With Breast Cancer, Time Doesn't Always Heal Wounds
on June 08, 2021
Time is a precious commodity that you cannot buy or get back. Sometimes it’s time to act and sometimes it’s time to be patient. Renee Firato’s cancer journey is all about time, taking your time, the timing of surgeries, and the timing of life events.
As she was just about to graduate from high school, Renee had her wisdom teeth removed and did not recover well, which ended up leading to the discovery of acute myelogenous leukemia. Within one week of getting her port placed on her left side, she developed a massive infection from the chemotherapy leaking out.
“I lost all of my privacy at the age of 18 when several doctors and interns were poking around my breast deciding if I had an infection or not.”
Cancer can be challenging at any age, but going through countless doctor appointments and treatments can have lasting effects physically and mentally.
After chemotherapy, radiation, a medically induced coma, a bone marrow transplant, two years of isolation to recover from the transplant, being completely being revaccinated as if she was a newborn baby, and experiencing Post-Traumatic Stress Disorder (PTSD) from the entire process, Renee was able to successfully recover from her first cancer diagnosis. Years later, much to her surprise, she miraculously had a healthy baby girl after 11 years of being told that she was completely medically infertile.
In 2019 as Renee was getting her child ready for kindergarten, she found a lump on her left side near where she had all her infections 17 years earlier from her chemo port.
“It quickly grew from just a lump to ‘we need to consider time and genetic testing.’ We had to do a different type of genetic testing and a whole different route of chemotherapy because I've already had a couple of hundred doses of the typical ones, and we needed to shelf those in case, God forbid, we gotta deal with this again. And I was 35.”
She was diagnosed with Stage Two metastatic breast cancer and her care team had to act quickly due to her past history with cancer. They had to make the tough decision to either do a bilateral or unilateral mastectomy. But time was not on her side; she wouldn’t be able to recover well enough from a bilateral. So, she underwent a unilateral mastectomy with total lymph node dissection. Tracers were placed on the right side to monitor any cancer progress. For the second time in her life, she started her cancer treatment, which included 6 rounds of chemotherapy, Filgrastim injections at home after each round of chemo, a blood transfusion, and 25 sessions of targeted radiation. Each month, she had to go to clinic for Lupron injections (paired with daily home medication) to low dose chemo-control the Metastatic disease, which has to be done until 2025. These injections cannot be done at home, which means that she has to expose her delicate immune system to hospitals to prevent the spread of cancer once a month.
“In August 2020, just as I was finishing the healing process of it all, we discovered a spot on my thyroid and some clotting issues with my uterus. I was highly advised to have a thyroidectomy and risk contracting COVID for cancer treatment. I don't even remember all of it because I was in a chemo fog, in the middle of treatment, COVID, and raising a child by myself.”
If going through cancer wasn’t hard enough, Renee’s cancer journey was made even more difficult with the COVID-19 pandemic. She lives in the Bay Area in California, which was a COVID hotspot, which made treatment for breast cancer and the decision to undergo thyroid surgery even more difficult and risky for someone with a compromised immune system. Even though her body had experienced a beating from her treatments and surgery, Renee wanted to determine if she could have surgical reconstruction to provide balance and symmetry.
“I have rib fractures and lung scarring from radiation damage, so I’m not a candidate for reconstruction at this time. And I still need to have surgery on the right side. I know what that surgery is like, so how do I deal with that as a single parent in the middle of a pandemic?... Having had the leukemia history, I know there’s amputation [involved with a mastectomy], but I didn’t put it together until it happened to me that like, okay, I might not be able to have a procedure to balance things out on the same day or any time soon. And I’m still struggling with accepting that.”
There hasn’t been enough time yet for Renee to have another scan to see if she’s eligible to have reconstructive surgery or not. At the moment, even the preventative bilateral mastectomy surgery is still not a conversation unless something changes or new cancer is detected.
Because she’s not currently a candidate for surgical reconstruction, her breast replacement option is prosthetics or to go flat. Medi-Cal sets its fee schedule based on what Medicare allows. Since Medicare doesn’t provide coverage for custom breast prosthetics, neither does Medi-Cal. Medicare does not consider custom breast prostheses as medically necessary.
“I’ve always been very curvy. I’ve always felt like it’s been a defining part of me, like a Dolly Parton, so it’s hard to identify that, knowing that every time I say the word breast cancer, the eyes automatically go down.”
As women go through the post-mastectomy recovery process, mental health, post-surgery chest shape, and skin tone should be taken into consideration as part of the healing process because a mastectomy is an amputation of a body part. Regaining full function after an amputation is a positive health outcome. Many women have a hard time shopping for clothes or being brave enough to don a bikini, let alone doing either of these things after a difficult surgery.
After surgery, her breast cancer team at Kaiser referred her to Nordstrom’s to be fitted for mastectomy bras and a prosthetic.
“The hard part is that I didn’t fit into clothes because of my shape before breast cancer. Now you want me to try to fit into it now? Are you kidding me? [Before surgery,] just to go running, I had to wear four sports bras, and then trying to replace that now [is difficult]. The surgeons didn’t just take a triangle shape. They took part of my arm and part of my side. I’m concave. The breast forms I find are one typical shade if they aren’t white. They look like a Tomahawk steak and no one is shaped like that.”
Nordstrom’s ended up referring her to Marzel’s, an Essentially Women member, who could help her with insurance and the best fit possible with a custom prosthetic. She has been working with a mastectomy fitter for a year and a half trying to get the custom prosthetic to look right and to get it paid for by her insurance plan. She has had to prove medical necessity for the custom breast prosthetic, which meant ruling out surgical reconstruction through months of painful tests, doctor appointments, poking, prodding, and giving up her privacy.
“I have a lot of pain in my arm and on my ribs because the tissue is gone. I wear a breast form, it covers the gap on the front, but it doesn’t cover the part on my side…I look at ice packs and think that it could be a form, or soft socks- I’m not going to wear the socks; I’m going to shove it in my bra to try and fit the gaps that the form isn’t covering. So, it’s incredibly difficult trying to adjust to that and still have confidence…I’m constantly adjusting the [off-the-shelf] form in public to try to keep it in place.”
Thankfully, Renee recently received her custom breast prosthetic for her left side. It took her persistence with her mastectomy fitter to fight for what she needed to get back to her normal routine and to her daughter. Her story isn’t over yet. She still has her unilateral mastectomy on the right side to worry about. She will need to fight and be persistent with Medi-Cal all over again to get a custom prosthetic on her right side.
H.R. 3087 The Breast Cancer Patient Equity Act has been recently reintroduced into the 117th Congress. This federal legislation would require Medicare to recognize custom breast prosthesis as an eligible benefit after mastectomy surgery. The Senate legislation will be introduced soon. Essentially Women is also working with members in many different states to introduce state legislation to require Medicaid or third-party insurances to recognize custom breast prosthesis as an eligible benefit. For more information, contact Essentially Women at or call 800-988-4484.
Thank you to Renee Firato for sharing her story. You can follow her on Instagram at @reneediana3 or on LinkedIn. for more on her cancer journey. If you know of women in your community who would like to share their stories to help promote the advocacy efforts to pass legislation for custom breast prosthesis, please contact us at firstname.lastname@example.org.
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