Lymphedema Therapy Source

  

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Breast Cancer: Why See A Therapist

One word no one wants to hear is “cancer.” And when the diagnosis is given, a million thoughts run through a person’s mind. “Am I going to die?” “Will I lose my hair?” “Will I lose my breast?” As if the questions aren’t enough, the bombardment of medical terms and doctor specialties may ensue.

What’s lymphedema got to do with it?

In this early stage, the thought of potential lymphedema development is not a high priority (if it’s even discussed at all).

I’ve heard many stories from patients who were not told about the potential risk of developing lymphedema after lymph node removal and/or radiation. At a minimum, anyone going through cancer who has a lymph node removed and/or radiation should at least be given a handout on the signs and symptoms of lymphedema, what it is and what to do if signs and symptoms appear. Being given education about cellulitis and receiving baseline limb measurements would be an added benefit.

Photo by Pexels / Anna Tarazevich

How to recognize lymphedema onset

If you’ve been diagnosed with cancer, and you’ve had one or more lymph nodes removed (and/or radiation), you are at risk for developing lymphedema. How do you recognize this swelling condition? Here are signs and symptoms of lymphedema development according to stage:

  • stage 0 (latency): no visible swelling but the involved area may feel heavy or achy
  • stage I (reversible): protein begins to accumulate, visible swelling is present, elevation reduces swelling
  • stage II (spontaneously irreversible): fibrosis (firmness) develops, pitting becomes more difficult, cellulitis infection may occur
  • stage III (elephantiasis): tissue no longer indents (non-pitting) & becomes more firm, skin changes occur (hyperkeratosis, papillomas), lobules form, cellulitis infections may be common

Next month, we’ll look at recommendations to prevent lymphedema. Is there any science behind those recommendations?

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Contraindications to MLD

One of the more popular posts I’ve written is about contraindications to treatment (time when treatment should not be done). Lymphedema treatment includes manual lymph drainage (MLD), multi-layer short-stretch bandaging, skin care and exercise. Both MLD & bandaging have specific precautions.1

General Precautions

The general precautions for MLD include:
– Active infection (caused by pathogens)
– Untreated cardiac failure
– Renal failure

There’s a relative contraindication for MLD:
– Malignant lymphedema (active cancer is causing the swelling)

Specific Precautions

But there are also specific precautions for MLD depending on where it is performed on the body. A sequence for MLD typically starts at the neck where the fluid drains. It doesn’t matter if swelling is in the legs, arms, head or elsewhere. But not all people will be appropriate for a neck sequence due to specific contraindications. For example, if someone has a cardiac arrhythmia related to an atrioventricular block or “AV-block” (referring to a block of the AV node in the heart’s electrical system). Doing a neck sequence could potentially stimulate the vagus nerve and cause cardiac arrest.

AV node

Understanding General Precautions (Active Infection)

So why are the general precautions a concern? In the case of an active infection caused by a pathogen (like bacteria in a cellulitis infection), performing MLD may cause the infection to spread. Fascinatingly, even though arterial & lymphatic flow increases during inflammation, in local inflammation, lymph vessels near the site of infection constrict. Thisprevents bacteria from escaping and entering the rest of the circulation.  In performing MLD, this spasm could be relaxed, allowing normal flow to resume. The bacteria might then be allowed to move into the rest of the body & the infection could become systemic (i.e. sepsis).

(Untreated Heart Failure)

In the case of untreated heart failure, the concern is increasing pressure. The pressure in the veins returning blood to the heart near each collar bone (clavicle) is usually low. This is where lymphatic fluid returns to the body’s blood circulation. In untreated heart failure, the pressure is increased in these veins. Stimulating lymph flow with MLD would only add more fluid to a congested area and further increase the pressure. This can contribute to heart damage.

venous angle (top right illustration)

(Kidney Failure)

In the case of kidney failure, there is swelling in the body (often the lower part of the body). MLD would increase the amount of fluid returning to the heart and subsequently to the kidneys, increasing the fluid they must filter. This could overtax them. But the main reason MLD is not performed is because it would be of no use (if swelling being treated is due to kidney failure). That’s because kidney-caused swelling is edema, not lymphedema. The lymph vessels are already working as hard as they can to help get rid of the excess fluid. MLD speeds up lymphatic flow but beyond its normal high-working speed.

