lymphedema...increases with Rads?

cavediver
cavediver Member Posts: 607
edited March 2014 in Breast Cancer #1
Well, the rad consulation meeting did not offer much info....just know I will start the scan and x-rays next week to start the process. Dr. did not wish to give me any info on creams...said when we started she would give me something then! but.... she did say that the rads might likely increase the lymphedema I have! Wow, I did not realized that...I am guessing that when they do rads on lymph nodes, they may damage more? She was not too talkative, and I was tired after waiting 1.5 hours for her to start the appt.!!!! So....any suggesions from you lymphedema sisters on what I can do to prepare skin for rads?
I am sending hubby to buy some man t-shirts....... Cancer...lymphedema...the gift that keeps on giving!!!!!

Comments

  • missrenee
    missrenee Member Posts: 2,136 Member
    #2
    Don't you just love it!
    My rad. onc. is one of the top docs in our city, but same type of interaction with him. I finished with my 33 rad treatments in July. I used mainly Eucerin (sp) and 100% aloe gel. I did not like the Aquaphor--too greasy for me. Toward the end (last week or so) I got bright red in two places--one near my clavicle and the other near my surgery site. I never blistered and it was not really a big problem.

    I had 23 lymph nodes removed, so I've always had a bit of swelling since my surgery in Dec. '09. The swelling is mainly in my breast (had a lumpectomy) and along my rib cage on that side (trunk). It has gotten progressively worst since the chemo and rads, so I'm assuming it probably did contribute to it. It's puffy and hurts, but not hugely swollen. I flew for the first time last weekend, so I wore a compression sleeve and glove and did very well. Yesterday, I went to a local cancer center and purchased two special sports bras that come up higher than the normal--so they cover up to my underarm. All in all, if things stay as they are, I can deal with it. My surgeon said this would probably be a life-long thing off and on. However, neither my surgeon, oncologist nor rad. onc. had much advice. The lymphedema therapists know more than anyone. I've been seeing one twice a week--helps some but does not take it away. I'm doing the exercises recommended and the massage technique they showed me. Do you have a therapist who specializes in lymphedema? It might help you.

    Good luck with the rads. Seems like it'll take forever, but honestly, time does march by. Hope this helps.

    Hugs, Renee
  • cavediver
    cavediver Member Posts: 607
    #3
    missrenee said:

    Don't you just love it!
    My rad. onc. is one of the top docs in our city, but same type of interaction with him. I finished with my 33 rad treatments in July. I used mainly Eucerin (sp) and 100% aloe gel. I did not like the Aquaphor--too greasy for me. Toward the end (last week or so) I got bright red in two places--one near my clavicle and the other near my surgery site. I never blistered and it was not really a big problem.

    I had 23 lymph nodes removed, so I've always had a bit of swelling since my surgery in Dec. '09. The swelling is mainly in my breast (had a lumpectomy) and along my rib cage on that side (trunk). It has gotten progressively worst since the chemo and rads, so I'm assuming it probably did contribute to it. It's puffy and hurts, but not hugely swollen. I flew for the first time last weekend, so I wore a compression sleeve and glove and did very well. Yesterday, I went to a local cancer center and purchased two special sports bras that come up higher than the normal--so they cover up to my underarm. All in all, if things stay as they are, I can deal with it. My surgeon said this would probably be a life-long thing off and on. However, neither my surgeon, oncologist nor rad. onc. had much advice. The lymphedema therapists know more than anyone. I've been seeing one twice a week--helps some but does not take it away. I'm doing the exercises recommended and the massage technique they showed me. Do you have a therapist who specializes in lymphedema? It might help you.

    Good luck with the rads. Seems like it'll take forever, but honestly, time does march by. Hope this helps.

    Hugs, Renee

    problem locating a lynph.specialist
    There seems to be only 2 lymph.spec in my area...only one is covered by my insurance...and he is strange! Been over two weeks and he has still not gotten me a glove!
    So, I hace little confidence in him. With the rads in the north direction.........the next rad specialist is way south.......so not sure how/when I can schedule. LIfe goes on.. I will get the done............I will hope for not much burning and get some aloe.........appreciate your help
  • greyhoundluvr
    greyhoundluvr Member Posts: 402
    #4
    CaveDiver -
    I just finished a couple of weeks ago and used several different concoctions. My radiation oncologist was great and said that there really wasn't any benefit to starting ointments early but I figured the better shape my skin was in, it couldn't hurt. I used just regular ointment (Cetaphil) before. Once I started radiation, I used ALRA lotion which is made specifically for radiation therapy. They had me mix benadry cream and hydrocortisone cream for itching (which is apparently worse where in areas that may already be sun damaged). I did get some skin breakdown in the lymph node area and used the Aquaphor then. My understanding is that radiation can increase the probability of getting lymphedema or the severity. The facility I was in had us do a visit with the lymphedema specialist so we would already be trained and in the system if we ran into problems. I hope the rads goes well for you!

