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Lymphedema threat: are we ever out of the woods?

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  • sunshinegal
    sunshinegal Member Posts: 67
    edited April 2021
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    I had (unrelated to cancer) lumbar surgery yesterday and the nurse who started my IV had commentary when I asked for the IV to be done on my non-cancer side. I have not developed lymphedema in the 10 years since ca dx #1 but have been conscientious about BPs, immunizations, & IV's since then.

    She said she works with a surgeon who treats a lot of cancer patients, and the surgeon apparently gets frustrated when people like me ask for the non-ca side to be used. The surgeon is apparently aware of research that indicates that if you don't get LE in the first five years, you are very unlikely to ever get it (?!).

    This feels like a game of "telephone" since I'm rephrasing what the nurse said, and she was summarizing what the surgeon said, with no specific research paper cited.

    As far as I've ever been told or read (and has been discussed in this thread), it's a lifetime risk that can be triggered years later.

    Is anyone aware of any research that would support that surgeon's view? Asking out of curiosity, not that I am likely to change any precautions I take.

  • summerangel
    summerangel Member Posts: 182
    edited April 2021
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    I just took a look and it's shocking how few studies follow people for more than 5 years. Many only follow for 2 years post-treatment.

    https://pubmed.ncbi.nlm.nih.gov/30845971/ followed patients for 10 years, and in that time 87.1% of those who developed lymphedema developed it in the first two years. It doesn't provide a number within the first 5 years, but if you look at the graph provided there were definitely some who developed it after the 5 year mark.

    https://pubmed.ncbi.nlm.nih.gov/26228821/ has this statement: "The average time from cancer treatment to the development of lymphedema in our patients was 2.2 and 4.75 years in the BR (breast cancer) and GYN groups, respectively, ranging from within days after the procedure to as long as 31 years."

    https://pubmed.ncbi.nlm.nih.gov/11745212/ is an older study that followed patients for 20 years. All patients had axillary dissection (a bigger risk factor), so the rates were higher overall. From that study: "Seventy-seven percent (98 of 128) noted onset within 3 years after the operation; the remaining percentage developed arm swelling at a rate of almost 1% per year."

    Maybe someone else can find more information for you.

  • wallycat
    wallycat Member Posts: 1,277
    edited April 2021
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    I try to baby my cancer arm as much as I can. I have had doctors get frustrated with me, but I try and stick to my guns. I had my second covid shot in my thigh (saturday---oy, still recuperating!) due to the reaction in my left arm (didn't want to double jab it). Now I am wondering how worried I should be when my husband and I go target shooting. I use a revolver to deer hunt, so that is what I target shoot---a 44 magnum. I'm right handed. Ugh....now I'll be wondering.......

  • minustwo
    minustwo Member Posts: 13,116
    edited April 2021
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    Ya know, I don't care about percentages of those who don't develop LE after 3 years. I care about the fact I might be in the other 22% that MIGHT develop it later. I'm with Wallycat. I'll stick to my precautions. I have personally known two people who developed LE down the road 10+ years.

    Wallycat -. I'd probably wear a compression sleeve to shoot 44s. But it's a pain to remember.

  • ruthbru
    ruthbru Member Posts: 47,038
    edited April 2021
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    The risk does go down the farther out you are; but since it never goes down to zero, I don't know why one wouldn't want to continue to take sensible precautions!

  • ruthbru
    ruthbru Member Posts: 47,038
    edited April 2021
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    As for that surgeon, he would be getting a lecture from me. 'Unlikely' is not a guarantee, and if I were one of the 'unlikely' ones to develop problems after listening to him, I'd be the one who would have to live with the consequences, not the surgeon.

  • minustwo
    minustwo Member Posts: 13,116
    edited April 2021
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    Right on Ruth. We're the ones who take the risks.

  • gb2115
    gb2115 Member Posts: 553
    edited April 2021
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    I also know someone who developed full on LE way later than 5 years after treatment. I would be upset with a surgeon who gets frustrated over patient's reasonable concerns, especially because they can't see the future to know if it's actually ok, and they don't have to live with the consequences.

