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Topic: Lymphedema threat: are we ever out of the woods?

Forum: Lymphedema —

Lymphedema is swelling that can develop in the arm, hand, breast, or torso as a side effect of breast cancer surgery and/or radiation therapy. Lymphedema can appear in some people during the months or even years after treatment ends.

Lymphedema usually develops slowly, and you may feel an unusual sensation — such as tingling or numbness — that comes and goes before any visible swelling occurs. Other symptoms include achiness, feelings of fullness or heaviness, puffiness or swelling, and decreased flexibility in the hand, arm, chest, breast, or underarm areas. Tell your doctor if you experience any of these symptoms. Early treatment of lymphedema is important.

Learn more about how to lower your risk of lymphedema and how to manage it if you've been diagnosed.

Intro medically reviewed by: Brian Wojciechowski, M.D.
Last review date: November 22, 2020

Posted on: Feb 2, 2021 09:57AM

claireinaz wrote:

Dear all,

It's been nearly 10 years since my lumpectomy. I had 11 nodes removed total. Since then I've been religious about using my left arm (lumpectomy done on right) for everything-blood draws, BP cuffs, vaccines (including Covid), etc.

I should add I never had any sign of lymphedema, ever. I'm in great physical shape (no circulatory probs) and at the low end of lean for my height. I remember that sometimes weight can put some of us at higher risk... (?)

Anyway-my question is-are we ever able to use our lumpectomy side again for the above procedures? Is it an off-limits thing for the rest of our lives? I wondered since I got the Covid vaccine from my car last week, and I was sitting in the passenger side, forcing me to twist in my seat. It was fine-but it made me think about my question and wondered if anyone knew the answer.

Claire in AZ

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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Posts 31 - 42 (42 total)

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Apr 28, 2021 09:46AM sunshinegal wrote:

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.

Dx 10/7/2010, DCIS, Right, 6cm+, Stage 0, Grade 2, 0/4 nodes, ER+/PR+ Dx 3/22/2021, IDC, Right, <1cm, Grade 3, ER+/PR+, HER2- (FISH)
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Apr 28, 2021 03:24PM SummerAngel wrote:

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.

Age at dx: 45. Oncotype, left-side tumor: 9. Right side had multifocal IDC and "extensive" LCIS. Isolated tumor cells in 1 right-side node. Dx 3/27/2015, IDC, Left, 2cm, Stage IIA, Grade 1, 0/3 nodes, ER+/PR+, HER2- (FISH) Dx 4/27/2015, IDC, Right, 1cm, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 6/1/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right Surgery 6/1/2015 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 8/27/2015 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant Surgery 12/3/2015 Reconstruction (left): Fat grafting, Nipple reconstruction; Reconstruction (right): Fat grafting, Nipple reconstruction
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Apr 28, 2021 10:07PM - edited Apr 28, 2021 10:08PM by wallycat

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.......

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Apr 28, 2021 10:23PM MinusTwo wrote:

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.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Apr 29, 2021 07:59AM ruthbru wrote:

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!

"Invisible threads are the strongest ties." Friedrich Nietzsche Dx 2/2007, Stage IIA, Grade 3, 0/11 nodes, ER+/PR-, HER2-
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Apr 29, 2021 08:04AM ruthbru wrote:

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.

"Invisible threads are the strongest ties." Friedrich Nietzsche Dx 2/2007, Stage IIA, Grade 3, 0/11 nodes, ER+/PR-, HER2-
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Apr 29, 2021 08:03PM MinusTwo wrote:

Right on Ruth. We're the ones who take the risks.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Apr 30, 2021 05:05AM gb2115 wrote:

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.

Dx IDC in October 2016, stage 2A, 1.2 cm ER/PR+ Her2-, Grade 2, 1/3 nodes. Mammaprint low risk luminal A, Lumpectomy + radiation + tamoxifen. Age 38 at diagnosis.
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May 4, 2021 12:14PM wallycat wrote:

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

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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May 4, 2021 05:26PM navy1305 wrote:

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.

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May 4, 2021 08:39PM ruthbru wrote:

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?

"Invisible threads are the strongest ties." Friedrich Nietzsche Dx 2/2007, Stage IIA, Grade 3, 0/11 nodes, ER+/PR-, HER2-
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May 4, 2021 08:42PM MinusTwo wrote:

Interesting that the article mentions ALND or SLN during mastectomy AND radiation.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014

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