Lymphedema-1 year and counting

edana
edana Member Posts: 1
edited March 2014 in Breast Cancer #1
Today is the first time I have looked at the ACS site and the first time I have viewed the Cancer Survivors Chat Board. I don't know why it has taken me this long to do either but there is always a first time for everything....I was diagnosed two years ago last Thanksgiving with a very aggressive form of breast cancer. I found the two growths myself - less than two months after I had a mammogram! The day before Thanksgiving I spent the day not making pies for the 20 some people who were joining us the next day, but in the hospital having one test after another from 7 in the morning until almost 7 that evening. I also had a port implated. Needless to say, Thanksgiving for me that year was a blurr. My chemo treatments started the following Monday. I had 3 months of AC, followed by 6 months of Taxol. I had a modified radical mastectomy of the right breast that May followed by 2 months of radiation and another 3 months of Taxol. November of 2002 I thought I was done. On my two year "anniversay" of first being diagnosed with breast cancer, I was diagnosed with lymphedema of the right arm, hand and torso.
I am fortunate as I live near Boston and have access to some of the finest doctors and medical facilities in the world. But I was hard pressed to find someone who could help me with the lymphedema. After almost 4 months, I found someone who was schooled in Germany specifically in the Lerner/Vodder method of manual lymph drainage for lymphedema. This young woman taught my husband how to do the message therepy and taught me how to better cope with this - deformity. She and my husband have done wonders for my lymphedema. But last week, I found out that Blue Cross and Blue Shield of MA will no longer cover my sessions with my LMT because she is not a PT or OT and they do not recognize her as a medical prefessional. I have written BX/BS to have them reconsider their decision, but was informed today in writing that their decision is final. Now what do I do?

I know that this is not the end of the world (I faced that possibility almost 2 years ago) but I still find this a hard blow. I feel as if I have gone through enough with all this without having my insurance company bail out on me.

If I have learned nothing else these last two years, I have learned that I am a fighter and I will fight this as well. I have not gotten to where I am today without the love, support and encouragement of those I hold dear. And I know that from them I will find the strength to tackle this as well.

To all of you out there whose chats I have read re:lymphedema, I send you my encouragement, my hopes, my prayers for you all in your efforts to deal with your lymphedema. You are not alone. I know each day is a struggle for some of you, but please remember, even though we may grumble from time to time with this, thank God we are alive!

Comments

  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • flee
    flee Member Posts: 1
    #3
    EDana, I was diagnosed with breast cancer Nov 2002, had mastectomy Dec 4, 2002. I am now having problems with lymphedema. As I type this I am trying to do so with my left hand, due to my right arm and hand being bandaged. I am going to a therapist for mld and the bandaging. I really hate this! I also know this isn't the end of the world, but it is just one more thing to deal with. I too am grateful to be alive. I am glad to have found this message page. It helps to read about others who have "been" there. Fal
  • dan99
    dan99 Member Posts: 1
    #4
    now that it is July 2005, how is the Lymphedema?
    My wife has it in the leg for 15 years now. All the doctors want to do is tell her to elevate the leg above her head, wear compression hose, and deal with it. We heard about a Korean doctor in South Korea that has been doing surgry to fix the problem. We are reading up on it. Most US doctors do not want to cut.
    Dan
  • flitary
    flitary Member Posts: 1
    #5
    flee said:

    EDana, I was diagnosed with breast cancer Nov 2002, had mastectomy Dec 4, 2002. I am now having problems with lymphedema. As I type this I am trying to do so with my left hand, due to my right arm and hand being bandaged. I am going to a therapist for mld and the bandaging. I really hate this! I also know this isn't the end of the world, but it is just one more thing to deal with. I too am grateful to be alive. I am glad to have found this message page. It helps to read about others who have "been" there. Fal

    I had a masectomy August of 2005 and reconstruction in March 2006. I have been having excrutiating pain on my right arm, where the mastectomy was performed. Does Lymphodema hurts?
  • Skybuf
    Skybuf Member Posts: 143
    #6
    flitary said:

    I had a masectomy August of 2005 and reconstruction in March 2006. I have been having excrutiating pain on my right arm, where the mastectomy was performed. Does Lymphodema hurts?

    Hi there, yes lymphodema hurts like the dickens! My L arm is swollen with it, hurts all over, numb in places and itchy in others.....have it wrapped now with tensor til they decide what to do. Having CT Scan to see what's happening there? Anti biotics for inflamation now, they say it's a 'chronic' thing, won't go away but can be managed.......good grief, trusting God as always:)
  • Sandra1
    Sandra1 Member Posts: 1
    #7
    flitary said:

    I had a masectomy August of 2005 and reconstruction in March 2006. I have been having excrutiating pain on my right arm, where the mastectomy was performed. Does Lymphodema hurts?

    I feel your pain. I had a left mod radical mastectomy 1987 and reconst. 1988, then right mod radical mastectomy 2002 and reconst. 2002 & 2003. Developed lymphedema 2005 and since then have had more health problems(depression, lungs, gums, joints & sex). I think I am using this survivors network as a last resort. I know I should be thankful to be alive, but its really hard.

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