Lymphedema — never think you’ve dodged a bullet

March is Lymphedema Awareness Month. Even today, some doctors, including oncologists and surgeons, downplay the risk of their breast cancer patients developing lymphedema (LE).

Before undergoing surgery, including a lumpectomy, and before beginning radiation therapy, have a discussion with your doctor about LE risk.

You might want to read, Lymphedema, What’s a Breast Cancer Patient’s Real Risk? And/or Why Is Lymphedema Still Such a Mystery?

I’m delighted to share this post by my friend Linda. She was recently diagnosed with LE after thinking she had dodged this particular bullet.

Turns out, not so.

Thank you, Linda, for sharing so candidly about your experience. Be sure to leave a comment or ask Linda a question at the end of this post.

Never think you’ve dodged a bullet

by Linda Catanzaro Boberg

I thought I’d dodged the lymphedema bullet. WRONG. I’m enduring another wonderful cancer side effect (or effuck as my cancer siblings refer to it) — lymphedema.

My mom used to say, “Never ask if things could be worse, because they can.”

So, in my cancer-world existence, I try to avoid even thinking about what could be worse (because metastatic breast cancer is worse, believe me). But I wish she’d advised me to never even think that I’ve dodged a bullet.

First, let me say that I am not a doctor, or a lymphedema therapist, or an expert on it. So, if your hand, arm, breast, chest, or back on the cancer side of your body is swelling up, get to your doctor. It could be another medical condition if it is not lymphedema.

I will admit that I didn’t really understand what it is, and I didn’t even ask about it before surgery. I don’t recall the doctor even telling me that she was going to remove lymph nodes during my second lumpectomy.

Here’s how lymphedema is explained on the Mayo Clinic website:

Lymphedema is most commonly caused by the removal of or damage to your lymph nodes as a part of cancer treatment. It results from a blockage in your lymphatic system, which is part of your immune system. The blockage prevents lymph fluid from draining well, and the fluid buildup leads to swelling.

Kim, my wonderful therapist, told me that once a node is removed, your lymphatic system is damaged, and the lymph is searching for a way out.  

Sixteen of my nodes were removed during my second breast cancer lumpectomy in 2014. Nine of them were cancerous.

I thought I had beaten this particular curse since that surgery happened seven years ago.

Two years ago, while vacationing in Ireland, my hand swelled up. I blamed it on hoisting a heavy bag into the rental car’s trunk. I thought I heard a ‘pop’ as I did this. My hand stayed swollen for the entire time we were in Italy.

One evening, the pressure in the hand was so great that my husband insisted we find an Urgent Care in Rome. When we couldn’t find one, he took us to hospitals . . . or what he thought were hospitals.

Here’s what we learned about trying to find care:

• Romans who do not interact daily with tourists do not speak enough English to help said tourist. And in all fairness, as an American who knows a smidgeon of Italian, I could not speak to them either about medical issues.

• I dreaded the thought of having to explain my complicated medical history which includes cancer, chemo, surgeries, radiation, craniotomies, a stroke, and four medications that they probably aren’t familiar with. It’s enough to put me off from ever going to Europe again . . . maybe.

• Not sure that there are Urgent Cares in Italy.

• Medical facilities in Rome appear to have set times; none were open at dinner time.

I knew that Italian medicine was different because when my daughter was in Italy, she was given a really high dose of a med (by US standards) by an Italian doc trained at USC!

Anyway, my hand’s swelling went down on the plane ride from Rome to Chicago, and then blew back up on the flight to LA that had to make an emergency landing in Vegas. I watched it balloon back up.

I wrestled with whether I should fess up about my hand swelling right up until my doctors’ appointments, then decided I better be honest.

Most cancer patients reach the point in their journey where they mentally argue about what is and is not important to tell the doctor. (At least, I have. Maybe that’s another blog post.)

My breast surgeon said, “You don’t have lymphedema. And since it’s been a while since your surgery, you won’t ever get it.”

My then oncologist said, “No, you can’t get lymphedema. It’s been too long since the nodes were removed.”

(Keep in mind, this same doctor told me that the pain I had in my feet — still have! — had nothing to do with cancer treatment. I have since fired her.)

After these visits, I was relieved and went back to life with no more swelling until two months ago, two and a half years after that European trip.

I’d been working in a garden that I really hope to fix up, and thought I’d overdone things the day I raked, pruned, cut, and pulled a lot from said garden. 

It took a while, but eventually my hand swelling went down.

A few weeks later, it snowed ten inches and I helped shovel. Stupid me! That night, my hand and my arm blew up.

