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I am the mother of two wonderful boys and a wife who also happens to be a cancer survivor. I was diagnosed in 2004 and had successful surgery in December of that year. In 2008, I began to notice swelling in my left ankle, and after countless doctor visits and swelling inching up my leg, I finally was properly diagnosed in 2011 with secondary lymphedema. In 2008, my doctor told me the swelling was because I was “getting old.” At age 33, that was not an answer, and I had to do a lot of advocating for myself to finally get on the path to maintenance. The lymphedema actually was the result of the surgery that cured my cancer. I live with a larger leg, but things could be so much worse. Now I am the secretary of the NY State Chapter of the Lymphatic Education & Research Network, and I share my story in the hopes that others will not sit silent when they notice something is not right with their bodies. We have to be our own best advocates!

This blog dates back a few years. In 2009, to celebrate five years of being cancer-free, I started the “Stick it to Cancer Blood Drive and Basket Raffle” to give back to the community. My wonderful husband and the rest of my family were so generous to help me out with my recovery and fundraising, and I love them for it! Now I’d like this blog — along with social media and even some face-to-face meetings — to serve as a support group for others who suffer from lymphedema and other lymphatic diseases. So feel free to share away!!

  1. Barbara DeDen permalink

    I was wondering why it took so long for your lymphedema to show up so long after your surgery for cervical cancer? I had a partial thyroidectomy for Medullary Thyroid Cancer in September of 2011 and by the same time the next year, I had the beginnings of cellulitis and lymphedema. The cellulitis I got from insect bites, the open wounds from the lymphedema and 30 pounds of fliud are gone but the swelling although it goes down some, never quite goes away. My doctor will not admit I even had lymphedema last year and will not do any testing or referrals for it. I do not know what to do. I am glad you are doing better. I am not as bad as last year but not completely free of it.

    • stickittocancer permalink

      I wish I knew why it took so long. I was told that it just happens that way sometimes. I would encourage you to seek second and third opinions. Ignoring Lymphedema is careless for a doctor to do and it won’t make it go away. I learned that mine gets worse in hot/humid weather because the heart pumps out more of that fluid in that weather. That’s why mine seemed to go away the first few years. Since then, my leg gets a little bigger every year, but manual lymphatic drainage and bandaging helps so much!! Demand testing and answers. Don’t give up. Best of luck to you!!

  2. Barbara DeDen permalink

    Yes mine also got worse when I left the air-conditioned Recuperative Care Shelter last July and went into a regular Salvation Army Shelter that had a broken air conditioner in the women’s dorm. My lymphedema came back and with a vengence but 1 or 2 months later when they finally got it working again it got better. The only problem is that it goes down but never goes away. My right leg also got bigger than my left leg (when I got measured for compression stockings in July, I was told that my right leg was 2 inches bigger than my left leg). I am on 40 mg of generic Lasix 3 times a day so it cannot be water build-up. I am just trying to figure out how I can get it diagnosed without having to go through my primary care doctor or pay for it myself. My ex-husband would have ask me why I do not take better care of myself. I would reply by saying that I do take care of myself. I went to the doctor but the problem is that my doctor does not listen to me! It is my doctor that is not taking care of me. I did contact some experts in the field today by sending them an e-mail so I will wait and see what they say. I hope they will have some ideas for me.

    Thanks for you help.

    Barbara DeDen

    • stickittocancer permalink

      Is there any way that you can find a new primary care dr.? Or work with the doctor’s assistant to get a referral to a Lymphedema specialist?

      I had to demand a referral myself. My doctor first told me that the swelling was BC I was ‘getting old.’ I was only in my mid-30s at the time. After doing my own research, I demanded my dr write me a referral to a cancer center in our area BC my Lymphedema was caused from cancer surgery. The catalyst was that I went to an urgent care facility and they linked the swelling to my cancer surgery. I went to my primary dr and reported that info to them. Then I demanded the referral.

      I told her if guys can waltz in here and demand Viagra, I better get this referral BC it’ll save my leg. I had 3 weeks of physical therapy (manual lymphatic drainage) and the Lymphedema center taught me how to use compression wraps and bandages, and I’ve managed it on my own since 2011. I still swell. I can’t wear shorts or mini skirts in public anymore. I can’t wear sandals anymore. But I still have the leg, and the Lymphedema is managed. I’m grateful for that.

  3. Barbara DeDen permalink

    You poor thing. Doctors can be so mean sometimes. I am 58 years old and he does not dare tell me that, although he did say that the swelling in my legs were due to fat not fluid. I am sure some of it is but not all because the area does not spring right back after being pressed. If it was just fat it would spring back right away and not linger there. It does not stay there for several minutes but it does stay there for a while.

    I use to have a good primary care doctor. He was a licensed cardiologist but was retired and only helping out at the clinic I go to because they were short on doctors and needed some help until they could hire some more doctors. He was the one that told me I had GERD/Acid reflux. I ask him what the cause was and he replied The 4 F’s. I said okay I’ll bite. What are the 4 F’s? He went on to tell me forty, female, fertile, and on the 4th F he stuttered and could not get it out. His mouth would not let him form the word Fat! It was so funny, we both had a good laugh. He definitely had more bedside manner than the one I have now.I thought that was great that he did not want to insult me. Thanks again.

  4. Congrats on your keynote speaker role! How exciting!!! I was diagnosed with lymphedema (now in both arms) 2 years ago during chemo (following a bilateral mastectomy at 33). Do you have any tips on what works to keep your lymphedema down? I am currently on a anti-inflammatory type diet and juicing which helps keep it from swelling but I am not seeing drastic changes in getting the fluid out of my arms.

    • stickittocancer permalink

      I’m sorry to hear about your diagnosis. Lymphedema is so tricky, but care can bring the swelling down.

      I use a combo of manual lymphatic drainage and compression wraps to manage the swelling. I’d urge you to find a doctor in your area who uses these methods, which force the fluid into areas of the body where the lymphatic system is healthy and can expel the fluid.

      Best of luck!!

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