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.
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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