Living with Lymphedema

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 also 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 a bit about what it’s like for her living with and managing lymphedema.

I hope by reading Suzzann’s words, someone else out there 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 truly 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, please don’t be ashamed or embarrassed because you have lymphedema. It’s not your fault and there is help available. 

A bit 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.” 

To learn more about the Renewal Center, visit their website here and be sure to like their page on Facebook.

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, a guest post by Suzann Cummings
Suzzann’s night sleeve

 

Lymphedema Treatment Act
Click on image to learn more about this important Bill.

 

 

 

 

 

 

32 thoughts on “Living With Lymphedema – A Guest Post by Suzzann Cummings

  1. This is a wonderful article. I too have developed lymphoedema following breast surgery and find it the most frustrating effect of breast cancer! I am delighted I found this blog!

    1. Thank you Sarah for your kind words. Yes, LE is quite frustrating and sometimes downright depressing. But, there is hope…because there’s more then just a few people living in this world with this condition, and even more advocating for proper care and the educating of a condition that is life long. Be Well~

  2. Gosh your story sounds so familiar to mine, but my lymphoedema is in the leg after cancer of Uterus… I live in Australia and i have only been able to have the treatment i do via private health cover… Like you i wish that one day people will understand.. Helen

    1. Helen, with our voices and actions, we will be heard. Education is so very important. It’s getting better, but we’re not there yet. And yes like you Helen, I wish people would understand.

  3. Thanks Nancy and Suzzann. I have very mild lymphedema of my left arm following bilateral mastectomy and lymph node removal in November 2010. It was diagnosed the following March 2011 and I was treated by a physical therapist but I only learned about LANA certification in your post. I wish the sleeves were covered by insurance. I like to have several so that I don’t have to wash one every day but you are only supposed to use one for about 6 months. They are expensive. And they definitely advertise your condition.

    1. Meg, I’m glad that this post has helped you about PT’s that are LANA certified. Very important when dealing with LE. Your insurance does not cover your garment? Another reason the Lymphedema Treatment Act is so crucial! Please speak with the social worker at your hospital/treatment facility and your PT. There’s other recourses that they should know of to help you get your garments at a reduced cost. Also, if you live in or around a major city, you could look up online for a medical supply company in your area-they also may help guide you to a distributor of the garments who in turn help those that cannot afford or have no health insurance. It’s not easy, but remember how important it is to have that garment.

  4. Thanks so much for this Suzanne. If it helps: I had threee separate “flares” and they all resolved. What I learned about then was the Vodder method of manual lymph massage, which is the form of therapy taughtby the LANA certification process.

    Sadly, there isn’t enough information and research about lymphadema and breast cancer patients are actually a minority of those affected. By far the largest population? Men with prostate cancer.

    The drug companies aren’t interested in funding this, obviously since it’s not a profit center for them.

    I have a question for you based on something I heard a lymphadema therapist say this past weekend: does your arm ache? She said lymphadema was painless. At one point I had fluid underneath my shoulder blade. That was not painless. And my arm ached. So I’m curoius about your experience, there.

    Thanks so much for this,
    Jody

    1. Thanks Jody for your feedback. Yes, you are right about the pain and ache associated with LE. Yes, when I’m at my fullest I more then ache-I hurt! From my shoulder down into the back side of my arm. Compression is what helps alleviate the pain. Ibuprofen or Tylenol doesn’t help. I’ve discussed this with my PT and explained to her that the pain is real with LE. I’m very familiar with the Vodder method as 1 of our Board members is from Vancouver, BC and also is an instructor. Thanks again Jody-Be well~

  5. This is an excellant article. Knowing there is help for this condition is key to being successful in treating it. I too had 28 lymph nodes removed 10 years ago. After getting on an airplane shortly after my chemo was over, my arm and hand swelled twice it’s normal size. Since then I work out 3-4 times per week and lift weights. This exercise helps. That along with wearing a compression sleeve at night, is key. Knowing the first signs of swelling and getting help for a therapist or using a sleeve, is also key. Thanks for sharing your story and I wish you well.

