Exactly who makes the medical diagnoses of lymphedema?

cinnamonsmile
cinnamonsmile Member Posts: 1,187 Member
in Breast Cancer #1
Exactly who makes the official medical diagnoses of lympedema? Does it need to be a doctor or lympedemiologist?

Comments

  • sweetvickid
    sweetvickid Member Posts: 459 Member
    #2
    Not sure. My oncologist
    Not sure. My oncologist didn't but I made her get me an appointment with a therapist how said I was right.
  • mamolady
    mamolady Member Posts: 796 Member
    #3
    My physical therapist made
    My physical therapist made the diagnosis. She specializes in LE.


    Cindy
  • mwallace1325
    mwallace1325 Member Posts: 806
    #4
    My clinical trial nurse
    My clinical trial nurse during a visit to my onc during chemo. She saw my hand, told me to take off my rings (really hard to take off the wedding rings) and she set up a appointment with p/t. I was doing a clinical trial in addition to chemo so the nurse heading up that study was always there for me, keeping a close eye on anything I might miss. If you notice any swelling, call your onc.

    marge
  • New Flower
    New Flower Member Posts: 4,294
    #5
    mamolady said:

    My physical therapist made
    My physical therapist made the diagnosis. She specializes in LE.


    Cindy

    Lymphedema therapist
    Please ask your surgeon for referrals. She/he should give you recommendation. Physical therapists or lymphedema certified therapists. I have read your posts, in my opinion you overused your affected arm. There is a restriction on amount of weight you should handle by your arm. I was told initially restrict it to 5 pounds. Also, you have been working on nerve blockage however do you have a full range of motion? If you do not obtain of full range of motion yet, Please see a physical therapist for improvement. You need to learn how to use your arm, not just to block the pain.

    I have had horrble pain and do have lymphedema. I was working with therapists and very hard myself. I am a strong believer of physical therapy and always trying to combine both medications with PT.

    Wishing you the best
  • Rague
    Rague Member Posts: 3,653 Member
    #6
    My experiemce
    The first to notice a small difference was one of my Chemo nurses. She called to Dr T and when I left Chemo I went to see him. He called my PA and she sent me to the VA Lymphedemolist.

    The protocol for my care is a bit different than using insurances - my care is through VA. They had out-sourced me to the local Cancer Care Institute and surgery with a local private Surgeon in the local hospital but basically as she is my PC at VA everything has to run through her - she's great. So some of my care is done in the 'Private World" and some in the "VA World".

    Check with your provider as to waht they need to document.

    Susan
  • mruczko
    mruczko Member Posts: 110
    #7
    Diagnosis
    CS - that's a good question. The huge hospital system my insurance is affiliated with has only one lymphedema specialist plus therapists located at the opposite end of the City. I have been told this specialist would make the deciding, definitive diagnosis and charter the course of treatment, which then would be covered by my Medicare HMO. Since treatment requires numerous massages, compression garments, etc. the insurance would not pay unless prescribed by a physician.
    Hugs, Marlene
  • mruczko
    mruczko Member Posts: 110
    #8
    Diagnosis
    CS - forgive my addled chemo brain - I have to go through the internist, that's the way my HMO works and since this lympedema specialist may not be in my group, he may well be the one to do the diagnosis. I am a firm believer in the common sense of medical personnel such as nurses (bless them), PT's, etc. and they may well be the first ones to notice the problem.
    M.
  • smalldoggroomer
    smalldoggroomer Member Posts: 1,184
    #9
    I noticed the back of my arm
    I noticed the back of my arm felt fuller but didn't really look any different. My Dr sent me to the therapist and she Dx Lymphedema by measuring my arm, looking at the skin and feeling and comparing it to the other. She also told me that you can have it in one part of your arm. It does not always affect the whole arm. I have it just above my elbow on the back of my arm so far that is the only place. Kay
  • missrenee
    missrenee Member Posts: 2,136 Member
    #10
    smalldoggroomer said:

    I noticed the back of my arm
    I noticed the back of my arm felt fuller but didn't really look any different. My Dr sent me to the therapist and she Dx Lymphedema by measuring my arm, looking at the skin and feeling and comparing it to the other. She also told me that you can have it in one part of your arm. It does not always affect the whole arm. I have it just above my elbow on the back of my arm so far that is the only place. Kay

    As some of the others have said. . .
    a Certified Lymphedema Therapist. Some of the docs can be pretty clueless--a lot of them think, well, I did a good job on the surgery/chemo/rads, so I'm done. There are many lingering affects and lymphedema is just one of them. My lymph. therapist said this is not uncommon to have the docs really minimize it. I think there's a spreading awareness that this is a troublesome side effect, needs proper treatment and can be managed if it's handled promptly and properly.

