MY PERSONAL LE STORY

  • Hi everybody!  I'm so excited about this new website that Steve has made available to us.  I think this can be a great resource for networking and sharing information between both patients and therapists.  I wanted to write a little introduction about my own personal experience with LE but in an effort to save myself a little time (it's late and I should be in bed), I am going to copy over my story  as I provided for the http://www.stepup-speakout.org/  website with a little editing.  If you haven't heard about it yet, this is a website envisioned and created totally by lymphedema patients.  Lots of practical info and tons of resource links.  I can't wait to tell the members there about Steve's site because I think the ability to interact in the chat / blog / comments / discussion format provided here is unique to this site and a very valuable feature.  So here is my LE story summary....

    You would think an RN of 26 years would have known more about lymphedema.  The only education on lymphedema I can recall from my nurses training was don’t take blood pressures or draw blood from an arm on the same side as a mastectomy.  That was it.  No training on what exactly lymphedema was, who got it, how did you treat it, etc.  So when I got my first diagnosis of breast cancer in 2000, I knew from my frantic cancer research that lymphedema was a potential side effect of treatment, but at that moment my concern and primary focus was the cancer.  After all, if the medical professionals didn’t inform us on the risks of lymphedema in detail, then how much of a problem could it really be?  Wrong!

    Well to be fair, I LOVE my medical professionals.  Both my surgeon and oncologist are responsible for me still being here today.  If not for their expertise and knowledge, my outcomes would have been very different.  I think in part, secondary lymphedema is not given emphasis in the heat of an initial cancer diagnosis or during the treatment planning phase because let’s face it, CANCER is the big issue taking center stage at the moment.  I accept that with our current level of technology, effectively treating an invasive cancer will damage our bodies.  We cut it, introduce toxins, radiate it and destroy our normal hormonal balance in an effort to eradicate the cancerous cells.  As a result we learn to deal and live with pain, scar tissue, reduced range of motion and function, peripheral neuropathies, chemo brain, fatigue, arthralgias, sleep disturbances, depression, the list goes on and on.

    My big gripe, however, is that for a condition like lymphedema, which can impact more than 40% of cancer patients and cause lifelong, chronic, major disruptions to quality of life, WHY are we not spending more effort on its PREVENTION as opposed to telling patients they will just have to “learn to live with it” after the fact?  I am so excited to hear about all the new research to find less destructive, more targeted therapies for treating cancer and yet I feel that the issue of lymphedema has not yet made it to mainstream consciousness in that effort.

     I suppose this has been the path taken historically for most disease processes over the years.  Only when a disease affects massive numbers of people, or people who are persistent and vocal enough to be heard, will steps be taken to find its prevention and cure.  That’s why I am so excited about this new Lymphedema Community website of Steve's and ones like Step Up - Speakout

     Change IS coming, sometimes slower than we would like, but I have every hope that one day secondary lymphedema will no longer be the “dirty little secret” of cancer treatment and a person with primary lymphedema will not be told to “just lose weight”.  One day lymphedema will be given equal time in medical and nursing school textbooks, medical professionals will be the ones who initiate baseline measurements and patient education PRIOR to the start of surgery or radiation treatment; lymphedema patients will be fully equipped with the bandages, garments and tools they need to preserve their quality of life as much as possible; lymphedema therapist training will be standardized to guarantee consistent high quality and effective care; and the insurance companies will actually PAY for treatment required to keep lymphedema patients out of the hospital and adequately maintained for this lifelong, chronic condition.

     Call me a dreamer, but I believe it will happen one day!

     Well, back to my personal experience with lymphedema.  The treatment for my first diagnosis of breast cancer in 2000 involved a lumpectomy, sentinel node biopsy, chemotherapy, radiation and tamoxifen.  I religiously protected my right arm (the treated side) from blood pressures and needle sticks.  My left arm was used for chemo including the dreaded Adriamycin (red devil), blood pressures and blood draws.  I happily never showed signs of lymphedema in my right arm and 5 years after my initial cancer diagnosis I declared myself cured!  Three months after my 5 year anniversary, however, I was found to have another breast cancer, a new primary in the other breast, unrelated to the first. 

     This new cancer was much more locally advanced.  In December 2005 I had a modified radical mastectomy on the left and a simple prophylactic mastectomy on the right.  While I started out with a sentinel node biopsy on the left, I ended up having to have a total axillary dissection of all three levels of nodes.  23 nodes removed, all 23 positive for cancer.