(Active Cancer)

In the case of cancer, MLD is a relative precaution. Meaning, there’s some room for discernment. The primary reason for avoiding MLD in the case of cancer is the potential to spread the cancer cells. (Cancer spreads through one of two ways: blood or lymph flow.) However, according to Foldi, molecular biology showed metastasis formation is an active process controlled by the cancer cells themselves. For example, cancer cells secrete a protein called vascular endothelial growth factor C (VEGF-C). 2 This is responsible for creating new lymphatic vessels within and around a tumor from existing ones (lymphangiogenesis). Nonetheless, many therapists prefer to avoid the area of the tumor to avoid any potential accusation of / or potential of hastening cancer cell transportation.

It’s also important to know if a patient is receiving adequate cancer treatment and that the cancer is responding. One note: Some suggest avoiding MLD for 2-3 days after chemo to allow the drug(s) to remain in the body and do their job. Others suggest proceeding with MLD to help distribute the chemo throughout the body and to use gloves to prevent transmission of chemo through the skin to the therapist. I would tend to side with the former group (avoid MLD – at least in the area of the body directly affected by the tumor1). But it’s important to check with the oncologist before providing any treatment.

References
1 Foldi, M, Foldi, E. (2006). Foldi’s Textbook of Lymphology (2nd ed.), p. 275-276. Germany: Urban and Fisher. Foldi, M., & Foldi, E. (2012). Foldi’s Textbook of Lymphology (3rd ed.). Urban and Fisher.
2 Yan, H., Zhang, C., Wang, Z. et al. CD146 is required for VEGF-C-induced lymphatic sprouting during lymphangiogenesis. Sci Rep 7, 7442 (2017). https://doi.org/10.1038/s41598-017-06637-7

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Avoid using Your Arm – Really?

(Part 3)

In this final post on arm use after breast cancer, we’ll take a look at research-backed strengthening. But first, an announcement.

Announcement

from the Lymphedema Treatment Act website

The Lymphedema Treatment Act (LTA) passed Congress3 just before Christmas (passing the House of Representatives – Bill H.R. 3630 on 11/17/221 & Senate – Bill S.1315 on 12/23/222). This means compression garments will be covered by Medicare. Say thank you to your congressmen & women by sending an email here.

Research Says

According to research, how should you safely, progressively strengthen your arm to avoid causing or exacerbating lymphedema? (Disclaimer: This is my general conclusion of the articles I reviewed. Be sure to ask your certified lymphedema therapist what the best protocol is for your situation before engaging in any exercise. Proper form is important, and you should not experience pain with exercise. Stretching & strengthening should be done slowly and with control.)

Step One – Warm Up and Stretch

According to the Pal study,1 participants started with 10 minutes of cardiovascular warm-up followed by brief stretching of the muscles to be strengthened.

Step Two – Focus on the Core

Participants then did 5-15 minutes of core strengthening (spine stabilizing and abdominal exercises) to prevent injury during arm strengthening.

There are 29 pairs of muscles that make up the core.4 The study doesn’t specify which core muscles were targeted. But I anticipate these would include the glutes and paraspinal muscles,2 transverse abdominus, quadratus lumborum and obliques.

According to a Sports Medicine article,4 proper core strengthening might start with:

  • Cat camel (or cat cow) stretch. This is a common Yoga stretch done in a quadruped position on the hands and knees.
  • Abdominal bracing variations (it’s important to properly engage the abs through abdominal bracing exercises before advancing core exercise).
  • Bird dog pose (alternating arm and leg lifts in quadruped) or planks to engage paraspinal muscles. Modified versions of side planks (such as standing side trunk flexion) might be added to engage quadratus lumborum and obliques before doing floor side planks. (For a more robust and difficult core-strengthening program, visit here.3  But know that many people will need to start with easier, modified versions.)

The number of repetitions will vary according to a person’s fitness and status. Anywhere from 5-10 reps of each is a good place to start and working up to 15 reps.

