63409members
333597posts
cancel
Showing results for 
Search instead for 
Did you mean: 

have i got lymphodema ?

32 REPLIES 32
Member

Re: have i got lymphodema ?

The bra does not rub if i use triumph sports bra or mastectomy bra by Nicola Jane.triumph came from hospital and i ordered extra on line. Nicola Jane came from the bra clinic - also on line but she does visit hospitals. She was fab - had proper fitti g with wound etc.. The wired bras of old do rub - but. I can't feel it, so get red line if on too long. Numbness is weird - struggle still with it. People bump into you ,but can't tell. Kids at work give a hug and hit implant! But onthe whole most days doesn't feel too different til i do too much. Helen
Member

Re: have i got lymphodema ?

Hi Amber, glad you are doing well. Take care.

Member

Re: have i got lymphodema ?

Hi Helen, thanks for your reply, glad you are doing well. I had 3 Lymph Glands removed as well, so that is why i have swelling, and numbness. I have a job to get a Masectomy bra that doesn't rub. How about you does you bra rub where your enlarged gland is. My numbness is so weird. Take care.

Member

Re: have i got lymphodema ?

Dear cal,

i had my op last october too, my swelling has been under my arm.  I have an enlarged lymph gland - feels like a suasage under the skin, but the toehr swelling over my boob andupper arm has gone down now - unless i do too much

Member

Re: have i got lymphodema ?

Hi Cal,

No swelling in my arm it was on my hand and has disappeared since changing meds
Member

Re: have i got lymphodema ?

Hi Amber, did you have swelling in you arm?. I had a Masectomy last October, but did not have swelling in my arm but have swelling by scar and under arm and down that side, which is also numb.

Not sure if i should see Breast Nurse about it, but was told months ago by her that it wasn't Lymphodema. I also take Letrozole, and because of this i have to take once a week 1 Alendronic Acid  Tablet.

Carol.

Member

Re: have i got lymphodema ?

Had my appointment at lymphodema clinic yesterday and good news the swelling is not lymphodema. It's side effect of Anastrazole on my bones. My Onc has changed my meds to Letrozole so will see if it makes a difference x
Member

Re: have i got lymphodema ?

Good luck! X
KD
Member

Re: have i got lymphodema ?

Hi Nursemakeyouwel,

 

Thanks so much for your speedy reply - I have got the contact details now and will give Chris a call - as you say its worth a try.  I am off to see the lymphoedema specialist at the hospital today so hopefully will feel a bit more positive.

 

Have a good weekend - let's hope we have some sunshine

Karen x

Member

Re: have i got lymphodema ?

Hi Karen, so sorry you're having a tough time. It's pants isn't it? The lady I saw was called Chris wise and she works 2 days a week in London fir a lymphoedema consultant and from her home near Deal the rest of the time. If you Google " Chris wise lymphoedema" she comes up. She has a website with all the details on it. It's Worth a try. Good luck. X
KD
Member

Re: have i got lymphodema ?

Hi Nursemakeyouwel

 

Over the past couple of weeks my arm and now hand have started to swell, I have an appointment with the Lymphodema specialist tomorrow at my local hospital for an assessment.  As I live in kent area I wonder if you would be able to give me the contact details for the osillation therapist you visited.   I am eager to give this a try as you have had such good results and I am pretty desperate to get this swelling down.  I start rads next week so hope this doesnt make it any worse!

 

Many Thanks

Karen Smiley Surprised)

Member

Re: have i got lymphodema ?

Oh no! That's pants. Hope they see you soon. X
Member

Re: have i got lymphodema ?

Nurse who runs the Lymphedema clinic retired last month and won't be replaced until May! BCN is going to refer me to the next nearest clinic which is 70miles away, hopefully I'll not have long to wait x
Member

Re: have i got lymphodema ?

Amber, please do.check

My arm still swells if i do too much of the same thing -like repetitive strain i suppose.  And the physio said naything heavy could trigger it off too.  A friend showed me some lymphatic massage strokes up my arm - really gentle - he works for a Hospice.  I am not sure if htey worked, but they made me feel as if I was helping.  Gentle exercise helps too - the Breast Cancer care DVD Git Fit, Thai Chi, yoga - you know  It is all slow and deliberate movements but nothing too strong

 

Helen

Member

Re: have i got lymphodema ?

Hi Helen, thanks for the info. I had my surgery Feb last year so this is a bit unexpected but I have read that lymphodema can strike at anytime. Will speak to my BCN tomorrow x
Member

Re: have i got lymphodema ?

Hi Amber,

I had tingling fingers a few days after my op. I spoke to the BCN, and was told it was common due to the fact that your nerves to your hads are disturbed during surgery  to my lymph glands.  BUT do check with your BCN.  Mine has settled and i do not get tingling now.

 

 

Helen

Member

Re: have i got lymphodema ?

Thanks, will do x
Member

Re: have i got lymphodema ?

Sorry meant that for Amber!!!! X
Member

Re: have i got lymphodema ?

@Angie- the best thing to Do is not be too active today. Keep the arm slightly elevated while sitting and avoid hanging it down low while walking around. Avoid vigorous activity today if poss. Ring yourBCN. Tomorrow and get an appointment asap to have it assessed.
@helena- deep tissue isolation is an unusual therapy in this country but widely used on the continent especially in Germany. It involves gentle electric cuteness which vibrate through the tissue and encourage the lymphatic flow. I don't know where you live but I googled lymphoedema treatment in Kent and found a private Nurse specialist who lives near Dover. Want that expensive either. About£40 and I was there over 2 hours. Don't know if it works but it seemed to help me and it certainly can't do any harm!
Member

Re: have i got lymphodema ?

