ASCO Breast--lymphedema news--not so good

Lani · 10-10-2010, 12:21 PM

lymphedema is not sexy and has not gotten its fair share of research funds or interest it seems

Results rather depressing despite change to less invasive axillary surgery

And don't get excited--researcher is quoted saying they STILL see some cases after 5 years, so I guess the concern continues.

ASCO Breast: Lymphedema Risk Persists for Years

Breast cancer survivors have an ongoing risk of lymphedema for as long as five years after treatment ends, a study involving more than 200 patients showed.

Depending on the criteria used to define lymphedema, the five-year incidence ranged from 43% to 94%. Regardless of the definition employed, lymphedema incidence continued to increase during months 12 to 36 and months 36 to 60, as reported here at the American Society of Clinical Oncology's Breast Cancer Symposium.

The findings defy conventional wisdom that lymphedema persists only for the first 12 months after treatment, said Jane M. Armer, PhD, of the University of Missouri School of Nursing in Columbia. They also run counter to the belief that modern treatment techniques have substantially reduced the risk of lymphedema.

"We find that there still is an occurrence of lymphedema, after the latest treatment and based on the current protocols," Armer told MedPage Today. "More cases of lymphedema are seen between six and nine months after treatment, but even after 60 months we still see new cases, so there are late-occurring cases."

"Regardless of the criteria we used to define lymphedema, the incidence continued to increase during follow-up to 60 months."

As many as 40% of women with newly diagnosed breast cancer develop lymphedema after treatment. Initially, the swelling causes discomfort and possibly some disability. Subsequently, the condition can cause cellulitis and lymphangitis, predisposing patients to potentially life-threatening systemic infection.

Reports in the medical literature have widely varying estimates of lymphedema incidence, from 6% to more than 60%. Medical textbooks tend to have more moderate estimates in the range of 15% to 20%. The wide variation reflects the difficulty of attaining accurate measurement, diagnosis, and follow-up of patients, according to the poster presentation by Armer and colleagues.

In an effort to resolve some of the discrepancies, investigators prospectively followed 211 patients with newly diagnosed breast cancer for 60 months. They used three methods to assess lymphedema: perometry, circumference by tape measure, and self-reported signs and symptoms.

On the basis of the three assessment techniques, Armer and colleagues used four criteria to identify lymphedema:

A 2-cm change in circumference at any measured site
A 200-mL perometry limb volume change (LVC) in an affected arm
10% perometry LVC of the affected arm
Self-reported limb swelling or heaviness
Patients were assessed before and shortly after treatment and then at follow-up visits every three months for the first year and then every six months, until reaching a total follow-up of 60 months.

By the four different criteria used to define lymphedema, the 12-month incidence ranged from 22% to 66%. At 60 months, the range of lymphedema incidence was higher when categorized by all four definitions:

94% when defined by a 2-cm change in circumference
83% by 200-mL change in LVC
55% by 10% perometry LVC of the affected arm
43% by signs and symptoms
Ongoing analysis of the data includes a focus on identifying factors associated with late-occurring lymphedema, said Armer.

Armer and her co-investigators reported that they had no relevant disclosures.

Primary source: ASCO Breast Cancer Symposium
Source reference:
Armer J, et al "Lymphedema occurrence rates 1 to 5 years after breast cancer diagnosis" ASCO Breast 2010; Abstract 180.

Sheila · 10-10-2010, 01:11 PM

Lani
THis is interesting as I have developed Lymphedema in my left arm after almost 9 years since my node dissection...it seems the neck and axillary nodes have blocked what drainage i had left...just got fitted for sleeves Friday...it came on out of no where....Pink Girl would really like the way my Left Arm looks like Popeye!

Joanna J · 10-10-2010, 01:11 PM

But have you heard that most massage therapists can do what is called a lymph drain,my sister is a massage therapist,and does this on several clients that have had lymph nodes removed,In fact my onc suggested it for me,can't hurt to try. Joanna J

Jackie07 · 10-10-2010, 03:44 PM

The compression sleeve and glove prescribed for me after contracting cellulitis have been working well. I've been waiting for the new set - been returned to the maker twice already for adjustment.

