Cancer Archives - Lymphedema Therapy Source

April 2, 2023 By Rebecca Summers, OT, CLT-LANA, CSR Leave a Comment

Breast Cancer: Preventing Lymphedema

Is there any science behind it?

There are several recommendations for a person at risk of developing lymphedema and for those who have lymphedema (to prevent an exacerbation episode). But in the past year, I’ve heard some people say there’s no evidence backing up these precautions. Is that true?

^{RTCNCA, CC BY-SA 3.0 https://creativecommons.org/licenses/by-sa/3.0, via Wikimedia Commons}

Recommendations

First of all, what are the recommendations? The National Lymphedema Network (NLN) has a page of Position Papers (a summary of their position on topics). They have one called “Risk Reduction.”¹ It was established by their medical committee in 2012. It needs updating but the overall recommendations haven’t changed. If you have lymphedema, the NLN recommends you:

1. Have regular check-ups with a lymphedema specialist (likely to take measurements and assess any problems, garment fitting, etc.)
2. Notify your healthcare provider of any changes in your arm
3. Maintain a healthy body weight (or lose weight if obese)
4. Exercise (see the blog post on exercise here)
5. Wear your compression garments and replace them every 6 month to 1 year
6. Prevent cellulitis infections (and immediately treat any signs or symptoms of infection)
7. Maintain good skin care
8. Avoid trauma of the affected arm (such as needle sticks, bug bites, etc.)
9. Avoid constriction of the affected limb (such as tight bands, restrictive clothing, blood pressures)
10. Avoid extreme heat or cold (such as hot showers, sitting in a sauna)
11. Inform any surgeon of your lymphedema if surgery is planned
12. Avoid stasis (i.e. see exercise above and avoid sitting or standing for long periods)
13. Consider consulting a vein specialist for treatment if you have varicose veins or spider veins
14. Wear your compression and move around during air travel (note it doesn’t say “don’t fly”)

If you are at risk for lymphedema (i.e. if you’ve had lymph nodes removed and/or radiation), the guidelines are nearly the same with a few modifications (such as wearing a compression sleeve). These precautions are backed up by the Foldi Textbook of Lymphology² (a source I often reference).

For NLN guidelines, visit www.lymphnet.org.

(Photo by energepic.com/Pexels)

Rationale behind the recommendations

The NLN explains the rationale behind these precautions. However, it also notes there is limited research backing these recommendations. In theory (and many therapists would say in practice), these precautions make sense. Anything that could increase the blood flow will increase the lymphatic load. And anything that increases lymphatic load can increase your risk of lymphedema development or exacerbation. That doesn’t mean you will experience lymphedema or an exacerbation – just that you could.

My thoughts

Based on the theory and based on my experience of treating patients (and when they first developed symptoms of lymphedema), I recommend patients follow these guidelines. Next month, we’ll look at how to monitor your arm for potential lymphedema development or exacerbation based on symptoms. We’ll also learn how to measure your arm for baseline measurements.

References
1 https://lymphnet.org/position-papers
2 Foldi, M, Foldi, E. (2006). Foldi’s Textbook of Lymphology (2^nd ed.), p. 268-270. Germany: Urban and Fisher.

December 1, 2022 By Rebecca Summers, OT, CLT-LANA, CSR

Avoid using Your Arm – Really?

(Part 2)

Last month, we looked at one common fear among women who have had breast cancer – developing lymphedema. I told the story of a woman who came into the outpatient department where I worked at the time with a new onset of arm swelling after lifting heavy pots and pans while cooking for family during the holidays. This was an activity she didn’t regularly do. And that was the problem.

Another True Story

I opened a temporary Facebook group this past year to answer questions people had about lymphedema. The very first virtual meetup, a woman said she had been told not to fly. So, she hadn’t been to see her family a few states away in years! How sad! I couldn’t believe the misinformation and the radical impact on this woman’s life.

Flying

First of all, if you’ve had breast cancer, should you avoid flying to prevent or control lymphedema? No. My goodness, no!¹ You might consider getting baseline measurements with a certified lymphedema therapist and a compression sleeve (and glove, if warranted) as a preventative for the potential risk flying can impose.

But there’s no reason to avoid flying. What else can be done in everyday life to reduce your risk of lymphedema – according to research?

How to Safely Use Your Arm

Several years ago, I attended a continuing education course on breast cancer-related lymphedema presented by Jodi Winicour of Klose Training.² She mentioned a recent study reviewing strength training. I believe that was the PAL study from 2009.³ In that study, the safety of progressive strength training in breast cancer survivors was investigated. The study found slow, progressive weightlifting did not result in an increased incidence of lymphedema. But there are more recent studies that reinforce this principle.

