Is there anyone who has BL only i.e without any symptoms on the arm. Ive just been recently diagnosed. Been on 2 courses of antibiotics already. Wearing tape and compression garment. Also attending clinic for drainage on a weekly basis. Im not on any meds for the BC as it was triple negative. Had chemo and rads though. xx
Hi,
I’m replying because no one else has. I have got lymphoedema only in the breast and trunk. They say it’s the radiotherapy that did it. I had treatment in 2008 in Germany. It was a year before I found out I needed treatment. It was easy to get lymphatic drainage there but I hated the thought of having it. I still have it once a week, back in the UK now. If I don’t have MLD, the lymph hardens and it gets painful and takes a long time to recover. It seems I need more treatment of the breast itself where it gets hard than treatment around the underarm or groin where the lymph should flow away. The breast is still red but fortunately neither itchy nor painful, at least some of the time it gets itchy. I really must do more self lymphatic drainage but anyway, it is OK at the moment and above all I have got used to it. I was so angry when I realized I may need treatment for the rest of my life - I knew nothing about these after-effects of treatment.
I did go to a lymph clinic in Germany for three weeks once. They tried kinesiotype there but I have not kept it up. I have never had a compression garment either, because there is no easy solution. One thing I do use is a kind of foam rubber sheet with indentations which I cut to size and wear in my bra - it gives a bit of massage. It is called Komprex II and here is a picture on a German site:
apo-rot.de/details/komprex-ii-schaumstoffplatte-65x65-cm/2006722.html
Maybe you can find a therapist who can get it for you.
Many thanks Zeppa for replying to me and sending me the link. I have now been diagnosed with cording in my arm which is very sore. Cancer really is the gift that keeps on giving!!! I had no idea either that there could be so many side effects years later. Im struggling with the physio for the cording. I nearly fainted with the pain today. xx
Today I was told I have some lymphodema in my breast. It has been swollen and painful since radiotherapy last November. I am being referred to our local specialist clinic. Hoping that it can be sorted with some exercises. I don’t have any arm symptoms at present. I am on hormonal treatment, did not have chemo. Not sure this is of any help, except you are not on your own
Hi Torquay, sorry to hear that you have been diagnosed with lymphoedema but pleased you are eventually getting treatment. I was back and forth for 7 months before I was diagnosed. I have also developed cording in my arm which is extremely painful when getting physio. I hope you see the specialist soon and hopefully will hear from you again. xx
Hi Torquay. Glad to hear you are making progress in getting treatment. Really pleased for you. Unfortunately since my last post I have had a reoccurence of my cancer. It has spread to my lymph nodes in neck and arm. And also in my breast bone. It is treatable but inoperable. I have 11 chemo sessions scheduled. I am still in a state of shock just now as I had been getting checked regularly during my lymphoedema treatment. It is triple negative again.
Hello Both. I have also been diagnosed with lymphoedema in the breast but not the arm. I also have quite a lot of swelling in my armpit where I had a seroma (which was drained) during radiotherapy. I finished my radiotherapy in September and initially I did not have any swelling but over one weekend in November my breast swelled up massively and ended up in hospital with cellulitis and had to have intravenous antibiotics to clear it up. I therefore got a very quick appointment with lymphoedema clinic in December. I guess I was lucky, judging from your stories, to get seen so soon. I have a compression bra and will shortly be starting MLD and kinesio taping. I have a lot of pain with it. I also had chemo and rads and am on herceptin as it was HER2 positive. I have been struggling with the compression bra as it does not fit very well -I am slightly built with big breasts and it’s massive on the shoulders. I think I have found someone who can alter it for me though. Sorry to hear about the recording. Don’t we poor ladies have to go through a lot.
Love and Hugs Amero xx
I finish my last chemo T on the 22nd. I had an ultrasound this week and was told that the lymph nodes have shrunk as had the lump in my breast. I am due to see my surgeon next week to discuss surgery whch includes removal of all lymph nodes. I am terrified of getting lymphoedema. Has anyone or did anyone ever discuss not having the nodes removed, also if they are not all affected or have shrunk considerably why do we have to have them all out. I have spoken to my nurse about this but they dont seem to understand how I feel.
Would I be silly to refuse or to just ask for the infected ones to be removed. We have breast cancer, are going through hell, think there is light at the end of the tunnel only to end up with a life long condition and to be honest what sounds like a poor quality of life.
They admit more research needs to be done but that doesn’t help us now.
Any thoughts gratefully received.
Regards Dilys x
Hello Dilys. I really hope you are not put off surgery because of stories like mine. Lymphoedema is manageable even if you are unlucky enough to get it. I posted before when it was really bad, but with treatment I have already seen an improvement -I think it’s important to catch it early and get treatment before it gets bad. I also think the exercises they ask you to do are really important. I didn’t get lymphoedema until some time after surgery and radiotherapy when I had stopped doing the exercises. It’s also very important not to carry anything heavy like shopping bags on the surgery side. I think what did it for me, saying that, was my very large breasts (32GG) as it tends to collect naturally in large heavy breasts. I also found it very difficult to get supportive bras in the right size without the underwire and that’s what you need to avoid breast lymphoedema as its the gravity that gets you! If you take the right measures then I think you would be very unlucky to get it. I hope your surgery goes well. Love Amero xxx
Hi Kary. I was diagnosed with breast lymphoedema post radiotherapy but I also had seromas after surgery and cellulitis during RT, both of which could have been factors, and a bad skin reaction to RT. Once things had calmed down, I had 15 sessions of manual lymphatic drainage, which really helped, and now I do self LD every day which more or less keeps things in check. Keep asking questions and insist you get what you need. Best wishes.
Check out mlduk.org.uk. Also, i’ll direct message you with more info.