Does this sound like Lymphoedema?

[LivvyCat]

Hi 👋

I'm worried that I'm getting lymphoedema....

I was treated for triple negative breast cancer in 2019 and had a horrible time with chemo, a lumpectomy with SLNB, a second op to clear the rest of the lymph nodes, and finished with 4 weeks of radiotherapy ending in Jan '20. After the clearance op I had a huge, painful seroma which had to be drained, and the chemo gave me peripheral neuropathy bad enough that I had to miss the final round. Thankfully though, I am still cancer free and coming up to 5 years.

Since treatment I still get some neuropathy in my hands and feet and have had increasing discomfort in my right arm. For a long time I've had achey pain from the middle of my shoulder blade and this has extended around to my armpit and top of my breast. It has got so I can't sleep on that side.

In the last few weeks I've been getting sharp pain in my inside upper arm/armpit and shooting pain down to my hand. The tingling feels worse with a numb feeling in my fingers and my arm feels heavy and weak. I was having trouble driving the other day and can't put my bag on that shoulder anymore. I can't see any swelling anywhere though.

Can I have your thoughts on whether this could be lymphoedema? I'm pretty unfit and have ME/CFS but am doing yoga head & neck stretches. I get confused about what's what! 😵‍💫

Thanks 😊

[Happyrosie]

maybe it is and maybe it isn’t. Or maybe it’s something completely different - if you are in the UK should have a breast cancer nurse to talk to. Otherwise one of the many breast cancer charities.

[LivvyCat in reply to Happyrosie]

Thanks 🙂

[Warrio]

Big big hugs! it possibly could be, were any lymph nodes removed on that side during surgery? In any case I would recommend you call your oncologist and report your symptoms and ask for direction as to who you need to see to resolve the pain/symptoms.

[LivvyCat in reply to Warrio]

Thanks for replying x

[Kruza]

Hey LivvyCat, sorry you are going through a hard time. If any lymph nodes were removed it could be lymphedema. But call your oncologist first so you could be tested. That is the best route although to a lay woman like me who has lymphedema it sounds like it is.

[LivvyCat]

I went to the Maggie's centre at the Royal Marsden and they were super helpful. I got to speak to a nurse straight away and she booked me on a workshop about lymphoedema in a couple of weeks' time where I should get more advice.

I definitely recommend going to Maggie's if there is one near you.

[wackier]

Hi the workshop sounds great. Lymph is a static fluid that is not driven round the body like blood. If you are unfit I would suggest gentle arm movements and look up lymph drainage. I'm still new to breast cancer first lumpectomy Aug 2023 and nodal clearance in October but I do try to keep active with walking and gentle exercise. I qualified in aromatherapy/lymph massage 25 years ago and there is so much good information out there that I am sure you will find a way forward to move any build up of this fluid.

Sending virtual hug and prayers

[123048]

dear Livy, so sorry you’re straggling. I do have experience of terrible seroma, lymph node removal, radiation etc. I have lymphodema of the left breast and see a nurse who massages and applies tape (the type athletes use) which is very helpful for drainage.

I do not think your pain is due to lymphodema, it sounds like nerve pain. It could well be a trapped nerve in the shoulder, after lymph node clearance a lot of the surrounding area is removed (hence the seroma) and that side for me has remained weak. I would advise. In the first instance, to see your oncologist or GP (good luck with that) and they may advise a scan and possibly physiotherapy.

Good luck, there is help out there and best to get the reason for the pain diagnosed.

Helen X