Elke’s Journey

I have been dealing with secondary lymphedema in my left arm since July 2021. I’m a survivor of metastatic adenocarcinoma of the lung. My cancer was treated with extensive rounds of radiation to lymph nodes in my upper chest and neck from 2015 to 2018. I have extensive scarring on my left side, neck and armpit.   

I had no sign of lymphedema until I made the mistake of receiving covid vaccines in my left arm. Within two weeks I had lymphedema and cellulitis in that arm. Wish I’d known then what I know now, not to take injections of any kind in that arm.   

Having lymphedema has been a trial. The constant use of compression garments, receiving regular MLD and CDT, and trying to control swelling is a daily burden. The cost of managing my condition has been a burden as well, even with extended health benefits. Paying for professional services and expensive custom-made garments has cost thousands per year. 

In 2022, I was seen by Dr Weiss and Dr Brown in clinic. They determined I was a candidate for surgery due to the extent of swelling, development of adipose tissue and the risks of repeated cellulitis. I had liposuction in the summer of 2023. This has been very helpful. My arm is considerably smaller and I’m able to maintain the reduced size.

Recently, I have been able to access the services of Janet Sprague, a certified lymphedema therapist, who comes to our area once per month.

She comes highly recommended and well known from her practice in Vancouver. She has been very helpful with her expertise in massaging my arm and teaching how to wrap my arm. She advised me on the most effective compression garments for me.  

I would like to see the government set up lymphedema clinics where patients can receive the information they need to deal with their condition. I made critical mistakes due to not being adequately informed. I would also like to see access to treatment for newly diagnosed patients to prevent their condition from getting rapidly worse, as mine did, and to avoid trips to the hospital to treat cellulitis as was my case. As I understand, Alberta has clinics attached to their cancer centres, to help patients with lymphedema. I’d like to see the same medical services offered in BC.