WTF? NOBODY TOLD ME ABOUT THIS (AND THEY PROBABLY DIDN’T TELL YOU EITHER)

Many doctors’ examining rooms are decorated in neutral colors with tasteful art on the walls, giving you things to look at while you’re waiting, usually in some state of undress, for them to pop in.

You’re probably sitting nervously on a table, staring at the featured art or maybe scrolling around your phone because you left that years-old magazine in the waiting room.

Time stands still as you glance at tissue boxes and other paraphernalia arranged on a nearby counter top, resisting urges to blow up the vinyl gloves and trying to hold your gown securely fastened until the last possible minute.

Score one for the doc if it’s fabric instead of that crispy paper with stretchy plastic ties.  Right?

At one pre-surgery visit, sitting there holding my gown closed, I happened to spot a pamphlet listing lymphedema support group meetings.  “What the heck is lymphedema?” I asked myself and paid it no more attention.

I remember signing something granting permission to perform axillary lymph node dissection if necessary, but really had no idea what that meant.  It wasn’t until my breasts were removed and sentinel nodes biopsied that my eyes were opened.

Through my own research, I found out what that involves, and its connection to the lymphedema pamphlet.

Why did no one tell me?

Why was it downplayed when I questioned the doctor about my risks?

Maybe he was trying to be reassuring.  He is, after all, a very nice, kind man.

Maybe he was more concerned with getting the cancer.

“Your risk is only like two percent,” he told me.  “I took one node from your cancerous side and only five from the other side because they were all clustered together.”

What?  You’re a surgeon!  You have tiny, sharp instruments.  You couldn’t separate them and just take the leader?

OK, OK.  My knowledge of armpit anatomy is admittedly limited and I slept through the operation.  I also ultimately trust his judgment and abilities.

Here’s a summary of what nobody told me, and why the five nodes got me in a panic.  If you’d like a little more in-depth reading go here.

The lymphatic system is made up of a series of vessels that pump fluid from bodily tissues towards the heart.  This is clear fluid is ripe with protein molecules, bacteria, cellular waste products and other stuff the body can’t use.  In the lymphatic system, the fluid, called lymph, is filtered and cleaned before being moved, through the veins, to the heart.  From there it is returned to the blood and sent back through the body.

It’s your body’s built-in cleaning crew.

Lymphedema  is a possibly irreversible condition caused when lymphatic flow is interrupted by injury or by surgical or radioactive treatments.  Lymph builds up, like a traffic jam following an accident, resulting in painful and disfiguring swelling of the limbs, head and neck and/or torso.

Where the nodes were tampered with determines where you are at risk. You will not be susceptible in your left arm, for example, if only your right side was injured.

Interrupting lymphatic flow in the lower body may lead to swelling in legs or torso, and this risk seems to be higher than in upper body cases.   (Cormier JN, Askew RL, Mungovan KS, et al. Lymphedema beyond breast cancer. Cancer. 2010; 116:5138-49.)

Yikes!  This scares me even more than cancer recurrence!

While 80-90% of cases seem to occur within the first three years, the risk remains for the rest of your life.

A person’s chance of developing lymphedema, while highly individual, seems to increase, according to some studies, with the number of lymph nodes removed and can range from 6-70% over their lifetime.

The sentinel node, or the “leader” as I called it, is the first lymph node that drains the breast.

Sentinel node biopsy (SLNB) is the preferred standard of detection, because it’s assumed that if this node is negative for cancer there is greater than a 95% chance that the disease has not spread beyond that point.

If cancer is found here, the surgeon will usually go on to perform a total axillary node dissection (ALND).

Recovery is easier following SLND than after ALND, which involves removal of  the “axillary fat pad” in the armpit along with whatever nodes it contains, possibly numbering more than two dozen.

While theoretically, risk is increased with removal of more nodes, people differ in their healing ability to form additional lymphatic channels.  A person who has had more nodes removed may actually be less at risk than someone who had only a few removed if he or she is better able to form these pathways for lymphatic flow.

So I’m sitting here thinking “OK, I’m a pretty good healer.  Maybe I’ve dodged a bullet.”

