Lymphedema IN the breast - Who knew???

cindycflynn
cindycflynn Member Posts: 1,132 Member
edited March 2014 in Breast Cancer #1
I have heard about lymphedema in the arm on the side where lymph nodes were removed, but did you know you can also get lymphedema swelling in the breast itself without any in the arm? This is what I learned today and wanted to pass along.

I have been having a bit of pain around my surgical area and really noticing it when I reach my right arm up (I had a lumpectomy with 1 lymph node removed on 10/14, finished chemo on 2/17 and rads on 4/28) and also noticed that my right breast was a little swollen. At first I just thought it was part of the normal healing, but the pain and swelling seemed to increase over the past 4-5 days, so I called my doctor's office and was told that I may have lymphedema! I have a friend who is a lymphedema therapist, so I called her right away to ask if she'd seen a case like that, and she confirmed that it does happen. I'm waiting to hear back from my doctor's office with an appointment for a lymphedema therapist (my friend lives in another state, so I can't go to her) and will find out for sure then.

I just thought I'd pass that along for anyone else than might be experiencing similar symptoms. If you do have lymphedema, the earlier you address it the better, so don't wait to talk to your doctor if you see or feel your body change.

Comments

  • natly15
    natly15 Member Posts: 1,941
    #2
    Thanks for sharing this
    Thanks for sharing this info. I sure hope for your sake that it is not lymphedema. Please keep us posted.
  • sgamtd
    sgamtd Member Posts: 124
    #3
    Lymphedema
    Hi Cindy. The therapists for lymphedema are few and far between, good luck in finding one, and please take the first appointment they can give you.
    I have (unfortunately) experienced it, it's called truncal lymphedema, and I agree with you, the sooner you see a therapist the better. I had surgery and nodes removed in July of 2009, then during radiation, Sept.-Nov. I started experience swelling around the surgery scar and even on my back. Both the surgeon and the radiation doc thought it was reaction to the surgery and the radiation, and since I did have a reaction to the blue dye used during surgery of nodes, some of it was also contributed to that.
    In April of this year it had gotten alot worse, I was away from home and busy helping a relative (who had a stroke) with her movements, she is wheelchair bound, so there's alot of tranfers from chair to bed, to walker, to bathroom, also her excercises. I then started having the same kind of swelling in my arm as I had in my breast, and after seeing a lymphedema specialist for 6 weeks or so, we finally had the problem licked. The arm was easier to "fix" than the breast, as the sleeve you wear on your arm helps alot, but I also had massage therapy 3 times a week, for both edemas and am now fluid-buildup free. Best part was that she taught me how to massage the fluid out should it happen again.
    Keep us posted on how it goes.
    sgamtd
  • Christine Louise
    Christine Louise Member Posts: 426 Member
    #4
    Thank you
    Thank you for passing on this info. I had no idea. I sure hope treatment clears this up for you.
  • missrenee
    missrenee Member Posts: 2,136 Member
    #5
    I've had swelling since my surgery
    Had 2 surgeries in Dec. '09 with lumpectomy, revision for margins and 23 nodes removed. I had numbness for months (still have some) and swelling. My breast and down the side along my rib cage is where the swelling is. My arm is still okay. I finished chemo in May and am on the 3rd week of rads. My friend is an OT and has friends who are lymph specialists. I started seeing a therapist last week and I hope it helps. When I asked the surgeon and rad. onc. about this, they just seemed to think it was a normal post-op situation and didn't really seem too bothered about it and really offered no suggestions. I really like and trust my doctors, but I've heard from others, once the docs do their part, they kind of feel like they're basically done. Also, after reading info on the cancer sites, it seems the U.S. is far behind other countries in the research and treatment of lymphedema. It really helps to be your own health advocate!

    Good luck to all you ladies with the pain and swelling.
    Renee
  • TraciInLA
    TraciInLA Member Posts: 1,994 Member
    #6
    missrenee said:

    I've had swelling since my surgery
    Had 2 surgeries in Dec. '09 with lumpectomy, revision for margins and 23 nodes removed. I had numbness for months (still have some) and swelling. My breast and down the side along my rib cage is where the swelling is. My arm is still okay. I finished chemo in May and am on the 3rd week of rads. My friend is an OT and has friends who are lymph specialists. I started seeing a therapist last week and I hope it helps. When I asked the surgeon and rad. onc. about this, they just seemed to think it was a normal post-op situation and didn't really seem too bothered about it and really offered no suggestions. I really like and trust my doctors, but I've heard from others, once the docs do their part, they kind of feel like they're basically done. Also, after reading info on the cancer sites, it seems the U.S. is far behind other countries in the research and treatment of lymphedema. It really helps to be your own health advocate!