Step Three – Strengthening

Start with no weight or 1 lb. (You can also use a low-resistance Theraband.) If there are no changes in symptoms or lymphedema-onset by the next week, increase weight by 0.5 or 1 lb.

(Two 2 Kg. weights image licensed under Creative Commons Zero by Pixabay/Pexels)

The goal is to reach 3 sets per exercise* in the first 3-4 weeks. As a general rule, increase weight after 4 consecutive sessions lifting the same weight for 10, 10, and 12 reps for sets 1, 2, and 3, respectively.1

  • Tips:
    1. If there are changes in symptoms, the exercise thought to be causing the problem should be skipped or a lighter weight should be used until symptoms clear up.
    2. If 2 sessions are missed, deconditioning may result. Resistance should be reduced and gradually increased as outlined above.
    3. Monitor symptoms weekly for changes indicating decline (i.e. swelling, tightness, discomfort, etc.) and measure monthly1 (or more often if you want to be more vigilant).

*Exercises might include: Chest press, lat pull-down, bicep curl, triceps extension, lateral arm raise, wrist curl 5 among others.

Step Four – Repeat Step One with Cool Down Stretching (hold positions for 30 seconds)




References (blog)
1 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
2 https://www.healthline.com/health/paraspinal-muscles#takeaway
3 https://www.mayoclinic.org/healthy-lifestyle/fitness/multimedia/core-strength/sls-20076575
4 https://journals.lww.com/acsm-csmr/Fulltext/2008/01000/Core_Stability_Exercise_Principles.14.aspx
5 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

References (Lymphedema Treatment Act)
1 https://www.congress.gov/bill/117th-congress/house-bill/3630
2 https://www.congress.gov/bill/117th-congress/senate-bill/1315/text
3 https://buddycarter.house.gov/news/documentsingle.aspx?DocumentID=10733

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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

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Avoid using Your Arm – Really?

(Part 1)

(The initial post this month on pumps will be continued later. Due to time constraints and recent literature review, this post has been updated to reflect a common concern among women with breast cancer – developing lymphedema.)

Fear

What’s one common fear among women who have had breast cancer? Developing lymphedema. Several women have expressed worry about doing an activity that would cause lymphedema. Long-standing precautionary measures have included avoiding blood pressure measurements in the affected arm, avoiding needle sticks, and using the unaffected arm to carry objects instead.1

These precautionary measures have morphed into an irrational fear of using the affected arm (to prevent lymphedema or to prevent a flare up of existing lymphedema). The rationale behind such traditional precautions is that any trauma or use which increases blood flow to the affected arm could increase the amount of fluid the lymphatic system must transport. That may overburden the compromised lymph system and cause lymphedema (or make it worse).

Contributing Factors

There are factors that contribute to a person’s likelihood of developing lymphedema: Collateral pathways (alternative routes), how many lymph nodes were removed, whether radiation was done, age, weight, etc. Two people can have similar circumstances, yet one develops lymphedema and the other doesn’t. What about overtaxing the arm and causing lymphedema? Let’s take a look at a true story.

True Story

A long time ago, I had a patient come in who had experienced breast cancer, lymph node removal and radiation. Years went by with no swelling, and then one day near the holidays, her arm began to swell. What happened? She described her activity just before she developed swelling. She had been lifting several heavy pots and pans, cooking for family. This wasn’t an activity she typically did. That’s “what happened.” She was doing an activity she hadn’t conditioned her affected arm to do. In other words, a person can’t go from being a couch potato to running a marathon the next day without increasing the risk of injury.

Research

Several research articles have demonstrated that avoiding using an arm is an unnecessary precaution. In fact, avoiding use may negatively impact a person’s quality of life and even increase the risk of lymphedema due to deconditioning (making an arm more prone to injury).2 So how can you safely use an arm after breast cancer? We’ll take a look at what research says next time.

References
1 https://lymphnet.org/position-papers
2 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.