    Chris
  • KayNYC
    KayNYC Member Posts: 495 Member
    #5
    Lymphedema sister
    Yes, the radiation did increase my lymphedema. That was when I got the referral to see my OT for my evaluation and treatment. It is now well under control and it did get much better over the weeks since my radiation treatments ended in early June.
    I was given Hydrophor, same as Aquaphor cream. I applied it after my treatments in addition to 100% Aloe vera gel. My radiation team provided me with the Hydrophor and approved of the use of the 100% aloe gel. They later also gave me Hydrocortisone cream during the week of Boosts when I developed itching under my breast. I continue to use the Aquaphor daily and the skin is in great condition. I have developed some tenderness within the field of the radiation below my armpit and across from the breast. My surgeon looked at it and didn' t feel it was more than late radiation effects that can occur months later. I have my ultraound and mammo (six month check up) scheduled at the end of this month.
    They will no doubt provide you with all necesary information on skin care. I found Dove soap (I used the shea butter and white bar soap) to be gentle on my skin and avoided the use of hot water in the shower (will increase the lymphedema and further increase the dryness).I also washed my camisoles in mild detergent( no perfumes or bleach ) and by hand to avoid irritating my skin during rads.
    Hope this is helpful. Keep me posted...best of luck with rads.
    Hugs, K
  • RE
    RE Member Posts: 4,591 Member
    #6
    I too used the pure Aloe
    I too used the pure Aloe Vera gel as well as Swine creme which helped quite a bit with discomfort from burning. I had a total of 16 weeks (in a year period) of daily rads (weekends off as well as a few other breaks) and yes it did bolster my lymphedema. I was aware that it was a very real probability which I agreed to since my cancer had returned so quickly. I do not know if you arm is painful, if it is and it is swelling you should have a sleeve. Below are two links, one to the site where I get my arm sleeves. If you go to the lower left hand side there is an area to click on that will lead you to a page that shows you how to measure your arm to allow for a proper fit. The second link is to a very good site regarding lymphedema. In regards to your rad doctors briefness perhaps on your next visit you could prepare a list of questions and tell her/him that you need answers to these concerns, that would make it clear that you are needing a bit more of their time. Hope this has helped, my best to you!

    LYMPHEDEMA SLEEVES

    lymphedema info

    (¯`v´¯)
    .`•.¸.•´
    ¸.•´¸.•´¨) ¸.•*¨)
    (¸.•´ (¸.•´ .•´ ¸¸.•¨¯`•.•..•¨*RE
  • shy violet
    shy violet Member Posts: 167
    #7
    on my first dx I moved out
    on my first dx I moved out of state to avoid rad...i know bad idea...but I was that scared...anyway after Cancer came back I did the rad...my onc rad dr is a Dr Nancy Snyderman super tv doc wannabe...anyway she was weird too...always spoke to the mirror behind my head...
    Back on topic HYDRATE lots lots lots...I burned with the Aquaphor...they gave me lanolin to slather on a lot during the day...felt like I was a walking bucket of snot...sorry but true...ruined my clothes and bedsheets and pillows...but be sure to stay greased up...
    I am very high risk now with rad and bc twice...but I am ok still...just follow after care instructions about not carrying heavy items on that side etc...we are all different so hard to say...just to let you know it doesn't automatically mean you will get lymphedema...
    Rads are important...everything we do on this journey has the possssibility of side effects...
  • carkris
    carkris Member Posts: 4,553 Member
    #8
    shy violet said:

    on my first dx I moved out
    on my first dx I moved out of state to avoid rad...i know bad idea...but I was that scared...anyway after Cancer came back I did the rad...my onc rad dr is a Dr Nancy Snyderman super tv doc wannabe...anyway she was weird too...always spoke to the mirror behind my head...
    Back on topic HYDRATE lots lots lots...I burned with the Aquaphor...they gave me lanolin to slather on a lot during the day...felt like I was a walking bucket of snot...sorry but true...ruined my clothes and bedsheets and pillows...but be sure to stay greased up...
    I am very high risk now with rad and bc twice...but I am ok still...just follow after care instructions about not carrying heavy items on that side etc...we are all different so hard to say...just to let you know it doesn't automatically mean you will get lymphedema...
    Rads are important...everything we do on this journey has the possssibility of side effects...