Research

In 2016, the Integrative Cancer Therapies journal looked at the acute inflammation response in women with breast cancer-related lymphedema undertaking upper-body resistance exercise. Groups were divided into those participating in low, moderate and high-resistance loads. The findings were that lymphedema status and severity were not affected by the load lifted.⁴

In 2018, the International Journal of Nursing Sciences published an article summarizing the current literature on the effects of strength-training in breast cancer-related lymphedema.⁵ The article found that “supervised resistance exercise may be safe, feasible, and beneficial in patients with breast cancer-related lymphedema or [those] at risk for breast cancer-related lymphedema.”

And in 2019, the Danish Cancer Society Research Center noted in their study that “patients [previously] were encouraged to avoid strenuous activity of the affected arm because it was believed to stress the already compromised lymphatic transport system.” However, evidence suggests “that progressive resistance training is safe in terms of lymphedema onset and exacerbation.”

Final question

We’ve determined it is okay to use an arm affected by breast cancer as it relates to lymphedema (whether lymphedema is present or not). That leaves us with one question: How do you safely, progressively strengthen an arm to avoid causing or exacerbating lymphedema? You’ll have to wait for the next post … while I safely and progressively strengthen my fingers to type out the potential protocols.

References
1 https://lymphnet.org/position-papers (Air Travel)
2 https://klosetraining.com/about-us/faculty/
3 Schmitz KH, Troxel AB, Cheville A, et al. Physical Activity and Lymphedema (the PAL trial): assessing the safety of progressive strength training in breast cancer survivors. Contemp Clin Trials. 2009;30(3):233-245. doi:10.1016/j.cct.2009.01.001
4 Cormie P, Singh B, Hayes S, et al. Acute Inflammatory Response to Low-, Moderate-, and High-Load Resistance Exercise in Women With Breast Cancer-Related Lymphedema. Integr Cancer Ther. 2016;15(3):308-317. doi:10.1177/1534735415617283
5 Wanchai A, Armer JM. Effects of weight-lifting or resistance exercise on breast cancer-related lymphedema: A systematic review. Int J Nurs Sci. 2018;6(1):92-98. Published 2018 Dec 24. doi:10.1016/j.ijnss.2018.12.006
6 Ammitzbøll G, Johansen C, Lanng C, et al. Progressive resistance training to prevent arm lymphedema in the first year after breast cancer surgery: Results of a randomized controlled trial. Cancer. 2019;125(10):1683-1692. doi:10.1002/cncr.31962

September 1, 2021 By Rebecca Summers, OT, CLT-LANA, CSR 1 Comment

Janie’s Story (Part 1)

Janie* was my high school English teacher. She is also the first person I knew who had lymphedema (though I didn’t know it at the time). I recall seeing her walk down a hallway at school & noticing her left leg was larger than the right (she often wore skirts and dresses). I wondered why but never really gave it much thought. She was just “Mrs. Mitzer,” my English teacher. Another occasion, I noticed she wore a hose on her left leg that was stretched to the point that tiny gaps in the fabric could be seen. It would be years before I would understand why Janie’s leg was larger & why her sock was so stretched.

A photo of Janie from my high school year book

Not long ago I decided to transition in business with the purpose of raising awareness about lymphedema & being able to help a greater number of people. One way I am doing that is by telling the stories of people who have lymphedema & developing educational videos. Many of these stories will be from people I have treated. But this story is different. Given my new venture, it seemed fitting to pay tribute to the past & recognize Janie since she was the first person I knew who had lymphedema. Regretfully, she passed away in 2009. I wondered if her family would be willing to talk about her experience with lymphedema. I contacted her husband, Dennis, earlier this year.

The interview

Dennis graciously obliged. He has since remarried to Jane. Both Jane & Dennis were present for the discussion. The first question Dennis asked me when he saw my notepad was, “Is that notepad filled with questions?” I assured him it wasn’t. The notepad did have a few questions, but it was mostly filled with notes I had taken while reviewing Janie’s medical records which he had provided me before our interview.

“Is that notebook filled with questions?”

The beginning

Janie’s medical story begins in 1979 when she was diagnosed with stage 4B, nodular sclerosing classical Hodgkin lymphoma. At the time Janie’s cancer was found, it had spread beyond her lymph nodes & throughout her abdomen. Dennis remembered Janie waking up at night sweating, her pillow & night clothes soaked. Indications of Hodgkin lymphoma can include night sweats, fever, weight loss & other symptoms. She received several chemotherapy treatments & eliminated all signs of cancer (as a 1980 exploratory laparotomy confirmed). One of the potential consequences of Hodgkin lymphoma is secondary cancer including, but not limited to, breast cancer. That would later prove true in Janie’s case.

First signs of swelling

In April of 1982, Janie noticed swelling in her left ankle, but it resolved with elevation. Medical records indicate the swelling was graded at 2+. This means a finger could be depressed into the skin slightly (less than ¼ of an inch) or the tissue would hold a depression for up to a max of 15 seconds. There was fullness in the left lower part of her abdomen as well. The initial fear was lymphoma recurrence, but a CT scan & exploratory surgery of her left groin (inguinal lymph nodes) ruled this out. Imaging did reveal an enlarged left ovarian cyst. Doctors felt her leg swelling might be due to venous obstruction caused by this cyst putting pressure on her [left iliac vein] or due to scar tissue.

