a rant

Since my breast cancer surgery, I have experienced lymphedema in my left arm. I think they told me about it right after surgery but my head wasn't in the game then so the information drifted out immediately. When I started having symptoms, a year later, I figured it out fast.

Here is a pretty good explanation of lymphedema:
Lymphedema is a potential side effect of breast cancer surgery and radiation therapy that can appear in some people during the months or even years after treatment ends. 

Lymph is a thin, clear fluid that circulates throughout the body to remove wastes, bacteria, and other substances from tissues. Edema is the buildup of excess fluid. 

So lymphedema occurs when too much lymph collects in any area of the body. If lymphedema develops in people who’ve been treated for breast cancer, it usually occurs in the arm and hand, but sometimes it affects the breast, underarm, chest, trunk, and/or back.
Why does lymphedema happen? As part of their surgery, many people with breast cancer have at least two or three lymph nodes removed from under the arm (sentinel lymph node biopsy), and sometimes many more nodes (axillary lymph node dissection). If the cancer has spread, it has most likely moved into to those underarm lymph nodes first because they drain lymph from the breast. Many people also need radiation therapy to the chest area and/or underarm. Surgery and radiation can cut off or damage some of the nodes and vessels through which lymph moves. Over time, the flow of lymph can overwhelm the remaining pathways, resulting in a backup of fluid into the body’s tissues. 

If you already have lymphedema but don’t remember hearing much about it during breast cancer treatment, you’re not alone, says Dr. Marisa Weiss, founder and president of Breastcancer.org. “I can say from experience that the time right after diagnosis, when you are considering options and planning treatment, is a blur. When you are feeling so anxious and overwhelmed, it is hard to listen, understand, and decide. So even if lymphedema gets mentioned during this time, you may not remember it. Or it may not come up because the focus is really on getting you well. So if lymphedema does develop later on, it can feel like yet another insult to the body, one that many women weren’t fully prepared for. The good news is that women can learn how to manage it and lead normal lives.” 

Although there’s no way to know for sure whether you’ll develop lymphedema after breast cancer, you can help yourself by learning more about it. Know your risk factors, take steps to reduce your risk, and be aware of early symptoms. Left untreated, lymphedema can worsen and cause severe swelling and permanent changes to the tissues under the skin, such as thickening and scarring. 

Adding to the frustration some people feel is the conflicting advice about how to prevent and manage lymphedema — perhaps you’ve encountered some of it! There’s still much more research to be done before we fully understand this condition. Also, many doctors don’t have a great deal of experience with lymphedema. Realize that you may need to take charge and find your way to an experienced lymphedema therapist.

Recovery involved physical therapy, exercises at home, a compression sleeve, and bras that were prescribed by the doctor and filled by a specialty shop. No more fancy under-wire garments. These were serious, wide-sided, no nonsense things. And seriously expensive.

The first year, I got two and made do with those.

In May, they told me that I could get up to 12 a year. I thought that might be excessive, but I thought I would get what was needed and no more. So, off I got to the specialty store to be measured and to order two new bras. The woman who helped told me that they dispense them two at a time so I could call in August and order two more.

I called Monday and the person who answered the phone said she would order them for me. Yesterday I had a message saying that Medicare will only allow three in six months and my prescription expires on the 20th of August. I called back and said there must be a mistake, I have BCBS not Medicare and I have a RX for a year.

Here is where it gets interesting. She said their company had been purchased by another company and they follow Medicare guidelines no matter what kind of insurance you have. Long pause. I said I pay $2100 a month for premium health care. Not her fault. I get that. But I am pissed.

She said they could fill my RX only if the bras are medically necessary. I asked who decides that and you guessed it...the insurance company.