lymphoedema

suspan

lymphoedema

suspan

I don't really know what to say had my surgery 6 weeks ago and had 2 lots of chemo up to now, just found out today I might have lymphodema as well just a bit down can anyone help me to understand.

Binney4

Hello, suspan, and welcome!

I'm so sorry you've been hit with this new twist, and right in the middle of everything else. I can imagine why you'd be a bit down today. I have lymphoedema too, and have had for about four years, since about six months after my second mastectomy. It can seem overwhelming, and there's lots to learn about, because whoever heard of the lymph system before?! And now we have to find ways to keep it in control day by day.

The treatment for lymphoedema (LE) has nothing to do with more surgery or drugs or anything invasive, so that at least is good news. It's treated by a gentle massage routine that a therapist can do for you for awhile and then you can learn to do for yourself. The massage itself is pleasant, and can give you a few moments every day to slow down and relax.

The other part of the treatment is compression. Usually a LE therapist will start by using special bandages to wrap your arm. They look like ACE bandages, but they don't have as much stretch to them. (In fact, they're called short-stretch bandages.) The massage helps to open new pathways for the lymph to move back into circulation, and the compression helps your muscle movements to pump the lymph fluid along through the lymph vessels. After all the swelling is reduced, your therapist will help you get fitted for a compression glove and sleeve that will keep the swelling from returning.

Here are a couple of good web sites for LE information:

www.lymphnet.org

www.lymphedemapeople.com

www.lymphnotes.com

And here are a couple of sites for finding well-trained therapists near you:

www.mylymphedema.com (click on the Therapist Locator and follow all the links - some are listed by country, and one shows a U.S. map but has a link below the map for "International")

www.mlduk.org.uk (this one is specifically for the UK - I'm guessing here, as I don't know where you're located)

suspan, there's a board just a few spaces down called "Lymphedema after Surgery," where lots of women post about their lymphoedema experiences. Please feel free to join us there. You can browse through the posts or jump in with any comments or questions you might have. 

I want to encourage you that as you move through treatment this really will get easier, and the LE routine wil become just that: routine, not a huge issue anymore. All that's true. But I also want to acknowledge your discouragement and distress with this diagnosis, because that's a very real experience. It just seems like too much on top of everything else, and I'm really sorry you're having to deal with it. I wish we lived close enough, and I could come share a cup of hot chocolate with you, and we could talk and cry together, and end up laughing some too. It'll get easier, suspan, but for now I'm sending lots of very gentle (((((hugs))))), and prayers for comfort and quick LE help.

Be well!

Binney