Lymphoedema

Hi Jaxs so sorry to hear this, it's a painful and frustrating side effect and not really talked about (well, compared to the side effects of chemo).

I was referred to the hospital “radiotherapy late effects team” and they have given me some deep breathing and massage exercises to do. My lymphoedema is in the breast rather than the arm, so I've been advised to get some more supportive bras as compression apparently helps. The other thing I am trying to do is more arm exercises to try and keep the fluid in the lymph glands moving.  Best of luck, I feel your frustration. 

Hi. Thanks for your feedback mine is also in my breast so maybe I will contact the radiotherapy team and ask them for some exercise advice. Many thanks take care x

Hi Jaxs, I also have breast lympheodema from radiotherapy. Like Irishgirl16 says, it doesn’t seem to be mentioned but I did find it tucked away in the radiotherapy booklet, under later side effects. I was lucky I think as it was identified quite quickly although with my prompting - I had a 10 week post rads oncology follow up where I asked why the treated breast was bigger than the other after being scooped out and radiated, especially as the literature says it may end up significantly smaller. Luckily they took it seriously and firstly gave me a course of antibiotics as they thought it seemed warmer than the other, plus referred me back to the breast clinic and to the local lympheodema service. When I saw the lympheodema nurse she confirmed it and gave me several bits of advice: showed me some simple massage though I found that tricky; told me to get better, more supportive bras which should create a cleavage by lifting boobs up properly; and said I should start Nordic walking or aqua aerobics. I chose the walking, did a course and still love it 3 years later. I’ve kept the lympheodema ‘mild’ through the bra and exercise measures. I’ve had one ‘flare up’ which required more antibiotics but I’ve been lucky to escape cellulitis. 

Sorry you’ve had such a long struggle with it, I’m not sure what else to suggest. I assume you’ve had an assessment by the lympheodema service? If not then I’d definitely push for that. I’ve heard of foam inserts for inside the bra which provide a sort of massage - again if you haven’t been told about these I’d ask. As mine responded to the bras and Nordic walking, I haven’t been given the inserts but they were mentioned by one of the breast nurses as a possible ‘back up’ if necessary. 

Fingers crossed that you can get it sorted enough before your holiday which sounds long overdue. Love and hugs, HFxx 

HappyFeet1where did you do the Nordic walking course as I am interested in starting that. I bought some poles but finding the technique difficult?  Thanks 

Hi Irishgirl16, I learned the pole technique through a Nordicwalkinguk group in St Albans (I live in Hertford). I now walk with a newer group which is nearer to me. I would definitely have struggled to learn it without an instructor, there are probably videos online but I think you really need face to face teaching. It’s quite different from walking with regular walking poles. Many groups now belong to the more recently formed WALX uk. I’ll try to post links to both. Hope they work!  HFxx

https://nordicwalking.co.uk/

https://walx.co.uk/