Joanna J · 10-10-2010, 06:17 PM

Jackie07,I am glad to hear this works well for you,but the lymph drain is a more natural approach it helps the lymph fluid to drain more naturally,this is what I have been told,the compr sleeve prescribed for my best friend,just seems to push the fluid elsewhere,my sister (a massage therapist) tells me that it also works to,retrain the lymph fluid (after the removal of lymph nodes)back to the correct working order,thats how I can best describe it,and again this is what I have been told. It works well for many.

chicagoetc · 10-10-2010, 06:31 PM

I'm in rehab now for this (Sheila's lymphedema after 9 years would probably have something to do with the neck nodes?). This diagnosis was almost 3 years post surgery. To my surprise it was not only in my arm but also down the side of my back. That the rehab therapist found this is great. I would never have known otherwise. I'm not surprised at the high incidence given that lymph node removal/dissection interrupts such an important part of our body. Also apparently radiation has a big effect...scar tissue can block the lymph fluid with a similar effect as lymph node removal/dissection. That this can be addressed is good. [But I won't be picking up heavy objects for a long, long time...maybe never?]

Melanie

BonnieR · 10-10-2010, 06:51 PM

great. This makes me more annoyed than ever about an IV that was placed in my affected arm despite a BIG note on my chart, signs in my room and the "do not use this arm" bracelet that I was wearing at the time. This was while I was unconscious during my recent episode of unnecessary lung surgery that turned out to be benign!

Jackie07 · 10-10-2010, 08:18 PM

Bonnie,

Glad it turned out to be benigh...

I had the same 'horror' experience after my bi-lateral mastectomy. At 'midnight', a young staff approached my bed and said she's going to take my blood pressure. I screamed from the top of my lung when she grabbed my right arm where I'd lost 11 lymph nodes from two surgeries in a four year span.

I've never been so 'rude' in my whole life and still feel bad to have chewed her out.... Several hours later, another staff came in and took the blood pressure from my lower calf. I asked her how come she knew what to do and the previous staff did not know the correct procedure. She replied that she's an experienced 'supervisor' and from the 'tape' accross my chest she could tell that I'd had bilateral mastectomy.

No telling what could have happened had my family not stayed close watch during my semi-comatose in the ICU after my brain surgery in 1990... A young volunteer did 'drop' me at the wrong station one time during my rehab.

Jackie07 · 10-10-2010, 10:12 PM

Joanna,

When I was having lymphedema caused by cellulitis, the therapist wrapped up my whole arm with thin cotton pad and then ACE bandage. I had to wrap it every morning and unwrap it at night.

The therapist did demonstrate to me how to massage my hand and arm. After the swell was down, I was fitted with custom-made compression sleeve and glove and never have experienced any more problems.

[Not so fast - seems to have gotten some mosquito bites around the right elbow. Better apply more Gold Bond...]

vlcarr · 10-12-2010, 08:38 AM

I continue to struggle with my lymphedema. Mine flared up after radiation. I'm getting weekly massages and have to wear the compression sleeve and a custom made glove all day, every day. They measured me again last week and my lower arm was bigger, upper arm a little smaller.

I also developed swelling in my side and chest wall. I also have to wear a swell spot that goes in my bra and I wear a tribute sleeve every night while sleeping.

I flew for the first time this weekend and it did flare up but looked better this morning.

My therapist suggested I get Under Armour compression tee shirts and I wear those all day too. I feel like a mummy but they help the swelling on the side and in my chest. I'm very lucky I get to work from home because it would be hard to wear the Under Armour's to work (they are impossible to hide).

I've found this to be the most frustrating issue I've had but I'm hanging in there. Trying to do what I can to keep it under control.

chicagoetc · 10-12-2010, 06:12 PM

VLCarr,

Sounds about right. The Under Armour sleeveless tee shirt (mine is sleeveless with 18% elastic or something) works well for me at night (though it doesn't resolve everything). It helps a lot to have someone working with you (a rehab person) who knows what they are doing. This is FAR better than the alternative (that it would get worse and worse). It took me a while but I understand now how serious it could potentially get. So if something shows, that's how it goes. I learned today that the effect is not just at the place where there is swelling, but over the entire quadrant of the body that is affected...apparently the lymph system is divided this way. Not only is the arm affected but also the chest and back that are on the same side.

Be well,
Melanie