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Featured in Entrepreneurial Article

Lymphedema Therapy Source was recently featured in an entrepreneurial article by Subkit, an organization that helps entrepreneurs and small business owners grow and learn. They cover a lot of industries (food, hospitality, health, cosmetics, home, etc.). You can read the article here: https://gosolo.subkit.com/rebecca-summers/.

What’s your business and who are your customers?

Lymphedema Therapy Source, PLLC provides complete decongestive therapy (CDT) for people with lymphedema (or aspects of CDT like manual lymph drainage for other conditions such as wound healing, post-op plastic surgery, etc.). And compression garments are also measured and provided.

Tell us about yourself

I was working as an O.T. and had a patient who had had a bilateral mastectomy (both breasts removed). She developed lymphedema in both arms as a result, and I couldn’t help her. My reason for becoming a therapist was to help people, so I decided to get special training to be able to help others in the future. Motivation comes from the desire to help improve the lives of others.

What’s your biggest accomplishment as a business owner?

Staying in business since becoming self-sustained as an entrepreneur in 2013.

What’s one of the hardest things that comes with being a business owner?

The hardest part is the many hats an entrepreneur must wear (without the training). You must learn as you go unless you find a successful mentor who has done exactly what you want to do.

What are the top tips you’d give to anyone looking to start, run and grow a business today?

  1. Do your pre-launch homework. (Talk with others doing the kind of business you want to do. If you can find a mentor who is where you’d like to be, hire them and/or offer some type of service in return for their knowledge and time.)
  2. Remember the golden rule (treat others as you wish to be treated). Whether integrity, kindness, patience, or service – put yourself in your customers’ shoes and most times, you’ll know what to do.

Is there anything else you’d like to share?

I’ve been an OT for over 20 years and self-employed half of that time. Being an entrepreneur is fulfilling. I like the challenge and being the one to make the decisions. But there’s certainly a lot of work and risk that goes with it. A key is enjoying what you do, finding success while doing it and never forgetting that life isn’t solely about money or accomplishment. No one reaches the end of their life regretting they didn’t make more money or spend more time at work. The regret is more often not reaching their potential and not having spent more time with those they love (or mended bad relationships they cared about).

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Actor Steve Guttenberg

Actor Steve Guttenberg

Many of the posts on the Facebook page have been about famous people linked to lymphedema. You may know actress Kathy Bates (spokeswoman for the Lymphatic Education and Research Network – also known as LERN) has lymphedema. But I recently learned another entertainer joined forces with LERN: Actor Steve Guttenberg.

You may be familiar with Steve through movies like Three Men and a Baby, Police Academy and Short Circuit from the 1980s (I remember them all!).1 He doesn’t have lymphedema, so how does lymphedema fit into the picture?

Steve became an ambassador for LERN because his mother developed lymphedema due to breast cancer. She had (presumably) axillary lymph nodes removed leading to arm lymphedema. You can read more about his story here (https://lymphaticnetwork.org/news-events/steve-guttenberg-nih).

1 https://en.wikipedia.org/wiki/Steve_Guttenberg

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Letter to Congress

The Lymphedema Treatment Act is an important piece of legislation that has been seeking passage for several years. You can find out more about it here.

The Act was initiated by Heather Ferguson who had twin boys. One of her sons was born with primary lymphedema. The lack of insurance funding to cover lymphedema compression supplies (i.e. compression garments) was recognized as a problem. Heather sought to create change.

Change began locally in her state of North Carolina. She has been seeking coverage nationally by changing Medicare law to require coverage of compression garments for lymphedema. Medicare will set a precedent for other insurance carriers to follow.

You can find out how to contact your Congressman or woman via the below video. I did. And I recently heard back from Representative Burgess in the attached letter. Take a moment – literally less than 5 minutes – to make your voice heard and create change.

Letter from Congressman Burgess

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Lymphedema Amputation?

Last month, I saw a news posting about Bachelorette’s Cam Ayala.

He had just had an amputation due to lymphedema. I hadn’t heard of Cam until learning of his experience with lymphedema. (I don’t watch the Bachelorette; I actually don’t even own a TV!) It’s unusual to hear of an amputation being needed as a result of lymphedema. Is it possible for lymphedema to require amputation?

