diagnoses of lymphodema

jgridley
jgridley Member Posts: 169
edited March 2014 in Breast Cancer #1
a while ago I posted a thread saying I was so frustrated with rads onc.and his nurse. I called and rads doc is out of country and she told me to go and see family doctor.
today after work went to family doctor.and guess what?
they say I have lympodema...am awaiting phone call from family doctor tomorrow for occupational theraphy and fitting for pressure stocking. I am so frustrated at Dr.of No charisma ( I liked that usage from previous posting) and his nurse for not taking me seriously when I told them of the pain in my arm and not too mention the lump that has developed over the last two months. In away I want to call her and say thanks for nothing. But the christian part of me says that it wouldn't be right.

Julie
«1

Comments

  • tasha_111
    tasha_111 Member Posts: 2,072
    #2
    Julie
    Christians are allowed to tell the likes of Dr Charisma-Bypass and his sidekick, Cruella De Ville to Bugger Off!....Do it

    I have mild lymphedema too. I hope you get the help you need as this can be quite awful.

    Hugs Jxxxxxxxxxxxx
  • rjjj
    rjjj Member Posts: 1,822 Member
    #3
    Charisma by-pass
    Christians also have feelings and get upset. I have lymphodema also, and my Dr.'s didn't even know what to do. I finally got an apt. with a specialist, on Monday. I will let you know what they do. It is frustrating when we tell the Dr.'s and they blow us off. If it was them i bet it would be a whole different scenerio. We must put all of our trust in them and when they don't take us seriously it is disapointing to say the least. I have learned (the hard way to ask many many questions and keep hounding them about what's bothering me. Sad but true we have to be our own advocate. luv, jackie
  • taleena
    taleena Member Posts: 1,612 Member
    #4
    tasha_111 said:

    Julie
    Christians are allowed to tell the likes of Dr Charisma-Bypass and his sidekick, Cruella De Ville to Bugger Off!....Do it

    I have mild lymphedema too. I hope you get the help you need as this can be quite awful.

    Hugs Jxxxxxxxxxxxx

    Tasha.. I agree.. I consider
    Tasha.. I agree.. I consider myself to be a Christain (not perfect.. don't have to be).. but I do not have a problem calling BS.. BS... Your doctor and as Tasha put it Ms. Cruella De Ville did you no favors.. their is nothing wrong with you letting them know so...

    There is nothing wrong with standing up for yourself...even to doctors... and speaking your mind.. It is your health not theirs.

    Hugs and hopeing your feeling better soon...

    ~T
  • Kristin N
    Kristin N Member Posts: 1,968 Member
    #5
    rjjj said:

    Charisma by-pass
    Christians also have feelings and get upset. I have lymphodema also, and my Dr.'s didn't even know what to do. I finally got an apt. with a specialist, on Monday. I will let you know what they do. It is frustrating when we tell the Dr.'s and they blow us off. If it was them i bet it would be a whole different scenerio. We must put all of our trust in them and when they don't take us seriously it is disapointing to say the least. I have learned (the hard way to ask many many questions and keep hounding them about what's bothering me. Sad but true we have to be our own advocate. luv, jackie

    So sorry about your arm.
    So sorry about your arm. You do have to be your own advocate anymore. And, if you don't like how you are being treated, change doctors. You don't have to put up with doctors being crappy with you. Good luck!
  • CR1954
    CR1954 Member Posts: 1,390 Member
    #6
    Oh geez Julie........
    I'm very sorry to hear that it is indeed lymphodema. I was afraid it might be.

    I'm glad that you were able to get to your family doctor though and that he/she is getting you started in treatment for it.

    Personally, I think that it would do both you and the nurse good, to let her know about what happened. And I would also bring it up to your onc when you next see him, just exactly what the nurse said to you, and that you felt that you were being brushed off.
    This is very likely going on with his other patients as well.
    And you can bring it up without being nasty. But express to him that you are not happy that you weren't taken seriously.
    One truly needs to have faith in their team of doctors when dealing with cancer. And treating you this way was no way to keep your faith in them.

