Compression Sleeve

I had segmental mastecotomy and lymphnode dissection in Jaunauary. My surgeons's group discouraged
my wish for sompression sleeve priscription (prescription) based on the lack of evidence supporting this practice in preventing lymphedema.
My first "personal and not necessarily logical" reaction was that it is not them who might possibly end up with the rare occurence of lymphedema, and I certainly don't want to be the rare one to end up with it because of the lack of preventive measures on my part. Especially that I travel to overseas on occasions visiting families. These flights are usually 10-13 hour flights.
I searched the medline and other sourses to learn what studies say about this topic in regards to the risk of flying and such.
I guess there is no such studies out there. IF there is one, please let me know.
I understand that surgical methods are excellent these days
and I do trust that my surgeon was one of the best in the region, yes,many other surgeon friends recommended him to us.
I would like someone else's opinion. This nagging discomforts
is a daily reminder that I must take care to prevent lymphedema. I have no fear except for the fact that I am flying soon!

[CCF-RN,MSN-JS]

Dear Karen, The concern regarding long airline flights and precautions about are more after swelling has started to develope.  Suggestions for prevention are more general and fall into categories of maintaining good nutrition, regular exercise, avoid infections, avoid tight clothing, avoid heavy lifting with the affected arm, keeping the skin meticulously clean, getting your blood pressure checked on the unaffected arm (non surgical side), avoid blood draws on the surgical side if possible, and notify your doctor of any signs of infection.  For more comprehensive information about lymphedema prevention and treatment we have information on our Cleveland Clinic Website. Which is www.clevelandclinic.org once there, click on Health Information Center, then type in lymphedema.

Regarding research, I am not finding any study that speaks specifically to your concern with flying.  The following from a Medline search (searched under lymphedema and breast cancer and prevention) may be of help as a general review, with several references that could be pursued.  

Authors:  Petrek JA. Pressman PI. Smith RA.
Institution: Department of Surgery at Memorial Sloan-Kettering Cancer Center in New York City, NY, USA.

Title: Lymphedema: current issues in research and management.[comment]. [Review] [69 refs]


Source: Ca: a Cancer Journal for Clinicians. 50(5):292-307; quiz 308-11, 2000 Sep-Oct.

Abstract:
Lymphedema is a common and troublesome problem that can develop following breast cancer treatment. As with other quality-of-life and nonlethal conditions, it receives less research funding and attention than do many other areas of study. In 1998, an invited workshop sponsored by the American Cancer Society reviewed and evaluated the current state of knowledge about lymphedema. Recommendations and research initiatives proposed by the 60 international participants are presented in the conclusion section of the article, following a summary of current knowledge of the anatomy, physiology, detection, and current treatment of lymphedema. The etiology of lymphedema is multifaceted; all of the factors that contribute to the condition and the nature of their interaction have not yet been identified. To compound the problem, methods of assessing the degree of arm and hand swelling vary and are not agreed upon, and reliable methods of assessing the functional impact of lymphedema have not yet been developed. In the absence of a cure for lymphedema, precautions and prevention are emphasized. Current treatments include elevation, elastic garments, pneumatic compression pumps, and complete decongestive therapy; surgical and medical techniques remain controversial. Elements and details of these treatments are described. [References: 69]

[japdip]

My surgeon is a non-believer where lymphedema is concerned but my primary care physician was more than willing to order the preventative compression sleeve. If one won't prescribe, ask another. Just because one doesn't believe doesn't mean that it doesn't happen. Prevention is certainly preferable to treatment. I have done both !!! Good luck ... be persistant !!

[nurse12hr]

Karen,
I hope you are doing well physically and emotionally after your mastectomy.
I was also concerned about lymphedema after my mod. radical mastectomy and lymph node dissection (20 nodes removed).  My surgeon did a lot to reassure me about lymphedema. I know my experience is only anecdotal, so won't help you much, but for what it's worth, I had no lymphedema whatsoever.  Don't know how many nodes they removed, but I was told it is mainly a problem with the removal of more than 20 at a time.  And if you are elderly.

I was extremely young (35), extremely active (got on a horse on my 7th post op day) and went back to work on my 14th post op day.  I am a L&D RN.  

Get out there, be active, seek out the sleeve if you really want it, b/c you and only you know your body the best.

I will celebrate my 10th year post cancer this Christmas!

[nurse12hr]

One more comment:  I had a very good friend who had I believe 32 nodes removed? She did use a sleeve preventitively, developed lymphedema anyway, and is plagued by it to this day.  

She is also a long term survivor, even after a bone marrow transplant!  6 years so far.

[Karen MSN NNP]

Thank you all for the comment.
I have read so much about the general prevention but I just wanted to be sure that not having the compression sleeve is not going to get me later.
I am probably pretty safe because I only had 16 lymph nodes removed.

[rkmsim]

As far as the number of lymph nodes removed and the chance of getting lymphedema - I had 11 removed and I developed lymphedema 2 1/2 years after my breast cancer surgery.  I was active, going to the gym 3 days a week and then got lazy when my granddaughter was born.  It was during the lack of activity that I developed the lymphedema.  It took about a year to get it under control and I make sure now that I exercise that arm regularly.  I also ALWAYS wear a compression sleeve and glove when flying.

[Karen MSN NNP]

What kind of glove do you wear?
See, this is why I feel like I should get the sleeve. Because, there are rare ocurrences, but enough of them to make it worththe precautions.
What kind of exercises do you do regularly on your arm as lymphedema prevention?

[rkmsim]

I tried several different gloves and finally ended up with a custom made one.  But Juzo, Medi and Jobst are some of the ones that come to mind.  When I went to the lymphedema clinic and told the therapist about my situation and how I ended up with the lymphedema during my lazy period, she agreed that it was probably the lack of activity that contributed to the lymphedema.  She has seen similiar cases.  Anyway, I go to water aerobics classes which the therapist said is one of the best types of exercise.  In addition, I keep some hand weights on the floor by my chair in the living room and in the evenings I will just sit there and lift the weights for a couple of minutes.  Don't overdo the exercise because you can end up causing problems that way too.  But, do keep the arm active to keep the fluids moving.  At the first sign of any swelling, be aggressive and don't let the doctors put you off.  I just kept pressing them to do something and finally got someone to listen. A couple of the doctors had the attitude of "well, it isn't bad right now so just wait and see what happens."  No way.  Another one told me to go home and put hot packs on my arm!!!!  I educated him quickly.

[Karen MSN NNP]

Thank you so much for your info.
I feel better that perhaps, the exercises I am doing right now maybe sufficient and that I should just consider watching out very carefully and get me a compression sleeve for the time I fly. I am swimming very often thses days. I also used to go to Y to work out regularly. Now, that I am back to work and don't have the time to go, I have 6 lb weights lying around the living room just as you said so I can pick them up while I watch tv. So glad to be able to chat with someone who knows what I am talking about. Love