I am not aware of any cases in which lymphedema alone was the cause of an amputation. I would be certain that there have been a few amputations when no other treatment option was available or when no one knew better. There are many cases (particularly in a leg) when other factors may be the root cause. For example, someone may have poor arterial blood flow (which carries oxygen & nutrients to tissues). Such a condition is peripheral artery disease; ischemia could cause tissue death & require amputation. Someone may have a severe accident, damaging a limb so extensively that salvaging the extremity isn’t possible due to blood vessel damage, lymphatic vessel damage, tissue damage, etc.

According to the government site (Medline.gov),1 factors that may lead to amputation include:

  • Infections
  • Tumors
  • Severe burns or frostbite
  • Nonhealing wounds
  • Loss of function or loss of sensation (increasing risk of injury).

Cam was diagnosed with primary lymphedema at age 11. I wondered about the possibility of lymphangiosarcoma. But apparently, he had had numerous knee surgeries (17 in total) on his primary lymphedema leg in the past. The 16th was a knee replacement that wasn’t done correctly.2 He also had a blood clot at some point & developed osteomyelitis – a serious bone infection. With lymphedema, the ability to fight infection is already reduced in the involved extremity.

The June 2022 surgery was an elective, above-knee amputation. He opted to have it done due to concern of a potential recurrence of osteomyelitis. If such infection did reoccur, a prosthetic device would likely be more difficult to fit, and a higher amputation would be needed. You can listen to an interview just before his hospital discharge here (skip to minute 7.45).

In another video,3 he talks about the challenge of people’s perception (skip to second 16). We live in a society that seems to demand perfection & social media exacerbates the illusion of perfection. He suggests what he’s learned is to “find your peace [with your own shortcomings], give yourself grace & surround yourself with people who are going to build you up, not just bring you down.” It reminded me of author Bronnie Ware’s findings.

Bronnie worked in palliative care. She summarized common themes in a book called Regrets of the Dying. They included:

  1. Having courage to live a life true to yourself & to not live by what others expected of you.
  2. Not working so hard you neglect relationships that matter to you.
  3. Having the courage to express your true feelings.
  4. Staying in touch with your [real] friends.
  5. Not letting the fear of what others will think prevent you from enjoying life & laughing.4

They boil down to relationships (with others & yourself) & not letting fear limit your potential. Having spent some time with people who were facing their own mortality myself, it’s sobering to recognize how the anticipation of an impending death causes many unimportant things to fall away. Sometimes hitting rock bottom (as Cam talks about) can create a similar moment when things of lesser importance fade, & you take stock of life. You take time to reflect. You take time to listen. And your perspective shifts.

For anyone who may have an amputation & thinks their athletic life is over, check out these inspiring people: https://www.scheckandsiress.com/blog/10-famous-amputees/.  Visit the Amputee Coalition5 & the Challenged Athlete Foundation6 to find out about sports opportunities for people who have had amputations.

Rest assured, lymphedema alone is seldom a reason for amputation. Cam had several surgeries, a blood clot, osteomyelitis and a poor knee replacement that culminated in an elective amputation from which he is recovering. He anticipates getting his prosthesis around July/August. Best wishes to Cam in his recovery & going on to lead an amazing, happy, fulfilling life as I am certain he will. Heck – he’s already got tickets to see Lauren Daigle in September! Enjoy that mid-September concert, Cam!

References

1 Medline (https://medlineplus.gov/ency/article/007365.htm)
2 https://www.youtube.com/watch?v=Ia3XjXxRqE8
3 https://www.youtube.com/watch?v=sKG6OkIZNlg
4 https://bronnieware.com/blog/regrets-of-the-dying/
5 https://www.amputee-coalition.org/resources/adaptive-sports-programs/#:~:text=U.S.%20Paralympics&text=Sports%20available%20for%20individuals%20with,sled%20hockey%2C%20and%20many%20others
6 https://www.challengedathletes.org/athletes/


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309 W. Eldorado Pkwy
Little Elm, Texas 75068-5196
214-422-8265
214-614-9352 fax
info@LTStherapy.com

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