65.8K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Research on Lymphoedema

10 REPLIES 10
sunshine_1
Member

Re: Research on Lymphoedema

Well I have just come back from the hospital and although I was quite worried, it was totally painless. First I had a scan done. The device used was called a perometer with gives a 3D picture of my arm and measures the shape and volume. Then I had what I can only describe as the same as having an electrocardiogram. I had eloctrodes on both wrists and one ankle. It measures fluid accumulation in the limbs. By having regular checks i.e. prior to surgery (which will be my baseline) then 4 weeks after surgery then every 6 months, a comparison will be made as to the level of fluid build up in my arm. I am hoping I will be one of the lucky ones that don't suffer from it but after seeing my mum suffer for years, I feel it is very important research and I will be really interested what comes out of the study. Unfortunately it could be years down the line before we see the results but I came home happy and more positive than I have been for a few weeks. At last I am doing something. I am now off for a lovely spa weekend with my daughter to recharge my batteries ready for my second op on 7th October.
Keep smiling everyone xx Laughter is the best medicine so they say.

Guest user
Not applicable

Re: Research on Lymphoedema

post deleted

Guest user
Not applicable

Re: Research on Lymphoedema

i'm waiting to get an appoinment at my lymphoedema clinic... my right hand is swollen, arm ok!... GP not too concerned... hey ho on we go!

elinda45
Member

Re: Research on Lymphoedema

Yes please, would love to hear about it. Hope it goes well. Elinda x

sunshine_1
Member

Re: Research on Lymphoedema

Thank you ladies for your replies. I am actually based at Poole Hospital in Dorset and I take it from not many people replying to my thread that this research must be very new. I am not really too worried about it and it isn't invasive just slightly concerned at there is an electric current involved!!!! but very low frequency. I just feel that it is important to give something back to the NHS, I after all am going to be receiving lots of help from them and also it will keep me focused on something else other than this blasted disease.

Thanks again, I will post tomorrow after my appointment and let you know how I got on, if anyone is interested.

elinda45
Member

Re: Research on Lymphoedema

You might also be interested in reading this short paper on it:

http://www.journaloflymphoedema.com/journal/0201_bioimpedance.pdf

Guest user
Not applicable

Re: Research on Lymphoedema

Hurrah for any research into lymphoedema,would be very interested to hear more about this and if they are looking to recruit any other volunteers they could always post on here.

Am fed up that lymphoedema is frequently misdiagnosed,treated too late or not treated at all. There is a huge lack of knowledge out there both with regard to health care professionals and the information that is given/not given to breast cancer patients. I think I might be dealing with it all a bit better if I had been prepared for what it all actually involves,it is a total kick in the teeth to develope lymphoedema after going through cancer treatment.Ooops,sorry, bit of a rant there,not had a good week as arm measurment worse it has ever been.... good luck with your appointment .

Sandra x

elinda45
Member

Re: Research on Lymphoedema

Hi Sunshine1 - Never heard of it I'm afraid but delighted to hear that some research is going on!

If it were me I would grab the chance to be involved in research. Apart from anything else it will mean you'll get the best monitoring. I would though check there aren't any potential negatives with it.

Do you have any particular concerns about it? Elinda x

RevCat
Member

Re: Research on Lymphoedema

Bumping up in case anyone can help (i'm in Glasgow!)

sunshine_1
Member

Re: Research on Lymphoedema

Bumping in case anyone missed this thread. This research is being organised by Professor Nigel J. Bundred who is a Professor in Surgical Oncology at University Hospital of South Manchester and The Christie Clinical Trials Unit. I know some of you ladies attend Christies, I just wondered if anyone can shed any light on it all. I am attending my first clinical measurement on Friday afternoon.

sunshine_1
Member

Research on Lymphoedema

I have been asked to take part in some research regarding Lymphoedema. Multifrequency Bioimpedance in the Early Detection of Lymphoedema is its full title. I wonder if anybody else out there has or is taking part in this research. I have been given an information sheet about it but would value anyone's opinions.