Hi, I’ve developed lymphoedema in my breast and have been referred to my local lymphoedema team. I was a bit shocked by this diagnosis, as I thought the increased risk of this was if I had a lot of lymph nodes removed or had radiotherapy to the underarm area. Neither of these applied to me. I had a sentinel node biopsy, which was clear, at the same time as a lumpectomy and radiotherapy to the breast only. It seems fairly mild but it’s quite itchy and sore. I’m dreading having a mammogram in a couple of months time. Has anyone else had a mammogram with breast lymphoedema and was it straightforward? I was also wondering if there was a chance that it would spread to my arm? Thanks for any replies xx
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I also developed lymphedema in my breast following SLNB last May.
It hasnt spread to my arm yet and i had my first mammogram a couple of months ago, it was okay, just a little uncomfortable but i took some painkillers a couple of hours beforehand.
I hope you go on okay, i had scanxiety and the waiting for the results is the worst x
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Hi, thanks for your reply. I haven’t seen the lymphoedema team yet as it’s not urgent and not bothering me hugely. Have you been told it will spread?
The thought of having the mammogram has been bothering me for a while because I’ve still got soreness in my breast, numbness under my arm and painful spots on my ribs. I’m glad your’s was ok.
As you say, I agree that the wait will be the worst bit. Hope your results were ok. X
Hi Celie1,
I had a mastectomy with diep reconstruction in Oct 22. I was referred to the lymphoedema team in Dec 23 by the BC team. I initially went into to see the BC nurse as I was concerned about an area on my breast, not even thinking about lymphoedema, however my breast did feel heavier in the bottom quadrant but I thought that was normal with a reconstruction. The lymphoedema is in the breast area only, I still have numbness in the breast and underarm, the shooting pains have lessened though.
I have had laser oscillation therapy and hivamat to reduce the swelling, they have also done dry cupping treatment too.
The treatments have made some difference to the swelling but not a huge amount
I am doing self lymphatic drainage daily, wearing a good support bra, keeping the breast moisturised on a daily basis. I have also paid for private lymphatic drainage.
I was really upset when they told me I had lymphoedema as I felt I had been through enough with the mastectomy. 7 months on I’m in a better place, more accepting of the situation and trying to manage it the best I can. That’s all one can do!
I had my mammogram last week and it was to the unaffected breast so was ok.
Take care x
Hi Sab,
Thank you for replying and for sharing your experience.
It’s so unfair to get lymphoedema on top of a mastectomy.
I have numbness too and had cording and rib/shoulder pain. I had to pay privately for a physio because there was an 11 month waiting list for a NHS physio. I felt really let down at the time, but my physio has been really good so I’m glad I found her. Now this lymphoedema has started, I’m worried about what this means for the future. At the moment it’s fairly mild I think. I’ve got thick ridges of skin under my breast and my nipple feels leathery. The consultant explained it was fluid that wasn’t being moved out of my breast and that the swelling was causing stretch marks. I posted here a few weeks ago, thinking the stretch marks were hormonal and to do with the Anastrozole and was advised to see my BCN by a few people, which I did. So I was a bit shocked to find out what it actually was and was concerned about having the mammogram in a couple of months.
Thanks again. Hope everything works out ok for you x
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Hi Celie1,
Yes it’s unfair having been through so much already, but it’s something that is out of our control and we can’t do anything about it. I have shifted my mindset now and so I’m focusing on the things that are within my control, so yes I had BC, I’ve had surgery, radiotherapy and am on tamoxifen, the added bonus was lymphoedema. I can’t change the past 2 years but I can carry on trying to do what is within my control to manage my condition and situation.
I too felt so down and upset when they told me I had lymphoedema, and even more when they told me it can’t be cured. 8 months on I feel ok about it. I’m doing self lymphatic drainage to try to stop the fluid building up. I too have hardened ridges in the bottom of my breast in the right quadrant. I am going to start booking in for a monthly session with someone who does lymphatic drainage as I think this will help too. We soldier on! Hang in there and if you need anything pls message.
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You sound very positive now 
. I think once it’s happened you just have to try to be philosophical (once the shock has died down 
)
I will thank you. Take care xx
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Hi ladies,
I realise this thread is from last year.
I do think I am developing this in my breast. I had a check up a couple of months ago and they did say I had a build up of fluid in my breast and to massage it up and over to the other side to drain. I also have the ridges all down the side and underneath of my breast and it is only slightly painful.
I may ask about seeing the lymphodema team. I had only 3 sentinel nodes removed and 2 of these were in my breast, so it makes sense that the fluid is not draining.
I found the lymphoedema nurse to be very helpful, I would recommend asking for a referral.
Hello,
I also developed lymphoedema plus cording in my breast,about 8 months after my lumpectomy and radiotherapy.
I had swelling and discomfort in my breast and went to see my breast care nurse. I also had what I thought were stretch marks but it was like orange peel skin. I was referred to my local lymphoedema clinic where I was also found to have cellulitis. They gave me helpful advice about the condition and showed me how to self massage twice a day, they also gave me some soft, but bumpy foam inserts for my bra. This is to massage the stagnant lymph and move it out of the breast. I had a couple of sessions where the nurse used a machine to soften the tissues and help with drainage. The. Nurse also asked my doctor to supply ‘Doublebase gel’ which I need to apply once a day. This protects the skin, as with lymphoedema you are at risk of developing cellulitis.
