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Musings from a Lymphedema Lady – A Guest Post by Jan Hasak

The following is a guest post by Jan Hasak. Jan is a breast cancer survivor, mother, attorney (presently inactive), author, motivational speaker, volunteer, advocate and someone I am happy to call a friend of mine. Jan was also recently diagnosed with mets. Lymphedema is another one of those words I’m not sure I had even heard of before my cancer diagnosis. It’s a topic much neglected and misunderstood. This post is packed with valuable information, so please read and leave Jan your thoughts and questions.

Lymphedema: It’s a word always with a red squiggle beneath it. Computer programs don’t recognize it and neither do most people.

So what is it, and why should breast cancer survivors care?

Lymphedema is the swelling of a human body part caused by an abnormal accumulation of fluid, proteins, and cellular waste in the tissues under the skin. It occurs when there is a problem with the lymphatic system caused by one of the factors below:

•  The failure of lymph vessels to develop properly

•  Damage to lymph vessels by trauma, surgery, or infection

•  Removal or destruction of lymph nodes, usually during treatment of cancer

The lymphatic system

Most of the advancements made in the understanding and treatment of lymphedema result from research on those who acquired lymphedema as a complication of breast cancer treatment.

I developed lymphedema over 14 years ago. This happened about a year after I had had radiation under my armpit from which 14 lymph nodes were removed (axial dissection) to see if my breast cancer had spread. My underarm operation was performed before the sentinel node biopsy procedure (now standard practice) was even a gleam in a surgeon’s eye.

I don’t recall that my small-town surgeon, or the radiation oncologist gave me any pamphlets about lymphedema after I was treated. The surgeon did warn me that I should not have blood pressure taken or blood withdrawn from my left arm. What he failed to mention were other risk-reduction practices that might have made a difference, such as those mentioned in the National Lymphedema Network position paper on risk reduction practices.

To reduce the risk, many therapists advise patients to have their arm fitted for a compression sleeve to be donned during plane rides longer than four hours. But newer findings indicate that cabin pressure at high altitudes may not make a difference in swelling. In addition, survivors may wish to wear the sleeve when lifting heavy objects with that arm. Again, one should consult the NLN position paper mentioned above as well as Step-Up, Speak Out on risk reduction practices to get current, reliable doctor-approved advice.

I used to wonder if all my plane trips to Europe on business in the year between my surgery and the first appearance of arm swelling contributed to my arm lymphedema. Perhaps the accumulated travel combined with garden pokes pushed my lymphatic load over the edge.

But many experts in lymphology now are surmising that those who develop lymphedema do so because of a genetic predisposition.

Also, some people are born with more lymph nodes than others, providing a more protective effect. Both my parents had varicose veins and my father’s legs had to be amputated due to poor blood circulation, so maybe their combined genetic pool made me more susceptible.

Here are some common misconceptions about lymphedema–and the skinny on the truth.

Myth 1: It is a curable condition. While it can be managed, lymphedema is a lifelong condition that will not go away over time. In fact, because it is a chronic progressive condition, even mild cases can eventually escalate and have serious consequences if not properly treated.

Myth 2: It will only develop within the first five years after surgery and radiation. Although we wish this were true, people can develop lymphedema at any stage in life. I have heard of a cancer survivor who 30 years after her treatment, developed lymphedema after reaching up to pull down a garage door. It may be uncommon, but it can happen.

Myth 3: Lymphedema will make one’s arm huge. One-size-fits-all is not true for lymphedema. Like cancer, lymphedema has various stages. Stage I is mild, Stage II moderate and Stage III severe. I’ve seen pictures of a lymphedemous leg grossly misshapen, and I’ve seen cases where I could hardly tell the person had lymphedema. I’ve been fortunate in having only a mild case.

Myth 4: The sentinel node biopsy that only removes a few lymph nodes stops lymphedema from happening. The procedure, while reducing the incidence of lymphedema, has not eliminated it. Genetic predisposition to any disruption of lymphatic flow may tip the scales.

Myth 5: A person at risk for lymphedema or who has it should not carry heavy objects. This has recently been disproven. In fact, gradual lifting of weights with a compression garment helps with lymphatic flow. See the most recent findings on lymphedema and exercise.

Myth 6: Lymphedema can be cured in six weeks, allowing the patient to move on with life. The gold standard for lymphedema treatment is complete decongestive therapy, which consists of two stages: a clinical phase where a lymphedema therapist performs manual lymph drainage and bandaging, and a self-care phase where the patient or caregiver performs the daily massage and bandaging. The clinical treatment may only take 4-6 weeks, but managing lymphedema is a lifelong process. It can be kept under control, but depending on the severity, may require wearing a compression garment 24/7 and performing daily massage and stretching exercises. Daily skin and nail care is a must for all people with lymphedema.

