Lymphodema

Peg · 12-28-2010, 12:34 PM

I had my second to last chemo treatment yesterday and the Oncologist thought I had a blood clot or lymphedema in my left arm. The Doppler confirmed no blood clot, so it is probably lymphedema. The doctor gave me a prescription to see a physical therapist and am trying to locate one now. I had sentinel lymph node biopsies on the left and right side, only three nodes removed on each side. Surgery was performed on September 2. Is this common so long after surgery?

Peg

Pam P · 12-28-2010, 01:38 PM

Yes. Lymphedema can develop months and years later. I have right arm lymphedema which started about 2 years after my mastectomy. Seeing a good therapist who is specialized in the field is essential. I have learned so much in how to maintain my arm, treat it, tricks and tips. I get therapy (MLD manual lymph drainage) every now and then. In the beginning I did some intense sessions daily for a week. I was measured and fitted for a compression sleeve which I wear everyday. I was taught how to bandage at night and did that regularly for years. That's the best treatment they'll tell you. I now wear another garment at night called an arm assist. It's not as good as bandaging but it works well for my needs. You'll do fine - it can seem overwhelming at first, but becomes routine and can be easy to maintain and hopefully improve quickly from what you are seeing now. there have been several threads on this site on lymphedema so if you do a search you'll find more info from others. Pam

Jackie07 · 12-28-2010, 08:38 PM

I developed lymphedema about 4 months after bi-lateral mastectomy. It only affected my right arm/hand because that's where I got the (very tiny-invisible) bug bites while picking figs in the back yard. After getting antibiotics through IV, I was taught to wrap my arm and hand with a thin glove, cotton pad and bandage. When most of the swelling was down, I was fitted with a custom-made compression sleeve and glove by the physical therapist.

I didn't know how much skills and experience it requires to fit the sleeve and glove correctly until this fall when I was getting a new set from a new business location in town. The glove and sleeve had to be returned twice and a regional supervisor came to monitor the staff doing the measurement.

Ask the physical therapist if he/she is a certified/trained lymphedema specialist.

caya · 12-29-2010, 08:31 AM

Peg I developed mild lymphedema 2 years after my MRM surgery - I had 16 nodes removed (all negative).

I remember exactly what happened - I was chopping veggies on a Friday afternoon and cut one of my right hand fingers. I immediately cleaned it,put on polysporin and bandaged it. When I woke up the next morning my right hand was slightly swollen, I knew immediately it was lymphedema.

On Monday morning I called my breast surgeon's office and the secretary said it would be unlikely it was lymphedema after 2 years, but I insisted so she booked me for the next day. My BS confirmed it, thought it was very mild and could be reversible if I was careful and did the exercises he recommended to me before I could get into the lymphedema clinic at the Princess Margaret Hospital. I am lucky that I live in a big city (Toronto, Canada) and have access to a wonderful team of lymphedema specialists who taught me exercises to do, do drainage massages etc. They sent me to a special fitter who measured me for a sleeve and gauntlet, I only need to wear these on flights. I go for a yearly assessment and massage, I could go more often if I wanted to, but I am fine and prefer to give my spot to women who need it more than I do.

I have to say I was ruthless doing the special exercises for 2-3 months after my diagnosis, and basically my lymphedema has been reversed, but I continue to be careful.

Good luck.

all the best
caya

Sherryg683 · 12-29-2010, 10:45 PM

Five years later,I have developed lymphedema in my right forearm about 2 months ago. It's what they say is a mild case but it's definately swollen and my hand swells. I am doing therapy, purchased the newest, hot off the line, just FDA approved compression pump and have compression sleeves that I wear all the time except when I'm going out somewhere special. I still am able to play tennis but I am really bummed that this happened this late in the game. I believe it was brought on by a massage I got. Dumb me let them massage my arm and that day, I noticed it swelling...so NEVER let anyone massage your affected arm. I have had previous massages that never caused it to swell, I guess I figured I was immune to getting it...very stupid of me, I must say.

Sheila · 12-31-2010, 05:45 AM

Peg
I developed lymphedema this year...8 years after diagnosis! I do have mets to my axillary nodes, and chest, neck etc. I also wear a sleeve and glove during the day, but not at night. I am going to go for therapy..have just not felt like it lately. I did find some amazing sleeves that my insurance covered....they are not the normal medical ones, they were designed by 2 girls with breast cancer. Here is the website:

www.lymphedivas.com

candlegranny · 12-31-2010, 06:42 AM

I had mild lyphedema after my masectomy but it went away. I was very pleased at the time. As soon as I started radiation, my radiologist sent me to a lymphedema therapist, he said radiation can cause lymphedema. I have it now! The therapist and radiologist both agree the radiation is the culprit. I do MLD daily. I have the flexi-touch machine but it is very hard to get on alone, and my husband travels occasionally. I wear a sleeve and gauntlet, but nothing at night time. My therapist says it is stage 2. I hate i have this and it is a life style change (limit use of my left arm)....but it is not painful and it certainly will not kill me.

custom · 01-01-2011, 09:47 PM

what kind of compression pump did you get? I heard Flexi Touch was good.

candlegranny · 01-01-2011, 10:45 PM

I have a flexi touch. it works good but it is hard for me to put on alone.

chicagoetc · 01-02-2011, 07:30 PM

I developed Lymphodema this year (last year by now!)...three years post initial diagnosis. I am thinking the risks / side effects of treatment do not necessarily go away with time. Rehab was good. Ongoing care is another. It could be worse!

Melanie

Peg · 01-04-2011, 06:05 PM

Thank you ladies for all the responses and information. I go to see a licensed physical therapist this Thursday and will update you after my visit. My surgery was in September 2010 but I thought since it did not develop right away I would not have any problems.

Peg

axecooper · 01-05-2011, 01:39 AM

Lymphedema is a debilitating disease called progressive incurable. The unfortunate patient facing a constant struggle of medicine, and sometimes the surgical treatment of complications of great danger. Definition of Lymphedema- Lymph is a clear liquid that is carried by very small channels throughout the body. Blocking the flow of this fluid results in the accumulation of lymph in the surrounding tissues. It can occur anywhere in the body, but appears most often, especially in the two arms or legs and is called lymphedema.

Peg · 01-08-2011, 01:20 PM

I saw the PT on Thursday and have eight more sessions scheduled. I have massage and excercises to do every three hours. Next week I will be fitted for a sleeve. Hopefully once the swelling is down I wont be bothered with flare ups too often.

Peg

Jackie07 · 01-08-2011, 01:55 PM

Great news! So the massage and exercise is working!

fauxgypsy · 01-11-2011, 07:37 PM

I had lymphedema in my right arm several months after the mastectomy. It wasn't terrble but I developed cellulitis in it several times (and that hurts). Sometimes I found it hard to get the doctors to take it seriously enough because it wasn't a bad case. I finally found a certified lymphedema therapist and I went daily for therapy for about a month. She then taught my husband the routine and we continued it for a few months. Occasionally I feel my arm getting tight, or very sensitive to touch and I make sure that I move it and stretch it and I have had to get my husband to do the massage again a few times. For the most part I can do anything I want but I cannot lift like I could before, I do lift more than the 8 pounds that some of the information suggests but I have learned my limits. My hand swelled worse with the sleeve than without so the sleeve was not helpful for me. Make sure that the therapist is trained in lymphedema therapy, not just physical therapy. That is the most important advice I can give you.