At the time I also found a good physio who had experience of the effects of post cancer treatment and she helped to soften the area with massage too.
Hopefully there is a lymphoedema clinic you can be referred to. I developed this even though I only had one sentinel node removed. Even though mine is fairly mild, I have to carry a medical alert card from the LSN because of the increased risk of cellulitis.
I don’t have any problem with it now as long as I do the massage etc. it’s really no bother and hasn’t gone into my arm. If I were you I would ask to be referred to a lymphoedema clinic where they can assess you and provide you with the appropriate treatment.
The other thing to be aware of is to have blood tests, injections and blood pressure cuffs in the unaffected side if possible.
Hope that’s helped. Good luck 
x
Hi, thank you for your reply, it is really helpful. I will ring the breast care nurses today and see if I can get a referral. x
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Hi, not sure if there’s a more recent thread on breast lymphoedema but it’s so difficult to navigate, I’ll quit while I’m ahead.
I only had one sentinel node removed with my lumpectomy but whole breast radiotherapy as partial, although apparently appropriate, wasn’t available as I could do the breath hold. Having looked quite ok post op I’m now looking very odd / a bit ridiculous.
No reply to helplines or local lymphoedema specialists and NHS waiting list is as pointless as waiting for a Dexa scan.
So, who can I contact for help with breast and arm lymphoedema in Cardiff? I have no patience for self lymphatic drainage as seen in very old YouTube videos. It doesn’t work. It’s a waste of time.
I’m sleeping on my back with my arm elevated but it’s a poor quality way to sleep.
Is there a Maggie’s centre near you who could advise?
Also get back to your breast cancer nurse and explain you need a referral to the lymphoedema clinic as they often have a quick access route.
Hi, thanks for replying. It was the breast cancer nurse who referred me. I’ve had the initial phone conversation and the wait for a clinic appointment is months away.
Are there any videos on line that might help?
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I’ve not gone looking for any so I don’t know.
Have you tried a private physio? I noticed that Cardiff has a lymphatic centre who might be useful.
Hi, I looked specifically for a thread on lymphoedema; it’s comforting to see others and their challenges and comments (of course I wish none of you had to deal with it!)
I popped to the GP mid week last week, short story, I’ve suspected lymphoedema close to the sites of my breast and lung surgery (9 months and 6 months ago) and radio in the breast 4 months ago). The GP and I decided that as I had a blood test already in the diary (yesterday in prep for the next cycle of ribociclib) and also have my first post surgical monitoring scan later this month, it would be of no benefit to organise any others 
.
I mentioned it to my nurse when I spoke to her (to chase the scan date), she simply said ‘oh’ and didn’t explore it any further .
I can ret my arm in its natural position, can’t sleep comfortably, don’t have full natural movement in my shoulder; feel restriction when I breathe deeply (some of that is because of the lung surgery).
I emailed the Lymohoedema clinical service at my most local resource over the weekend and so wait patiently for a response.
Just wanted to ‘get it off my test’ to others that understand. I’m tearful all the time (not enough good quality sleep) have mildly irritating constant aching.
I work full time am single provider at home l, feel unable to reduce work (for me financially) and that the business I work for is not in the greatest of financial health.
My partner (lives an hour away with his kids…and yes we are making movement towards being in a single household, spurred on by my health really), but just now I don’t really tell anyone the whole story…
When I feel a constant ache, I’m reminded of what I’m ‘living with’, then I feel guilt as there are those that are much worse off than I, and in the SBC circles that is especially true.
So it’s just an off-load really, I’m doing everything I can to live it forwards, just feel a little low xx
Hello @2ndtimeve
You have my sympathy. It sounds like you are having to cope with an awful lot.
I also have found that the knowledge and provision for diagnosing/treating lymphoedema is sorely lacking. I had a left breast lumpectomy and nipple/areola reconstruction plus axillary lymph node clearance 4 months ago and have been having increasing localised discomfort / tightness especially at the end of the day, over the last several weeks. I emailed my breast care nurse initially and when I had no response I emailed the head CNS who oversees the team of breast care nurses but had no response from her either. So then I called the team and spoke to what I think must have been a junior nurse because she had to keep asking for advice from one of the other breast care nurses. I was told to keep doing my exercises, take paracetamol and call back in 2-3 weeks if I still had a problem but all they would be able to do is refer me to a physiotherapist. I know that the waiting list to see the physio is months long at my NHS Trust (they told us that at a “pre-surgery group” session and also said that it’s “usually the ladies who don’t do their exercises that get lymphoedema” ( no judgement !!!)
It’s not the first time I’ve been fobbed off by our breast care nurses during my treatment journey and it is upsetting (I also cried tears of frustration after that call) when you are made to feel that you are just being a nuisance and your pain is not being addressed. The lack of sleep because of the discomfort just makes the situation worse too.
It’s good that this forum exists to allow us to get things off our chest to people who really do understand and I hope that your scans give you some answers and treatment soon 
xx
Sending hugs.
If funds permit maybe book yourself in for a lymphatic drainage massage to see if that helps. Our sports massage clinic does them and the local private physio
So sorry to hear of your frustrations, and certainly to be ‘judged’ without reason is shameful!
Each day sometimes brings new challenges, and I always reflect that there are others with life limiting disease that are too ‘managing’.
Thank you for your reply…wishing you continued strength
Thank you, finding is not an option just now, so I’ll continue to be my own advocate…
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