    I hope you are feeling better soon.

    Hugs,

    CR
  • lynn1950
    lynn1950 Member Posts: 2,570
    #7
    Being assertive
    Dear Julie, I agree with CR. Being assertive and honest is not being unChristian. Even though I'm not a Christian, my family is and I've learned a lot through going to church; I believe we share the same God. Jesus certainly spoke his mind to right the wrongs in the world. He didn't only give his life.

    It is unfortunate that some of us get our assertiveness training the hard way - through breast cancer and lymphedema. I just had to assert myself to get a biopsy and get it NOW and guess what, the world didn't fall apart, my relationship with my surgeon is good, and real, and I feel empowered. It doesn't make the cancer go away, but it keeps our journey righteous.

    We just need to treat each other, heart to heart and eye to eye, seeing the humanity in each of us, even when we want to kick A.
  • jk1952
    jk1952 Member Posts: 613
    #8
    lynn1950 said:

    Being assertive
    Dear Julie, I agree with CR. Being assertive and honest is not being unChristian. Even though I'm not a Christian, my family is and I've learned a lot through going to church; I believe we share the same God. Jesus certainly spoke his mind to right the wrongs in the world. He didn't only give his life.

    It is unfortunate that some of us get our assertiveness training the hard way - through breast cancer and lymphedema. I just had to assert myself to get a biopsy and get it NOW and guess what, the world didn't fall apart, my relationship with my surgeon is good, and real, and I feel empowered. It doesn't make the cancer go away, but it keeps our journey righteous.

    We just need to treat each other, heart to heart and eye to eye, seeing the humanity in each of us, even when we want to kick A.

    I'm sorry that you have to

    I'm sorry that you have to go through this, and that your doctor and nurse have been so unresponsive.

    I agree 100% with CR and Lynn. Expressing your opinions and frustrations is not un-Christian; provided you are doing it for the right reasons. Your doctor has a right to know that they missed the boat with your problem, and he should be appreciative that you are helping him do a better job in the future. Also, your doctor should not have been unavailable without a backup doctor for you to see. In my opinion, that is something that should be expressed to him. Although radiation is normally quite safe, they should always have someone available to see you, if there is a problem.

    At least, they did direct you to your Primary Care Physician. My PCP has always been very quick to refer me to a specialist whenever he sees a problem, so you may have received better/quicker results seeing him than the radiation oncologist.

    Joyce
  • jgridley
    jgridley Member Posts: 169
    #9
    tasha_111 said:

    Julie
    Christians are allowed to tell the likes of Dr Charisma-Bypass and his sidekick, Cruella De Ville to Bugger Off!....Do it

    I have mild lymphedema too. I hope you get the help you need as this can be quite awful.

    Hugs Jxxxxxxxxxxxx

    bugger off
    I like that comment... and am laughing at cruella de ville one as well. Is yours in your dominate arm? mine is. with treatment does it go away or does it stop it from progressing?

    sorry for so many questions, but just am concern...

    thanks again

    Julie
  • jgridley
    jgridley Member Posts: 169
    #10
    rjjj said:

    Charisma by-pass
    Christians also have feelings and get upset. I have lymphodema also, and my Dr.'s didn't even know what to do. I finally got an apt. with a specialist, on Monday. I will let you know what they do. It is frustrating when we tell the Dr.'s and they blow us off. If it was them i bet it would be a whole different scenerio. We must put all of our trust in them and when they don't take us seriously it is disapointing to say the least. I have learned (the hard way to ask many many questions and keep hounding them about what's bothering me. Sad but true we have to be our own advocate. luv, jackie

    Jackie
    Thanks Jackie :-) and yes please keep me posted.
    call me stupid here..but if they are oncologists, shouldn't they know who to send us too.
    maybe that is not part of the training as oncolgists.

    luv ya too jackie...

    julie
  • jgridley
    jgridley Member Posts: 169
    #11
    CR1954 said:

    Oh geez Julie........
    I'm very sorry to hear that it is indeed lymphodema. I was afraid it might be.

