HER2 Support Group Forums - View Single Post - Would like to speak to someone with lymphedema

vlcarr · 07-24-2010, 09:54 AM

Hi Ellie,
I honestly don't know what stage I am but it's not bad yet but seems to be swelling more the past week. I'm seeing a certified lymp therapist. I saw one before rads to get educated about prevention, then developed lymp after rads. I had to wait 6 weeks after rads because they didn't want to work on radiated skin.

I'm currently seeing them 2 days a week and doing the exercises they've prescribed for me. I'm also wearing the compression sleeve all day per their guidance. They also say that my neck surgery is impacting my problems as well. I was in PT for that when I found my lump. I had to wear the hard collar for 6 weeks so you can imagine the muscles in my neck never really got to build back up before the bc treatments started.

Also, in 2003 I separated my right shoulder (mast side) and the knot that you have there forever as a result of that has been bothering me. They basically say I have a lot going on--you think-lol.

Thanks to all of you who sent me a PM and I plan on calling you.

As always, you're all the best

07-24-2010, 09:54 AM	#4
vlcarr Senior Member Join Date: Jun 2009 Posts: 343	Re: Would like to speak to someone with lymphedema Hi Ellie, I honestly don't know what stage I am but it's not bad yet but seems to be swelling more the past week. I'm seeing a certified lymp therapist. I saw one before rads to get educated about prevention, then developed lymp after rads. I had to wait 6 weeks after rads because they didn't want to work on radiated skin. I'm currently seeing them 2 days a week and doing the exercises they've prescribed for me. I'm also wearing the compression sleeve all day per their guidance. They also say that my neck surgery is impacting my problems as well. I was in PT for that when I found my lump. I had to wear the hard collar for 6 weeks so you can imagine the muscles in my neck never really got to build back up before the bc treatments started. Also, in 2003 I separated my right shoulder (mast side) and the knot that you have there forever as a result of that has been bothering me. They basically say I have a lot going on--you think-lol. Thanks to all of you who sent me a PM and I plan on calling you. As always, you're all the best __________________ Vicky Age 47, TN, Diagnosed 05/09 Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor Grade 3 Sentinel Node Biopsy-speck present in 1 node Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily Tumor no longer present Right mastectomy and lymph node removal 09/25/09 No cancer present at time of surgery, none in lymph nodes Start TCH 10/15, every 3 weeks for 4 months followed by radiation Finished chemo 01/28/10-YEAH! Herceptin every 3 wks until end of June Radiation begins 03/01, 6 1/2 weeks Radiation complete--Yeah!! Developed lymphedema after radiation In hospital for 4 days with pneumonia:( Herceptin done! 06/24/10 Port Removed 07/08/10 Still in PT for lymphedema and mobility issues DIEP Reconstruction 05/11 I can be changed by what happens to me, but I refuse to be reduced by it~~Maya Angelou