In 2007, I was diagnosed with uterine cancer which required a hysterectomy and dissection of 30 lymph nodes. There was no metastasis, so no further treatment was needed until 2010 when cancer recurred in my groin and iliac regions. I underwent a second (exploratory) surgery, resulting in dissection of an additional 14 lymph nodes, chemotherapy and radiation.
The side effects of cancer treatment, particularly surgical scar tissue and radiation, have affected my life. It’s led to lymphedema and various other related issues which I’ll share here.
In 2015, I began suffering gastrointestinal issues and was ultimately diagnosed with ISBO (intermittent Small Bowel obstructions). It’s treated by a physical therapist (PT) educated in the John Barnes Myofascial Release (MFR) technique and a low residue diet.
In 2016, signs of lymphedema showed up first in my swollen foot and ankle which made weight bearing painful and walking difficult. When the swelling moved up my entire leg and the leg became bright red, I went to the Emergency Department where a physician ruled out a blood clot. I next saw a vascular surgeon who diagnosed venous insufficiency due to lymphedema. The same PT who was treating my ISBO began treating my lymphedema using the MFR technique.
My PT explained the correlation between the lymphedema pain I felt in my leg and abdomen. If there’s a buildup of fluid in the abdomen it can affect ISBO and leg lymphedema pain. The swelling results when lymphatic fluid can’t properly drain. The pathway is clogged, so to speak.
Next came vertigo. An Ear Nose and Throat specialist diagnosed the “edema” in lymphedema as creating enough excess fluid in my body to cause vertigo.
My activities of daily living are greatly affected by cancer treatment side effects (lymphedema and ISBO). However, the support of family, friends and groups such as Inspire help me to be my own advocate. I can find the knowledge I need to treat the issues in my life. This support greatly helps the emotional issues that can arise at times out of pain, anxiety, and the physical challenges.
Since compression is a universally accepted practice in the treatment of lymphedema, my personal goal is working with my Certified Lymphedema Therapist (CLT) to find that perfect everyday use maintenance garment, once our reduction work is complete.
My current regimen consists of wearing a CircAid Juxtafit at home, rather than bandages, for reduction. I also use a Bio-Horizon pump, and see my PT for MFR and CLT for manual lymph drainage (MLD). I elevate my legs as often as possible. I do the exercises prescribed by both my PT and CLT.
Additionally, I recently found the Ketogenic diet to be highly effective in reducing inflammation and assisting in lymphedema pain and swelling.
My biggest disappointment in treating my lymphedema is the extreme lack of knowledge about the disease in the medical community. Even recognizing lymphedema is sometimes a challenge to these professionals.
If one is fortunate enough to find a PT and/or a CLT who knows it “ALL”: garment brands, fitting, MFR, and MLD, you’re ahead of the game.
And by educating ourselves and helping each other, we CAN!
Journey on!
Jeannie Starrett
Porter Ranch, CA