  • wallycat
    wallycat Member Posts: 1,277
    edited May 2021
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    I just read this today. Certainly not consistent.


    Are Post-Mastectomy Lymphedema Precautions Needed for All?

    — Standard risk reduction efforts may not decrease incidence, researchers say

    by Mike Bassett, Staff Writer, MedPage Today April 21, 2021

    Standard limb precautions -- such as avoiding blood pressure measurements and venipuncture in the ipsilateral arm -- may not decrease the incidence of lymphedema in patients who undergo breast cancer surgery with axillary lymph node dissection (ALND) or sentinel lymph node biopsy (SLNB), a researcher reported.

    Those broad precautions are being enforced at many institutions despite a lack of high-level evidence supporting these restrictions, stated Julie Ziemann, MS, APRN-CNP, AOCNP, of The Ohio State University James Cancer Hospital and Solove Research Institute in Columbus.

    However, Ziemann reported in an e-poster presentation at the Oncology Nursing Society virtual meeting that measuring blood pressure (BP), venipuncture, and vascular access in the ipsilateral arm is likely safe for patients without lymphedema and without any kind of arm injury such as cellulitis or broken skin.

    Most institutions will enforce limb restrictions, including measuring BP and venipuncture in the ipsilateral arm, for all patients who have undergone breast cancer surgery, regardless of the type or timing of surgery, they noted.

    However, there is a lack of scientific evidence regarding risk reduction practices. For example, the National Lymphedema Network in its position statement on risk reduction practices noted that there is little in the way of evidence-based literature regarding many of the practices listed in its statement, and that many are "based on the knowledge of pathophysiology and decades of clinical experience by experts in the field."

    In addition, Ziemann's team suggested that adhering to these broad restrictions "can result in delay of care, invasive procedures to establish access, increased risk of infection and VTE [venous thromboembolism], increased healthcare spending, and increased inconvenience to patients."

    The researchers asked how observing limb precautions versus not observing them affected the development of lymphedema. Based on six relevant research studies, as well as clinical practice guidelines from professional organizations, they concluded that "there is limited evidence to support lymphedema precautions for patients after mastectomy" with ALND or SLNB.

    They further noted that because of the lack of high-quality evidence, more research is needed to determine whether removing restrictions is safe for patients.

    "We do not recommend broad limb precautions for all patients after breast cancer removal surgery with ALND or SLNB," the authors wrote. "We recommend that all patients who have undergone breast cancer removal surgery or SLNB followed by radiation be evaluated individually to determine whether standard limb precautions should be followed."

    With these findings in mind, a task force was formed at their institution to update limb precaution guidelines. These updated guidelines recommend that, if possible, IV access should be pursued in the unaffected arm first. If access can't be established in the unaffected arm, the guidelines suggest that standard limb precautions should be followed in patients with:

    • Known lymphedema
    • Sustained chronic or unilateral swelling
    • A hemodialysis fistula
    • Recent tissue harvest or tissue graft
    • Recent acute injury, fracture, trauma, or burns
    • Flaccidity or decreased sensation in the ipsilateral arm
    • Known thrombus or superior vena cava syndrome on the same side of the chest as the affected arm

    The guidelines also recommend following standard limb precautions in patients who have undergone axillary dissection with axillary radiation, or have active infection, a diagnosis of current deep venous clot, or whose limb is being preserved for hemodialysis access.

    "In patients who don't meet these criteria we have determined it would be safe to establish access in the ipsilateral arm depending on patient preference," Ziemann and colleagues concluded. "Individual patient preferences and patient condition, as well as provider recommendations, should always dictate clinical practice. Continued research on lymphedema precautions and continued research in the field of lymphedema, including new treatment options, will continue to guide the way as we determine whether lymphedema precautions after breast cancer removal surgery are evidence-based."

    Broad limb precautions and restrictions are commonly employed at many institutions, said Carla S. Fisher, MD, associate professor of surgery at the Indiana University School of Medicine in Indianapolis. "And while that sometimes is not a problem when we can use the contralateral arm, it can cause some difficulties and be stressful to the patient and the providers."

