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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.

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

Breast Cancer's Booby Prize: #Lymphedema, Guest post by Carrie Ellman-Larsen #Lymphedema #breastcancer

Carrie & her son enjoying themselves. Love those smiles!

#Lymphedema, Breast Cancer's Booby Prize #cancer #breastcancer #le

Linda C Boberg

Wednesday 23rd of March 2022

Right on point! I love the term Boobie Prize. I have also looked around waiting rooms and don't see anyone else with a garment. Where are they? This is one effuck I wish I could get rid of, but ...

Nancy

Wednesday 23rd of March 2022

Linda, It does fit, that's for sure. I love Carrie's guest post. It is surprising we don't see more people wearing compressions garments. Yeah, where are they? Maybe we just don't notice folks who are. I'm sorry you are dealing with this nasty booby prize. Sure hope you can get it under control again. Thank you for sharing. You're helping others who read your comments and terrific guest post.

Stacy Pendarvis

Wednesday 12th of April 2017

Carrie, great post... you express my own personal feelings perfectly. It's only been a couple of years for me and already I wonder how people have lived with lymphedema for so long and not much has been done to help them. I have had a lymph node transplant... which helped but did not cure it... and 6 days ago a "debulking" (essentially liposuction of my arm but termed debulking so insurance would cover it...which says a lot about where we are still with lymphedema). I'm praying after the 4-6 weeks of wrapping and the 2 months of swelling that my arm will be noticeably smaller, but we just have to wait and see. My lymphedema surgeon and I discussed all the activity and trials going on currently with lymphedema and that they honestly just don't know how to cure it yet, however that maybe in 10 -15 years they will. Bittersweet news I suppose. It's great they're doing research and may one day know how to cure it or prevent it, yet sad that we may all have to live another 10-15 years with it. Thank you for being an advocate and bringing more awareness to this devastating condition.

Beth Gainer

Saturday 1st of April 2017

Carrie,

Thank you so much for such an important post on such an important topic. While I was diagnosed and during my planning for the initial surgery where lymph nodes are removed and throughout radiation, no one told me about lymphedema. No one. All I was told was no needles in that arm and no blood pressure taken from my right arm. I didn't know why and didn't ask -- because I was too busy thinking about cancer.

I found out about lymphedema when my hand swelled up to the size of a grapefruit and I was in incredible pain. I had a fantastic PT who did an informational talk about lymphedema, manual lymph drainage, and taught me how to do this. Luckily, the PT worked, and the swelling had gone down considerably. I do have a compression glove and sleeve now.

I'm angry that those in the medical field never gave me that informational talk before my surgery. I guess everyone is so concerned with treating the cancer, they don't bother to tell us about the collateral damage.

Thanks for an outstanding post.

Eric

Wednesday 29th of March 2017

Hello, Congratulations to all of you for beating cancer. Unfortunately lymphedema is a debilitating condition that can arise at any time after treatment for cancer. Conservative management with manual lymphatic drainage and compression therapy are extremely helpful but there are now options to treat and potentially cure lymphedema. The two primary options are lymphovenous bypass and vascularized lymph node transfer which have been shown to significantly improve lymphedema. There are currently only a few centers in the country that offer these surgeries including the hospital where I work. Please let me know if you would like more information regarding these treatment options.

Eric Chang, MD

Paula

Wednesday 30th of March 2022

@Eric, I had the VLNT procedure in November 2020, almost 3 years after my BC surgeries. The recovery is long and I am still doing follow-up with the plastic surgeon. I definitely notice a difference, am hoping it will continue to improve.

I was not prepared for lymphedema, and decided I was willing to give this a try to combat it

C Elizabeth

Wednesday 13th of March 2019

Dr Chang

Thank you for information regarding new treatments. Last thing a cancer patients wants is more surgery/ treatment. Your picture reflects your youth. I hope in the years To come you will be the Physician known for preventing Lymphedema. Best to you.

Lois Carpenter

Thursday 23rd of March 2017

Hi, I've enjoyed reading your story. Thank you so much for sharing this "cancer booby prize". I like everyone else won the prize without knowing Lymphedema even existed not alone I would spend the rest of my life dealing with this painful, debilitating, life changing event. It's now been 25 years and I'm still being told they don't know much about it, be thankful you're alive, deal with it, it could be worse! I was NOT told by my Dr. this could happen so I went through surgery and radiation thinking I would beat this and once healed and done with everything I'd move on with my life, Wrong....I'm reminded everyday, it's in my face, my heartbeat throbs in it with pain everyday, everything I put on to wear has to be 2 or 3 times larger so it fits over the swelling, dealing with questions about the compression garment I wear,, most people have NOT heard of Lymphedema so they don't understand what all goes on with it. Lab people want to take your blood or blood pressure in that arm, when you say NO, they say after 5 years it's ok to use that arm. It's NEVER ok to use that arm again.....NEVER....that's a long time. God Bless every person dealing with this debilitating , painful disease or whatever you want to call it. I pray for more research, more insurance companies paying for all the expensive garments, treatments, pumps, everything you need for manual wrapping, these are medically needed to manage this wonderful "booby prize"! God help us to keep smiles on our faces!!!!

Carrie

Tuesday 28th of March 2017

Lois,

The first thing I want to say is, congratulations on being 25 years post cancer. That is truly wonderful.

This does not, however, negate the fact that you are dealing with a life-altering, debilitating condition.

You mentioned having to buy larger clothing. My question is, are you getting the care you need? If you need to find a PT/OT, I can ask my therapist to help you find someone near you who deals with lymphedema. Please let me know if you would like this.

Carrie

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