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Living With Lymphedema – A Guest Post by Suzzann Cummings

One thing I love about writing a blog is having the opportunity to share my space from time to time in order to share the stories of others. This is why I’m so pleased to feature friend and fellow advocate, Suzzann Cummings,  in today’s guest post. Suzzann shares what it’s like for her living with and managing lymphedema.

I hope by reading Suzzann’s words, someone out there living with lymphedema might realize that in this they are not alone either.

Living With Lymphedema 

by Suzzann Cummings

Seven years ago, my life changed as I know it. That’s when I was diagnosed with breast cancer, Triple Negative Breast Cancer. Since I came from a fairly long family history of women who were diagnosed with breast cancer (my mother, paternal aunt and two cousins), I felt I had pretty good understanding of the long journey I was about to embark upon.

My decision was to have a bilateral mastectomy to remove a rather large tumor, along with a multitude of lymph nodes – too many to count – as my surgeon told me, but the pathology numbers didn’t lie…22 to be exact.

Little did I know, I actually had very little knowledge of what was waiting for me around the corner once the surgeries and treatments came to an end.

Now, I’m not going to play the blame game, but very little was mentioned about my potential risk for developing the condition called lymphedema.

My surgeon did explain to me that there was a chance of developing this condition, but historically most of his patients did not develop it. At that time, I was more concerned about the surgery and chemo then I was of a little arm swelling and therefore, I asked very few questions and did very little to educate myself on it.

After I finished chemotherapy and built up enough strength, I received the go ahead from my doctors to have reconstructive surgery. The surgery was done on an outpatient basis and all went rather well. That evening at home, I noticed that I had developed swelling in my left hand. One thing I was very adamant about at the hospital prior to my surgery was that no blood pressure was to be taken on my left arm, or any blood drawn.

Two days later at the plastic surgeons office, I mentioned the swelling in my left hand. Never in a million years did I think I would be walking out of his office with a referral in hand to see a LANA certified physical therapist.

And so, thanks to cancer, I embarked on another journey; this time it was with a life-long incurable, but treatable condition called lymphedema.

These days, I manage and control my lymphedema by wearing a compression sleeve and glove. My garment is worn anytime I do a lot of repetitive motion or heavy lifting to help prevent major swelling and discomfort. I also have a night sleeve, which is made of a thick, quilt-like material that I wear as needed. I perform MLD or manual lymphatic drainage on myself regularly to help move the lymph fluid out of my fingers, hand and arm.

Maintenance and being vigilant in caring for your affected limb is important in living with this condition, as well as keeping any flare ups under control.

I’m one of the fortunate individuals who has been educated by a LANA certified physical therapist. She has been an amazing teacher by educating me on the proper care of my arm, as well as the importance of a healthy, low sodium diet and exercise.

By following these guidelines, it helps in managing the swelling, but it also helps me to feel a little bit better about myself, as I’m quite self-conscience about the appearance of my arm when it’s at its fullest. The stares and the questions are something I’m still learning how to deal with and handle.

After all, there’s no guide book after cancer on how to deal with this body altering condition.

What frustrates me most is that there’s not enough talk about lymphedema. 

There is not enough education about lymphedema and there are certainly not enough doctors talking to their patients prior to having breast cancer surgery and the possibility of developing this incurable condition.

Lymphedema can be controlled, but if left untreated, it can be very serious–even deadly.

My hope is that someday every doctor, oncologist and medical professional will address with their cancer patients the tell-tale signs and symptoms of one of cancer surgery’s potential lingering side effects–lymphedema.

And lastly, living with lymphedema is challenging, but please don’t be ashamed or embarrassed because you have lymphedema. It’s not your fault and there is help available. 

About Suzzann Cummings:

Suzzann’s focus these days, is on advocating for the Lymphedema Treatment Act and for the passing of the Bill that would entitle those with this condition access to the much needed medical care with a LANA certified physical therapist, as well as obtaining compression garments, which in itself is quite costly.

Suzzann is an active member of the State of Illinois Advocacy Team for the Lymphedema Treatment Act. She is also on the Board of Directors of LANA – Lymphology Association of North America. She also serves on the Board of Directors of The Renewal Center – A Wellness Oasis for Cancer Survivors.

The Renewal Center offers a support program devoted exclusively to people who have finished their day-to-day treatment and are trying to move forward with their lives. The end of treatment is not the end of dealing with healing.” 