    Hugs, Renee
  • cinnamonsmile
    cinnamonsmile Member Posts: 1,187 Member
    #11
    New Flower said:

    Lymphedema therapist
    Please ask your surgeon for referrals. She/he should give you recommendation. Physical therapists or lymphedema certified therapists. I have read your posts, in my opinion you overused your affected arm. There is a restriction on amount of weight you should handle by your arm. I was told initially restrict it to 5 pounds. Also, you have been working on nerve blockage however do you have a full range of motion? If you do not obtain of full range of motion yet, Please see a physical therapist for improvement. You need to learn how to use your arm, not just to block the pain.

    I have had horrble pain and do have lymphedema. I was working with therapists and very hard myself. I am a strong believer of physical therapy and always trying to combine both medications with PT.

    Wishing you the best

    My mastectomy was back in in
    My mastectomy was back in in January 2011 and believe me, I did not overuse my arm back then. I have been in physical therapy since June. I am working with my pain management team to find a level of activities that are within my range. I am adding activities in an orderly manner, although sometimes pain fluctuates and is worse sometimes than others. It is somewhat predictable in an unpredictable manner. In fact, the pain counselor I see, has a wonderful approach for chronic pain management. Alot of it is based on trial and error, finding what works, what doesn't, how much and how often can I do certain activities.I have full range of motion. And as I have said, I have a wonderful pain management team that has been working with me since the beginning of summer. Everything you are suggesting, has been in place since June 2011. I have a number of techniques in combating pain that I use, medicines, physical therapies, pain clinic doctors, a wonderful pain counselor that help me find ways to live better physically, emotionally and mentally and use all three to live a much better life. It is simply not a case of overusing my arms.
    The only question I posed was who exactly makes the lymphedema diagnoses.
  • New Flower
    New Flower Member Posts: 4,294
    #12
    cinnamonsmile said:

    My mastectomy was back in in
    My mastectomy was back in in January 2011 and believe me, I did not overuse my arm back then. I have been in physical therapy since June. I am working with my pain management team to find a level of activities that are within my range. I am adding activities in an orderly manner, although sometimes pain fluctuates and is worse sometimes than others. It is somewhat predictable in an unpredictable manner. In fact, the pain counselor I see, has a wonderful approach for chronic pain management. Alot of it is based on trial and error, finding what works, what doesn't, how much and how often can I do certain activities.I have full range of motion. And as I have said, I have a wonderful pain management team that has been working with me since the beginning of summer. Everything you are suggesting, has been in place since June 2011. I have a number of techniques in combating pain that I use, medicines, physical therapies, pain clinic doctors, a wonderful pain counselor that help me find ways to live better physically, emotionally and mentally and use all three to live a much better life. It is simply not a case of overusing my arms.
    The only question I posed was who exactly makes the lymphedema diagnoses.

    Cinnamon
    Hi,
    I am glad that you have a good team and program in place. You are still less than 9 months after your surgery and I am sure will fell better as time goes by. Moreover if you careful about weight and activities, you are on the right path. Unfortunately, some of us has more serious complications than others and need additional treatments.

    I also think you have gotten many answers to your posted question. I do not see that you thank any of the people who have given an answer. Do not forget that they all have been using a lymphedema arm to type it. Believe me it is not fun.
    Wishing you the best
  • mruczko
    mruczko Member Posts: 110
    #13
    smalldoggroomer said:

    I noticed the back of my arm
    I noticed the back of my arm felt fuller but didn't really look any different. My Dr sent me to the therapist and she Dx Lymphedema by measuring my arm, looking at the skin and feeling and comparing it to the other. She also told me that you can have it in one part of your arm. It does not always affect the whole arm. I have it just above my elbow on the back of my arm so far that is the only place. Kay

    Clueless
    Kay:
    Both my oncologist and internist look only at my hands, they compare both and declare - no edema. However, like you the upper arm above my elbow feels fuller at the back. What has your doctor suggested you should do? Any treatment? I completely agree that most doctors are clueless. A lymphedema specialist at our support group agreed lymphedema is undertreated, underreported, underdiagnosed until it is full blown.
    Marlene
  • Lighthouse_7
    Lighthouse_7 Member Posts: 1,566 Member
    #14
    mruczko said:

    Clueless
    Kay:
    Both my oncologist and internist look only at my hands, they compare both and declare - no edema. However, like you the upper arm above my elbow feels fuller at the back. What has your doctor suggested you should do? Any treatment? I completely agree that most doctors are clueless. A lymphedema specialist at our support group agreed lymphedema is undertreated, underreported, underdiagnosed until it is full blown.
    Marlene

    I don't know the answer but
    I don't know the answer but every visit I have to my breast surgeon, they measure my arms on a machine that scans the length of each arm.
    The girl who does the test always compares it to my last one and tells me there has been no change.
    Hope this helps.
    Hugs,
    Wanda

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