The attitude that I had after my cancer treatments was straight forward. I was done with that, now it was time to get back to normal. I don’t think I was mistaken, mentally I was moving on.
I did not give lymphedema risk reduction due thought and consideration. I sat through the seminar that fellow patients and I were given that told us exactly what we could do to lesson our risks of developing lymphedema. I didn’t adopt the practices recommended. Without giving it much thought I shook this information to the side. Why worry about something that might not happen?
Now I have read and filled out a lymphedema risk assessment tool. It made me realize that I was at high risk to develop secondary arm lymphedema. I wish I had known. I wish I had listened.
I read of a research study that followed a group of breast cancer patients from end of treatment to a date six-months later. It showed only 50 percent appeared to be following the recommendations provided to them. What made the difference? Attitude. Mine was poor.
Women were more likely to follow the recommendations if they felt confident that they could physically follow the routines. They also were more likely to be compliant if they believed their efforts would make a difference. The final factor lay in the women’s stress coping ability.
I believe that the risk assessment tool would have been the educational difference to me. If you would like to see the assessment tool you can download a copy at www.canadalymph.ca. I think I will include a copy in a care package for cancer patients that I know.
I also believe that lymphedema happens. The research might point to certain risk factors but in the end some people may simply be predisposed to a malfunctioning lymphatic system. All the dos and don’ts in the lymphedema world are only suggestions.
It serves me best to believe that developing lymphedema was not my fault. What is important that I manage the chronic condition, starting early, and with the consideration it deserves. That will give me the best chance of living a good life with lymphedema.
Another tip sheet is at www.lymphnet.org/riskreduction. These guidelines surround having a healthy lifestyle but specific to lymphedema, including notes about skin care. It reviews individual risks, being educated about infections and potential triggers for lymphedema. These triggers include injury or trauma, limb constriction, extreme temperatures and prolonged inactivity.
A lymphedema patient needs to be aware of lymphedema risk reduction practices and I encourage you to gather knowledge and expertise in this area.
Awareness of training standards with respect to therapists is one focus of the Canadian Lymphedema Framework. Their guidelines are standards for complete decongestive therapy (CDT), also known as decongestive lymphatic therapy (DLT). Their training standards are backed up by the National Lymphedema Network (NLN) and the Lymphology Association of Northern America (LANA). A patient should ask about the care provider’s qualifications before receiving treatments or therapy.