Do you have lymphedema?

Have you consulted with a LANA certified therapist or any physical therapist following cancer surgery?

Do you feel self-conscious about your body image due to lymphedema or your cancer treatment?

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Living with #Lymphedema #LE #breastcancer #cancer

Don’t be ashamed or embarrassed. It’s not your fault and help is available.

Lymphedema Treatment Act

Click on image to learn more about this important Bill.

Linda C Boberg

Wednesday 9th of March 2022

Great post. Almost everything you wrote about happened with me. I know the surgeon mentioned lymphedema and I, too, thought I could handle the swelling. I got it under control (wearing that quilted night thing and sleeve and glove), but my new glove came in at the wrong compression strength and my hand has ballooned. I am so angry. Now I have to check that stuff???

Nancy

Thursday 10th of March 2022

Linda, I knew you'd relate to Suzzann's piece. Don't blame you for being angry about that wrong compression. Geez. Good luck getting the LE under control. Thanks for sharing.

gemma

Saturday 1st of November 2014

Hello, i see no one has posted anything for a while but i would really appreciate it you could give me some advice. I am 30 years old and had breast cancer at 26. I had 6 rounds of chemo, radiotherapy and a lumpectomy and lymph glands removed. I have recently had an infection in my arm, and although i did everything right and took antibiotics straight away i have developed some swelling in my hand and arm. i have been to see the lymphodema nurse and she has advised for me to do the massage and wear a sleeve and sometimes a glove to help move the fluid. She said she cannot say whether this will be a temporary thing or a permanent arrangement as yet as the infection has only just gone. I feel completely devastated that this has happened. i dont want to wear a sleeve for the rest of my life. I thought i had beaten the cancer but i feel like this is another reminder that i will never be the same again. I changed my whole life after treatment and started a new job etc to get away from everyone knowing my business and now i feel like im going to have to tell people at my new job which i really didn't want to do. i would really appreciate anyone elses experience with this. Do i have to wear a compression garment all the time? can i just wear it at home or at night? any advice would be much appreciated.

Nancy

Saturday 1st of November 2014

Gemma, I'm sorry to hear about your lymphedema issues. It feels devastating, but others are out there who can and do understand. Can you find a support group of some kind online, specific to lymphedema? I can't answer your question about how often or how long you need to wear a sleeve, but your medical team or your LE nurse should certainly be able to guide you there. Also, check out LympheDIVAs at www.curediva.com There are some stylish sleeves available. Sorry to not be of more help. I do have several posts on LE with links included in them. Maybe some of them will be helpful. Good luck to you and thank you for sharing.

jude

Monday 22nd of April 2013

Nancy, Thank You! I am a fan. Your blog is so helpful. Really engaging. And thanks for posting "No Lifeguard on Duty" for National Poetry Month. Yes, I do love it. I am a poet, too. Next week (still in time for National Poetry Month,) I have a poem appearing in THE CANCER POETRY PROJECT 2, "Still life with punchline."

Nancy

Monday 22nd of April 2013

Jude, Thanks for the kind words. It's great to hear that your poem is getting published. Congratulations! I hope you'll leave a link on my poetry post so we can read it. I would love to!

jude

Sunday 21st of April 2013

My partner was referred to a Lymphedema class by her breast surgeon, which we attended before she had her mastectomy(and axillary clearance.) She also had a sleeve made by Telesto. It was expensive,but well made. It was not covered by insurance because she doesn't have a diagnosis of lymphedema, she is simply trying to prevent it (she is a musician.) She does lymph drainage regularly after she plays guitar, and also any time she feels tightness in her hand. So far so good.

Nancy

Sunday 21st of April 2013

jude, I'm so glad to hear your partner was referred to a lymphedema education class before her surgery and that you both were able to attend. That is marvelous and sadly, not that commonplace. I hope all her efforts to prevent lymphedema continue to work for her. I'm thinking my insurance did cover the cost of my first sleeve and gauntlet - though I was not diagnosed with lymphedema either, but was in prevention mode. But, now I'm wondering about that as accurate memory fails me... Thanks so much for sharing.

Dawn Bradford

Friday 5th of April 2013

Great post! Shared on our social media channels.

Nancy

Friday 5th of April 2013

Dawn, Thanks so much!

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