Hi, woke up this morning and my hand is swollen, have noticed pain around my thumb area this week, is this lymphodema and is there anything I can do to help as it's Sunday I won't be able to speak to anyone x
Member

Re: have i got lymphodema ?

what is oscillation therapy?

 

Member

Re: have i got lymphodema ?

Just to reassure you a bit , I developed lymphoedema about 9 months after surgery, and I also had a lot of pain and heavy aches feeling, and my wedding ring got so tight I couldn't wear it, so had a new one made to fit over my swollen fingers. I rang the BCN who told me to come straight in, and she thought I had lymphoedema and cording as I couldn't,t lift my arm high or fully straighten the elbow. She sent me to a specialist lymphoedema clinic where they measured it to be 15 % swellinG, mild but significant enough to treat. THey fitted me with sleeves and gloves but because I am an ICU nurse I was not allowed to wear the sleeves/ glove at work due to infection control. I wore them outside of work, and particularly when exercising, but was only really wearing them 3 days a week. I then went to see a private lymphoedema specialist who used deep oscillation therapy on my arm. Gradually I wore the sleeves less and less because I found them so uncomfortable, and when I went back a few months later for a follow up assessment at the lymphodema clinic, I wasn't wearing them at all. My swelling was now down to 5%, and that was without wearing compression garments, so I think either it got better on its own, or the oscillation therapy did the trick.

Either way, my point is, that no matter what you read or are told, lymphoedema can get better. I was told it would never go, it could only be prevented from getting worse, and my new wedding ring is now hanging off my finger!!!!! Xxx
Member

Re: have i got lymphodema ?

thanks jo, thats very helpful

angie xx

Member

Re: have i got lymphodema ?

Hi Angiepops,

 

Don't know if you've seen this or not, but I have put you the link below to BCC's publication Living with Lymphoedema.  Hope you find it helpful.

 

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

 

Take care,

Jo, Moderator

Member

Re: have i got lymphodema ?

hi

i went to see my macmillan nurse and she has measured me and i do have lymphoedema at the wrist area. i have a sleeve now and i am getting a glove but i have to gently massage it upwards for relief and generally take care. i does seem to work and is less painfull when i have the sleeve on. i take that off if the hand balloons though.

just have to see how it goes i suppose.

angie xx

Member

Re: have i got lymphodema ?

much better to manage it and try to keep under control then cope with it really bad make sure you get referred to lymphoedema clinic and they will give you advice and keep an ey on it

 

Best of luck

Member

Re: have i got lymphodema ?

Li Li ring your BCN today, I felt that my right sleeve on my shirt was tight, just a little thing really, so I rang my nurse and she referred me to the lymphedema nurse, when they measured my arms the right one was 17% larger than the left, it was just mild lymphedema and hopefully wearing the stocking and doing the exercises I am getting it under control, I am so glad that I rang the nurse as I had thought I was just imagining it all and felt a bit silly as my arm was not massive but it was very tender in the inner arm, I am so glad I made that call good luck x
Member

Re: have i got lymphodema ?

Hi I noticed my wrist and just above were swollen about 2 hours ago. I am sitting with it elevated on a pillow right now. How did you massage yours, I'm not sure what to do? Its a worry isn't it? x

Member

Re: have i got lymphodema ?

hi

today my op wrist and hand swelled up like a balloon, i massaged it for a while and it started to go down, has anyone else had this happen?

angie xx

Member

Re: have i got lymphodema ?

Forgot to say that if you see any signs of redness or anything that might indicate an infection such as developing a temperature then you need to get seen urgently and get antibiotics.
Highlighted
Member

Re: have i got lymphodema ?

Hi Angie

It really is impossible for any of us to say whether or not its lymphoedema as you need to be seen by a lymphoedema specialist (quite often a specialist nurse or clinic although I believe some Breast care nurses also deal with this). I would suggest contacting your BCN and getting a referral as soon as possible. If it is lymphoedema, the sooner you get treatment and advice the better.
My experience is that it's best to see a specialist in the field. GPs and even surgeons and Oncs don't often have the specialist knowledge and when lymphoedema is very mild - as mine was when diagnosed - it can be dismissed as nothing. As soon as I had my arm measured, the lymphoedema nurse made a diagnosis and I started treatment immediately which got it right down again.

In the meantime, you could ensure that you're arm is elevated while your sitting down, say watching tv. I do this by putting a pillow under my arm to raise it up. Don't lift anything heavy with that arm including shopping bags. Try to do heavier activities like housework and gardening in short bursts rather than spending hours on those things which can increase the flow of lymph to the arm. I'd also recommend the BCC leaflet on lymphoedema as that gives advice on arm exercises and the dos and don'ts for those at risk or with lymphoedema.

It may not be lymphoedema of course and I hope that it isn't. But the main thing is don't delay in getting your arm seen. You may have a wait to see a specialist - I had to wait about a month - so the sooner the referral is done the better.

take care
Elinda x
Member

Re: have i got lymphodema ?

Hi Angiepops


Maybe you could give the helpline a call in the morning to ask them, the number is on 0808 800 6000, opening hours are Monday to Friday 9.00 – 5.00 and Saturday 10.00 – 2.00.


Best wishes


June, moderator

Member

have i got lymphodema ?

i noticed today that my arms dont look even. my op arm looks slightly swollen, not a deal, you do have to look properly but i asked a few people and they all picked out the same arm as bigger.
ive not really thought about it, after mx, anc, chemo, ive not paid much attention to my arm but today i felt a difference.
any ideas? what do i do with it?
angie xx