Could this be lymphoedema???

Hi ladies - wondered if anyone could help me on this one. I was diagnosed with BC four years ago (left breast). I Had left wide local excision and axillary node clearance, followed by a mastectomy and reconstruction. No further medication or treatment followed. I have been fine up until a couple of weeks ago when I began to experience a feeling of having a ball under my left arm. Sometimes my breast feels heavy and my arm aches. It’s a really strange sensation. I have recently moved house and offices where I work and have lifting and moving boxes as you do!. I didn’t know whether this could have something to do with it. I was examined by my GP and she couldn’t feel any lumps in either breast. I spoke to my BC Nurse, who said it sounds like Lymphoedema and I have made an appointment to see her a week on Saturday. In the meantime, I just wondered if any of you had any thoughts?..

Hi Sarav, Yes it does sound like lymphoedema, I have had just the same symptoms went to see the lymphoedema specialist and she also said i had breast odema which i suspect its what you may have. A good sports bra can help to hold you in more. I do think that things have got worse for me since my reconstruction. When did you have your recon and which one? Helenxx

Hiya hezb

Thank you for replying. I had my reconstruction in August 05 and had a tram-flap. I have to say though I have had no trouble whatsoever since and am really pleased with it. I think that’s why I was worried; the fact that I have felt nothing since the Op and now have these different feelings and sensations now. I’ll be glad when I’ve been to the hospital - I’ll let you know…Sara x

Hi Sarav, You can get lymphoedema years later, But hopefully its because you have been lifting too much. Hope your hospital appointment puts your mind at rest. HelenXX

Hello there,

Hope you dont mind me coming on here but seems to be some people that know a lot more than me although i am reading everything I can.

I have had a mildy swollen arm since last week and what felt like cording. When i saw oncologist last week i mentioned my arm felt like it was cording again, she didnt look but it wasnt swollen at time so i didnt worry unduly. I mentioned lymphoedema and she mentioned that it was a distinct possibility when i have rads in about 3/4 weeks time. Anyway, i had chemo yesterday and spoke to a couple of nurses from oncology clinic. They thought it looked like lymphoedema and rang clinic for me who said they could only see me at end of June - this will be after i start rads.

My worry is this, if this is lymphoedema, surely i will need to wear some sort of support whilst having it to prevent it getting worse. I told the nurses i was willing to buy a surgical support myself using measurements given on activa site. Apparently the lymphoedema clinic advised against this. i have looked up mld specialists in my area. Would it be worth seeing one of these privately to get the ball rolling. I will speak to bcn at clinic today but would appreciate input from people who have been through this. This morning my arm looks back to normal but is still heavy and slightly painful.

I think a three week wait is ridiculous but what can you do? We are so powerless here. Worse thing is i am very predominantly left handed and it is my left arm. I am going to have farm out ironing for a while i think but no one does it the way i like it.

Linda

hi linda - can’t help with the ironing but…I’m off to see boob clinic re lymphoedema in breast - for them to check it but feel frustrated too as nobody seems that bothered and it s abig thing when its your body…will let you know how it goes and good luck too, mary x

Hi Linda - so sorry to hear you’ve been let in on bc’s dirty little secret. It does sound like you have the big L.

A wait of three weeks is pretty good, I think. For some people it can be months for appts at lymphoedema clinics, but that won’t be much consolation to you when you want, and need, help now.

Have you already been advised to look after your ‘bad’ arm? - no heavy lifting, not too much repetitive movement, no injections, etc etc. I would say also to keep the skin well moisturised, elevate/support your arm when resting (especially the elbow), wear rubber gloves when washing up, avoid tight jewellry/watches on that hand… sure there’s loads I’ve forgotten…anyone else?

Oh yes, try to avoid being bitten, scratched, stung (insect repellent) or cut on that arm and if you do, disinfect it straightaway. If you are a gardener, wear gloves and long sleeves.

If there no medical reason why not (you may need to check), swimming is good for lymphoedema.

I think I’m right in saying that you can’t have MLD during radiotherapy, but a bit before if you can fit it in, might make you feel more comfortable.

I say b****r the ironing! If you must do it, do the absolute minimum of it, with the spray/water compartment empty to reduce the weight. . I’ve got bilateral arm lymphoedema Have trained myself to do it with either hand (I’m left-handed like you) to spread the load

Too right kittenkit, on both counts it IS a big thing when it’s our bodies that are suffering and very few ‘healthcare professionals’ are even slightly ‘bovvered’.

X to all

S

Hi there,

Thanks S for your advice. I have been looking up all the things i should do on internet. My main priority is to stop it getting any worse. A lot of what we are advised against we do without thinking, carrying shopping, oh and i hate wearing rubber gloves to do washing up but fortunately, the dishwasher takes care of most of that.

There used to be a brilliant avon product called woodland herb body oil spray. It wasnt marketed as an insect repellent but word of mouth showed it was the best thing ever. Wasnt in their last book but i might look on internet. Honest it was bees knees. Story was if avon marketed it as such, it would have had to have had a lot of tests undergone. Was also a brilliant moisturiser. Hope it is still there. i remember going to Spain in biting season and I was usually one of those who got attacked badly. Not one bite with that stuff.

Only reason for not swimming is havent plucked up the courage to go with a comfee in. I do go to gym regularly but havent used heavy weights since the op. I did an exercise class at hospital run especially for bc sufferers to get our bodies moving so know a bit about what to do and not to.

Mary and S yu are both right about the apathy of this condition. Although interestingly, there seems to be an abundance of private MLD practitioners. Fine if you can afford it…

All the best and thanks again

Linda

Hi there again

The product Avon Skin-so-Soft (a moisturiser, I think) also springs to mind as being an excellent insect repellent. I wonder if it got renamed at some point anhd is the same one as you are thinking of…? Does anyone know?

Yes, there are quite a few MLD people out there.

mlduk.org.uk lists bona fide practitioners.

I think they will always have a plenty of work when the NHS lymphoedema services are so patchy and underfunded. I always wonder if the severity of a person’s lymphoedema is inversely proportional to the size of their bank balance…

X

S

I do agree we do need more funding for this as it really does hold you back from doing the things you want to do.My nearest lymphoedema clinic is about 10 miles away and they are only there once a week my appointment was 2 months before i got to see someone. My doctor was very reluctant to refer me she was going to send me for physio but they insisted i saw a specialist instead think the funding comes from the gps. HelenX

Hi all

I thought you might find the BCC booklet ‘Living with lymphoedema’
helpful to read. If anyone would like a copy just follow the link below:-

breastcancercare.org.uk/upload/pdf/bcc_lymph06_lp_0.pdf

I hope this is useful.

Kind regards
Sam (BCC Facilitator)