defines a previvor as “someone at increased risk for developing cancer, but who has not yet developed it.” I’m a proud previvor because of my BRCA2 mutation. Even though I decided to have a prophylactic mastectomy, that’s my personal choice and it’s not the right choice for everyone. Knowledge is power and getting tested for the BRCA mutation doesn’t mean that you need to have surgery if you test positive. Surveillance is just as important and strict surveillance is a great choice too. If you have any red flags that indicate a possible BRCA or any other hereditary cancer mutation, please consider getting a genetic test.
- Check out 8 red flags that might indicate a possible BRCA mutation here
- You can also take Pink Lotus Breast Center’s quiz to find out your hereditary cancer risk here
- If you want to get tested for the BRCA/hereditary cancer mutation, you can find a genetic counselor here
Hereditary Breast and Ovarian Cancer Week
Today marks the start of National Hereditary Breast and Ovarian Cancer (HBOC) Week. If you think you may be at risk for HBOC, FORCE has a great FAQ resource page here to help you get started.
As I’ve said before, testing positive for a BRCA mutation does not mean you need to have surgery. It does not mean you will get cancer. It does mean that you can receive annual screenings that will be covered by insurance and could save your life.
Below, check red flags that you may be a BRCA carrier. If these red flags sound familiar to you, please consider speaking with a geneticist about getting a BRCA test. It is a simple saliva swab test and the results can empower you to get the screenings you need to prevent cancer.
8 RED FLAGS THAT INDICATE A POSSIBLE BRCA MUTATION
(via Pink Lotus Breast Center)
1 – 1st, 2nd, or 3rd degree relatives – from maternal or paternal sides – with breast cancer before age 50 or ovarian cancer at any age;
2- Ashkenazi Jewish heritage (Ashkenazis are Eastern European Jewish from Germany, Poland, Lithuania, Ukraine and Russia, as opposed to the Sephardic Jewish population primarily from Spain, parts of France, Italy, and North Africa);
3- Any male relative with breast cancer;
4- Any relative who is a known BRCA mutation carrier (the child of a carrier has a 50% chance of inheriting the mutation);
5- Breast cancer in self prior to age 50;
6- Two breast cancers in self, any age;
7- “Triple negative” breast cancer in self;
8- Two or more family members with breast, ovarian, pancreas, prostate, melanoma, uterine, colon, and stomach cancers (this flag also captures possible non-BRCA inherited genetic mutations associated with breast or ovarian cancer).
I know I talk a lot about breast cancer, but ovarian cancer is really what started me on this journey. Ovarian cancer took the life of my beloved grandmother. Unfortunately, ovarian cancer does not receive the type of attention it should, and its symptoms are not often shared. Today marks a very important day, as the US Senate passed a resolution to officially make September Ovarian Cancer Awareness month. Hopefully this will bring more attention to the deadly disease (the deadliest of all gynecological cancers). Teal is also the color for ovarian cancer awareness, so remember to wear teal this September!
To find out about ovarian cancer symptoms, click here
To learn about risk factors for ovarian cancer (including the BRCA genetic mutation and Lynch Syndrome), click here
To learn about reducing your ovarian cancer risk, click here
T-Minus 1 Month
Today is one month until my mastectomy on August 26th (AKA ticking time bomb breasts removal). It’s crazy that I found out about my BRCA mutation in 2007, made the decision to have a preventative mastectomy this December, and started Funky Genes in May. The time has flown by and I honestly can’t believe the surgery is coming up so soon. Luckily, I feel really prepared and have the next month to finalize everything I need during recovery.
Am I scared? Yep. Am I still 100% confident in my decision? Absolutely. My support network and the people I’ve reached through my decision to go public with this journey have been incredible. I’ve had tons of friends and family offer their support, and I’ve even had some reach out to me about getting the BRCA genetic test themselves. I’ve even had people I don’t know reach out to me because they had questions about BRCA and found my blog online.
So, on the one month countdown to my mastectomy, here’s a reminder why considering genetic testing is important.
Talking to my Peeps
I’ve been talking to a lot of people I’ve met through the BRCA online communities and through my surgeon’s office. I’ve had phone calls, emails, and chats with brave women who have undergone preventative mastectomies. They have been so nice in sharing their time with me, some spending over an hour with me on the phone answering my questions. As important as evidence based research is, nothing beats talking to someone who has gone through what you are about to. Thanks to the Funk Buddies program, the Pink Pal program, BRCA Umbrella, FORCE, and BRCA Sisterhood.
Puttin Out the Energy
My friends and family have been asking me a lot more questions about my mastectomy – which I’m really happy about. A big part of the reason I went public with my journey was to educate others about BRCA and being proactive about your health.
Today, one of my friends told me that I was the only person he had met who was excited about having a mastectomy. The truth is, I am scared as sh*t about the actual surgery and recovery, but he was right that I am weirdly excited about it. I’m really really looking forward to having it be in the rear view mirror. I’m excited because my breasts kind of feel like ticking time bombs at this point and I’m eager to lower my breast cancer risk so much. Thankful that medical technology is as incredible as it is. Thinking about how lucky I am that the BRCA test even exists, if my grandmother or great aunts had these options, maybe they would still be alive. Pumped up about having some fun celebrations before the big surgery. Feeling humbled by the offers to come over and help during my recovery, receiving thoughtful recovery gifts, and friends offering to stock our pantry up with snacks for my hubby while he’s taking care of me.
It seems odd that I could be excited right now, but I’m focusing on the end-game of no more anxiety provoking mammograms or breast MRIs and going from an 87% lifetime risk of breast cancer to around 1%. I also choose to be positive instead of worrying too much because I’m a big believer in the power of positive thinking and energy. I’ve been getting so much positivity from my friends, family, and online community and I’m just so thankful. And to quote one of the greatest shows ever….