    Good luck to all you ladies with the pain and swelling.
    Renee

    You just have to be the exception, don't you?
    Cindy -

    You only had 1 lymph node removed, and they're thinking this is lymphedema?

    I had 3 nodes removed on one side and 4 on the other, and all my doctors have told me I'm at extremely low risk for lymphedema....so you just have to be the "exception," don't you? :-)

    I hope the therapist is able to help -- please keep us posted!

    Traci
  • KayNYC
    KayNYC Member Posts: 495 Member
    #7
    seeing PT on Friday
    I have lymphedema in my arm and breast. Had my lumpectomy and six nodes removed in mid- March.Completed Rads June 11, 2010. Rad Onc attributed swelling to the radiation. The NP gave me info about lymphedema and lymphedema bras suggesting I request a referral. I asked my Rad Onc for a referral. He didn't argue but did say he thought by the time the appt was available, the swellng might resolve. It did to some extent but if I use the vacuum, mop floors or do any lifting (opening the windows, pulling a patient chart at work etc) I swell).So far it is not bad but I have been waiting for over a month for the appt. Have plane tickets for the end of July so I am keeping my fingers crossed that the PT can help me at least keep the swelling under control. I cannot wear bras that I wore comfortably before my lumpectomy as I am at least a cup size larger (on the side of the surgery) when it swells.I registered for three of the top NYC hospitals for lymphedema PT services in late May. Only one site could give me an appt. I was wait listed by the other two and told that at the end of the summer they might have an opening.My appt is on Friday. Hoping for news that this can be managed more easily than I am hearing.
    Hugs,K
  • custom
    custom Member Posts: 7
    #8
    Does anyone know a good
    Does anyone know a good lymphedema therapist in Indianapolis In. I have some swelling to my Mastectomy area and under my arm. Arm not affected yet.
  • Christine Louise
    Christine Louise Member Posts: 426 Member
    #9
    KayNYC said:

    seeing PT on Friday
    I have lymphedema in my arm and breast. Had my lumpectomy and six nodes removed in mid- March.Completed Rads June 11, 2010. Rad Onc attributed swelling to the radiation. The NP gave me info about lymphedema and lymphedema bras suggesting I request a referral. I asked my Rad Onc for a referral. He didn't argue but did say he thought by the time the appt was available, the swellng might resolve. It did to some extent but if I use the vacuum, mop floors or do any lifting (opening the windows, pulling a patient chart at work etc) I swell).So far it is not bad but I have been waiting for over a month for the appt. Have plane tickets for the end of July so I am keeping my fingers crossed that the PT can help me at least keep the swelling under control. I cannot wear bras that I wore comfortably before my lumpectomy as I am at least a cup size larger (on the side of the surgery) when it swells.I registered for three of the top NYC hospitals for lymphedema PT services in late May. Only one site could give me an appt. I was wait listed by the other two and told that at the end of the summer they might have an opening.My appt is on Friday. Hoping for news that this can be managed more easily than I am hearing.
    Hugs,K

    Good luck, Kay
    I sure hope they get this resolved and have good news for you. I hate that "waiting list" stuff! Good luck with your Friday appointment.
  • New Flower
    New Flower Member Posts: 4,294
    #10
    natly15 said:

    Thanks for sharing this
    Thanks for sharing this info. I sure hope for your sake that it is not lymphedema. Please keep us posted.

    Cindy
    I hope you will get assistance and your lymphedema will be under control. I have been dealing with lymphedema in my arm. I like my therapist, so if you are interested I can give you references in Los Angeles via PM.
    Wishing you easy treatment and your pain and swelling goes away.
    New Flower
  • New Flower
    New Flower Member Posts: 4,294
    #11
    TraciInLA said:

    You just have to be the exception, don't you?
    Cindy -

    You only had 1 lymph node removed, and they're thinking this is lymphedema?

    I had 3 nodes removed on one side and 4 on the other, and all my doctors have told me I'm at extremely low risk for lymphedema....so you just have to be the "exception," don't you? :-)

    I hope the therapist is able to help -- please keep us posted!

    Traci

    side effects
    doctors never admit that treatments could cause it
  • washoegal
    washoegal Member Posts: 45
    #12
    breast swelling
    So sorry you are experiencing this. It is a pain! I had all my lymph nodes removed under right arm in March 2010 and in April my breast turned bright red and swelled about a cup size larger. Freaked me out at first. ONC said it should resolve itself. Advice was just to wear a really good bra and wear it all the time I was awake. It took two months but it did go away. Still have lump and bumps on the trunk which I understand can last for 8-9 months but I can live with that I suppose.

