65.9K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Have I got lymphodema

12 REPLIES 12
Annie22
Member

Re: Have I got lymphodema

Just wanted to add my experience, which may or may not be relevant to the question "have I got Lymphodema'
I had mx, recon, recurrance in recon, chemo, rads, herceptin and two more ops - the usual stuff. But, I also had a portacath as my veins closed up after the first chemo. I then had Tamoxifen. I was treated for Lymphodema for 6 months during the herception treatment, but it didn't get any better. I ended up with compression sleeves of many varieties and a compression boddice, prescribed by my NHS Lymphodema specialist (once I got an appointment - which took 6 weeks!) and went on to pay for very expensive private specialist treatment of more sleeves, exercise and lymphatic drainage massage at a specialist Cancer Centre as I was in such discomfort and couldn't get another NHS appointment quickly enough.
To cut a long story: I was in such pain that I took myself to A&E. I actually had a blood clot around the portacath, up my jugular vein and down my arm and ended up in hospital for 10 days.
My hospital apologised and said they shouldn't have missed it. But Tamoxifen does sometimes cause clots. I am not at risk of clots as I am slim, I run regularly, eat well, dont smoke, drink etc and this is the reason that a clot wasn't suspected.
I only alert you to this as had I not gone to the hospital the undiagnosed clot could have been fatal, and yet all the specialists agreed it was lymphodema.
Annie

Guest user
Not applicable

Re: Have I got lymphodema

Just located the book. It's called "Lymphoedema, advice on self-management and treatment" by Peter Mortimer and Jacquelyne Todd. Only 48 pages ISBN 978-0-906584-59-0
Morwenna
Member

Re: Have I got lymphodema

Thanks sdfmeg,

Those links are really useful!
Guest user
Not applicable

Re: Have I got lymphodema

I was given an A5 book by lymphoedema nurse, which had a short guide to simple lymphatic drainage. It was very good - basic, but more information than I have seen elsewhere. I will try to post details when I find them.
The other useful things I found were:
http://m.youtube.com/watch?v=Q9FP6AHj9Eo
and
http://www.lymphedemablog.com/2013/01/08/self-manual-lymph-drainage-for-lymphedema-affecting-the-arm/
I don't have medical training, but have an ITEC course in anatomy, physiology and massage and they seem OK to me. (I'm using them myself)
Morwenna
Member

Re: Have I got lymphodema

Hi Dressmaker,

You might see if its possible to be seen by your breast surgeon, or a nurse or Physiotherapist who is experienced in lymphedema, so give you a proper examination and diagnosis.

I think, if it is lymphedema the key is to catch it early and start appropriate management before it gets intractable.
June_BCC
Member

Re: Have I got lymphodema

Hello Dressmaker



Welcome to the forums, you've come to the right place for support as the users of this site have a wealth of experience and knowledge between them.


I have put a link to a BCC publication on Lymphoedema which may help you.


http://www2.breastcancercare.org.uk/publications/treatment-side-effects/living-lymphoedema-after-bre...


If you would like to talk to someone in confidence then please do phone the helpline here where you can talk to a trained member of staff. Calls to the helpline are free, the number is 0808 800 6000 and lines are open Mon-Fri 9-5 and Sat 10-2.


Best wishes


June, moderator

Guest user
Not applicable

Re: Have I got lymphodema

I get some swelling under my arm, it catches on my bra, it feels sore and hot but there is nothing to see this may be lympoedema, my arm is ok. It happens if I have done to much.
I went to a lympoedema discussion in 2009 at Sheffield and they informed us of a way to massage these areas but I cannot find anything to refresh my memory.
Can any one help
Guest user
Not applicable

Re: Have I got lymphodema

Thank you, one thing pulled me through this year and that was the birth of my first grandchild, hope all you lovely ladies keep well and strong, my gp seems to think lymphodema, but will see what my bs thinks, have a good new yearmand keep we'll, xxx
Guest user
Not applicable

Re: Have I got lymphodema

Thank you, one thing pulled me through this year and that was the birth of my first grandchild, hope all you lovely ladies keep well and strong, my gp seems to think lymphodema, but will see what my bs thinks, have a good new yearmand keep we'll, xxx
Quail
Member

Re: Have I got lymphodema

It must be hard to loose your twin to this bas***d disease, Mardijane--I hope that at least with the genetic testing you get some good answers. There are a couple of really helpful BRCA threads in the "Family history and genetics" section, if you want some support around that. xxx

Quail
Member

Re: Have I got lymphodema

You've had so much trouble that I would be hesitant to suggest it was lymphoedema. The heaviness in the arm is a sign, but I don't *think* the tingling fingers are, unless the swelling is pressing a nerve. But whatever it is, it probably needs to be looked at. I'd give my bcn a ring in the New Year, unless you start to feel unwell and run a fever or unless your arm swells and feels hot, in which case you'll need to get to a&e to check it's not cellulitis. Sounds like you've been through a lot, but you are lucky it is not cancer.
Good luck.

Guest user
Not applicable

Re: Have I got lymphodema

Thank you quail, I got back to see bs on 15th jan, so will see what he says, yes I have been through a lot but of as bad as some people have to go through, it affected me mentally as well, I lost my twin sister to bc three yrs ago, so just going down the route off genetics now, xxx
Guest user
Not applicable

Have I got lymphodema

Afternoon ladies,
well after a very long journey that started in aug with abnormal mammo, stero core biopsy and then removal by localised needle wire biopsy to clear the area affected, went on to have a seroma that looked like my boob exploded, put on strong antibiotics, ten days later my boob triple the size it normally is, went back to hospital, had to have scar re opened and packed at surgical ward, back next day to see bs who then said sorry back to theatre, apparently had a stitch abcess, more tissue taken and debrieded and washed out, then every two days re packed and dressed, finally closed last week, the problem is now very heavy feeling in my right arm and tingling with numbness in my fingers, any help would be most gratefull, by the way the results were good, pre cancer with adenosis sclerosis and fibrocystic breats, thank u once again ladie and hope you are all keeping well, xxxx