What can you do to stop lymphodema?

[Vic1970]

Hi all,i went for a check up at my breast clinic a year post radiotherapy,16 months post lumpectomy,17 months post chemo.The doctor said she could feel the breast was slightly larger and there was a bit of lymphodema following the operation and lymph node removal.My breast is quite sore but there doesn't seem to be any advice about how to get rid of it unless it's in your arms or legs.Any advice??x

[Jennymary]

Hi Vic, you need to be referred to a specialist Lymphodema clinic, I have breast Lymphodema and you need to get the proper advice regarding massaging and compression, can't see how to put a picture with a reply so I'm going to do a post with my compression garment

[Vic1970 in reply to Jennymary]

Thanks Jennymary I'll look into it,there was no suggestion of any follow up treatment and I got the impression it was just another side effect that you have to live with.I will have to see my gp now I expect to get referred to a lymphedema department.Thankyou for your reply.

[carolinenailsea]

Sounds like the best advice. Good luck

[Aussielouise]

I have same problems. The more I use my chest and arm muscles the more it hurts and swells. I’m 18mts post lumpectomy. I still have seroma. Doctors don’t seem bothered about it and was told that some people do have problems afterwards. Specialist made it sound like its almost normal for some people. It’s a lot better than it was six months ago. I couldn’t drive without a lot of pain then, and still have problems if I drive too much. I still can’t stand wearing a bra all day. Even the softest ones.

[Vic1970 in reply to Aussielouise]

Exactly the same,they told me there was slight lymphedema but didn't suggest anyway of dealing with it or even what to expect.Its quite uncomfortable now that it's been highlighted I find I'm thinking about it more and I don't want it to get worse.Im going to see my gp for advice I think.thanks for your reply,luv Vicky.xx

[Aussielouise in reply to Vic1970]

Hope you get some advice to deal with it. Xxxx

[Shumwayl]

I have lymphedema in my breast and trunk after lumpectomy and radiation. Started about 3 months after I finished radiation.

I went to a lymphedema specialist who was an occupational therapist certified in lymphedema. She taught me self massage to help move the lymph fluid and also helped me find compression bra and vest. I also wear what’s called a swell spot in my bra. It’s a pad that is kind of rippled. At night I have a compression tank that I put the swell spot in.

I have also used a Nike compression shirt that I bought 2 sizes down from my normal size. I use it over my bra and swell spot when I fly. It’s more comfortable and cooler than my compression vest.

I use a machine called Flexitouch. My insurance Paid for most of it. It applies graduated compression to my arm and trunk. I use it every night.

I find some activities like raking leaves or washing the car make it worse and other like swimming make it better.

When I fly I also wear a compression sleeve.

For me this is a chronic condition that I’ve learnedto manage. But it flares sometimes and hurts a lot.

No one should ever downplay this. It takes consistent effort to manage and is a constant reminder that your body is not what it used to be.