This article may be too late for most of us. I had lymphedema for a short while in 2006 after surgery removed many lymph nodes in my right arm. However, the lymphedema resolved itself within a few weeks of sleeve wear. In 2019, it was swelling of my right arm which prompted me to seek medical attention, and be diagnosed with MBC. Since then, if anything, the swelling has become worse. I've been given every type of sleeve imaginable but all that happens is the arm immediately reswells when the sleeve comes off (or I lower the arm from elevation). Winter coats are proving to be a problem...
Here's the summary for the article:
"THURSDAY, Nov. 10, 2022 (HealthDay News) – Prophylactic use of compression sleeves after axillary lymph node dissection reduced and delayed arm swelling in women with breast cancer at risk for lymphedema, according to study results presented at the annual meeting of the Clinical Oncology Society of Australia, held from Nov. 2 to 4 in Brisbane.
"Arm lymphedema is common following axillary lymph node dissection, and once established, reversing the condition is challenging,” Vincent Paramanandam, Ph.D, of the University of Sydney, told Elsevier’s PracticeUpdate. “Preventing arm swelling is important to avoid persistent arm lymphedema, associated tissue changes and poor quality of life. Preliminary data support the prophylactic use of compression sleeves, but it needs to be confirmed.”
"Paramanandam and colleagues enrolled 307 women newly diagnosed with breast cancer who were randomly assigned to a compression group or control group after axillary lymph node dissection. Both groups received standard postsurgery care, but patients in the compression group also wore compression sleeves starting on the first postoperative day until three months after completing chemotherapy and radiotherapy.
"Patients in the compression group had a lower one-year arm swelling rate than those in the control group based on bioimpedance spectroscopy (BIS; 42 versus 52 percent) and based on the relative arm volume increase (RAVI; 14 versus 25 percent). The hazard ratios for arm swelling in the compression group versus the control group were 0.61 (P = 0.004) based on BIS and 0.56 (P = 0.034) based on RAVI.
“The take-home message is that women who undergo axillary lymph node dissection will benefit from the prophylactic use of compression sleeves,” Paramanandam told Elsevier’s PracticeUpdate. “However, some women may develop arm swelling even with a prophylactic compression sleeve. Therefore, it is critical to educate women about lymphedema symptoms, arm measurements, and pinching and pitting tests so they can self-identify arm swelling early and seek help. This combined approach will significantly reduce the burden on the health care system.”
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Hazelgreen
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I’m really glad you shared this article because it’s such an important discussion for anyone having breast cancer surgery. I used to teach a program at the YMCA to help those who’d undergone cancer treatment to get fit and healthy. We were blessed to have a local lymphedema specialist who would come in to talk to all of our groups that we worked with, and a fair number had some kind of swelling already going on.
It’s great that someone is looking at this issue, not enough are paying attention to it!
Maybe this would be helpful and I’m really sorry you’re in your current situation with lymphedema because I understand how painful and limiting it can become. Have you tried searching for a local lymphedema specialist who does manual lymphatic drainage? This is really what you need as well as the sleeve. It can usually be done by yourself but it is very important to be instructed and guided as to how to do it the correct way. If you’re in the Sydney area (I saw the article was from an Australian study) there seems to be someone in that area via this site.
If not in this area a call to her might help you locate someone else local to you. Or there maybe a different organization for whatever country you’re in. Someone with much more than a weekend of training is important as there are short training certs out there so be mindful of that. Many masseurs in America claim to do drainage but they don’t have comprehensive training.
After working with many survivors at the Y I would love to see more focus on less initial lymph removal unless absolutely necessary. (I think there was study showing removal of lots of nodes didn’t help extend overall long term survival). And a protocol everywhere of proper education to patients after surgery about the importance of patients paying attention to the risks and how to avoid getting it in the first place. This is really key. It would make me upset to learn how many got it by innocently doing some everyday activity and not realizing the impact that action could have on them getting lymphedema. I felt so bad for these people because in many cases they were never told anything about it at all. And that needs to change. (Perhaps I should start something to try and change that?!)
Hopefully you can glean soemthing from the resource above to lead you to someone who can help you more but again, I thank you for bringing this article to us.
Thanks for your response! I live in Saskatchewan, Canada. The first few months after I was diagnosed with MBC, I saw two different physical therapists (one at a health clinic, and one in a private clinic) who had been trained in manual lymphatic drainage. Both demonstrated the technique for (and on) me on several occasions. I did not find the approach helpful. Although pleasant enough, it seemed to me too light a touch for my rather huge arm. However, I think both women said that they had been trained in a short-term course in another province so perhaps they needed better training . I will check out the link you provided.
I strongly agree with you that the focus needs to be on limiting the removal of lymph glands unless absolutely necessary.
Cindy, they way they did it/described it is actually correct. It may be hard to imagine how it can work but that is the correct technique. Too much pressure can cause too much fluid to try to pass through the lymph nodes at once (and thus more swelling at that spot). The lymphatic system has no way to pump the lymph fluid through itself. It is solely transported via the pressure of our contracting and releasing muscles (when we move) against the lymph vessels that forces the fluid to move. So a few things that can help minimize the swelling: elevation of your limb will help the fluid drain to the trunk, lightly stroking your arm towards your heart, moving the arm gently, and avoiding doing something where your arm is working but not actually moving (for example, keeping your arm in a fixed bent position while you carry something over your arm for a while, like a coat). To exercise your arm, start with your fingers, then circling your wrist, then forearm/elbow, and then shoulder. This way you are starting at the "bottom" of your limb and working the muscles up the arm towards your heart.
