Worried about ALND if I already have lymphedema?

Etherize, I answered you on the other thread: I'll copy it here--and I think your arm will be just fine, after you get over the cording--I'm copying the really long reply I wrote to you. Please discuss these concerns with your doctors. 

kira wrote:

Etherize--the pain you're describing sounds a lot like "cording"--thrombosed lymphatic vessels--very very common and a risk factor for lymphedema. It can be treated by a lymphedema therapist, and it would be a good idea to connect with one:

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

Here's a link to Axillary Web Syndrome--another name for cording

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

Have a peak, and see if sounds familiar.

I would never want to add confusion to your care or suggest medical advise, but fyi:

Earlier this year, the breast cancer world was rocked by  the Guiliano study that showed that for women with only 1 or 2 positive nodes, there was no survival benefit with ALND vs. SNB and systemic therapy as indicated by oncologist--http://jama.ama-assn.org/content/305/6/569

Axillary Dissection vs No Axillary Dissection in Women With Invasive Breast Cancer and Sentinel Node Metastasis
A Randomized Clinical Trial

Armando E. Giuliano, MD;
Kelly K. Hunt, MD;
Karla V. Ballman, PhD;
Peter D. Beitsch, MD;
Pat W. Whitworth, MD;
Peter W. Blumencranz, MD;
A. Marilyn Leitch, MD;
Sukamal Saha, MD;
Linda M. McCall, MS;
Monica Morrow, MD

[+] Author Affiliations

Author Affiliations: John Wayne Cancer Institute at Saint John's Health Center, Santa Monica, California (Dr Giuliano); M. D. Anderson Cancer Center, Houston, Texas (Dr Hunt); Mayo Clinic Rochester, Rochester, Minnesota (Dr Ballman); Dallas Surgical Group, Dallas, Texas (Dr Beitsch); Nashville Breast Center, Nashville, Tennessee (Dr Whitworth); Morton Plant Hospital, Clearwater, Florida (Dr Blumencranz); University of Texas Southwestern Medical Center, Dallas (Dr Leitch); McLaren Regional Medical Center, Michigan State University, Flint (Dr Saha); American College of Surgeons Oncology Group, Durham, North Carolina (Ms McCall); and Memorial Sloan-Kettering Cancer Center, New York, New York (Dr Morrow).

Abstract

Context Sentinel lymph node dissection (SLND) accurately identifies nodal metastasis of early breast cancer, but it is not clear whether further nodal dissection affects survival.

Objective To determine the effects of complete axillary lymph node dissection (ALND) on survival of patients with sentinel lymph node (SLN) metastasis of breast cancer.

Design, Setting, and Patients The American College of Surgeons Oncology Group Z0011 trial, a phase 3 noninferiority trial conducted at 115 sites and enrolling patients from May 1999 to December 2004. Patients were women with clinical T1-T2 invasive breast cancer, no palpable adenopathy, and 1 to 2 SLNs containing metastases identified by frozen section, touch preparation, or hematoxylin-eosin staining on permanent section. Targeted enrollment was 1900 women with final analysis after 500 deaths, but the trial closed early because mortality rate was lower than expected.

Interventions All patients underwent lumpectomy and tangential whole-breast irradiation. Those with SLN metastases identified by SLND were randomized to undergo ALND or no further axillary treatment. Those randomized to ALND underwent dissection of 10 or more nodes. Systemic therapy was at the discretion of the treating physician.

Main Outcome Measures Overall survival was the primary end point, with a noninferiority margin of a 1-sided hazard ratio of less than 1.3 indicating that SLND alone is noninferior to ALND. Disease-free survival was a secondary end point.

Results Clinical and tumor characteristics were similar between 445 patients randomized to ALND and 446 randomized to SLND alone. However, the median number of nodes removed was 17 with ALND and 2 with SLND alone. At a median follow-up of 6.3 years (last follow-up, March 4, 2010), 5-year overall survival was 91.8% (95% confidence interval [CI], 89.1%-94.5%) with ALND and 92.5% (95% CI, 90.0%-95.1%) with SLND alone; 5-year disease-free survival was 82.2% (95% CI, 78.3%-86.3%) with ALND and 83.9% (95% CI, 80.2%-87.9%) with SLND alone. The hazard ratio for treatment-related overall survival was 0.79 (90% CI, 0.56-1.11) without adjustment and 0.87 (90% CI, 0.62-1.23) after adjusting for age and adjuvant therapy.

