When I was making decisions about my breast cancer treatment, I was only 25 years old. I was not in a stage of my life where I was even remotely settled down, yet I was trying to make decisions that would affect me the rest of my life. It wasn’t easy.
One of the biggest decisions I had to make was which surgery to get. I discussed the details of that decision previously, but I want to touch on something that recently came to my attention, in addition to some other new revelations. Since my doctors agreed that there was no strong evidence indicating one surgery over another would improve my chances of survival, one of the main factors in my decision was breastfeeding. Now, I wasn’t entirely positive if I’d have kids in the future, but in the event that I chose to and was able to, I really wanted the opportunity to try to breastfeed. So, I chose the less invasive surgery and had a lumpectomy so that maybe one day, if I had any biological children, I could try to breastfeed.
Well here we are! I am now 36 weeks pregnant and nearing the moment I had planned for during that time. As I’ve gotten closer to our due date, I’ve sought out specific lactation support given my unique situation. I don’t know anyone else who is a breast cancer survivor and also trying to breastfeed after treatment, so I had no idea what to expect.
After many phone calls and plenty of googling, I found a unicorn! Her name is Dr. Katrina Mitchell and she is 1 of 2 specialists in the US with knowledge of breast cancer and lactation. She is a breast surgeon, an international board certified lactation consultant (IBCLC) and a certified perinatal mental health provider. She is the whole package and while it took me a little over a month to get an appointment, it was well worth the wait. She’s based in California and luckily I was able to get a telehealth appointment with her, covered by insurance. Somehow, it worked out perfectly.
During our telehealth appointment, which my husband joined with me, I explained my history and she was able to provide lactation information specific to my situation.
The most important takeaways for me were these:
- Continue to get my annual diagnostic mammogram, ideally before baby arrives and annually even while breastfeeding, as well as try to get a whole breast ultrasound screening to supplement
- Ignore my right breast as it pertains to breastfeeding – do not try to breastfeed on that side and do not use a nipple shield or supplemental nursing system at all
- Seek out mental health support/medication management from a reproductive psychiatrist (only 8 centers in the country) for postpartum
Now, the instruction to continue with my diagnostic mammogram was actually different from what my oncologist recommended nearly two years ago as we were discussing the start of our family-planning journey. I’m not sure if the guidelines changed in the last two years, but Dr. Mitchell provided evidence-based recommendations that I could share with my oncologist as I requested to continue follow-up surveillance. Knowing that I didn’t actually need to go possibly 2-3 years without surveillance gave me a sense of security that I thought I’d have to give up. Luckily I managed to get a mammogram already and I’m all clear for now! Phew!
For the second major takeaway, the news to ignore my right breast altogether was a surprise. While I anticipated less than average milk production on my right side based on the difference in growth between my breasts during pregnancy, I did not know that I wouldn’t be able to/shouldn’t even attempt to breastfeed from my right side altogether. Remember, part of the reason I chose a lumpectomy was for future breastfeeding.
I learned that it wasn’t actually the lumpectomy that impacted my ability to breastfeed on my right side but it was actually the radiation. So regardless of my surgery choice, I never would have been able to breastfeed from my right side, and I had no idea at the time I made these decisions. Would I have chosen a single mastectomy instead of a lumpectomy, given this information? I have no idea but I didn’t have all the facts at the time.
Now, I don’t blame my doctors as they were fantastic and there could have been a variety of reasons I didn’t know this. First off, it’s possible that I didn’t outline my decision-making process to my surgeon but rather just told him my decision. I can’t quite remember. If I did tell him my thought process, it’s possible that he simply wasn’t aware of the impact of radiation on lactation. It’s not fair to expect a surgical oncologist to know very specific details about radiation and the impact on lactation, as those areas aren’t their specialty.
While my doctors didn’t work in silos and actually did communicate with each other, their focus is eliminating the cancer in my body and reducing recurrence, rather than my ability to breastfeed in the future. I’ve learned over the years to seek out very specific support, as in my opinion, the medical education system currently doesn’t do a great job of cross-training in areas that are connected, at least from my breast cancer experience. I can only hope that this will continue to improve over the years and doctors will receive more comprehensive cross-training of connected specialties that may impact their patients’ decisions.
Lastly, the mental health side of things. I’ve been worried about this from the beginning of pregnancy, to be honest, as my depression has ebbed and flowed from the start. I have sought out the appropriate support systems during pregnancy though and have been very intentional in making sure I have support set up for postpartum as well. Prior to my consultation with Dr. Mitchell, I had never heard of a reproductive psychiatrist though. I didn’t know there was a speciality in which someone could help with my medication management specifically as it relates to both my depression and postpartum hormones. I decided that I’d prefer a more specialized support like that, rather than the basic medication management that I was currently receiving.
Unfortunately, I ran into insurance issues and/or state telehealth restrictions with each of the places that I found. The out-of-pocket costs were absurd too and I simply couldn’t justify it, no matter how important my mental health is to me. Instead of giving up though, I altered my search slightly to include psychiatric mental health nurses with a perinatal specialty, which seemed to be the next best option. I found an in-state practice that has telehealth appointments and accepts my insurance – win!
My first appointment was today and I’m so glad I didn’t give up when faced with financial barriers. I continue to seek out specialized support and advocate for myself, and it continues to pay off. Not only was the nurse incredibly personable and a great fit but she works directly with a psychiatrist and is getting a plan together for medication management just in case my mental health trends in the wrong direction postpartum. Having a plan in place gives me peace of mind that we can act quickly with medication management if needed, and that was the last piece of the puzzle. Maybe I’ll be perfectly fine postpartum but I have a variety of factors that have the potential to trigger mental health struggles (medical trauma, breastfeeding challenges, lack of sleep affecting depression and more). I try to be as self-aware as possible and setting up these supports ahead of time is the best way I can set myself and our family up for success when our baby arrives.
I’m now feeling as prepared as I can be when it comes to breast cancer surveillance, breastfeeding support, and mental health. It took a lot of work and self-advocacy to get here but it’s truly what I needed and I am hopeful that I’ll have all the support I need when the time comes – less than 4 weeks away!
If you or someone you know is looking for invaluable, evidence-based breastfeeding support, please visit Dr. Mitchell’s website. It has information for all types of breastfeeding scenarios, not just breast cancer-specific, and I think it could truly benefit many people. https://physicianguidetobreastfeeding.org/
Additionally, if you or someone you know needs postpartum support, you can visit postpartum.net.
Still Rising 