    I'm glad that you were able to get to your family doctor though and that he/she is getting you started in treatment for it.

    Personally, I think that it would do both you and the nurse good, to let her know about what happened. And I would also bring it up to your onc when you next see him, just exactly what the nurse said to you, and that you felt that you were being brushed off.
    This is very likely going on with his other patients as well.
    And you can bring it up without being nasty. But express to him that you are not happy that you weren't taken seriously.
    One truly needs to have faith in their team of doctors when dealing with cancer. And treating you this way was no way to keep your faith in them.

    I hope you are feeling better soon.

    Hugs,

    CR

    CR
    Thanks....I am going to call after I meet with occ health. I can express my feelings tackfully with out loosing my cool. but belive me now I will step out and be my own advocate and if I don't like the answers, then I will speak up that is for sure.

    lesson learned in the school of hard knox...

    hugs back to you

    Julie
  • jgridley
    jgridley Member Posts: 169
    #12
    lynn1950 said:

    Being assertive
    Dear Julie, I agree with CR. Being assertive and honest is not being unChristian. Even though I'm not a Christian, my family is and I've learned a lot through going to church; I believe we share the same God. Jesus certainly spoke his mind to right the wrongs in the world. He didn't only give his life.

    It is unfortunate that some of us get our assertiveness training the hard way - through breast cancer and lymphedema. I just had to assert myself to get a biopsy and get it NOW and guess what, the world didn't fall apart, my relationship with my surgeon is good, and real, and I feel empowered. It doesn't make the cancer go away, but it keeps our journey righteous.

    We just need to treat each other, heart to heart and eye to eye, seeing the humanity in each of us, even when we want to kick A.

    being assertive
    thanks lynn,and your right... love the wedding dress.

    Julie
  • jgridley
    jgridley Member Posts: 169
    #13
    jk1952 said:

    I'm sorry that you have to

    I'm sorry that you have to go through this, and that your doctor and nurse have been so unresponsive.

    I agree 100% with CR and Lynn. Expressing your opinions and frustrations is not un-Christian; provided you are doing it for the right reasons. Your doctor has a right to know that they missed the boat with your problem, and he should be appreciative that you are helping him do a better job in the future. Also, your doctor should not have been unavailable without a backup doctor for you to see. In my opinion, that is something that should be expressed to him. Although radiation is normally quite safe, they should always have someone available to see you, if there is a problem.

    At least, they did direct you to your Primary Care Physician. My PCP has always been very quick to refer me to a specialist whenever he sees a problem, so you may have received better/quicker results seeing him than the radiation oncologist.

    Joyce

    joyce
    Joyce, your right! it is sad when PCP seems to take you more serious than rads onc.
    but then maybe he is not educated in that area to identify. I also agree that he should have a back up or on call doctor when he goes to India. I am glad I went because I almost just dismissed it. thinking that if they are not worried then I shouldn't either. Or maybe I was just paranoid (sp). But I am glad taht I have my Warrior Sisters here with me.

    Julie
  • crazylady55
    crazylady55 Member Posts: 92
    #14
    jgridley said:

    being assertive
    thanks lynn,and your right... love the wedding dress.

    Julie

    sorry Julie
    Sorry Julie for all the problems you are having. I too have mild lymphadema and has just started physical therapy. 2 times a week for now and then every day for 2 weeks after I finish rad.

    There is a website that my rad onc and therapist recommended it is :
    www.lymphnet.org

    I have a very good friend who is a physical therapist but she is not trained or certified in lymphadema therapy she gave me this one warning:

    *** find a therapist who specializes in lymphadema because a bad therapist can do more harm than good.

    Best wishes keep us posted
  • Noel
    Noel Member Posts: 3,095 Member
    #15
    I am sorry about your having
    I am sorry about your having lymphodema Julie. You have been thru so much already. I don't

    have it, so, I count myself lucky. There are several on here that do and will be able to

    talk to you in more detail. I do wish you the best.
  • Kat11
    Kat11 Member Posts: 1,931 Member
    #16
    Noel said:

    I am sorry about your having
    I am sorry about your having lymphodema Julie. You have been thru so much already. I don't

    have it, so, I count myself lucky. There are several on here that do and will be able to

    talk to you in more detail. I do wish you the best.