  6. This is such a great post. The more educated we become, the better. Like Suzzann, I have lymphedema. I would not be treated or seen by any therapist other than a LANA-certified one. It’s too important an issue. I used to be self-conscious about my lymphedema, but not anymore. I have other issues with which to contend that overshadow even the debilitating and cosmetic effects of lymphedema. It’s definitely a condition to be considered seriously. If you have a swollen limb after any surgery (cancer-related or not), trauma, or radiation, be sure to have it checked out. xo

    1. Thank you Jan for your comments 🙂 You have done so much advocating on behalf of those living with lymphedema-you’re truly amazing and such an inspiration! I hope to someday, not be so self-conscience of my arm and hand. Some days are better then others. Thank you for everything you do! Be well my friend, you’re in my thoughts. x

  7. yes I developed lymphedema after a lumpectomy and 31 nodes removed. I seached out help and received great care at UCSD. It is controlled but my hand and fingers get very swollen. My insurance after $150 deductable covers the sleeve but not the glove!! they cost $150 each and wear out fast, also they dont seem to make a glove that really helps can anyone help?

    1. I wear a glove and sleeve. I need long finger stubs, and the only one I have found that helps is the Mediven 95 Glove with Full Fingers Model 760. You’re right – they’re not cheap, and they get ragged looking really fast.

    2. Angela, You mention that the glove does not help. I’m going to assume that you are measured by your PT. Also, is it a glove or gauntlet that you wear? Yes, they do wear out quickly (make sure not to use fabric softner or put your garment in the dryer)-but the insurance company will only cover the sleeve? Talk with your PT (if you haven’t done so already) on your glove not helping you. Maybe they can offer a suggestion, maybe a stronger compression grade for just your hand-even additional wrapping if necessary.

  8. I am a 4-year survivor of ovarian cancer. And the cancer has spread to lymph nodes. Needless to say, this last year I am experiencing lymphedema in my left leg. Neither my family doc nor my oncologist offered any suggestions, but happily I had read about LANA certified therapists and found one 35 miles from home. I now wear compression stockings and sometimes a girdle to control the swelling.

  9. Me, too, Suzzann – TNBC and lymphedema. I have great insurance now, but I worry that I might not get the care I need when I’m older unless the Lymphedema Treatment Act passes.

    All the best to you!

  10. Thank you for bringing a greater awareness to lymphedema. I noticed that some of my fingers were swelling after my lumpectomy, but I didn’t want to complain. Fortunately, my sister is a nurse. When she saw the swelling, she immediately sent me to my doctor. That resulted in physical therapy and learning how to manipulate my hand and arm to properly drain my swelling. I was so fortunate to get proper care and I now go to weekly exercise classes designed to help me move on from cancer. I can’t tell you how blessed I feel that I was able to get this under control. I now share about it because people need to recognize this condition before it becomes a problem.

    1. Lanie, I’m so glad your sister encouraged you to get medical attention right away. That is so important as lymphedema is easier to manage if you start treating it earlier rather than later, as you well know. It’s my hope that more people become aware of this risk and become educated about what symptoms to watch for. I’m also hoping for better patient access to a trained therapist when one is needed. Thank you for sharing about your experience in order to help others. And thanks for commenting here too.

  11. Suzzann,

    Thank you for this excellent post and sharing your moving story, and thank you Nancy for giving Suzzann space on your blog to do so. I also have had flare-ups, though “knock wood” not recently. I went to physical therapy and was taught the manual lymph massage technique, as Jody was.

    Like you, nobody warned me about lymphedema until my arm swelled up and I was in incredible pain. I was told not to have blood pressure taken from my right arm and not to have needles inserted into that arm, but not why.

    Much more needs to be told to patients about lymphedema. Thank you for all the wonderful work you are doing.

    1. Beth, Sounds like you were told the same things I was. No one went on to explain why I was to avoid these things… and I didn’t think to ask at the time. I’m sorry you’ve had some flareups and pain, but I’m glad things are under control now. I’m grateful to Suzzann for sharing her story and helping others feel less alone. Sharing matters so much. Thank you for commenting.

  12. 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.

    1. 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.

  13. 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.”

    1. 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!

  14. 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.

    1. 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 http://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.

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