December 16, 2020

Dear Dr. Madara,

I want to include you, as the CEO and Executive VP of the American Medical Association, in a troubling, yet all too common, representation of the inadequate lymphedema treatment received by a patient diagnosed following cancer surgery. The patient... me. 

My Lymphedema Road Background: 

In January 2015, I was diagnosed with uterine cancer with surgery scheduled in February. The surgeon stated that there was no rush to perform the surgery as my symptoms were new and the ultrasound showed the cancer to be well contained. I wanted the surgery that very day, if possible. I was thinking: get it out!!!! Yet. he assured me, oh no, we will schedule it for six weeks out. The premier oncologist would be available then. I was to go home, continue going about my life, go on vacation, don’t worry, he said. I could actually wait six months if I chose, he said, because these cancers are slow-growing. Well, for me, not so much! Surgery took place in February. My cancer surprisingly was very aggressive and 17 lymph nodes were removed, with external radiation, brachytherapy, and six difficult months of chemotherapy scheduled. 

Signs Of Lymphedema Began:

Within a month following the surgery, my legs began to feel fatigued, achy, and heavy – that began much-unabashed complaining on my part about those nagging symptoms of achy, heavy feeling, fatigued legs to any and all medical people I encountered. Once blood clots had been ruled out my complaints were promptly dismissed, with sometimes a follow-up look that implied that they had never heard of such a complaint. I was encouraged to “keep moving” meaning continuing my walking regimen, exercising, and pushing myself to keep my routines. I did so with fierce determination, following their instructions and assuming this was the path to regain my health. How wrong the medical advice was. 

Four months post-surgery, I noticed distinct swelling in my right leg. That symptom was met with, "We need to watch it.  Well, we watched it all right, watched the swelling increase in my leg until there was no denying any longer the cause of my complaints. I was being treated at one of the best hospitals in Massachusetts. Amazingly, there was no lymphedema specialist on staff! The oncologist said, "There is nothing we can do about the lymphedema," and summarily left the room.

However, the physician’s assistant suggested I could go to any local pharmacy such as a CVS or Walgreens and buy a compression stocking off the shelf, but she warned me that a lot of people do not like compression stockings and discontinue wearing them as they are uncomfortable. The physician’s assistant also agreed to try to locate a Certified Lymphedema Therapist (CLT) for me...but never followed through.

At that point, I was frantic and aggressively searched online for information about lymphedema that clearly was not going to be forthcoming from my medical team. My anxiety was beyond measure, and I truly thought I was going to have a breakdown; mind you, I was still receiving chemo when one is supposed to be practicing calm and self-care. I felt as though I had fallen down the proverbial rabbit hole. I could not wrap my head around that this highly esteemed medical facility did not have any inclination or protocol to address my lymphedema in a meaningful medical way. 

Feeling alone, lost, and profoundly failed by my medical team. I completed my final chemo appointment in a compression stocking I ordered online, blindly guessing the compression level best suited for me and using the sizing guide offered on the website. Not hard to imagine that my selection was not the best one for my needs. Five years ago, searching online provided meager help or direction unless you knew exactly what you were looking for and lymphedema was all new territory for me. I was frightened and horrified that after following medical advice faithfully through this cancer that my situation was seriously out of control and no one seemed to care! I eventually did find a facility that offered lymphedema treatment, without the benefit of professional guidance, that provided excellent CLTs, garment advice, and offered the support that I desperately needed at that time. 

Depression, not surprisingly, reared its ugliness clobbering me hard with a force that quickly brought me to a very dark place. I was lucky though, I found a superb therapist who helped me navigate the range of emotions and life upheavals associated with lymphedema. I had to leave my job that I loved and excelled at! LE robbed me of the ability to meet the physical requirements. I am still heartbroken. The loss of income continues as well. That also means I am no longer a healthy piece of the working economy. Gone are my financial resources to recreationally partake in travel, the arts, entertainment, the ability to purchase another vehicle. The economy lost too, lost a once active participant to that system with disposable income to spend. The out-of-pocket costs to manage LE are staggering and never ending. Garments rarely last the suggested manufacturer's lifespan, they just don't. Non-compliance in LE management can have serious negative impacts; infections easily result in dreaded ER visits, long hospital stays, worsening LE symptoms, and overall acceleration in erosion of health. I have had to experience the physical change in my body, mental health issues and my self-identity.  Relationships have dramatically changed with family members and friends, more times than I care to count, a type of parting of the ways takes place. There is little emotional support for most of us by family and friends. Overall, what a mess, I would sadly say. 

After five-plus years of fighting and self-advocating relentlessly for good quality LE care, I even endured a well-regarded vascular specialist tell me, "Go home and enjoy your life." Boy, did I feel dismissed, defeated, and marginalized after that appointment! I now know that had my lymphedema been properly acknowledged and treated at the onset of my initial reporting of symptoms and addressed immediately, my lymphedema would most likely not have progressed as it has, ultimately requiring surgery. Also, can you imagine the money that has been spent on my lymphedema care over the past five years through personal funds, private insurance, etc It sure feels as though much of it could have been avoided. It feels to many of us that lymphedema and lymphatic diseases are viewed by medical professionals as somehow less worthy of care and medical school training. It feels as though we are being ignored, dismissed, in essence told to go home, be quiet, and, for many of us, use treatments that are just not working for a disease that can ultimately be life shortening and threatening. Lymphedema has no good feelings! 

So, in closing, I do not understand why the medical community is not held to a higher standard in monitoring and addressing lymphedema when, as in my case, it is clearly not an uncommon result of cancer treatment. Why with millions upon millions of people already diagnosed with LE and more and more being diagnosed, are medical schools not spending more time on lymphatic training? We all read over and over and over the unacceptable pathetic stat that only 15-30 minutes of lymphatic training is part of the curriculum – a rather embarrassing commentary of the training that medical students graduate with. 

My Lymphedema Road is from the perspective of a cancer survivor developing secondary LE. The good news is that cancer survival rates are up, we are living longer, living! Hooray! Truly grateful! You cannot though possibly expect or want those of us who have fought hard to survive to now live in an LE Hell due to uninterested health care practices/protocols and inadequate training. Certainly, much more can, should, and needs to be implemented.

Yes, in my opinion, my LE Road continues to be tough for me on many levels, yet I am cognizant that others (many who are silently just trying to survive each day) have far more disturbing stories and far more difficult day-to-day trauma to deal with. What trauma? Trauma to their bodies riddled with pain. Trauma in the horror of witnessing their bodies that for some are barely recognizable due to uncontrollable swelling, disfigurement, and disability. Trauma to their minds which are exhausted. Trauma to their hearts which are broken, and trauma to their souls which are tortured trying to make sense of this life sentence they have been handed. But no matter what our Lymphedema Road experiences are, I am resolute in the belief that ALL our experiences and stories are important histories that deserve to be listened to, read, documented, respected, and learned from. Thank you for taking the time to read mine. 

Respectfully,

Joyce M., Boston, Massachusetts