Being Persistent Pays Off in Cancer Advocacy

In 2014, I was diagnosed with breast cancer. After the initial shock of my diagnosis wore off, I had to decide what to do. The oncologist suggested two options, both of which required surgery:

1. Lumpectomy, followed by chemotherapy and radiation, with a diagnostic mammogram every three months moving forward
2. Mastectomy, followed by chemotherapy and radiation

Both choices offered a way of eradicating the cancer and giving me a better chance at a longer life, but I didn’t want to be tethered to a mammogram machine. I wanted the cancer out of my body and to basically be done with it.

Choosing option 2 was the best choice for me, but it wasn’t as cut and dry as I thought it would be.When I talked with the breast surgeon, she explained I’d not only need to have my breast removed, I’d also need to have the sentinel lymph node, the closest one to the breast, tested. If that node showed any signs of malignant cells, I’d need to have more lymph nodes removed.

She explained this was standard procedure because the lymphatic system traveled throughout the entire body and if the cancer had spread to one node, chances where it would continue traveling taking cancer to other parts of my body. I definitely didn’t want that.

The test was performed at the time of surgery and cancer was found in the sentinel node, so the doctor removed four lymph nodes in my right arm, the side of the cancer, and two in the left arm since I was not only having the cancerous breast removed but also having the non-cancerous one removed.

I’d made the choice for a double mastectomy even though cancer was only in my right breast. The choice was not made lightly. I wanted to be proactive and hopefully prevent a return of cancer in the health breast.

About a month after surgery, I noticed an uncomfortable swelling in my upper arms. Immediately, I contacted the doctor. A physical exam revealed I was experiencing lymphedema.

Lymphedema is a condition caused by a disruption in the lymphatic system. This can occur when lymph nodes are removed or when the system is damaged in other ways. The lymphatic system is a vast series of lymph nodes that carry impurities throughout the body where it is eventually disposed of as waste. Since I’d had several lymph nodes removed in both arms, the fluid couldn’t flow properly and collected in certain areas of my body causing painful swelling.

The doctor recommended I see a therapist for manual lymphatic drainage. Several times a week, I visited the therapist and had a type of massage performed on my arms to help move the lymphatic fluid throughout my body. After the massage sessions, the therapist would wrap my arms tightly with bandages. The sessions helped a great deal on the days I went, but on my “off” days, the swelling immediately came back. I felt like it was a hopeless cause.

Talking with her about the situation, the doctor recommended I stop the therapy sessions and take the next step which would be resorting to wearing compression sleeves made specifically for those with lymphedema. The sleeves provided graduated compression and I needed a prescription for them.

My insurance company didn’t want to pay for the sleeves, and I had to fight to prove they were medically necessary by having the doctor write a letter for me. After months of fighting, I was able to get the sleeves, which helped, but didn’t solve the problem.

Then, at a visit to see the oncologist, he noticed the sleeves weren’t doing a great job of controlling the lymphedema and suggested I use a compression machine. He explained the machine would be something I’d have to use daily, and it would gently squeeze each arm incrementally and simulate the normal workings of the lymphatic system. I agreed to try it but had no idea I was in for a big ordeal.

The compression machine was expensive, costing almost $3,000 for the system I needed. Although we had health insurance through my husband’s company, they didn’t want to cover it. Once again, the doctor had to provide documentation that it was medically necessary. Months later, I received approval and was able to go forward. A technician with Tactile Medical came to my home, measured me, and ordered the precise machine for my areas of concern.

Using the sleeves and the lymphedema compression machine became routine and helped me live a more comfortable life, but since the sleeves are made of elastic fabric, they do wear out. I was thankful insurance allowed me two sets of sleeves a year with a doctor’s prescription.

Shortly after I’d purchased a new set of lymphedema sleeves, I received an email from an advocacy group promoting lymphedema awareness. They were reaching out to those suffering from lymphedema in hopes of developing a bill that would provide funding of medically necessary supplies for the treatment of lymphedema. As soon as I read the proposed plan, I was on board.

Every month or so, I’d find an update on the progress of the bill in my inbox. At times, I was asked to write our state representatives to bring awareness or ask for their support of the bill. Repeatedly, I contacted my senators and congressmen sharing my struggles with lymphedema and asking for their help in passing the bill.

I joined a Facebook group promoting the bill and found the collective voice of men and women all over the country inspiring as we worked together to bring about change.

Finally, Senate bill S.1315 passed and went on to Congress where it was assigned bill numberH.R.3630. We sat on pins and needles hoping it would one day be approved and moved to the President to become law.

I was particularly interested because I’d just turned 65 at the first of the month and would soon be reliant on Medicare for health coverage. No longer would I be able to get the supplies for lymphedema that I needed at 80% coverage; Medicare didn’t cover medically necessary compression supplies, even with a doctor’s prescription.

On Dec. 23, as H.R.3630 was brought before Congress, we achieved victory! The bill was approved and is now headed for the desk of President Biden where it will be written into law.

This bill, when it becomes law, will set a precedent for Medicaid and private insurance companies to follow by providing much needed medical supplies to individuals suffering with lymphedema.

I’ve never been part of an advocacy group before, but it feels so good to have participated in such an important event. Knowing others will benefit from our hard work is so satisfying.

Benjamin Franklin once said, “Energy and persistence conquer all things." That powerful statement is what drives those like me. One person’s voice isn’t always heard, but when a group of voices meld together, the volume increases exponentially.

Learn more about the Lymphedema Treatment Act here: https://lymphedematreatmentact.org/?fbclid=IwAR2944OjpfLXkF0pO6C3IvDyr3zuqcQaTrgEwWXM5J5n1RdeeYBv777ETLA

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