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Lymphedema, breast cancer's booby prize

Lymphedema, Breast Cancer’s Booby Prize – A Guest Post by Carrie Ellman-Larsen

As you probably know, March is Lymphedema Awareness Month. For the past few years, I have 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 so important for everyone to better understand this life-altering condition called lymphedema, which sometimes develops after treatment for other kinds of cancer as well.

This year, it’s my pleasure to feature a guest post from my 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.

Do you have lymphedema and if so, how has it changed your life?

Was your lymphedema risk discussed and were baseline measurements taken?

Do you have any questions for Carrie?

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.

Be sure to visit Carries Blog:  My Little Bs Have the Big C:  A breast cancer blog for young women

Like Carrie’s page on Facebook & follow her on Twitter, too!

Featured image via My Lymphnode Transplant’s Facebook page

 

Breast Cancer's Booby Prize: Lymphedema, Guest post by Carrie Ellman-Larsen
Carrie & her son enjoying themselves. Love those smiles!

 

6 things you may not know about lymphedema
Lymphedema Basics

11 thoughts on “Lymphedema, Breast Cancer’s Booby Prize – A Guest Post by Carrie Ellman-Larsen

  1. Hi Nancy, I don’t have this condition (as of now). I was warned about the possibility of developing lymphedema. My surgeon told me this can happen to me even years later. This is why I was asked not to take blood pressure on that arm and not to draw any blood from it either (and not to carry heavy loads!). All my doctors made a note of that and now my left arm is all beat up. Because I took all my chemo on my left arm and now the veins developed scar tissue (like Carrie said, thanks breast cancer!). I do pamper my right arm.

    It’s so unfortunate that we have to deal with the collateral damage and that sometimes this can last a lifetime. Carrie is also a young mother with a young child. I am sure lymphedema has interfered with her quality of life, at all different levels. This is unacceptable!

    One question for Carrie: I know her child was very young when she was going through cancer treatments. Does he ask questions now that he is older? Does he ask about her physical changes and how does she cope with that, considering he might still be too young to understand?

    Wishing Carrie well. And really hoping her condition improves. xo

    1. Rebecca, Oliver has always asked questions about my breast. He was 18 months old when I was diagnosed and 20 months old when I had my mastectomy. That was the age where he followed me everywhere. I mean, EVERYWHERE! So, after my mastectomy, he saw my scars. He saw my drains. He had just stopped breastfeeding and was still attached to my body. He saw my breast and pointed, “Mama, BIG boo-boo!” I was always very honest about it.

      Now that he’s 4 years old, he asks a lot of questions. He asks why I have a swollen arm. He asks why I need surgery. He asks what happens in a surgery. He asks about the medicines I take. He asks if I will have more surgeries. He asks if I’m in pain. He’s very curious and attuned to what is going on with me.

      I try to be developmentally appropriate with all of my answers but I also don’t want to lie to him. I try to be as honest as possible.

      He also recently saw a picture of me when I was going through chemo. He doesn’t remember me without hair. He was shocked.

      So, he’s just going to get more curious and ask more questions and I have to deal with that. It’s hard because I’m trying to figure it out.

      The good thing is that because of all this he’s so sweet and gentle. His teachers described him as “considerate” which they said they’ve never used to describe a 4 year old. I take that as a win!!!

      Thanks for reading my guest post.

  2. Thank you for raising the awareness of Lymphedema. I was not warned about it before my quadrantectomy. Several months down the track, my breast was sore but numb, strangely dimpled in one section, felt itchy half an inch under the skin near the scar, all the “usual stages of recovery”. Six months after radiation finished, my oncologist diagnosed breast lymphedema. The fluid kept building up in my breast because all the drainage routes were now blocked by scar tissue. Luckily for me the solution is just specific massage several times a day, to remove the fluid. I have now learned that having the cancer removed at the very beginning was just the start to a very long journey with many pot-holes along the way … unforeseen and non-warned side effects of the treatments and drugs. The bright side? I am alive and since my dx, I have been given four grandchildren with one more due any tick of the clock. I don’t care what cancer throws at me – I am alive and loving life!

    1. Carolyn,

      I’m glad you are enjoying life. 4 grandchildren with one on the way?!?! That’s what I fought for. I want grandchildren one day! Good for you!!! I’m also glad you are able to manage your lymphedema and that you are feeling well.

      Thank you for reading my guest post!

  3. Thank you so much for addressing everything how I feel! I am single and never been married. Yes, I am alive, but I am not happy at all. Lymphedema has caused so much problems in my life. I now finally have a wonderful therapist. Shame for over 10 years I never had the help I should of gotten. I just try to keep learning and gaining knowledge.

    1. Annette, life after cancer is so hard, especially when dealing with collateral damage like lymphedema. I’m glad you have a good therapist to help. I can’t imagine what it was like for 10 years without the care you needed. Crazy!!!!! Thank you for reading my guest post. Wishing you health and peace (and swollen free days!).

  4. In general, breast cancer patients receive more warning and preventive care about lymphedema than the gynecological cancer patients. I am an ovarian cancer survivor and have lymphedema in my right leg from my hip to below my knee. Like you, the doctor never mentioned this possibility, even though she removed 54 lymph nodes from my abdomen and groin, and ignored me when I asked what was wrong with my thigh. Yes, I am a survivor, 5 years now, but lymphedema has changed my entire life – self-image, clothing that I can wear, time-consuming treatments, custom compression stockings every day, night garments, daily regimens, and so on. I try to live as normally as I can and do most of what I once could do, with modifications, but it isn’t the same. irony – all of my lymph nodes were clear and free of cancer.

    Good Luck to you! And thank you for bringing attention to this ignored condition.

    1. Michele,

      I’m so sorry you have to deal with this. I feel your pain. You should have been warned about the side effects of lymph node removal. Our doctors need to do better. Thank you for sharing your story.

      Carrie

  5. 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!!!!

    1. 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

  6. 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

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