It certainly " FREAKED me out " when I was told I might get lymphoedema after surgery, and saw the pictures of big fat arms and legs and hands in the brochure given me. There are NEW pamphlets out now, showing DEGREES of Lymph issues.
This was in 1998, June. I had lumpectomy and 11 nodes removed, on R side; one had cancer. Chemotherapy and radiation followed, also instant, severe, menopuase with flushing and cognitive effects, plus suicide ideation followed.
All this and trying to work out, after surgery, how much to use my arm, and even if I HAD lymphoedema. I had a traumatic experience, but eventually worked out what was best for me.
I have met others with issues of their own. Eg.. A lady with a double mastectomy and some swelling, did not get ANY follow up care until 8 months after her BC operation. She went through the private system, but there are now better systems in place for follow up care. Eventually she was diagnosed with Primary Lymphoedema and a Secondary Lymphoedema on top of it. She also fell over a couple of times, and this put EXTRA pressure on the whole lymph system.
She has scanning laser every couple of months to her arms and legs and abdomen, plus has massage. She does not wear a sleeve. She has adjusted her lifestyle and the up's and downs of lymph issues. Sometimes it can be more uncomfortable and " painful " and swell, then it can subside after treatment, or rest and manual drainage, etc. She paces herself. She uses a" wobbler machine" also..daily..for 15 minutets. You can google it, etc.
I have come to the conclusion that there are varying " degrees" of lymphoedema, but...even a " seemingly small " issue, can be a BIG problem if you have it..and it is not resolved, so the client understands how the lymph works and all available treatment and support.
We all need a little hope. It can be devastating and mental anguish can be common with a BC diagnosis.
Helping people to learn how to manually drain lymph..daily..is beneficial to all people really. It is a system that is not understood by a lot of people, but is a very important for health in the body.
I also think getting onto it..straight after surgery, or even before surgery..to understand HOW the anatomy works and how the lymph drains..is a good idea for all those having treatment. Let THEM be the judge if they need it too ! It is our bodies and we should listen to ourselves.
The numbers of people diagnosed with lymph issues following a BC diagnosis..varies immensely..from about 10% to 60%..etc. What does that say?
Having access to Breast Cancer nurses and bettter early treatment for lymph issues is more prevelant today than in 1998.
Lymph issues effect the whole body, as it drains from ALL the body. Putting too much pressure on your system can make the issues worse. Flushing and vasodilation from menopause, plus the effects on veins, and other tissues in the body; from hormone withdrawal after BC treatments, all can effect lymph drainage. Emotional support is beneficial, especially early on, I feel, though some people may prefer to deal with things differently.
Professionals dealing with those with any lymph issues, need to listen to their clients, not just measuring arms and bioimpedence etc,
The big lymph ducts drain into each side of the neck. The left side takes lymph from the legs and left arm, plus stomach and left shoulder area.
The right side takes lymph from the right arm and stomach and back of shoulders. ( Maybe this is because most people are right handed ? ) Please check this yourself in Physiology and Anatomy of body and Lymph. )
Weight needs to be looked at if you have a higher BMI, also diet can help, and keeping the skin moisturised to reduce infection, etc.
Water therapy ( ENCORE programme, ) Tai Chi, types of YOGA ( Annette Loudon in Sydney has a DVD...google etc ) and gentle, slow strength exercises, to keep strong and flexible, can help.
Job issues and lifestyles may need adjusting too. Too much repetitive work and sustained lifting, or heavy lifting, especially early on..can effect things.
LISTEN TO YOUR BODY, and keep searching..is my advice.
I did a few things, that if I had my time again.. I would NOT do.
BUT you cannot go back, only forward. Accepting reality, was one lesson I had to learn, amongst others.
Hopefully you can find a GOOD massage person..to teach you how to do drainage, maybe have some LASER early on after surgery, and if necessary a compression sleeve.
When flying.. I do drainage, and SLOW BREATHING, before I fly. I try not to rush about and " stir things up ", and I use baggage on wheels, so I do not have to carry bags. Even 2 kgs can effect you, especially " sustained " lifting.
Adjust your lifestyle if necessary. You can get fatigue also, etc. It is best ot err on side of caution, especially early on. I rest at times during the day, or after and before exercise, if necessasry. Lying down with legs slighlty elevated for 15 minutes, and doing manual drainage etc.
" Slowly, gently, carefully " is my motto these days. Also " do it tomorrow", but this is not always easy for some, who have busy lifestyles and young families.
All the best.. Kathy.