The self massage needs to be done very regularly to be effective and even if it doesn't reduce the size, at least it can help to stop it from getting worse. You could also try looking to see if there are any pumps you can buy to do the massage for you - I know there is one available for the legs but I don't know about arms. I hope you can get some relief
Thanks so much for all the ideas. I do elevate my arm every night on a huge pile of pillows. It mostly stays that way, but quickly reswells every morning. However, the skin has stayed fairly soft over the past 3.5 years. I'm going to try the exercise you mentioned. My husband generally tries to ensure I'm not straining my right arm but it would be good if I could use it more, as I am very much right-dominant.
Note that it is really recommended and important to wear a bandage or compression sleeve to exercise a swollen limb. I’m no expert so my advice of how to move the limb was just a general guidance, in case you happened to be moving it opposite to what is helpful. I actually would go back to the therapist and try commiting to several sessions first.
I’m also going to post again in the main thread of your post, to highlight a specific page from that website I shared earlier that explains the treatment protocol well and an informative 30 min video included
I am restarting lymphatic massage Tuesday. I was diagnosed a year ago, went to massage for months and got compression sleeves. Developed carpal tunnel in left hand. Had carpal tunnel, cubitunnel and another nerve surgery in my forearm I have been unable to wear sleeves. Left hand stiff, painful , tingly and difficult to use. Hopefully, the lymphatic massage will help along with the pt I have been going to! Lymphatic massage was a game changer the first time, but Medicare only allowed for a certain # of visits..I also have chest tightness from radiation and my mastectomies. The lymphatic massage helps that too.
Thank you Sister/Warrior/Advocate 😇 Great info. 15 years ago I had 12 lymph nodes removed. I should have used a compression sleeve then to keep the swelling down😏. Now I actually use an ace bandage when I work out. I found information from a couple of trainers who specializes in women being able to work out, and do the very things my Dr. said I would never be able to do again😕. Well I found a couple of trainers online who gave information on how to overcome this prognosis. I learned, and incorporated this right after Covid hit. It took some months using an ace bandage wrap, but I can now do push ups, pull ups😇. During the time when lot's of people were dying from Covid 🤨I pulled 65 -75 lbs of groceries, along with 2 heavy shopping bags on my shoulders 6 blocks with no swelling. I will get a prescription for a compression sleeve that is fully customized for me, unlike the ones you can purchase online. At that devastating time during Covid-19 I remember I would shop only every 3 weeks, and get groceries for me, and the 3 elders in my family. I am soooo grateful GOD helped me to care for myself, and the elderly family members who needed help at that time Amen!
I was asked to respond about chemotherapy. I have had just about every IV chemo therapy in 3 different years, 1994, 2010, and currently. This has been the easiest year so far . Early strong drugs gave me every symptom associated with them. Later treatments were not as bad. Current treatment is Halaven, the choice when all else has failed. My advice about chemo, get a wig before any hair loss begins. Your chemo team should have a case manager or patient advocate who can help. Prepare to be feeling bad 1 -2 days after treatments. Have stool softeners and anti-diarreals on hand - use asap when problems occur. Rest! Use anti nausea meds liberally. Ginger capsules are good natural remedy. Cold foods are better. Just keep a positive attitude above all else. Continue normal life as much as possible. Use God as your strength. Stay strong.
You always share such valuable information. Thank you for that. I'm so sorry you are having issues with it now. I'm sure it is painful. I'm sorry that the sleeves are not working for you this time. I don't know if this would help, but I have heard that there is a type of massage that works on the lymphatic system. Maybe someone who does therapeutic massage would know about this. Anyway, it might be worth to do some research on this. I know you are always reading articles and sending us the most up to date information. Will say some prayers for you and send you some hugs.
I’m sharing here for anyone with lymphedema. This is a great resource explaining treatment protocol for the condition.
At the bottom of that page there is also an excellent video discussing results of data assessment about treatment outcomes, and that highlight the very best protocol advice. Extremely informative
Thanks for this information. I had a Lumpectomey and 8 lymphnodes removed in June. And I woke up one morning and my hand on the right arm was so swollen I couldn't bend my fingers then I noticed my whole arm wS swollen. Scared me to death. I on the last week of 20 treatments of radiation im to be fevered to a therapist for this lympphedma i pray it can help. Thanks for the info. God bless
If the radiation was directed towards your arm, I hope it helped. My oncologist referred me to the radiologist for my swollen arm. The idea was that the radiation was to reduce the cancer mass around the lymph nodes which was presumably interfering with the lymph movement. The radiologist said that he could do nothing for fear of harming healthy tissues. Please let me know what works for you.
No one has really tried me anything the lump was close to my armpit I guess that's why that area is really dark and raw looking in one spot. The doctor prescribed silver sulfadiazine to use for healing. I will see what happens. Thank you and God bless and have a wonderful Thanksgiving.
Thank you Cindy for sharing this information- all the information that we can have at our disposal is priceless!!! I hope you are feeling better and relief soon. Michelle
Thanks, Michelle. I don't feel pain that often. It is more that my arm is unsightly and a nuisance since some of my clothing no longer fits. However, I appreciate your kind words! Regards, Cindy
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