I am able to get by with wearing just a daily compression sleeve on my arm. I also perform exercises that are beneficial for lymphedema, including active-elongation stretches on a stability ball and swimming. But everyone responds differently.

Online resources on lymphedema abound, e.g. the NLN site, Lymph Notes, Step Up, Speak Out, and Vascular Web on Lymphedema. Online support groups include Lymphedema People and Lighthouse Lymphedema Network. Also, my website includes a “Lymphormation” section and a “Resources” section on lymphedema, products, support groups, and blogrolls. We’ve come a long way on the Internet since I was diagnosed in 1997.

If you notice any swelling in a limb after removal of lymph nodes, even after a sentinel node biopsy, see a surgeon right away. The earlier you catch it, the better. If the doctor does not listen, go to another M.D. who will. And if you are diagnosed, insist that you get a prescription for lymphedema therapy. I’m glad I did.

Never despair. You can lead a normal life after lymphedema. Some patients turn the anger they feel toward their surgeon in not informing them of lymphedema into legislative and other action to ensure more research is directed toward this under-served condition. Others start Web sites and blogs to provide needed information to patients at risk and those with lymphedema. Still others go on to live their lives without fanfare. All of these are terrific responses, just as they are for breast cancer survivors.

Whenever I type “lymphedema” on the computer and get that notice of a possible misspelling I right-click it and add it to the dictionary. Eventually every computer app I use will get the message, as I hope all people will.

Jan Hasak Motivational Speaker, listed in the 2011 National Cancer Survivor Day Speaker’s Bureau, Reach to Recovery Volunteer for the American Cancer Society, Lymphedema Patient-Advocate for the National Lymphedema Network, Board Member of Lymphedema Advocacy Group to promote awareness of U.S. federal legislation on lymphedema and Author of:Mourning Has Broken: Reflections on surviving breast cancer and The Pebble Path: Returning home from a forest of shadows.

Website: http://janhasak.com/

Blog: “Mourning Has Broken: Sharing Reflections on Surviving Cancer”

What are your thoughts, comments or questions about lymphedema?

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Lymphedema - A guest post by Jan Hasak
image from vascularweb.org
Musings from a lymphedema lady, a guest post by Jan Hasak
Understanding lymphedema

42 thoughts on “Musings from a Lymphedema Lady – A Guest Post by Jan Hasak

  1. Thanks for this post, Nancy. I developed lymphedema after my 6th round of chemo. I developed a severe allergic reaction to the prophylactic Cipro I was on. It made last Christmas difficult, but I’ve learned to manage it with daily massage and bandaging.I’m travelling to Europe this summer and hope the heat and altitude don’t make me swell. But if they do, I know how to deal with it.

    1. Tonya, I’m sorry you developed lymphedema. I’ve traveled to Europe with this condition and was able to keep the swelling under control by bandaging or using another nighttime compression garment on my arm during the flight. You should get a prescription for the garment from your doctor before you leave to make the garment legit in the eyes of the TSA. If you don’t want to bother with security, you can also wear your regular daytime compression sleeve and then on top of it put on an old one that is more stretchy. That helps me as well. And drink lots of water and minimize salt intake if you are in the heat. Bon voyage, Jan

      1. I am to have eye surgery in the morning and I have just been diagnosed with Lyphedema. I have not been to get it treated yet. Should I cancel surgery and tend to the swelling in my arm. I have had radiation, lymph nodes out, and bilateral mastectomy. Please help.

  2. I didn’t really know about lymphedema until a few weeks ago when my mom (Nancy) was telling me about it. Most people don’t even know it exists, so thanks for the info!

    1. You are very welcome, Lindsay. I like to tell everyone who is first diagnosed with breast cancer about the associated risk of developing lymphedema.
      Jan

  3. Jan, thanks for putting this together. It’s important for all of us to know that anyone who has had surgery and/or radiation near any of our lymph node groups, like the armpit, groin, neck or chest, whether or not lymph nodes are removed, is at lifelong risk for developing lymphedema. Judy Nudelman, a physician and friend who is part of the Step Up/Speak Out board, has suggested that we should all be measured in both extremities before treatment begins, so that we can be accurately diagnosed afterward in case lymphedema starts. Another associated problem is axillary cording, which I still develop from time to time. This is good, important info.

