Lymphedema, Breast Cancer’s Booby Prize

Yep. Lymphedema is breast cancer’s booby prize alright.

As you probably know, March is Lymphedema Awareness Month. Over the years, I’ve shared guest posts from some amazing women who have been diagnosed with this still too often under-discussed potential side effect from breast cancer treatment.

It’s my pleasure to feature another guest post from friend and fellow blogger, Carrie Ellman-Larsen. Carrie was diagnosed with breast cancer in 2014 and shortly thereafter, lymphedema. Thank you for sharing some of your story with us, Carrie. To read more, please visit Carrie’s blog, My Little Bs Have the Big C:  A breast cancer blog for young women.

LYMPHEDEMA:  BREAST CANCER’S BOOBY PRIZE

by Carrie Ellman-Larsen

Nothing can be worse than cancer, you say to yourself.

You’ve had a mastectomy, months of chemotherapy, weeks of radiation and are on hormone therapy for a decade. You’ve endured anxiety, depression, hair loss, nausea, fatigue, mouth sores, constipation, diarrhea, chemobrain, countless scans, blood draws and needles of varying sizes.

You’ve done it all.

And when you were done, you were supposed to move on. You were promised you could move on.

“You’ve beat cancer,” they all told me. “Go out, live your life and be happy!”

But breast cancer had one more trick up its sleeve. There was still something behind door number two.

That something was lymphedema.

“Lymphedema? Very few women get lymphedema. How many women do you see in my waiting room with compression sleeves? Here’s a pamphlet. Let me know if you have any concerns,” said my surgeon.

I thought I just did.

My story is one of many who have had breast cancer and have either had lymph nodes removed, had a sentinel node biopsy or have had lymph nodes damaged by treatment such as radiation. These and other cancer treatments can put men and women at risk for developing lymphedema.

Lymphedema is when excess lymph fluid cannot properly flow through the body because of lymph node removal, damage to lymph nodes due to trauma, or genetics (primary lymphedema). The area then becomes swollen with fluid. The result can be unsightly, uncomfortable, painful, can cause infections (cellulitis), and can affect mobility and the ability to do our normal, everyday tasks.

So, if lymphedema is so damaging and life altering, why aren’t doctors paying more attention to it? 

Why aren’t we given more warning and information? 

Why aren’t we being screened for this awful side effect the same way we are being screened for recurrence?

Why aren’t baseline measurements taken before breast cancer treatment begins?

These are questions we need to be asking our medical teams. Without advocacy about the kind of care we need, things will not change. And things must change!

It’s unfair to have worked so hard to “beat cancer” (whatever that means) or, in the case of metastatic breast cancer, to keep it at bay for as long as possible only to find out you will be dealing with a lifelong condition and disability.

So yes, I’m pissed off!

I’m pissed I have to take time out of my week, twice a week, to keep my lymphedema under control. I love my OTs at Shechter Care with all my heart and they are amazing, but even they are hoping they can soon get me to the point where I don’t have to come so often.

I’m pissed I have to take time out of my day, nearly every day, to pump my arm. I’m pissed I have to go to sleep every night with my arm wrapped. I’m pissed I have to roll my wraps every night.

I’m pissed when I look in the mirror, one of the only things I see is my big arm. Nothing else. I’m still pissed this happened to me. I’m still pissed I didn’t get the care I needed at a time when this could have been kept under control.

I’m pissed I don’t feel beautiful.

Congratulations, to me.  I’m alive and yes, I’m grateful.  But it comes with a huge price.

I just wanted to go back to my life. That would have been prize enough. But no, I also got breast cancer’s booby prize – lymphedema.

Thanks a lot, breast cancer.

You might want to read, Lymphedema, What’s a Breast Cancer Patient’s Real Risk?

Do you deal with breast cancer’s booby prize, lymphedema, and if so, how has it changed your life?

Was your lymphedema risk discussed prior to treatment and were baseline measurements taken?

Carries’ Bio:

Carrie is an actress, teaching artist, mother and breast cancer survivor. She found the lump in her breast herself just one month after weaning her son from breastfeeding. At 37 years old, she was the 8th person in her family to get breast cancer and by far the youngest. After getting the platinum package of cancer treatment (a mastectomy, chemotherapy, herceptin, radiation and hormone therapy), Carrie is happy to say there is no evidence of disease. Carrie loves to travel, go on adventures with her son and binge watch TV shows with a pint of ice cream in her lap.

Visit Carries Blog:  My Little Bs Have the Big C:  A breast cancer blog for young women

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NOTE FROM NANCY: My newest book, EMERGING: Stories from the Other Side of a Cancer Diagnosis, Loss, and a Pandemic is waiting for you to give it read! Click on the image below to get your copy today!