Lymphodema

Find a doctor that will refer you to a Physical Therapist that specializes in lymphedema.  There is plenty of help out there.

On 4/23/2008 Abrina wrote:

Find a doctor that will refer you to a Physical Therapist that specializes in lymphedema.  There is plenty of help out there.

Hi Kay, I'm sorry but I don't know the answer to your question but any info you get will be of interest to me.  It sounds as though we may have the same thing -- I was recently diagnosed with angiosarcoma of the breast, probably caused by radiation therapy in 1994 for breast cancer.  I'm scheduled for a radical mastectomy on 5/1. 

So how are you doing?  When was your surgery?  All the answers are probably here on this board but I'm new and don't quite understand how to "work" it.  I haven't found anyplace to look for info on this type of cancer and am writing you in the hope of finding more info. 

I hope you are feeling well and will have a rapid and uneventful recovery.  Please PM me if you have any info or would like to share experiences.

Sincerely,

Dianne (

)

Kay and Diane,

I just read the transcript of a conference with some doctors and a lymphadema specialist on breastcancer.org.  I did not know before that there is a garment that one wears that works the same way as a compression sleeve for lymphadema but it's for the mastectomy area.  It must be prescribed and fitted by a lymphadema specialist.

Until I read the transcripts of the conference, I did not know that lymphadema of the excision site was even possible.  We can learn so much on the computer.

To find information on just about anything, go to your search engine, I usually use Google.com, and put lymphadema or lymphadema treatments, then just go down the list and start reading.  You can do the same with types of cancer, different drugs, clinical trials, or anything you could possibly want information on. It won't take long before you find anything on any subject that you could imagine and some you wouldn't even have imagined. 

And then ask your oncologist for a referral to a lymphadema specialist.

I credit the information and the friendships I've found on the computer with helping me to be a survivor.  It's only been 3 years since diagnosis but my BC was stage 3C with all 18 of 18 nodes positive. 

hi ladies, i have had problems with lymphodema in my left on. did the physical therapy, compression wrapping, compression sleeve and also, the compression pump for 2 1/2hrs per day. everything was temporary,the fluid kept coming back.  my sisten-in-law told me about a rebounder(a small trampoline).  you do on it for 3 mins every hour. it works. you don't have to do any major bouncing on it!  i gave all the info to my surgeon and she is now recommending it to her patients.  joan

Dear Ladies,

     Thanks so much for the info on lymphodema. I will just have to live with my incision lymphodema since I am uninsured.I am learning how to do all this breast cancer stuff "on the cheap" since I get bills every day practically .

I went to the prosthesis store with my tlc catalogue. The saleslady said she could match the prices on some of the older models then she mentioned she had some donated prosthesis'es if I didn't feel revolted by the idea of using a used prosthesis. Hey, I loved the idea. I walked out with a free $400  prosthesis. I am sewing in inserts into regular bras and buying special bras on Ebay.!   

I had nodes removed under my left arm 3 years ago and had no problem with any swelling. Then I had a reaccurance in July at my masectomy site.  I had 2 positive nodes this time on my right side. Unusual, anyway I also had 5 fields of radiation one at the armpit. They told me lymphodema could be a side effect, so I started seeing a therapist right away, four months later I developed lymphodema and its not getting better, not worse, I bandage at night, wear a sleeve everyday, exercise and do massage.  Im interested in the rebounder. How do you use it 

On 5/5/2008 debbief wrote:

I had nodes removed under my left arm 3 years ago and had no problem with any swelling. Then I had a reaccurance in July at my masectomy site.  I had 2 positive nodes this time on my right side. Unusual, anyway I also had 5 fields of radiation one at the armpit. They told me lymphodema could be a side effect, so I started seeing a therapist right away, four months later I developed lymphodema and its not getting better, not worse, I bandage at night, wear a sleeve everyday, exercise and do massage.  Im interested in the rebounder. How do you use it 

all you do is gently bounce on the rebounder.  i broke my ankle in january and the doctor just gave me permission to start using it again, because you do not need to jump on it.  you can if you want to.  while i was recooperating, i had to go back to the sleeve, the wrapping and the pump, but now that i am back using the  rebounder the fluid is out of my arm. i bought my rebounder from it's my health.   goole rebounder and you will find out who sells them locally.make sure it has a bar you can hold onto.

let me know how you make out or if you need any more infor.  god bless and keep up the good work.