Conclusion Among patients with limited SLN metastatic breast cancer treated with breast conservation and systemic therapy, the use of SLND alone compared with ALND did not result in inferior survival.

One more thing: post surgically, it's been advised that you don't raise your arm above shoulder height for about 10-14 days--none of that climbing the wall stuff

http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm

Peri-operative and Post-operative Management:

--Handle the tissues gently during surgery: Janice Cormier, M.D., NLN lecture 2010, Physicians' Intensive

Lecture slide: Critical Surgical Technique 1) Gentle handling of tissues, 2) Orientation of incisions (extremities) and 3) Hemostatic control at time of surgery

--Treat seromas promptly: from San Antonio Breast Conference 2010, "Seroma usually leads to prolonged wound healing, tissue inflammation and subsequent fibrosis and necrosis. It has been hypothesized that seroma formation is one of the main risk factors for post-breast cancer lymphedema." Seroma Formation Is Associated with Lymphedema-Related Symptoms.
http://www.abstracts2view.com/sabcs10/view.php?nu=SABCS10L_478

---Consider limiting stretch on the axillary area for 10-14 days post-operatively, as lymphatics have limited time to regenerate: NLN Conference Lecture, 2010, Jodi Winicour PT

From Foldi Textbook of Lymphology: Lymphatic regeneration occurs as the stumps of the afferent or efferent collectors of a removed node connect as the result of proliferation of the endothelium at the terminal portion of the damaged vessel. Regeneration of superficial vessels in dogs takes 4 days, and deep vessels in 8 days.

Have your patients limit their arm movement to shoulder height for the first 10-14 days post-op-to allow the efferent and afferent vessels to connect during the limited time of lymphatic regeneration.

Systematic review of early vs. delayed exercise has shown delayed exercise decreases seroma formation: http://www.ncbi.nlm.nih.gov/pubmed/15830140

A study in 2008, published in Physiotherapy, showed higher risk of development of lymphedema in women who had axillary node dissection and performed early vs. delayed exercise: http://www.lymphoedemaleeds.co.uk/Pages/Research.aspx

Sorry for the length of this. Please let us know how you're doing.

Kira

Etherize, I was the queen of cording--and I did tons of exercising, thinking it would get my shoulder moving, and I had a seroma in my axilla--which I think set me up for my LE, which came on early.

I heard Jodi Winicour, a great PT, who teaches at the Klose School, and is the national "cording expert" speak at the NLN conference, and she's been generous about emailing me as well. Jodi feels strongly that after axillary surgery, there needs to be minimal traction through the axilla for the first 10 days to let the delicate lymphatics form new connections.

When I had cording, I felt it down my arm, through the antecubital fossa, into the forearm and through my thumb. It did run on the inside of my arm, not exactly near the deltoid.

It sounds like your nurse gave good advice--wait a week--and yet I see cording all the time--I work in rad onc--right now I have a patient with a tight cord in her chest, and I trying to show her how to massage it this morning. 

My family are all Kaiser members in Northern California, and the good thing is that you have 5 oncologists to consult. 

I know where I work, extracapsular spread in the node is considered aggressive.

I see so many women with ALND who are doing just great. 

I can't imagine you raised your arm too high on pillows--that would be a huge pillow. 

Please let us know how you're feeling. I do wonder about that deltoid pain--I had a broken hand last year, and after the cast--no internal rotation of the shoulder, and lots of deltoid pain. Shoulders do take a beating with breast cancer.

Kira

Etherize, do you have access to a certified LE specialist who can do a good eval with measurements before you have the surgery? You can get lymph flowing a bit before traumatizing the area again...and then have regular follow-ups to keep any post-op swelling under control.

Sorry if I'm repeating anything you've discussed already. I didn't develp LE but the potential for it with an ALND freaked me out, so I was proactive with a LE therapist and physical therapy.