Next day, my husband and I searched for compression sleeves and gloves. It took five stores before we found them (and I should NOT have put one on.)

The timing of it all coordinated with a visit to the oncologist who declared it lymphedema and sent me to a therapist.

This oncologist and therapist said anyone who’s had nodes removed can get lymphedema at any time. 

The therapist said she was surprised I hadn’t had swelling sooner given the  severity of my cancer and the number of nodes removed.

I could comment on the need for better communication here, but that’s another post too.

I went twice a week to a lymph therapist who massaged my arm and wrapped it. It’s not horribly uncomfortable unless you type a good part of each day — which is me — or when you try to sleep — which is also me.

I’ve had three instances where it felt like my arm was going to blow up from the pressure. Thankfully, those pressure-filled times do dissipate, but I still haven’t figured out how to sleep well.

Things I’ve learned about lymphedema:

• More than I ever wanted to know about the lymph drainage system. It basically drains lymph, which is waste, from your body. 

• Don’t ignore this! A minute ago, I said that I sometimes wrestle with what I want to tell my doctors. Good thing common sense again prevailed and made me tell her about this. It can lead to other medical problems like cellulitis.

• Do not treat yourself. A trained therapist can massage your tissues, but your swollen areas will indicate where you’re having problems, where you need massaging, and how you need to be wrapped. And don’t put a compression sleeve/glove on. Your therapist will decide when the time is right, how strong that compression should be, and when you’ll need to wear the garments.

• Can you overwork your arm into a swelling? Yes. And at some point, my therapist is going to evaluate my outdoor gardening habits and, I hope, make suggestions. Two things I don’t want to lose are my ability to write/type and the fun/therapy I find in gardening.

My dominant arm was wrapped up 24/7, seven days a week beginning right after Christmas. It was not fun.

They say that using your non-dominant hand is good for your brain. 

Well, maybe, but let me tell you that it’s not as strong as the dominant hand and it’s just plain hard to load or unload a dishwasher, wipe down counters, dress, or even clean yourself!

You can’t imagine how much of your wardrobe won’t work because of the size of the damn wrap. And it’s hard to make lasagna or even spaghetti sauce because you can’t take the therapist’s wraps off and on.

On January 31, the therapist declared my arm was 98% back to normal. She measured my arm for the compression garments you can buy from reputable companies and I ordered them immediately.

Hopefully, the swelling will be controlled by compression garments that I can take on and off myself, but it is my responsibility to wear these garments as she taught me all day, every day, for the rest of my life.

It’s been fun (not) putting them on although there are grippers that you can buy if you don’t have someone like my determined husband to pull them up for you.   

P.S. I typed most of this using my left/non-dominant hand.

Actress Kathy Bates (Misery, Fried Green Tomatoes) has endured breast and ovarian cancer and is a spokesperson for The Lymphatic Education and Research Network. Below is a YouTube clip of her explaining her own path with the disease.

Bottom line, if you think you’ve dodge the lymphedema bullet for certain, think again.

No need to be paranoid. Just aware.

Do you have lymphedema and if so, when and how did your symptoms present?

If applicable, were you at any time informed about your LE risk?

Do you have a comment or question for Linda?

BIO: Linda Catanzaro Boberg was diagnosed in 2013 with Stage 3 Pleomorphic Lobular Carcinoma, ER+, PR+. She still doesn’t completely understand what the hell that means, but feels like she’s earning an unwanted Ph.D. in cancer. She’s gone bald twice, once for cancer and once for brain surgery, and is in the process of again losing hair as she undergoes treatment for Stage 4 Metastatic Breast Cancer which was diagnosed in April 2019. Her latest cancer effuck is lymphedema, Stage 2, in her right hand and arm.

She’s a wife of 43 years, mother of three, grandmother of two (one of which she could not meet until recently because of Covid) and the sister of six women – NONE of which have cancer. 

Linda writes Tales of Resilience under the pen name Adelyn Zara.  All the books reference cancer thriver Lynn Rue. Her first book, Finding Peace, introduces Lynn, a widow and a woman trying to find normal after cancer treatment who meets and falls in love with Donovan. The second in the series, Making Magic, is about mental illness but is also about the reaction of adult children to sick parents. The third book, Overcoming Obstacles, is about Lynn’s CPO Alek who, along with the heroine Heather, has resilience required outside of the medical world.

Gardening, working against mental illness stigma, staying aware of cancer issues, and writing are keeping this retired, former college student advisor busy.