Lymphedema is said to be the number one post-treatment issue for breast cancer survivors, and it can leave sufferers not only with a lessened quality of life, but also feeling abandoned and stigmatized. Some women have even said they’d rather go through chemo again than be living with this condition. Symptoms on the side(s) of the body impacted by the cancer include: swelling and discomfort in the arm, hand, fingers, and feelings of heaviness, fullness, hotness, possible swelling or discomfort, tenderness, (sometimes severe pain) in the trunkal area - front (including breast), side (including armpit), or back.
The estimate of its incidence rate in the survivor population varies widely -- probably because no standard means of diagnosis or measurement exists. The lowest number of the range I’ve seen was 1%. The highest end of the range was 91%. So split the difference, and some say the rate is probably around 50%. The numbers include women whose lymphedema develops soon after treatment (one study said most cases develop within the first few years) all the way out to 25 years post-treatment, with likelihood lessening over time. Why didn’t anyone ever tell me what I should be doing to lower my chances of developing this? And what about the women who did develop it, but didn’t know soon enough for a LE specialist (if they could even find one) to intervene and possibly have made it easier to manage or lessened the chances of it
Breast cancer survivors with LE have made mighty efforts to inform other women, medical personnel, and the general public about this condition and the psychological toll it takes, as well as the lifestyle changes it forces on its victims, not to mention the financial costs -- which are not covered by Medicare or covered enough by private insurance. Management can entail multiple trips to a LE therapist for manual drainage via lymphatic massage (requiring highly specific training and many hours of experience). Also, patients are educated about wearing compression garments on the affected area by day (whose correct level of tightness -- to keep lymphatic fluid circulating -- may only be found through much trial and error), and time-consuming compression bandage-wrapping at night. Also skin care techniques. And exercise may be recommended, but not too much or engaged in too quickly. Lymphedema can require lifetime limits on certain physical (especially strenuous) activities.
I’ve heard of some pretty messed up things going on in women’s encounters with other people and even doctors, regarding the issue of post-breast cancer lymphedema. Like doctors telling women their chance of developing it after just a sentinel node biopsy is zero (even though it has happened to women with only the sentinal node taken -- and I know one), and numbers indicate that as SNBs have increased over the last decade, so has incidence of LE. And when symptoms do develop (which many women are never even warned about), no one may bother to tell the patient to seek treatment for it. Some of this is ignorance and some is thoughtlessness.
As breast cancer survivors, we often encounter well-meaning family or friends who seem to think that once cancer treatment is completed, we should all just be thankful we’re alive and get on with our lives. Almost like it’s an affront to them if our minds and bodies are still reeling from the ramifications. And who really wants to spend time trying to explain why they’re wearing that goofy-looking elastic sleeve that’s hard to find long-sleeved shirts to cover (and who wants to have to wear long-sleeves in the heat? -- unfortunately a time when our extremities are more prone to swell). And perhaps the worst is being treated like the condition is all in your head.
Adopting lifestyle changes to minimize your chance of developing LE or of it getting worse -- in addition to those noted above -- will depend upon your personal weighing of the costs/benefits ( based on incomplete information). It also depends upon how risk averse you are (rooted in risk estimates also based on incomplete information). Suggestions include: never having your blood pressure taken on the arm by your effected breast (use your leg - if the nurse knows how). Don’t have blood drawn from that side or IVs placed there (use legs or feet). Avoid heavy lifting, especially on the effected side. Avoid sunburn or insect bites on that arm. Skip manicures that may involve injury to the cuticles. In short, anything that may raise risk of infection or inflammation. You can see some of the suggestions require more effort than others.
Soon after my treatment, I noticed the med techs asking me which side I’d had the cancer on, prior to drawing blood or taking my blood pressure. I assumed they were just wanting to avoid causing me more pain on my already painful side. Oh duh! Maybe they actually knew about my lymphedema risk. Too bad no one clued me in. Some of this stuff you just have to find out on your own, I guess, though that’s not how it should be. (Thank God for Google!) Sometimes I long for the days when I thought I could just trust my docs to take care of me and let them worry about the details of my illnesses and treatments. But understanding what being a breast cancer survivor entails -- with all the ugly and often unspoken little details (that can turn out to be huge deals!) -- brings with it some feeling of control. And I’ve learned the hard way that “Ignorance is (not) bliss, “A little knowledge is (sometimes and sometimes not) a dangerous thing.” But “Knowledge is (ALWAYS) power!”
(Special thanks to Pam Evgen for providing so many valuable insights and resources.)