Off-the-Shelf or Custom: Which Would You Choose?

Published in Women's Health on December 08, 2021

Every woman has her own unique breast cancer journey. Cheryl’s story is no different. Diagnosed in 2004 with early stage breast cancer on the right side, she underwent a lumpectomy, had radiation treatments, and was in remission for several years.

However, in 2015, Cheryl was diagnosed with invasive breast cancer on the right side, which happens to be the same side where she had her mastectomy. During the course of chemo treatments, she kept getting infections at the incision site. The infections lead to several additional surgeries. On top of surgery, she had 8 months of chemotherapy.

Once finished with chemo, she was fitted with an off-the-shelf breast prosthesis. Cheryl was fitted with a larger off-the-shelf prosthetic to match her remaining breast. Unfortunately, off-the-shelf was just not the right option for her.

“[The off-the-shelf prosthetic] was very cumbersome to say the least because I had to get a larger one to match the left breast that I still had, and it didn’t fit very well,” said Cheryl. “It was very heavy and caused a lot of problems, particularly since I had all the additional surgeries, I had a lot of scar tissue and it just didn’t fit very well. So I was constantly uncomfortable and a lot of the time in pain.”

She came to Perfect Match Boutique, a post-mastectomy boutique based in Camp Hill, PA, and found out that a custom breast prosthetic was available that would actually fit her unique chest wall contour and topography. However, she found out later that her insurance provider, Medicare, would not pay for it.

Medicare’s Lack of Coverage

A breast prosthesis is covered by Medicare for a patient who has had a mastectomy. However, according to Medicare, medical necessity hasn’t been established for custom breast prosthetics, and therefore, cannot be covered, making custom breast prosthetics an out-of-pocket expense for many women searching for an alternative to off-the-shelf.

Unfortunately, since Medicare didn’t cover custom breast prosthesis and due to the concavity from breast surgery, Cheryl struggled for 6 years with a heavy, painful, and uncomfortable off-the-shelf prosthetic. In August 2021, she decided to bite the bullet and pay for a custom breast prosthetic out-of-pocket because she was so uncomfortable.

“I mean, why shouldn't insurance pay for that when they pay for everything else and they would pay for the reconstructive surgery? It just doesn't make sense to me that they wouldn't pay for something, which is technically changing your life medically and physically? It's making you feel better.”

One Size Fits All?

When you look at the back of an off-the-shelf prosthetic, you can see it's just one standard shape. It doesn't fit any unique contours. Experienced mastectomy fitters know that no chest wall that looks like the shape of an off-the-shelf prosthesis.

When women have concavity on the chest wall, the off-the-shelf prosthetic doesn't fit ideally.  The space between the prosthetic and chest wall allows the prosthetic to shift and move around the chest, since there is nothing to anchor it in place.  The prosthetic pushes towards the sternum and she will need to make adjustments to her bra throughout the day.  This can cause discomfort and sometimes pain depending on the scar tissue, not to mention this maneuver can be embarrassing when done in public.

Already after two weeks of use, Cheryl has noticed a huge change in her posture, self-esteem, and back pain.

“I swear it's a miracle. I can't tell you the difference. Just wearing that as opposed to the one I had before, it's just wonderful. It looks better. I'm not carrying all that extra weight on my right side and particularly in my shoulders and it fits better on my chest wall. So, it's helping with a lot of those issues I was having with the pain and the uncomfortableness with the other prosthetic. I'm a very happy camper and I love the prosthetic.”

Wearing the custom breast prosthetic that fits her chest wall like a puzzle piece has made all the difference because the prosthetic is no longer moving around or shifting by itself; it’s moving with Cheryl. It’s also lighter weight and is made so it fits around scar tissue, making the prosthetic more comfortable to wear.

Surgical Reconstruction as a Replacement Option

Cheryl had decided early on that she did not want to pursue surgical reconstruction as her breast replacement option.

“I actually met with reconstructive staff about a year or so after my initial treatments. I was so tired of the surgeries, the drain tubes, being sick, all the other things that went with that. And when they explained to me the procedure, it just sounded like it was not something I was willing to do at that point. They did tell me I could reconsider at a later time. But quite frankly, the recovery period and all of the procedures that were involved after what I had already been through, to me, it just wasn't an option.”

Surgical breast reconstruction often takes multiple surgeries. Additionally, implants may have to be replaced every 10 years, which as people age, many women do not want additional surgery. Their focus is to just get the breast cancer out, move on with their lives, and be as comfortable as possible.

Self-Esteem/Mental Health

Not only did the custom prosthetic fit her better, but Cheryl also already noticed a difference between the off-the-shelf prosthetic and the custom prosthetic within just two weeks of use.

“When I was wearing the off-the-shelf, I felt like I was carrying an extra five pounds on my right side, which really put me off balance and my shoulder was sore from carrying all that extra weight… I think [the custom breast prosthesis] looks better. When I look in the mirror, it looks better to me. It makes me feel better and that increases your self-esteem. I mean, we all need that.”

Let Her Decide

Women deserve to have all options available after a mastectomy, which includes going flat, surgical reconstruction, off-the-shelf prosthesis, and custom prosthesis. #LetHerDecide which option is best, not the insurance company or the doctor. The Breast Cancer Patient Equity Act has been introduced in the Senate and House (S. 2051 and H.R. 3087), which would require Medicare to recognize custom breast prostheses as an eligible benefit after a mastectomy. For more information on the Let Her Decide campaign and to ask your representatives to cosponsor, visit letherdecide.org.

TAGS

1. essentially women
2. let her decide
3. women's health