    I have had chest rads on
    I have had chest rads on both sides and no lymphedema, I did pre moisturize with aquaphor. some docs dont want you to, they want to see what happens. I did not subscribe to this theory (my doc did not care) and did very well. I continue to moisturize as my chest gets very tight. I use shea butter. I have also heard that some docs prefer only certain creams for mastectomy vs lumpectomy. anyway good luck, hope it goes well.
  • Sunrae
    Sunrae Member Posts: 808
    #9
    carkris said:

    I have had chest rads on
    I have had chest rads on both sides and no lymphedema, I did pre moisturize with aquaphor. some docs dont want you to, they want to see what happens. I did not subscribe to this theory (my doc did not care) and did very well. I continue to moisturize as my chest gets very tight. I use shea butter. I have also heard that some docs prefer only certain creams for mastectomy vs lumpectomy. anyway good luck, hope it goes well.

    Hi Cavediver, I just had my
    Hi Cavediver, I just had my 8th rad treatment today and will have a total of 35 altogether. My rad onc gave me an cream called "DimethiCreme" and the #2 ingredient listed is aloe vera. Its not real greasy and I only put it on once a day. I'm starting to get a little pink and may have to put the cream on more often. My onc will give me all I need so I don't have to purchase any creams for now. I had a masectomy so I may be using a different cream from those who have had lumpectomies. I developed lymphedema while I was in chemo so I wear a compression sleeve and glove most of the time. It does seem like it has swollen more in the last few days. I have an appt. with my therapist on Friday to see if it has gotten worse and maybe learn more on how to deal with it. I had to go to a medical specialist store to find the compression sleeve and glove and it is kind of expensive, but a necessity. Best wishes to you and hope things go better for you.
  • ladyg
    ladyg Member Posts: 1,577
    #10
    My lymphodema did
    not get any worse during rads. I did see a lymphodema therapist twice befoe I started and she showed my husband how to do the massages. He did them every night and still does. I am sure that is helping keep mine from getting any worse. I also wear my sleeve during the day if I am going to be active.
    As far as keeping up my skin I got Calendula Gel to use after each treatment. I liked it because it was not greasy. I also used Aquaphor at night. You do not want to put anything on at least 4 hrs. prior to treatment.
    Hope this is helpful.

    Hugs
    Georgia
  • New Flower
    New Flower Member Posts: 4,294
    #11
    ladyg said:

    My lymphodema did
    not get any worse during rads. I did see a lymphodema therapist twice befoe I started and she showed my husband how to do the massages. He did them every night and still does. I am sure that is helping keep mine from getting any worse. I also wear my sleeve during the day if I am going to be active.
    As far as keeping up my skin I got Calendula Gel to use after each treatment. I liked it because it was not greasy. I also used Aquaphor at night. You do not want to put anything on at least 4 hrs. prior to treatment.
    Hope this is helpful.

    Hugs
    Georgia

    Yes
    During radiation My swelling became worse and I was officially diagnosed with lymphedema. I had 21 nodes removed 10 positive. My advice: drink a lot of water, wear appropriate size compression sleeve and glove, identify lymphedema therapist and start treatment as soon as you you conditions become worse. In my case they radiated under armpit, so whatever lymph vessel were left was burned.
    I wish I have better suggestion.
    Good luck with radiation
    New Flower
  • DebbyM
    DebbyM Member Posts: 3,289 Member
    #12
    carkris said:

    I have had chest rads on
    I have had chest rads on both sides and no lymphedema, I did pre moisturize with aquaphor. some docs dont want you to, they want to see what happens. I did not subscribe to this theory (my doc did not care) and did very well. I continue to moisturize as my chest gets very tight. I use shea butter. I have also heard that some docs prefer only certain creams for mastectomy vs lumpectomy. anyway good luck, hope it goes well.

    I don't have lymphedema and
    I don't have lymphedema and I had rads. I don't think rads have anything to do with that. That is your node removal that causes lymphedema, I think.

    I used my lotions from the very start, aquaphor and biafine and my skin looks like baby's skin and feels like it too.

    Good luck!

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