    "As the authors noted by doing a comprehensive literature review, there really is no data to support this," Fisher, who was not involved in the study, told MedPage Today.

    "Obviously you are dealing with different categories of patients, such as those patients with axillary lymph node dissection," she added. "You might want to be more cautious with those patients rather than with sentinel lymph node biopsy patients, who really should not have many precautions. But, it is important to get the message out there that many of these patients don't necessarily need broad limb precautions."

    Last Updated April 22, 2021

  • navy1305
    navy1305 Member Posts: 6
    edited May 2021
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    Personally, I had a mastectomy with 2 lymph nodes removed at the end of 2016 and I developed lymphedema in my dominant hand starting last spring, so about 3.5 years after surgery. I did not have any chemo or radiation whatsoever, only surgery.

    Since it seems nobody definitively knows what triggers lymphedema after breast cancer surgery, I think it is impossible for anyone to state with 100% certainty that doing or not doing X, Y, and Z are sure-fire ways to prevent it. To be safe and because it just seems like common sense logic, I do not get poked with needles or have my BP taken on my cancer side because why potentially unknowingly increase a risk that can easily be avoided in routine situations? Sure, if I'm unconscious and the EMTs in the ambulance stick me in the arm I don't usually allow to be stuck, am I going to complain? No. But if I am awake and coherent, am I going to allow or purposely offer up my cancer side arm for a needle stick or BP? No.

  • ruthbru
    ruthbru Member Posts: 47,038
    edited May 2021
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    I don't know why any doctor be upset that we want to practice 'better safe than sorry' precautions. Like Navy said; if it were a medical emergency, what arm they used wouldn't matter, they'd be trying to save my life. But for everything else, what difference should it make to them if I get my flu shot in one arm or the other?

  • minustwo
    minustwo Member Posts: 13,116
    edited May 2021
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    Interesting that the article mentions ALND or SLN during mastectomy AND radiation.

  • TectonicShift
    TectonicShift Member Posts: 102
    edited October 2021
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  • ruthbru
    ruthbru Member Posts: 47,038
    edited July 2021
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    This is just an educated guess, but I'd say most LE that develops later on is the result of a traumatic injury (bad accident, fall, burn etc.) or a massive & sudden overuse of the arm (like sandbagging during a flood or something else that is at a much higher intensify and length of time than you are used to).

  • minustwo
    minustwo Member Posts: 13,116
    edited July 2021
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    Tectonic - I like Ruth's answer. If you're overusing w/o using sleeves or other protection - you are ALWAYS as risk. The people I knew who developed LE years later did NOT have a cancer recurrence or new tumors blocking the lymph flow. In fact they were totally blindsided since their docs said "you don't have to worry".

  • TectonicShift
    TectonicShift Member Posts: 102
    edited October 2021
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  • ruthbru
    ruthbru Member Posts: 47,038
    edited July 2021
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    If what usually works isn't helping, I'd check in with a PT. You might need to tweak your routine.

  • summerangel
    summerangel Member Posts: 182
    edited July 2021
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    When I was going to PT after my surgery my LANA-certified physical therapist said that most of the people she saw who developed LE many years later had gained weight. In fact, one of the last things she said to me after our last session was a reminder to try not to gain weight as she didn't want to have to see me again.

  • TectonicShift
    TectonicShift Member Posts: 102
    edited October 2021
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  • cardplayer
    cardplayer Member Posts: 2,051
    edited September 2021
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    I've noticed a slight swelling in my SMX breast. Maybe it’s my implant, worried it could be the start of lymphedema, overuse of right arm, etc. I see my PS next week. Couple of questions - I had only 3 nodes removed and no radiation. I assume I can still get lymphedema? I like wearing my mastectomy bras as they are more comfy. Should I be wearing a more supportive bra to reduce the risk of lymphedema? Thank in advance.