    1. Kathi, you are so welcome. Many people don’t know there’s a lifetime risk. I have a friend Bonnie Pike who is also on the board of Step Up/Speak Out, which is such a great source of lymphedema education. I’m so happy that as a result of advocacy, our local breast surgeon now measures both arms as a baseline before treatment begins. Axillary cording is definitely another associated challenge. Sorry you have to deal with that. Thanks so much for your comment.
      XOXO,
      Jan

  4. Jan, thank you so much for this. You have inspired me to follow up with my doctor. I have been putting it off because my swelling has been, for the most part, minor and manageable, but you are so right that one doesn’t want it to get worse. Excellent post!

    1. Cyn, I’m so pleased you are going to follow up with your doctor! That’s a smart move, just to make sure your lymphedema doesn’t progress. Not everyone’s does, but it’s better to be safe than sorry. Thanks so much for joining the discussion on raising lymphedema awareness.
      Jan

  5. I developed Lymphedema long before my diagnosis with Breast Cancer. In fact my GP shrugged it off told me I must have twisted my arm when I fell in a move at that time months earlier. Even the large lump I had on my side he said it was “fatty tissue” that many women get. I went to the Triage at our hospital,on an unrelated illness. He looked at my arm asked if I had Breast Cancer. I looked at him like he was mad! He also checked my side where the lump was suggested they do an Ultra Sound right then to rule out a potential blood clot. At that moment I knew I was in trouble. My arm was very sore and achy swollen that i could no longer wear my watch. Here I was newly diagnosed with Stage III Grade III Breast Cancer with node involvement. Hence the swollen arm for several months.
    In my city we have as far as I know one Lymphatic Therapist. She charges $95.00 per session (1 hr) I still am bothered my Lymphadema and I have it in my leg as well . I can’t juggle between rent, food or therapy I am a single mother not possible. Sometimes these therapies are just unattainable. I am hoping to petition our Member of Parliament here and make this therapy part of Cancer treatment that is covered under our Universal health care because it is necessary not just for the pain relief but for a woman’s self esteem. Having clothes that you can’t wear because of a swollen arm is frustrating or putting your foot into a shoe that is so tight, well you know the story….. Alli x

    1. Oh, Alli, that is so hard. I’m really glad you went to the Triage on an unrelated illness or who knows what would have happened.

      Lymphedema therapy can definitely be expensive, especially when it’s not covered even partially by private insurance or universal health care. I didn’t know it wasn’t covered in Canada. We are working in the U.S. to get a federal law that would cover compression garments for people 65 and older. At least that would be a start.

      Self-esteem is definitely part of the package of lymphedema, something I struggled with for years. I’ve finally gotten to the point where I don’t care if I wear short sleeves in the summer. I hope you can get some well-needed complete decongestive therapy or follow-up work to keep your swelling from progressing. Maybe you could even just go for a short session to get a refresher on self-maintenance. Thanks for sharing your story. You’re not alone, Alli.
      XOXOXO,
      Jan

    2. Oh Alli, I had to reply as well. I am so sorry this has been such a struggle for you. My health insurance plan (I don’t know about others) is now required to cover treatment for lymphedema as part of breast cancer treatment coverage, so I hope you go ahead and write that petition to change things there. I know it’s one more thing to think about and do, but it’s probably worth your effort. I understand your frustrations and good luck with everything. Thank you for sharing.

  6. Wonderful, informative posting! I had a major flare-up shortly after surgery (my lumpectomy with axillary node dissection). I was trying to exercise my arm to give it mobility and instead, I overdid it.

    Very painful, and I had to have physical therapy.

    Thanks for the enlightening insights and dispelling these myths!

    1. You’re very welcome, Beth. I had a hand flare-up nine years into my lymphedema that required extended therapy because the swelling was so stubborn. We can overdo the exercise, for sure. Being vigilant for signs of swelling is key. Thanks for your comment, and I hope you have no more flare-ups.
      XOXOXO,
      Jan

  7. Great post! Thanks for all the information. I’m one of the lucky ones–my breast surgeon mentioned lymphedema from the git-go, and I have an amazing specialist. I don’t have lymphedema but am on guard against it. It makes me so mad to know that it can crop up at any time, even years after surgery!

    1. Pinkunderbelly, Thanks so much for sharing your thoughts. I’m glad to hear you have an amazing specialist, I do do too now. Yes, it’s unfortunate we have to remain on guard from here on out, but at least now people are taught how to prevent or live with it if it does develop. We no longer must settle for “just learn to live with it!”