    P.S. Since I needed a different size Bra temporarily I found Platex 18 hour had really good support at a good price.
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #13
    washoegal said:

    breast swelling
    So sorry you are experiencing this. It is a pain! I had all my lymph nodes removed under right arm in March 2010 and in April my breast turned bright red and swelled about a cup size larger. Freaked me out at first. ONC said it should resolve itself. Advice was just to wear a really good bra and wear it all the time I was awake. It took two months but it did go away. Still have lump and bumps on the trunk which I understand can last for 8-9 months but I can live with that I suppose.

    P.S. Since I needed a different size Bra temporarily I found Platex 18 hour had really good support at a good price.

    What ..??? Things that we find out - Thank you for
    sharing :-)) Sorry, about your experience.

    Washoegal: My right (non-cancer) breast swelled up after vacation - 1 size, bight red - 103.5 fever - and ended up with staph infection, 5 day hospital stay and emergency surgery to remove my expander ... wow ..

    We all go thru suck .. hell!

    Love and Strength to you All:



    Vicki Sam
  • KayNYC
    KayNYC Member Posts: 495 Member
    #14
    Christine Louise said:

    Good luck, Kay
    I sure hope they get this resolved and have good news for you. I hate that "waiting list" stuff! Good luck with your Friday appointment.

    Hoping for good news
    I booked my vacation for July 23- 29. With the extreme heat this week I have some swelling in the upper arm and breast but no heat or redness. Today I started with blurred vision and called the NP who works with my Med Onc. I am using one of the artificial tear solutions for dry eye, hoping that is what is causing it. If it does not resolve tomorrow, the NP wants me to go off the Arimidex for a few days to see if it resolves. I am wondering if I have occular edema that is causing the blurry vision? I am calling my eye doc to find out what he thinks and go in if he thinks it necessary to be examined.
    K
  • Kylez
    Kylez Member Posts: 3,761 Member
    #15
    natly15 said:

    Thanks for sharing this
    Thanks for sharing this info. I sure hope for your sake that it is not lymphedema. Please keep us posted.

    I never knew this Cindy!
    I never knew this Cindy! Thanks for posting it for us. Good luck to you!
  • Alexis F
    Alexis F Member Posts: 3,598
    #16
    missrenee said:

    I've had swelling since my surgery
    Had 2 surgeries in Dec. '09 with lumpectomy, revision for margins and 23 nodes removed. I had numbness for months (still have some) and swelling. My breast and down the side along my rib cage is where the swelling is. My arm is still okay. I finished chemo in May and am on the 3rd week of rads. My friend is an OT and has friends who are lymph specialists. I started seeing a therapist last week and I hope it helps. When I asked the surgeon and rad. onc. about this, they just seemed to think it was a normal post-op situation and didn't really seem too bothered about it and really offered no suggestions. I really like and trust my doctors, but I've heard from others, once the docs do their part, they kind of feel like they're basically done. Also, after reading info on the cancer sites, it seems the U.S. is far behind other countries in the research and treatment of lymphedema. It really helps to be your own health advocate!

    Good luck to all you ladies with the pain and swelling.
    Renee

    I wasn't aware of this
    I wasn't aware of this either. I am lucky that I don't have lymphedema.


    Good luck to all of you that have to deal with it!
  • KayNYC
    KayNYC Member Posts: 495 Member
    #17
    Christine Louise said:

    Good luck, Kay
    I sure hope they get this resolved and have good news for you. I hate that "waiting list" stuff! Good luck with your Friday appointment.

    Saw the PT Friday
    Went to see the PT and she demonstrated the drainage/massage technique that I will have to do daily. She reviewed skin care, did my measurments and advised me that my LE is mild. She recommended a compression sleeve of 15-20. Didn't think this was going to be so time consuming to get the sleeve however it appears that there are few experienced "fitters." She stressed the importance of proper fit and strongly urged against buying one from a surgical supply that did not have an experienced fitter. She suggested one fitter that she "trusts" to do a good job of measuring. She also warned me that it might be necessary for it to be customed made and ordered if I my memasurements do not fall into their size range. Unfortunately,this supplier is located down and across town making this a subway and bus journey for me on a very full work day. I checked with at least 4 NPs in the Oncology Center and no one had an updated list of surgical suppliers in the area with a trained fitter. This was so hard to beieve since LE is not rare in BC survivors.
    I will meet with the fitter on Tuesday morning and pick up the prescription for the sleeve on Monday after I see my Rad Onc for my first month follow-up visit.I am planning to have him give me a script for an additional sleeve to order online directly from the manufacturer. There seems to be more colors and styles online with a greater range of prices than in the stores.
    By the way, the massage technique appears to be helping. I am less puffy under the arm.She advised I be fitted with an LE bra at some point. I will have to go to another CA treatment center for the measurements and purchase of the bra. Looks like I will be ready for a vacation after I finally finish all these fittings, appointments etc.
    Hugs, K

Discussion Boards