Terrified of LE w/ upcoming AND

For risk reduction read this: linky

Many women don't get it with just level one nodes removed. I did on my 10 node side but I have a family history. My mom and her uncle have/had lymphedema in their legs. Thing is I have a mild case. between a 0 & 1. The trick is to be aware of the symptoms. If you catch it early chances are it will be very manageable.  Right now I have no swelling, had exchange surgery last Friday and it's humid out (but I'm in air conditioning right now). I was out  today and yesterday. 

While I rather not have to deal with LE its much better than cancer. BTW I too have fallen into that small category too often sometimes it  works for you. I had no nausua during chemo. (Granted I got the more rare SE. Go figure).

Madismommy, you do seem to fit the study that showed that removing more nodes, if only 1-3 are positive in a T2 (5 cm or less) tummor does not improve survival. Before you proceed, please discuss the study with your doctors. Old habits die hard, and it was just one study, but a very comprehensive one:

Here's the JAMA press release:

Limited Lymph Node Removal for Certain Breast Cancer Patients Does Not Appear to Result in Poorer Survival

CHICAGO-Among patients with early-stage breast cancer that had spread to a nearby lymph node and who received treatment that included lumpectomy and radiation therapy, women who just had the sentinel lymph node removed (the first lymph node to which cancer is likely to spread from the primary tumor) did not have worse survival than women who had more extensive axillary lymph node dissection (surgery to remove lymph nodes found in the armpit), according to a study in the February 9 issue of JAMA.

Axillary lymph node dissection (ALND) has been part of breast cancer surgery since the use of radical mastectomy and reliably identifies nodal metastases. "Sentinel lymph node dissection (SLND) accurately identifies nodal metastasis of early breast cancer, but it is not clear whether further nodal dissection [removal] affects survival," the authors write. "ALND, as a means for achieving local disease control, carries an indisputable and often unacceptable risk of complications such as seroma [a mass or swelling caused by the localized accumulation of serum within a tissue or organ], infection, and lymphedema [condition in which excess fluid called lymph collects in tissues and causes swelling]."

Armando E. Giuliano, M.D., of the John Wayne Cancer Institute at Saint John's Health Center, Santa Monica, Calif., and colleagues conducted a study to determine the effects of ALND on overall survival in patients with SLN metastases treated with lumpectomy (surgical removal of a tumor without removing much of the surrounding tissue or lymph nodes) and radiation therapy. The trial was conducted at 115 sites and enrolled patients from May 1999 to December 2004. Patients were women with T1-T2 (stage of tumor) invasive breast cancer, no palpable adenopathy (enlarged lymph nodes), and 1 to 2 SLNs containing metastases.

Patients 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. Of 891 patients, 445 were randomly assigned to the ALND group and 446 to the SLND-alone group.

As expected, there was a difference between ALND and SLND-alone treatment groups in total number of removed lymph nodes and total number of tumor-involved nodes; the median (midpoint) total number of nodes removed was 17 in the ALND group and 2 in the SLND-alone group. At a median follow-up of 6.3 years, there were 94 deaths (SLND-alone group, 42; ALND group, 52). The use of SLND alone compared with ALND did not appear to result in statistically inferior survival, with the 5-year over all survival rates being 92.5 percent in the SLND-alone group and 91.8 percent in the ALND group. Disease-free survival did not differ significantly between treatment groups, with 5-year disease-free survival being 83.9 percent for the SLND-alone group and 82.2 percent for the ALND group.

The rate of wound infections, axillary seromas, and paresthesias (prickly, tingling sensations) among patients in the trial was higher for the ALND group than for the SLND-alone group (70 percent vs. 25 percent).

The authors note that these results suggest that breast cancer patients, such as those in this study, do not benefit from the addition of ALND in terms of local control, disease-free survival, or overall survival, and that ALND may no longer be justified for certain patients. "Implementation of this practice change would improve clinical outcomes in thousands of women each year by reducing the complications associated with ALND and improving quality of life with no diminution in survival."
(JAMA 2011;305[6]:569-575. Available pre-embargo to the media at www.jamamedia.org)

Here was the abstract from ASCO:

ACOSOG Z0011: A randomized trial of axillary node dissection in women with clinical T1-2 N0 M0 breast cancer who have a positive sentinel node.

Local-Regional Therapy Breast Cancer - Local-Regional and Adjuvant Therapy 2010 ASCO Annual Meeting Oral Abstract Session, Breast Cancer - Local-Regional and Adjuvant Therapy CRA506 J Clin Oncol 28:18s, 2010 (suppl; abstr CRA506) A. E. Giuliano, L. M. McCall, P. D. Beitsch, P. W. Whitworth, M. Morrow, P. W. Blumencranz, A. M. Leitch, S. Saha, K. Hunt, K. V. Ballman; John Wayne Cancer Institute, Santa Monica, CA; American College of Surgeons Oncology Group, Durham, NC; Dallas Surgical Group, Dallas, TX; Nashville Breast Center, Nashville, TN; Memorial Sloan-Kettering Cancer Center, New York, NY; Morton Plant Hospital, Clearwater, FL; University of Texas Southwestern Medical Center, Dallas, TX; McLaren Regional Medical Center, Michigan State University, Flint, MI; M. D. Anderson Cancer Center, Houston, TX; Mayo Clinic Rochester, Rochester, MN