  • minustwo
    minustwo Member Posts: 13,116
    edited September 2021
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    Nsbrown - my first surgery I had only 2 sentinal nodes removed and no rads. Yes - I got slight LE in my arm on one side. Then after my recurrence & ALND surgery & rads, I got breast & truncal LE on that side. It's so sad that many docs (maybe most) don't recognize the problem. It would be wonderful if everyone could be measured before surgery to have a base line. Be sure you get your PS to refer you to a certified/trained LEPT. It's important to have an evaluation as early as possible. If your PS (like mine) says pooh,pooh - this site has great information as well as how to find trained therapists.

    http://www.stepup-speakout.org/

    Also it has references for places to get fitted for bras & garments. Personally my case is mild, but I still wear a Wear Ease Sydney bra 24/7 and sleeves & gauntlets when I fly.


  • BlueGirlRedState
    BlueGirlRedState Member Posts: 900
    edited September 2021
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    ozma - if you can, get measured before surgery and other treatment, so that you have a baseline. LE is determined by the differences in size between left and right if nodes only removed on one side. It is also "staged" based on how much difference. Get a referal for a LE therapist so that it is professionally done and better chance of insurance covering it. Lymphedema could strike years after treatment or soon after. So get to know your body. Not everyone experiences it, I hope you remain free of it. This site has good info and is an advocacy group as well. http://www.stepup-speakout.org/ Other threads on BCO on lymphedema

    https://community.breastcancer.org/forum/64/topics...,

    https://community.breastcancer.org/forum/64/topics...

    https://community.breastcancer.org/forum/64/topics/783789?page=236#idx_7057

  • cardplayer
    cardplayer Member Posts: 2,051
    edited September 2021
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    MinusTwo BlueGirlRedState - thank you for sharing this information. I'm sure my local bra boutique can help me with a more supportive bra. My mastectomy bras are https://americanbreastcare.com/product/leisure-bra/

    Will check with my PS next week and followup from there. There are no LE Therapists in my small town but I found several an hour away which is doable if necessary. Is a referral required? Thanks.

  • minustwo
    minustwo Member Posts: 13,116
    edited September 2021
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    Nsbrown - for referrals - i expect it depends on the therapist & your insurance. The first one I saw did not require a referral. The second one was through MD Anderson and did require a doc's referral. I think it would be worth the drive at least once to get measured and maybe a couple more to learn self massage. Be sure to pick one that is fully trained. (see the step up site)

    This is the WearEase bra I use. It is virtually undetectable under any kind of shirt or dress, very comfortable and dries quickly. WearEase is a US and woman owned company, They are very helpful over the phone & good about exchanges if the size doesn't work. Also they have regular sales - things like 30% off or free shipping. (disclaimer - no I don't have stock in the company but I wish did) https://www.wearease.com/products/sydney-bra?varia...


  • cardplayer
    cardplayer Member Posts: 2,051
    edited September 2021
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    Thank you MinusTwo for the information. I see my PS on Monday and will get a referral from him to see a LE PT. Will check with my local bra boutique about compression bras. I was surprised to find out that Medicare covers the cost for some bras and prosthetics) and the shop handlesthe paper work.

  • viewfinder
    viewfinder Member Posts: 199
    edited September 2021
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    I had Lymphedema instruction shortly after a lumpectomy and radiation (just over three years ago). I didn't have Lymphedema so, to be honest, I hardly listened. One thing I DO remember is that the specialist told me I could develop lymphedema any time in my life.

    My oncologist told me last week that the swelling in my ankles and feet was lymphedema and that I had a swollen tendon under my left arm.

    I'm listening now....

    btw, wallycat - my oncologist reminded me that I had swollen ankles and feet the year before but she had never mentioned Lymphedema. So I assume I had a mild case and didn't know it. I'm glad I took all the precautions recommended to me by my first oncologist and lyphedema specialist (I moved to another state two years ago).

  • minustwo
    minustwo Member Posts: 13,116
    edited December 2021
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    I'm forwarding this from the lymphnet site via Wear Ease. It's amazing.



  • viewfinder
    viewfinder Member Posts: 199
    edited December 2021
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    Great information. Thanks for posting!

  • minustwo
    minustwo Member Posts: 13,116
    edited December 2021
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    Bumping since I find this so valuable.

  • mender
    mender Member Posts: 3
    edited June 2022
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    Hi all,

    Does any one know if there is surgical treatment for breast lymphedema ( not arm)

    Thanks in advance