However, a medical note I read indicated suspicion of a superficial blood clot. A superficial clot is usually less concerning than a deeper one (called a deep vein thrombosis or DVT). Symptoms of a blood clot generally include swelling as well as pain, redness & warmth. Janie’s only symptom was swelling which initially went down with elevation. A venogram did not show a definitive clot, but this theory persisted in her medical records.

Suspect superficial thrombophlebitis

The name of the cancer Janie had, “nodular sclerosing,” indicates its behavior.^{1, 2} This cancer creates fibrosis and sclerosis or thick bands of collagen (scar tissue) in the lymph nodes. This would likely contribute to lymphedema in her left leg as it would likely impair lymph node function.

Other contributing factors

Janie also had several surgeries in the left inguinal & pelvic areas over time which would cause trauma & scarring. Between 1982 & 1984, she developed an infection in her left leg (twice) called cellulitis. She was a teacher & spent a good deal of time standing and sitting, increasing the pressure in her legs. Veins in the legs must overcome the pressure caused by gravity in order to return fluid to the heart. Over time, those veins begin to tire & weaken. The lymphatic system takes up the slack for a while, but just like veins, they can fatigue & weaken also. When they do, scarring ensues as molecules they normally remove now remain in the tissue. All these scenarios could have caused her lymphedema to get worse.

To be continued 10/01/21.

References
¹Bankov K, Döring C, Ustaszewski A, Giefing M, Herling M, Cencioni C, Spallotta F, Gaetano C, Küppers R, Hansmann ML, Hartmann S. Fibroblasts in Nodular Sclerosing Classical Hodgkin Lymphoma Are Defined by a Specific Phenotype and Protect Tumor Cells from Brentuximab-Vedotin Induced Injury. Cancers (Basel). 2019 Oct 30;11(11):1687. doi: 10.3390/cancers11111687. PMID: 31671543; PMCID: PMC6896072. Available from: https://pubmed.ncbi.nlm.nih.gov/31671543/.
² Kamal MM, Khude SR, Yadav SB, Raut WK, Pangarkar MA. Syncytial variant of nodular sclerosing Hodgkin’s disease: A diagnostic pitfall in fine-needle aspiration cytology. J Cytol. 2014;31(2):91-92. doi:10.4103/0970-9371.138674. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4159904/.

April 7, 2021 By Rebecca Summers, OT, CLT-LANA, CSR Leave a Comment

Cancer and Lymphedema Video

For the American Cancer Society

In 2020, I was searching for a deeper knowledge of how to best serve the needs of people with lymphedema. In the process, the American Cancer Society (the Dallas chapter) asked me to do a video. If you’ve had cancer and are seeking to better understand lymphedema, check out the below links. One video is in English and one video is in Spanish.

Video (in English) Video (in Spanish)

If you’d like to share about your lymphedema interests and needs, you can take this survey. What would you like to see more of? What would you like to know more about? As content continues to be created, information you provide will be used to maximize the potential benefit of these resources.

September 7, 2020 By Rebecca Summers, OT, CLT-LANA, CSR Leave a Comment

Cancer: Genital Lymphedema

When you think of lymphedema, you probably think of an arm or a leg. You might think of the neck or chest. But the genitals?

Few people think of swelling in this area, but it can & does happen. Though not nearly as often as other body parts, I have addressed this area in both men & women. It’s extremely embarrassing for patients to have lymphedema here. But anywhere there are lymphatic vessels, there is potential for lymphedema. In the case of cancer, removal of inguinal nodes (lymph nodes in the groin) &/or radiation can contribute to development of genital lymphedema. Embarrassment is just one complication.

When there’s swelling, things can get messy. Urine flow may be misdirected (particularly in men). Clothing can be uncomfortable, mobility can be impaired & simply getting comfortable sitting can be a challenge. What about sexual function? What about body image & self-esteem? What about radiation burn, hypersensitivity or open wounds due to cancer? These are all subjects with which a therapist can help.

Everyone will present in their own way. For unconventional approaches, sometimes a therapist might get creative to problem-solve a solution (for example, designing a donut-shaped pillow for sitting if there’s a wound, discussing wound dressing options & infection prevention). In most cases, compression is needed to maximize volume reduction in additional to manual lymph drainage. Bandaging, foam inserts & compression shorts are all potential options depending on your situation. Other modalities such as cupping may be utilized as well to help break up fibrosis (firm skin caused by a scarring process).

If you’re struggling with this type of swelling or if you know someone who has had genital cancer & so may be at risk, know treatment is available. Click here (go to page 3) to see excellent videos about patients dealing with genital lymphedema. One man affectionately called his compression “ball crushers.” Now doesn’t that sound inviting?

Additional reading for men (caution – graphic content): https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3963354/

https://hospital-medical-management.imedpub.com/a-novel-treatment-program-for-themanagement-of-acute-male-genitaledemalymphedema.pdf