    What is lymphodema ? So I am
    What is lymphodema ? So I am just a week out of surgery, arm hurts really bad. Feels like I have a burn down the back and the inside of my arm. Is this the start of lymphodema ?
  • tasha_111
    tasha_111 Member Posts: 2,072
    #17
    Kat11 said:

    What is lymphodema ? So I am
    What is lymphodema ? So I am just a week out of surgery, arm hurts really bad. Feels like I have a burn down the back and the inside of my arm. Is this the start of lymphodema ?

    Kat
    Lymphedema, In my case was a slightly swollen arm that hurt to the touch right down to the base of my thumb. I couldn't wear clothes that even touched that arm or I would be in total agony for weeks.
    It has gone away (Touch wood) but I still avoid elasticated wristbands and wearing 17 ganzies on top of each other in the winter.

    Hugs J

    Ps..Yes it is my dominant arm, I'm getting better with my left arm, but I still tend to carry heavy stuff with the right, force of habit...

    XXXxxxxxxxxxxx
  • Kat11
    Kat11 Member Posts: 1,931 Member
    #18
    tasha_111 said:

    Kat
    Lymphedema, In my case was a slightly swollen arm that hurt to the touch right down to the base of my thumb. I couldn't wear clothes that even touched that arm or I would be in total agony for weeks.
    It has gone away (Touch wood) but I still avoid elasticated wristbands and wearing 17 ganzies on top of each other in the winter.

    Hugs J

    Ps..Yes it is my dominant arm, I'm getting better with my left arm, but I still tend to carry heavy stuff with the right, force of habit...

    XXXxxxxxxxxxxx

    tasha
    So am I just recovering from surgery or is this terrible burning lymphedema. This is also my dominant arm.
  • tasha_111
    tasha_111 Member Posts: 2,072
    #19
    Kat11 said:

    tasha
    So am I just recovering from surgery or is this terrible burning lymphedema. This is also my dominant arm.

    Kat 11
    You are just getting over the shock of surgery.........

    You wouldn't believe what I can do with that arm now........It's all just a distant memory.

    I will be thinking of you., Hugs Jxxxxxxxxxxxx
  • jnl
    jnl Member Posts: 3,869 Member
    #20
    rjjj said:

    Charisma by-pass
    Christians also have feelings and get upset. I have lymphodema also, and my Dr.'s didn't even know what to do. I finally got an apt. with a specialist, on Monday. I will let you know what they do. It is frustrating when we tell the Dr.'s and they blow us off. If it was them i bet it would be a whole different scenerio. We must put all of our trust in them and when they don't take us seriously it is disapointing to say the least. I have learned (the hard way to ask many many questions and keep hounding them about what's bothering me. Sad but true we have to be our own advocate. luv, jackie

    Just because you are a
    Just because you are a Christian does not mean that you can't take control of your life and your treatment. Don't just stand by and do whatever. Find out what you can do and be your own advocate. Good luck!
  • jgridley
    jgridley Member Posts: 169
    #21
    crazylady55 said:

    sorry Julie
    Sorry Julie for all the problems you are having. I too have mild lymphadema and has just started physical therapy. 2 times a week for now and then every day for 2 weeks after I finish rad.

    There is a website that my rad onc and therapist recommended it is :
    www.lymphnet.org

    I have a very good friend who is a physical therapist but she is not trained or certified in lymphadema therapy she gave me this one warning:

    *** find a therapist who specializes in lymphadema because a bad therapist can do more harm than good.

    Best wishes keep us posted

    thanks
    Thanks for the information :-) and yes I will keep you posted. I will go to website tooo

    thanks

    Julie

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