Hi everyone
6 months on from having lumpectomy and condensed radiotherapy I have seen my breast surgeon who has diagnosed lymphoedema in my affected breast. I’m feeling really depressed about this. I’m in pain, my breast is heavy, hot, feels very lumpy and abnormal. Surgeon referring me onto lymphoedema clinic but advised doubtful they can do much. The surgeon said it’s one of the worst cases she’s seen.
So I’m mentally and physically struggling. On top of this I’m suffering a lot of joint pain from taking letrazole. I’m bringing everyone around me down and they don’t seem to understand what I’m going through. I’ve never been a pessimist but feel like giving up! I feel so down.
Anyone went through same thing and any advice as what to expect at lymphoedema clinic?
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Hi there,
Really sorry to hear you are having to deal with this. I too developed breast lymphoedema following lumpectomy, sentinel lymph node biopsy and condensed radiotherapy. I was told during treatment that I was very unlikely to get lymphoedema but they had to tell me about it just in case. In fact I was only told about arm lymphoedema so I was completely unprepared for my boob to swell up as I recovered from surgery.
Eventually I was referred to my local lymphoedema service which has been absolutely fantastic. At my first appointment the nurse examined me and told me what the plan was which was what is called manual lymphatic drainage- a type of very gentle massage. I saw her very regularly initially as I learnt to do this on myself. It took some time, but finally the fluid started to move ( some discomfort and copious wees!). I now do this massage on myself everyday which keeps the lymphoedema manageable. Although I am not being seen regularly by the service at present, I can get in touch anytime to ask to be seen. I am still a bit swollen but not very noticeably when I am clothed. I also wear a sports bra in the day time which, because it is tight, helps to manage the swelling. I wear a looser bra at night. For along time I could not lie on that side in bed but I can now. I would say that it can take a bit of time to get an improvement, you will need to persist, but improvement is possible. You will also be given advice about lifestyle changes that can help including keeping physically active. I have joined a choir set up by the service as deep breathing involved in singing can help. I do a lot of yoga as well which is good for the breathing and stretching. Swimming is also recommended, although I haven’t managed to get back to the pool yet. One of the most important aspects of my treatment has been meeting other people with this condition- I found out that I was not alone which was hugely important. I also joined the Lymphoedema Support Network (lymphoedema.org). There is a small subscription but you get regular newsletters as well as really helpful information leaflets.
I hope this helps. Do let us know how you get on and I am happy to try and answer any other questions you have.
Rannie x
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@Rannie
Like you, I was all clued up for lymphoedema in my arm after SNB but appeared to have avoided it. Then this week in a surgical review the surgeon said I have it in my breast and need to be referred to lymphoedema clinic. I finished rads in Jan and thought I was doing ok so a real downer to find there is one more thing to deal with.
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Thank you for posting this.
I some swelling in both boobs and to the side, making wearing a bra quite uncomfortable. I had surgery in July (bi lateral lumpectomy), chemo with Herceptin (til Sep 24), 5 days higher dose radiotheraphy, Letrozole and Zoledronic acid.
I saw the breast care nurse a few weeks ago, she said it was unusual to see lymphoedema on both sides, but it’s also not usual to have two primary tumours, one in each boob! I was referred to the lymphoedema clinic back in July and not heard a thing. She chased it up and called me this week expecting me to have heard from them. Still nothing. I was advised to use Ibuprofen gel on top of the paracetamol ( originally taking due to chest/rib pain no swelling). I’m at least a bra size bigger than post surgery. Breast care nurse surprised that my boobs had not shrunk.
I can’t sleep on my side or front as it’s too painful and even on my back my boobs hang to the sides. I may have to wear a soft crop top bra to bed again, like post surgery.
I will look into the lymphoedema link, @Rannie thank you. I was advised I was low risk of lymphoedema as my lymph nodes were clear and only had biopsies. No mention of breast lymphoedema.
I do try to keep active, walking, Pilates, yoga and some light weights ( although this seems to make it more painful), stretchy bands.
