Category: Empowerment

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.

Weeks 13-21

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.

 

 

 


Rita Wilson’s Cancer Diagnosis/Empowering Message

I had my clinical rotation today for public health, so I was up pretty early. Scrolling through online news this morning, I saw the sad news that actress Rita Wilson was diagnosed with breast cancer (invasive lobular carcinoma) and underwent a double mastectomy and reconstruction. Thankfully, she is expected to completely recover and her husband, Tom Hanks, has been at her side (yay for amazing hubbies).

Rita was very brave and decided to go public with her breast cancer diagnosis. The most important thing about her announcement was her story about how she got diagnosed. Rita had a condition (lobular carcinoma in situ) requiring her to have annual mammograms and breast MRIs. She had two breast biopsies performed, and the results showed no cancer. At this point, most people would drink a glass of champagne and call it a day. But, thankfully, Rita’s friend suggested she get a second opinion on the pathology results, and that is when her breast cancer was found. She got a third opinion on the pathology, which also showed breast cancer.

Had she not gotten multiple opinions, she may have lost her life. Rita’s message is very powerful, “I share this to educate others that a second opinion is critical to your health. You have nothing to lose if both opinions match up for the good, and everything to gain if something that was missed is found, which does happen. Early diagnosis is key.” Read more here and please listen to Rita’s advice. Go for all of your cancer screenings, whether or not you are high risk. If your gut tells you something isn’t right, see your health practitioner.

Angelina Jolie Pitt is My Hero

I was diagnosed with my BRCA2 mutation in 2007, at the young age of 23. I was prompted to get tested because of my family history of ovarian and breast cancers. My grandmother, who I was very very close with, passed from ovarian cancer. When I tried explaining what BRCA was, people were very confused. When I talked about the possibility of having my ovaries removed when I was 40, I got some strange and judgemental looks.

Even sitting in the mammography waiting room, waiting for the radiologist to take a second look at some suspicious images, the mammogram technician proclaimed in front of all in the waiting room, “Why are you here? You are so young?!” When I vulnerably explained the BRCA mutation, sitting there in an uncomfortable robe, she said “I don’t know what that is.” I fought with insurance companies with every mammogram, breast MRI, pelvic ultrasound, and CA-125 test. It wasn’t exactly how I wanted to spend my time in my early 20s, but I knew it was worth it.

Then, in May of 2013, everything changed. Angelina Jolie bravely announced she had undergone a preventative mastectomy due to her BRCA1 mutation. Suddenly, when I told someone about my BRCA mutation, they said “Oh! The Angelina gene!” One of the world’s biggest movie stars had made it possible for me to speak openly about my BRCA mutation. Even the decision to have my preventative mastectomy at age 30 was made in part due to Angelina Jolie Pitt’s decision. My breast surgeon, Dr. Kristi Funk, was the same surgeon that Angelina used, and her blog posting about Angelina’s experience made the idea of surgery less daunting to me. Angelina’s braveness to speak about her journey also encouraged me to start Funky Genes. I wanted to be open about my journey so that non-movie stars know what their resources were and that they have just as much a part in their health decisions as anyone else.

Now, Angelina published a new, brave op-ed, about having her ovaries and fallopian tubes removed after some suspicious labwork. I have known that I would get my ovaries and fallopian tubes removed at age 40 since my BRCA2 diagnosis. Hopefully, Angelina’s announcement will bring much needed attention to ovarian cancer research.

As a public health professional and soon-to-be nurse, I have seen the impact that Angelina’s openness has had on the general public. I absolutely love her message, which I say often on this blog – knowledge is power! Participating in your own health decisions is so important. I also love how supportive her husband is in her health decisions, something I am lucky enough to also experience. Angelina Jolie Pitt really is my hero and I hope one day to meet her and to tell her in person. If I’m not able to, I hope she somehow can read this post and know how much she has positively affected my life, and so many others.

Muzak

Throughout this whole crazy process of having a prophylactic mastectomy/reconstruction while going to nursing school, there were things that made it all possible. The most important was my support network – family (especially my husband), friends, my medical team, and my online community. Another important thing was having all the right supplies at home. Reality tv and cheesy movies certainly helped my recovery (I’ll post more on that another time).

One of the most important things for me throughout this journey has been music. I listened to a lot of music to make me feel empowered and strong leading up to my mastectomy. I even went to the Beyonce/Jay-Z concert about a month before my surgery and felt like I could tackle anything afterwards. When I had scary moments during this process, I listened to music to lift me up. When I felt strong and met milestones, I listened to music to celebrate. Now, I am back in Zumba and Cardio Pop classes, able to karaoke again, and belting out tunes in the privacy of my car. Below are some of the songs that helped me during this process.

Encouragement

Through one of my online BRCA communities, I got in touch with a woman who was about to have a prophylactic mastectomy with my surgeon. I reached out to her to hear about how the nipple delay procedure went. The nipple delay is a procedure (with a really weird name) that my breast surgeon does, and I am pretty sure she is one of the few surgeons in the country who does it. The nipple delay is a surgery performed 1 week before the mastectomy, where my surgeon makes the same incision she will make during the mastectomy, separates the skin from the tissue, changes the blood supply, and gets a nipple biopsy for pathology.

There are two main reasons for this. 1- This way we know before the mastectomy that the nipple (fingers crossed) has no pre-cancerous cells, so I can keep my nipples. 2 – The mastectomy changes the blood supply to the nipple from the pec muscle to the sternum, so doing the delay starts this process a week earlier, making the mastectomy a little less traumatic on the body than it already is.

So… back to earlier this week… I had brunch with my new friend who had the nipple delay about a week ago. I am SO happy I met with her. She is awesome and was super encouraging about my decision and we had a lot in common (in addition to our funky genes). She also let me know more details about the delay, I thought it was a small procedure, but she said it took 2.5 hours. She also made me even more confident in my surgeon when she showed me her incisions, which were barely visible. She was also not very bruised. It also made me realize how lucky I am to live in LA. She flew in to go to my surgeon, has to stay at a hotel for weeks, and then fly back here every week for follow-ups and tissue expansions. It was also lucky we met because now I can come help her with her recovery and drainage tubes, which gross a lot of people out, but not me. 🙂

My new friend had her mastectomy today, so please send good thoughts her way.