  8. In April I had a nail removed from my left ring finger because it had been damaged during chemo and kept growing in. Since I have left arm lymphedema it was a constant infection worry. Since then it is still not healed, the Dr. didn’t burn it correctly and part of the nail is growing back. I have had four severe celluitis infections since this has been done. Of course I do not want to let the Dr. burn it again and go through months of infections.

    But my question is really on my shoulder, my Physical medicine and rehab Dr. thinks my implant pushed my shoulder out of joint and I have an impingement, therapy hasn’t help, is still very painful. Wants an MRI then surgery. I am scared to death of having surgery after the nightmare this finger has been but the pain is horrible.

    I also have swelling into my left side and breast which since I had the nail done is pretty much out of control. My primary Doctor says I have to decide what is right for me because I have to live with the consequences of what they do to me.

    I don’t know what to do. Would you have any suggestions?

    Thank you so much
    Sherry Chartrand

    1. Sherry, I am so sorry you have had all these difficulties. I don’t blame you for feeling hesitant about more surgery that may result in more adverse side effects. I am certainly not qualified to give you medical advice, but I can say you should take your time and perhaps seek another opinion if possible. Perhaps the MRI might be helpful to further evaluate the situation. You don’t say how long you have been doing the therapy, maybe keep at it a bit longer?? You do need to procede with caution, find a doctor you trust and ultimately make a decision you feel comfortable with. I do think you need a doctor/surgeon with experience treating lymphedema patients. Your situtation sounds painful and serious. You need medical people you feel comfortable with as well as ones with expertise in this area. Good luck. Let me know what you decide to do. On a side note, I have been experiencing arm/shoulder pain too. I am still doing the therapy, but will probably be seeing an orthopedic doctor for further evaluation because of slow improvement. Have you seen this type of specialist?

    2. Sherry, like Nancy, I’m not a medical professional so I can’t give medical advice. But I do concur with Nancy’s comment to you. Seeking a second opinion from a doctor who specializes in the lymphatic field is important. Such a person may be able to do imaging to determine any blockage and further treatment. You can contact the National Lymphedema Network at
      Hotline: 1-800-541-3259
      Tel: (415) 908-3681
      http://www.lymphnet.org/resourceGuide/resourceGuide.htm
      to locate a proper specialist. You don’t want to have someone who isn’t knowledgeable doing anything to make your lymphedema and cellulitis flares worse.

      I hope that helps. And let me know if I can help further.
      Jan

  9. Jan,
    As usual, nothing but the best, short, sweet, and to the point. Your dedication to help all breast cancer patients and lymphedema patients is commendable.

    I believe in information, and there can never be too much. One of the greatest curse in the world is ignorance and the solution is education through information shared freely for all. This is what you have begun and continue to do. I look forward to seeing your hard earned knowledge in all cancer magazines, bolgs aand web sites.

    Thank you Jan

    Sandra Wade 4th stage IBC and lymphedema patient.

  10. Sandra, thank you so much for your very kind comments. I absolutely agree with you that we must break the curse of ignorance by pumping the public with reliable information. Those of us struggling with lymphedema know best how valuable it is to be armed with knowledge and good information.

    All the best to you, XXO, Jan

    1. David, Thank you so much for commenting and you are very welcome. Jan’s guest post was quite informative wasn’t it? I’m glad you found it useful.

  11. I developed mild lymphedema in my hand 17 years after surgery. My third course of chemo bought it on—caused by an infection in my fingernails. I admit, I am really bad about doing the exercises and must pay more attention to it.

    I was appalled recently that a doctor at Ohio State University was propounding that Lymphedema was ENTIRELY preventable and unnecessary….made me want to kick him in the kneecap.

    1. Lisa, It’s really important for everyone to realize that the risk remains and LE can develop many years later, as was the case for you. I don’t blame you for being upset about that doctor’s comment. Risk for many has been lowered due to the SLNB, but risk has certainly not been eliminated. Such statements certainly add to the confusion. Thank you for sharing.

  12. I was diagnosed at 39 with breast cancer. When they did my bilateral masectomy and just took out 2 nodes one came back. I had to have another surgery and had the rest removed. I have had tissue expanders in and out and infections and expanders back in. 7 surgeries. I have had minor swelling and actually had lymphatic fluid draining from my incision site on my opposite breast from where I had the lymph nodes removed. I drained for months until they filled my tissue expander enough that it didn’t leave a pocket for fluid build up. Like they say you don’t know what lymphedema is until you have it. I wish there was more information out like this about it. Thank you for your tips and information. 🙂

    1. Kristy, I wish there was more info as well, but the links in all my LE posts do offer some great resources for starting points. Please read Jan Hasak’s blog too and check her link resources. There is help available. Its sounds like things are going better for you now, at least I hope so. Thanks so much for sharing.