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Hi there. Sorry to hear about the problems you are having and that it has been getting you down. I also had my surgery 6 months ago too and finished radiotherapy early Feb. My left boob was unbelievably swollen a few hours after surgery due to a haematoma. That took a long time to settle so my radiotherapy got delayed slightly. After that, I have got a swollen boob again. Not as dramatic but is visible and still tender. The BCN team are still telling me it could be normal at this stage and lymphedema is unlikely…but I am not convinced. I have found wearing a more supportive bra during the day and also something at night is definitely helping. I am scared of being told this is lymphedema but at the same time hopeful that it will be manageable if it is. I hope you can get some good support from your team. I did listen to this podcast a few weeks back which was really helpful. It is about lymphedema more generally but there is a section on breast lymphedema. Hope you find it useful. Good luck xxx
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Hello @naughty_boob,
I’m sorry that you are having such a difficult time with your breast lymphoedema. I realise that it is more than two years since I posted my message above and I guess there is kind of good and bad news as to where I am now. My lymphoedema is mainly under good control but I do have a number of issues. Bras are a major challenge. The only bras that provide me with enough support and compression are sports bras. However, aside from the less than flattering shape they give me, they seemed to contribute to the development of cellulitis last year as they don’t allow the skin to breathe. I had to take antibiotics for a year to get rid of the infection and now I have to monitor my skin very closely. I have been trying to source bras that give the right support and are in breathable fabrics but there is nothing that fully addresses my needs-so frustrating. The bras that are breathable do not give enough support and I realised this morning that my lop-sided boobs are more noticeable in summer clothes. I have been investigating making my own bras…
I also still have really significant fatigue, probably in large part due to hormone treatment but I do wonder if the lymphoedema contributes to this…kind of makes sense to me that this might be the case.
Apologies if this all seems a bit negative. What has helped me hugely has been meeting other women with breast lymphoedema through Maggie’s and the local lymphoedema service- just knowing that others are having to deal with this and sharing tips is helpful. Feel free to direct message me, if it would be helpful.
Rannie x
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Hi @blue80, I got my diagnosis of breast lymphoedema about five months after surgery and while we are all different it could be that you do have breast lymphoedema. In my experience of talking to women who had breast conserving treatment, a fairly high proportion do develop breast lymphoedema- not sure that lymphoedema is as unlikely as we are told pre-treatment. However, I do think it helps to have the diagnosis as there are things you can do then to manage your condition. Do feel free to direct message me if it would be helpful.
Rannie x
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Just wanted to mention here that there was some research done fairly recently funded by Breast Cancer Now on women’s experiences of breast lymphoedema. Here is the link to the news story: How we're trying to better understand the experiences of women living with breast or trunk lymphoedema | Breast Cancer Now
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Thanks @Rannie even though your post was over 2 years ago it is still so helpful. I will read the link you posted aswell.
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Thanks for your message. It isn’t bothering me too much right now and my BCN team have told me to be patient. I did have a seroma which will take a while to settle and that doesn’t help. The new bras I have invested in are really helping and I agree that sports bras (whilst not particularly sexy) are really comfortable so I am living in them day to day xxx
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I have Lymphoedema in my breast and armpit. I have had it for over 2x years post radiotherapy . The Community Lympho Team were great. I went to my GP, then saw the Breast Clinic Team and within days was seen by the Lympho Team (Community not hospital as I was over 12x months post op). The Community Team showed me how to self massage, recommended some videos online, they used a machine to break things down/soften the area. I have had cellulitis twice and the first time the Lympho Team were brilliant, second time just GP as the Lympho Team had shared the protocol with me and I knew I had to have antibiotics immediately. Its a heck of a thing to live with, but the 2/3/4 times a day self draining massage does become your friend in this. I hope you have found videos (A US woman called Kelly is good) and advice on this and are now doing the self massage. At its worst I did hourly lymphatic drainage. Drink plenty of water too. I can wholly recommend the Breast-Band from Haddington Health going forward and my Lymph nurse got me my first free as a sample request. Most days now I wear no bra as its the most comfortable. My drainage is a couple of times a day and a way of life for me to keep it under control. Oh and joint pain from Letrozole… ugh don’t get me on that. I am so sorry you are feeling down, it is understandable. I hope you have an appointment or maybe push via a call to the Lympho Team to get seen soon x
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@naturaljazz
I sympathise with you, only having 2 lymph nodes removed it was a shock to get lymphoedema in my breast about 5 months post surgery. Daily SLD has helped and even better using KT tape (which the physio taught me to apply) 5days on and 2 days off really helps to reduce fluid build up.
Good that you’re finding ways to manage it.
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