Abstract:

Background: Sentinel node biopsy (SNB) eliminates the need for axillary dissection (ALND) in patients whose sentinel node (SN) is tumor-free. However, completion ALND remains the gold standard for patients with a tumor-involved sentinel node. ALND achieves regional control, but its effect on survival remains controversial. The main objective of ACOSOG Z0011 was to compare outcomes of patients with hematoxylin and eosin (H&E) detected metastasis in SN managed with or without ALND and no axillary irradiation. Methods: Clinically node-negative patients who underwent SN biopsy and had 1 or 2 SN with metastases detected by H&E were randomized to ALND or no further axillary specific treatment. All patients were treated with lumpectomy and opposing tangential field irradiation. Adjuvant systemic therapy was at the discretion of their physicians. Overall survival (OS), disease-free survival (DFS), and locoregional control were evaluated. Results: 446 patients were randomized to SNB alone and 445 to SNB plus ALND. Patients treated with SNB alone were similar to those treated with SNB + ALND with respect to age, tumor size, Bloom-Richardson score, estrogen receptor status, adjuvant systemic therapy, tumor type, and T stage. Patients randomized to SNB alone had a median of two lymph nodes removed whereas patients randomized to ALND had a median of 17 lymph nodes removed. 17.6% of ALND patients had 3 or more involved nodes compared to 5.0% of SNB patients (p < 0.001). Median follow-up is 6.2 years. 5-year in breast recurrence after ALND was 3.7% compared to 2.1% for SNB (p = 0.16) while 5-year nodal recurrence was 0.6% compared to 1.3% (p = 0.44) respectively. The five-year OS for patients undergoing SNB + ALND is 91.9% compared to 92.5% for SNB alone (p = 0.24), and DFS is 82.2% compared to 83.8% respectively (p = 0.13). Conclusions: Despite the widely held belief that ALND improves survival, no significant difference was recognized by this study of SN node-positive women. Although the study closed early because of low accrual/event rate, it is the largest phase III study of ALND for node-positive women, and it demonstrates no trend toward clinical benefit of ALND for patients with limited nodal disease.

Here's the abstract from the published article in JAMA:

http://jama.ama-assn.org/content/305/6/569Axillary 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.

I know this reads like a lot of medical jargon, but before you proceed, talk to your doctors about this study.

And, as others have written above, plenty of women with ALND do NOT get LE, but it is worrisome.

Kira (who got it from a SNB, go figure)

Madismommy - the bottom line is that it's your body and your choice.  You don't "have" to do anything that you don't want to do!  Do a little research, get a second opinion, and then make your own informed decision. 

Michelle

I decided against the ALND. My MO wanted me to have it. My BS told me it would give me a 30% lifetime risk for lymphedema. The RO believes radiation will give me a 5% risk. My BS & RO tell me it's a "quality of life issue". My MO wanted to know if there are other positive nodes. BS & RO feel that if there are they are micromets & the Guiliano study mentioned above(& others) show that radiation is just as effective as ALND.

Part of me tells myself that aside from BC, I am the healthiest 50something I know(52) & that I can handle any & all of this just as well or better than most. But when my BS & RO, both healthy active/athletic types, tell me to look at quality of life.....I even considered going to LA for appt with Dr Giuliano for a consult. If not for the LE risk, I most certainly would prefer the ALND to RADs. Wishing you the best on what ever path is right for you.

Its no comfort to you to say this: I think it is a bit of a crapshoot.

 Follow the precautions to avoid any undue injuries, meet with an LE therapist to learn some exercises to keep some good lymph flow going and learn MLD, and kiss the rest up to God.

I did everything right, only had SN removed ( 6 nodes) under 1 arm, and still got it in both arms in the end. I know others who have had loads o' nodes removed, radiation, and they are fine. 

I think it is about how much insult your personal lymph system can handle, and I think mine was delicate, never to cause me a problem unless I had a significant hit to the works.

Be positive, and realize that more women are living without LE than not----and even if it does happen, it is something the boards can help you navigate. It has been a lifesaver for me, and the ladies are more informed than most MDs on how to cope day to day with LE. 

Kira I'm with you. LE isn't as bad as breast cancer. I have a mild case. They took 10 nodes on my LE side. Sucks that I have it but I'm glad my nodes were clear. I'm also willing to bet if they hadn't taken the 10 nodes Rads would have been recommended. I was in a gray area as it is.

Personally I would rather deal with this minor LE and avoid Rads.The Rads probably would have given me LE anyway given I think I might be a stage 0 in my 4 node "good" arm too. (Have felt discomfort in that arm at times. I wore my sleeve to resolve it).

After reading this site I was so scared of LE going into surgery. While there are women who have terrible issues with it I do think many of us manage it just fine. Learn about prevention. I'm finding LE isn't as high maintenance as I thought.