Navigating Life After a Mastectomy: Stories of Hope, Courage, and Healing
Discovering you need a mastectomy is a scary and overwhelming experience, and we know how easy it is to feel isolated.
This week we deep dive into the experiences of two incredible women who have taken their stories of struggle—and used them to build communities where women going through similar experiences could come together.
We interviewed Simran Malhotra, M.D., 𝘋𝘪𝘱𝘈𝘉𝘓𝘔, and Certified Health and Wellness Coach (CHWC), and Melanie Lynn, founder of Melanie Lynn Penn Design, to discuss their experiences undergoing mastectomies and navigating life after undergoing a mastectomy.
Prepare for Surgery
Brilliantly: Prior to your mastectomy, what did you do to prepare (e.g arranging school pick-ups, scheduling house cleaning, etc)? Looking back, is there anything you wish you did to prepare that was overlooked?
Dr. Simran Malhotra: Preparing myself for surgery physically, mentally and emotionally was a key factor in preparing for surgery. I started a gentle stretching and strengthening program 2 months prior to my surgery. Since I had a prophylactic mastectomy, grieving the loss of my breasts before surgery and honoring them was both a powerful and cathartic experience. I did this by getting a boudoir photoshoot, having a painting done of my breasts, and writing them a letter thanking them for all they gave me. These experiences allowed me to "feel all the feels" about losing a big part of me, but also served as incredible tributes to my breasts that I still enjoy looking at from time to time. Since I was choosing to go flat after my mastectomy, I stopped wearing push up bras several months prior to surgery and invested in several sexy lacy bralettes and backless tops!
My kids were 3 years old and 18 months when I had my surgeries. Having a strong support system around was incredibly important. I invited my mom as well as my cousins to come stay with us after my surgery which was a huge blessing in terms of giving the kids extra love & attention—but also for managing the house and preparing meals. This allowed my husband to really focus on me for the week after surgery when I needed the most help physically.
In hindsight, I wish I didn't buy some of the post mastectomy recommended gear as I didn't end up using a lot of it. My top post mastectomy all-star items were a recliner or bolster for bed (since I also had a hysterectomy), 3-4 comfy loose button up shirts (use pins for the drains), and a seatbelt pillow for the car. Ultimately, everyone is different in terms of what they find helpful post mastectomy so it's okay to start off with a little bit, but also know that you can always buy or ask for things as needed when recovering. And be sure to have a good pain and bowel (poop) management plan with your doctor.
Melanie: I made arrangements for my husband and I to spend the first week of recovery with my parents. I went a week before and had the large pillows, clothes, etc all set up there ahead of time. My surgery was prophylactic so I had the advantage of extra planning time. The things I always mention to people who can't stay with someone is to put things you'll need, such as cups and bowls, at a non-reaching height. Also have some easy heat and eat meals on hand and make appointments to get your hair washed at a local salon. It’s completely worth it especially if you can't shower with your drains.
Recover from Surgery
Brilliantly: After your mastectomy, did you experience any side effects that surprised you or you weren’t expecting?
Dr. Simran Malhotra: Since my mastectomy, I have had a hard time opening jars which is something I was not expecting and seems to be a common experience. I have also experienced some chest and shoulder tightness which has definitely improved with time and with constant stretching & strengthening. I wasn't expecting any sensation in my nipples or chest, but surprisingly as time has passed by, the sensation has slowly started to come back. It doesn't feel the same as it used to but I'm grateful to have some sensation.
Melanie: This may not be the answer you're looking for but I spend a lot more time in the mirror than I thought I would. I never used to think about what my chest looked like prior to this surgery. For a while it became all consuming. I dealt with some specific reconstruction related things that were a little annoying. One of my implants (I have over the muscle reconstruction) likes to flip over sometimes and I have to push it back into place. Totally weird but harmless. On my left side I also experienced an overgrowth of scar tissue called a capsular contracture. This was fine at first and then became painful about 3 years later. I had another surgery to remove it and place a new implant this past June.
Rebuild your Body
Brilliantly: What products / natural remedies helped you the most when it came to navigating post mastectomy life?
Dr. Simran Malhotra: I don't have any particular products that helped me post mastectomy but engaging in and committing to a healthy lifestyle has been key in my recovery from my mastectomy as well as for my mental and emotional health. In the days following my mastectomy, drinking lots of water, eating high fiber foods and moving around was key in getting my bowels to stay regular especially since I was taking opioid pain medication which can back you up.
