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Lymphoedema -what a mess!

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Re: Lymphoedema -what a mess!

I'd love to find out more about new treatments or where to be referred for a consultant opinion. 

I developed breast lymphoedema from rads, complicated by an underlying infection in it. I saw the rads consultant and a breast surgeon and neither considered an infection, despite redness and swelling, it took six months to get this identified and treated and I will have to take antibiotics for 1-2 years I've been told, its only just starting to settle after 4 months.

I've had little response to simple drainage, compression and what I can only describe as fabric bubble wrap to out in my bra. 

I've found the local service (nurse led) very wishy washy, and not really helpful. It's having a huge effect on my recovery. They seem confused as to why these things haven't helped! They don't follow up at all when they say they will and haven't written a single clinical letter in the five months I've been seeing them. I'd love to buy some new bras and swimwear but it just isn't worth spending the cash as affected one is several cm bigger. 

As I have big boobs they managed to save them, I now find this a curse not a blessing!

I can get a second opinion, and wondered where people would recommend that is consultant led

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Re: Lymphoedema -what a mess!

Whitelily 

I would love to know more about challenging the way lymphodema has traditionally been treated......

I have it in my right hand. I make things for a living so it is becoming increasingly difficult to work out how I can go back to work, every time I get busy my hand swells and hurts. I too have been issued with a full sleeve but feel that hasn't helped so far. 

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Re: Lymphoedema -what a mess!

Hi Foxy, you might find if you just wear the glove that you swell above it? Wearing the whole sleeve is generally advised. My sleeve has the hand part integral but doesn’t cover my fingers. It’s definitely worth persevering with. X

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Re: Lymphoedema -what a mess!

Hi I also have Lymphoedema in my hand. Received my sleeve and glove yesterday. I am thinking though surely it would make more sense just to wear the glove so the fluid drains into my arm? Or is the sleeve necessary too? Yesterday I wore them for a few hours but my hand looked more swollen when I took the glove off. Confused....x
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Re: Lymphoedema -what a mess!

Hi all yes very underfunded service which doesn't really help us. I have tried everything over the last 5 years not really getting anywhere. The bandaging made my arm and hand worse as do the off the shelf compression garments. I have to have made to measure which seem the best option for me. I am currently seeing a new lymphoedema nurse who is the head of the service and she says there is lots of new research coming out challenging the way lymphoedema has traditionally been treated. She says if it is mild as mine is new research is suggesting that compression does very little to help. I am seeing her this week to see what she suggests that I do going forward but she has advised me at the moment to only wear my sleeve when exercising or doing any strenuous heavy jobs. These surgeons are removing lymph nodes everyday on hundreds of women but there is no provision when half of these women then go on and develop lymphoedema! 😡

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Re: Lymphoedema -what a mess!

Mooney, sorry to hear you didn’t have much support from your lymphoedema team. I have been lucky to have had a very supportive team of lymphoedema nurses that have kept me sane for the past 5 years. After trying a variety of treatments  for breast lymphoedema I have resorted to a mastectomy after seeking advice from a lymphoedema specialist. It is definitely an under resourced area and one in which it is difficult to get seen by a specialist because there aren’t many of them! The effects of lymphoedema are devastating and a daily reminder of cancer treatment making it very difficult to move on. Best wishes Flossie x

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Re: Lymphoedema -what a mess!

Reading this felt like my own story. My hand was the worst affected area and all compression garments dI'd is make it worse!! Now wearing kinesio tape, glove and sleeve does nothing to help but that seems to be the extent to their treatment. Haven't looked into MLD yet, being off work I don't think it's an extra cost I can afford right now. This hot weather doesn't help either. This was all I dreaded when faced with the choice to have full node clearance last year 😢
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Lymphoedema -what a mess!

Well last year i had full axillary clearance 6 nodes positive out of 13. Chemo FECT plus radiotherapy. Survived all that and then wham bam - lymphoedema!
What a mess. In My county only one unit right at the edge of the county with two nurses who to be quite honest are worse than useless. It seems there are no NHS resources in Lymphoedema. Its a chronic condition underfunded with little research base.Because of this no emphasis is put on MLD and all into fitting of compression sleeves which in some cases positively increased my lymphoedema and pushed it into my hand. Everything they they tried including Compression bandaging made things worse. Worse, every time i rang for advice or reassurance i got the ‘what have you been doing line’ blaming me.
The final cure all, compression bandaging made things worse. My lower arm and hand not only increased in size, it looked awful. 😢I could have cried (no i did cry).
I have seen a private MLD specialist three times now and the words the positivity the exercises given to me the pro active nature of her treatment is such a difference to the shrug shoulders blame the patient attitude of the nurses in the NHS.
My arm is now 100 times better thankyou. But what is going on? It shouldn't be like this. Lymphoedema is horrible a reminder of our diagnosis a further restriction on life when you just want to get on and live. It shouldn't be left to the private sector to be the most proactive and up to date. 😱😢