  13. I began with cording and extreme tenderness in that arm about 2-3 weeks after 7 nodes were removed. Hadn’t heard of it, couldn’t get any help, finally had first visit with oncologist & he helped me get started with a therapist. I’m wearing a sleeve & gauntlet every day. I don’t want it to get UNmanageable!
    I’m a homebody, I don’t require much travel…. But my first grandbaby will come via c-section Aug 5… They live in Virginia & I’m in Texas… Been 30 yrs since I flew… Although we won’t be in the air all day, it’ll take all day to get there… Any tips for me?

    1. Cyndi, I’m glad you are seeing a therapist. I would definitely ask her and/or your doctor for tips before you travel that would be specific for you. Be sure to wear loose and comfortable clothing along with your sleeve and gauntlet. Be prepared for some possible odd happenings when going through TSA. I have a post on that you might wish to read. http://nancyspoint.com/getting-through-tsa-as-a-cancer-survivor/ Some people prefer to put their sleeves on after going through TSA. Have fun visiting your new grandbaby! So exciting!

  14. Thank you so much for sharing this and including so many resources. I developed lymphedema last year at the age of 37 after axial dissection and radiation for breast cancer. Although it was stable over the winter, it has progressed during the heat and humidity of summer. I am a dedicated runner and, while I know exercising with a compression sleeve can be beneficial, running outside seems to be worsening my condition. It is very frustrating and disheartening to say the least but I refuse to give up. I am working on managing lymphedema with the help of my physical therapists and self-care. It is just comforting to know I am not alone. Thank you.

    1. Kristi, You’re definitely not alone. Good for you for refusing to give up. Managing lymphedema can certainly be challenging, so I’m happy to hear you have some good help. That is key. Thank you for sharing. Your words will help others.

  15. Hey Jan,

    Thanks for the informative article. Your story sounds a lot like mine. I had triple negative breast cancer. After 5 years I noticed a slight swelling in my wrist and thumb. My cancer doc tried to blow it off, but I insisted something was wrong. I couldn’t wear my watch either. Finally was diagnosed and had the physical therapy. Now I wear my sleeve and gauntlet (fingerless glove) all day and I can sleep without it. I definitely wear it on planes. I do the daily manual drainage exercises the physical therapists taught me and so far so good. No change in the swelling.

    I was crushed when I learned the lymphedema would not go away. As someone else said it’s a real blow to the self-esteem. I could walk around before as a cancer survivor and no one could tell. Now with this sleeve, there are always questions about my health. My physical therapists warned me that I would always have to answer questions. I have it down to a short and long version of an answer. I try to remember that everyone has good intentions and I get to educate more and more people on lymphedema. But sometimes it’s just a pain.

    I found LympheDivas and got some cute sleeves and gauntlets and that helps me be more willing to wear them. I’m still not happy about the whole thing. None of my cancer medical team mentioned anything about this possibility. They were so thorough about everything else.

    The lymphedema physical therapy team leader at my hospital, St. Josephs in Burbank California, was passionate about keeping abreast of the newest treatments and she has workshops for us patients to keep us in the loop, too. I appreciate that. It’s been 10 months since my diagnosis and I’m still trying to get used to this new reality. One day that will happen.

    1. Thank you so much for this article, and all of the comments that follow. Denise, I feel the same way, I finally got to a place where my head doesn’t look “chemoey” (as my children say) but just yesterday,as I donned my new lymphodiva sleeve, two strangers asked me if I had a new type of cast on my arm. I was caught of guard. My reply, “I have to wear it to keep my juices flowing”…WHAT??? They were as perplexed as I was hearing that come out of my mouth. Off the cuff (no pun intended), strange answer. Oh well, I guess I will have to come up with an educational stock answer, that will keep me from reliving this nightmare everyday, and also educate those that need to know! Again, thank you all for your posts, and Jan for this article!!

      1. Michelle, You’re very welcome. Jan Hasak is a wonderful lymphedema advocate, so be sure to check out her blog too. And wait til you fly with a sleeve… that can get really interesting. Thanks for reading and commenting.

    2. Hi Denise, Thanks so much for sharing about your experiences. There is much to get adjusted to isn’t there? Good luck managing things.

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