A couple of months after surgery I committed to more of a regular self-care routine that is still what I practice today. It involves eating a well-balanced plant powered diet, drinking a lot of water, incorporating regular physical movement, getting 7-8 hours of sleep every night, some form of mindfulness, and a gratitude practice. While I don't do everything every day, making sure I am consistently doing these things has greatly helped me navigate post mastectomy life. In addition, finding support through therapy as well as online support groups has been incredibly helpful for me.
Melanie: I use topical cannabis for nerve pain when my body decides to have a flare up and give me a round of sparkly shocks out of nowhere. I find it really helps quickly and I like that I don't have to actually take systemic medication for it. I use Brilliantly Warm (of course!) for the coldness that comes with removal of tissue and implant placement. That's a life changer especially in winter. I also found that being able to still wear sexy cute bras helped me feel normal. Super grateful for AnaOno and Amoena for making such awesome post mastectomy bras and products that actually fit my new body.
Brilliantly: What advice do you want to give someone who is about to undergo a mastectomy? Is there something you wish you were told before your mastectomy or something you found surprising from the whole experience?
Dr. Simran Malhotra: Life after mastectomy won't be the same and neither will you, whether you are a previvor, thriver or survivor. I think it's so important to have grace for yourself as you navigate post mastectomy life and explore this new version of you. Even though this isn't a decision that you make lightly, know that it's okay to have moments of sadness and struggle. Take things one day at a time and trust the process. Be proud of the incredibly difficult decisions you had to make and let your scars remind you of your strength, courage and resilience. Let them remind you of the choices you made for your body and your life, even if in some cases it was never a choice at all.
If things post mastectomy aren't going the way you envisioned, be sure to advocate for yourself and speak to your medical team. I also highly recommend finding a support group, whether it's in person or online. It can be incredibly helpful to talk with others who have been through the same experience and understand the emotions and challenges you may be facing.
Melanie: If you have the luxury of time, use it! Speak to other patients who have had the specific procedure(s) you’re going to have. I personally recommend REALLY trying to avoid doom scrolling. You will ALWAYS find people who are thrilled and people telling you the surgery you are planning will ruin your life. Try to see more than one doctor. Read reviews. Ask for before and after photos. Ask if your doctor has former patients you can speak to. See how your doctor reacts when you ask them questions. Are they rushing you? Making you feel insignificant? If yes, seek another opinion if you have time. Trust your gut—that's always going to be my best advice.
I find it surprising how mastectomy is an amputation (of an extremely intimate body part for that matter) but isn't treated the way other amputations are. I don't always feel that hospitals and medical professionals show enough care around the fact that something was lost from us forever, and that it affects your mental state as well as your physical state. I think people should know it's okay to grieve. Loss is loss. It doesn't matter if it's a body part or a person. I think this is what I wish I had known going in, but I'm not sure you can really know until it happens.
Dr. Simran Malhotra
Simran Malhotra is an M.D., 𝘋𝘪𝘱𝘈𝘉𝘓𝘔, and Certified Health and Wellness Coach (CHWC)—and founder of Coach Simran MD. She specializes in empowering women who are at high risk of cancer and illness, by shifting their lifestyle and mindset.
She is a proud mother of two beautiful children, and is committed to helping raise awareness of the power of lifestyle medicine.
As both a palliative care physician and breast cancer previvor, Dr. Malhotra is committed to improving the quality of life for those suffering from chronic illnesses. She is a BRCA 1 mutation carrier, and opted to have a preventative mastectomy and hysterectomy, amidst the COVID-19 pandemic.
Melanie Lynn is the founder of Melanie Lynn Penn Design. She is using art to transform the stigmas surrounding scars and stretch marks—and empowering women to embrace their bodies for the magic they are capable of.
Having gone through what she felt was 4 bodies in 4 years (pre mastectomy up to postpartum), Melanie is passionate about helping women honor the strength of their bodies through art. She has told the stories of over 100 women through her art—and is working to crush stigmas one drawing at a time.
Melanie is an artist, community builder, and powerful changemaker in the post mastectomy and women’s empowerment space.
Website: Melanie Lynn Penn Design