Not so fast!

As it turns out, risk also increases with mastectomy itself and with chemotherapy, specifically anthracycline based treatments.

BAM and BAM!

My breast-less self thinks back not-so-fondly on the “Red Devil”.  In addition to possibly messing with my heart, could it now be taking aim at my lymphatic system?

I’m more thankful than ever to not have experienced the joys of radiation, which could set me up for a triple whammy.

Let’s make a list of troublemakers that can contribute to developing lymphedema, shall we?

  • node dissection
  • mastectomy
  • radiation
  • chemotherapy
  • old age
  • obesity
  • infection
  • injury to the limb on the affected side
  • poor nutrition

The first four are probably out of your control.

Aiming NOT to grow old seems counterproductive.  Isn’t that the goal?

Regarding the last four, The American Cancer Society recommends trying to avoid infections, burns and injuries.  Something as simple as an insect sting or cat scratch might lead to infection, triggering more lymph to fight it.  Lymph gets backed up and swelling can result.

To avoid or manage upper extremity lymphedema, they suggest the following:

  • Avoid insect bites, burns, skin irritants, hangnails and torn cuticles. Consider wearing gloves while gardening or doing housework.
  • Avoid tight fitting jewelry and wear loose fitting clothing on arms, chest and shoulders.
  • Avoid overheating – stay away from saunas, whirlpools, steam rooms, hot baths and sun bathing.  (What about hot flashes, huh?)
  • Don’t receive shots, have blood drawn or have blood pressure taken on the affected arm.  (I’m in a quandary because both sides were  messed with.)
  • If you are overweight and have experienced swelling, losing weight can help reduce it by reducing the amount of fatty tissue, which retains fluid and blocks lymphatic pathways.
  • Tennis, racquetball, golf and bowling are all considered risky sports because of repetitive shoulder movements.  So is scrubbing floors and dishes as well as pushing and pulling.  (Hmmm…vacuuming, moving furniture, washing windows……)
  • Keep the at-risk arm(s) spotlessly clean and use lotion after bathing.  (I love sweet almond oil as a natural moisturizer!)
  • Avoid heavy lifting with the affected or at-risk arm.  (I’m toast!) Never carry heavy handbags (loaded gym bags) with over the shoulder straps on the affected arm.
  • When traveling by air wear a well-fitted compression sleeve.
  • Consider using an electric razor when shaving neck (cervical lymph nodes) or armpits (axillary node dissection).

So are you supposed to live in a bubble, never to feel the summer sun on your skin? Will you have to hire movers to bring your groceries in?

Is this your ticket to avoid working out?

Nice try!

Studies have shown that you CAN and SHOULD exercise after healing fully from surgery and getting the go-ahead from your doctor.  Both weight lifting and aerobic activities are encouraged!

Start slowly, using as little weight and as few reps as possible, building up gradually.  Don’t assume that you’ll be able to match previous PRs right away, although it may well be possible to lift or exceed those in the future.

If your doctor has prescribed a compression sleeve WEAR IT!  Maybe it’s uncomfortable but it will really suck if your arm swells to the size of a watermelon.

A qualified Cancer Exercise Specialist or physical therapist can show you how to warm up and perform lymphatic drainage exercises and stretching before hitting the gym floor.

Pay close attention to any swelling, feelings of heaviness, skin texture changes like tightness, hardness or redness. Watch for any new aching, tingling, numbness or other discomfort in the area.  Note any loss of movement or flexibility in nearby joints as well as tightness in parts of clothing like sleeves, pant legs or shoes, or if collars, rings, watches or bracelets feel tight without your having lost weight.

If you notice any of the above symptoms, or if your affected limb becomes hot, red or swells suddenly call your doctor, nurse or lymphedema therapist immediately as these can be signs of blood clot or infection.  Likewise, call if you have an oral temperature of 100.5 degrees or higher that’s not related to cold or flu or if you have any new pain in the area with no known cause.

As for me, while remaining vigilant and barring complications, I plan to continue swinging kettle bells and lifting heavy stuff to the best of my abilities with my sights set on number five.

Do you think Hubby will carry my purse?

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