     I was already aware of my risk for lymphedema on the right side and now was facing higher risk on my newly diagnosed left side.  After informing myself about the pros and cons of ports versus peripheral IV chemo, I opted to have my chemo given peripherally in the right arm.

     I had already begun seeing a PT, CLT therapist immediately after my surgery to start the range of motion exercises, get baseline arm measurements and to be trained in basic lymphedema prevention.  I thought I was doing everything I could, but I was still not prepared for the onset of lymphedema in my left arm.  A little over 2 months after my surgery and during my 3rd chemo cycle I developed Hand/Foot syndrome, a side effect of the oral chemo Xeloda.  The palms of my hands and soles of my feet became inflamed, swollen and painful.  Overnight, my left hand, wrist and forearm began to swell and I knew that I had lymphedema.

     I don’t know if it was the inflammation of the hand/foot syndrome that sped up my lymphedema process or the combination of having had total axillary dissection and an already scarred vascular system due to the earlier chemo, but my lymphedema was somewhat atypical in its rapid development of fibrotic tissue.  Add to that 6 weeks of radiation and my lymphedema quickly became stage 2.  The key factor that caused my lymphedema to take a positive turn towards reduction of fibrosis and overall improvement was finding wonderful, knowledgeable, certified lymphedema therapists who could think out of the box and individualize their treatment methods to my specific needs.

     Psychologically, lymphedema can be a challenge.  You have to adjust to an altered body image, loss of normal strength and functionality in the affected limbs, constant paranoia of getting cuts, burns, bug bites or injuries that will land you in the hospital with an acute infection and the “fear of flying” takes on a whole new meaning, all while having to be your own best advocate and “educator” when dealing with other healthcare professionals. 

    It has been a long, long process getting to the point I am at now.  The 6 weeks of looking like the Michelin man with my bulky bandages during my intensive treatment period, the endless nightly wrapping with short stretch bandages until I was finally able to get my JoviPak nighttime sleeve.  The daily MLD, skin care, daytime compression garments, LeBed exercise, Kinesio Tape, Flexitouch system, rebounderLTU-904 Low Level Laser all tools in my arsenal for managing my lymphedema.  Thankfully, I am seeing slow but consistent improvement in my arm volume, tissue consistency, functional mobility and comfort level.  I know I can never stop being vigilant in my daily maintenance, but it is gratifying to see my efforts pay off in meaningful ways.

    I am very grateful to have received all the support I have from the various sources of information like the NLN (National Lymphedema Network), BreastCancer.org, the Norton School of Lymphatic Therapy and  all my wonderful therapists and lymphedema friends.  I am currently almost a 9 year survivor of my first breast cancer, a 3.5 year survivor of the second cancer and a successful manager of my lymphedema.  I hope to personally see many more years of research and treatment discoveries that will ease the burden of this path we walk and will perhaps eliminate future patients from ever having to deal with these same issues. Sites like this one are certainly a huge step forward in promoting discussion and the sharing of ideas that can have an immediate positive impact on the delivery of care and patients quality of life. 

    alt

    Linda

5 comments
  • Colleen O'Kane
    Colleen O'Kane Did you have to buy your own LTU-904 laser? I suspect my insurance will not cover this purchase and I understand that they are very expensive.
    April 25, 2009
  • Linda Malmberg
    Linda Malmberg HI Weatherly. Sorry I'm so late sending a response but was unable to logon to the site for days. Finally got the problem fixed. Congratulations on getting the Flexitouch! Hope you are finding it very helpful in addition to very relaxing. I fall...  more
    May 1, 2009
  • Linda Malmberg
    Linda Malmberg Hi Colleen,

    There is a therapist in St. Louis who is currently using the LTU-904 laser in her lymphedema practice. She happens to be my therapist The laser is quite expensive (around $4000 last time I heard) and I do not believe insurance will cover...  more
    May 1, 2009
  • <i>Deleted Member</i>
    Deleted Member I have the flexitouch system. I love it. I am so glad that my insurance paid for over 3/4ths of the bill. I find it the best. And I can do it on my own time, and not having to leave work to go to a appointment and the therapist costing me over 400 a...  more
    May 17, 2009 - delete