Lyn's Journey

Lyn Anglin is currently the Vice President of the BCLA and a breast cancer survivor. 

It took a while to get back to a somewhat “normal” life after the cancer treatments. (If such a thing is possible after cancer.) I am back to doing a lot of things that I like: traveling, working in the garden, walking, going to the gym and hanging out with friends and family. 

I am not happy about having lymphedema, but I’m dealing with it. The bottom line is that I feel fortunate to still be around, and that the Lions Gate Hospital Oncology Ward and the BCCA, and all the doctors, specialist, and health care professionals at both places did an awesome job! 

I was definitely demoralized, and even depressed, when I realized I had developed lymphedema in my left arm. After having gone through all the treatment for cancer – 4 months of chemo, a double mastectomy, and then 16 radiation treatments, a 9-month process in total — to then six months later find out that I had developed an incurable disease that was going to require wearing compression day and night, a daily self-massage regime, and the swelling was at risk of only getting worse, with the added possibility of serious skin infections.  

I realized that I was at high risk for lymphedema after having many lymph nodes removed during my mastectomy. My surgeon had told me that they were expecting to remove 5 to 8, but after the surgery she said they had removed about 18. When I heard how many lymph nodes were removed, my heart sank. When I was discharged from the hospital, I started googling “lymphedema” and “breast cancer-related lymphedema”.   

Finding Out the Next Steps 

I found the BCLA and I reached out to them. Christine Chandler called me back. She gave me information on what to watch for, and how to find garment fitters and manual lymph drainage therapists through the BCLA Directory. I was watching for swelling in my arm. I even went for MLD before anything swelling showed. The initial swelling was really subtle, I had no pain or feeling of heaviness in my arm. When the swelling was noticeable, I had developed lymphedema.  

After it developed, I just didn’t know what I could or should do — should I exercise or not? If exercise was good — how much was good? When is too much, too much? Can I lift weights, do planks, use the rowing machine, or not? I wanted to go back to the gym, to get back to weight training, hiking, and eventually get back to running, but I just didn’t know what was safe. It was scary.  

In hindsight, I wonder if I should have worn compression all the time for at least 6 months to a year after cancer treatments to limit the development of lymphedema. I never felt I got a really clear answer whether it was a good idea or not. I wish we had answers to that question, and access to better early diagnosis, for others at high risk. There is research that suggests that if caught early, at stage 0, some secondary lymphedema may be reversible. 

I would advise new lymphedema patients to do your due diligence. Contact the BCLA to find a lymphatic therapist and a certified garment fitter. Talk to your LANA trained therapist on what you can do to help in your lymphedema fight. Talk to your doctor and ask for a referral for the VGH-UBC lymphedema clinic for an assessment (It is a long waiting list. I have been on it for more than a year). 

What is on my wish list:

I would like to see a lot of things: 

1. More awareness and understanding of lymphedema by medical professionals 

2. More access to diagnosis and treatment for people suffering with lymphatic diseases 

3. More public health care coverage of the cost of compression garments and other treatments (bandaging, pumps) for those who do not have extended health care insurance coverage 

4. More recognition of cancer-related lymphedema, especially since, as the cancer survival rates improve the number of lymphedema patients is probably going to increase (unless protocols change for axillary lymph node dissection or other lymph node-impacting surgeries and radiation). 

5. More research into why some cancer patients at high risk for lymphedema develop it and some don’t after receiving the same treatments 

Next month - Lyn’s feelings on what we need to improve outcomes for secondary lymphedema patients.