Now I Finally got dx with LE

cinnamonsmile
cinnamonsmile Member Posts: 1,187 Member
in Breast Cancer #1
I saw an occupational therapist who supposedly knew how to treat LE last summer for severe scar adhesions on my chest and severe PMPS from my BMX w/ node dissection. I had to that were wonderful for that. I kept complaining about feeling swollen,achey,a feeling like I had wide rubber bands on the back of my upper arms and chest side. She would take arm measurements but do nothing. My last day of OT, she finally heard me about LE symptoms and gave me maybe 5 minutes of instructions of how to massage my arm and dismissed me.

I have been lurking around the LE section on breastcancer.org. I found that there were no certified LE therapists near me (closest was almost 3 hours away). I have been telling my family dr.,my pain dr and nurses about LE symptoms (my breast surgeon moved away and I don't have an oncologist).

Well, this summer my lower spine was hurting so bad I could hardly move, so I started PT for that. I got curious about the others that worked there and was reading all their info cards. I stumbled upon a woman who is part of the pilot program for cancer rehab for those that had or have cancer and need PT/OT for whatever AND it includes an individual exercise program. I was talking to my back PT about it and low and behold....that lady knows LE and how to treat it.

At my last family dr. appt she wrote me a prescription for the Cancer Stepping Stones and LE. The LE therapist happened to be at the front desk when I was making my first appt (the PT dept I am using is below my family dr). She took one look at me and could see I was swollen in the arm and the side truncal area.

Today was my first appt. and yup, I have LE. She did massaging on my chest and arms. I started using the pump, too for 30 minutes. She doesn't have any sleeves in my size, so she is ordering one for me. I am so relieved to finally have found someone.

So in addition to the severe PMPS, I officially have LE that I have known I have had for a year. I also consider myself very lucky that it stayed a mild case and didn't turn severe.

So I now joined the LE club....

Comments

  • lynn1950
    lynn1950 Member Posts: 2,570
    #2
    I am so glad to hear that
    I am so glad to hear that you found someone who HEARD you before your LE had gotten worse! I have some mild LE and I just think of it as another chronic condition. Most of the time I don't even think about it although initially I thought about it quite a bit. Hope your arm and chest area are feeling better and better! BTW, what is PMPS? xoxoxo Lynn
  • Frankie Shannon
    Frankie Shannon Member Posts: 457
    #3
    Glad you finely found some
    Glad you finely found some one to help you.
    Hugs Frankie
  • laughs_a_lot
    laughs_a_lot Member Posts: 1,368 Member
    #4
    good you found out
    There are a few of us on this board with Lymhedema. I sometimes think the doctors don't always have the light bulb go on in thier heads when we make certain complaints. Because many on my oncology team knew that I was doing a lot of research on my particular form of breast cancer I think it worked in my favor when I asked for something. I also think being on this board and reading so many stories from those who have gone through difficulties gave me more courage to ask for what I thought I needed. I think a good many of them knew also that I was on the ACS cancer support network. I was either really lucky or really respected when I self advocated for certain things.
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    #5
    lynn1950 said:

    I am so glad to hear that
    I am so glad to hear that you found someone who HEARD you before your LE had gotten worse! I have some mild LE and I just think of it as another chronic condition. Most of the time I don't even think about it although initially I thought about it quite a bit. Hope your arm and chest area are feeling better and better! BTW, what is PMPS? xoxoxo Lynn

    I don't have this, but, am
    I don't have this, but, am happy you found someone to help you. I hope you start feeling better quickly.


    Hugs, Jan

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