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Forum: Lymphoedema

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Clothing advice

Hi, I work as a physio with patients who develop lymphoedema secondary to breast cancer. I am trying to compile an advice leaflet for patients that have been newly diagnosed with lymphoedema. One section i am struggling to find information on is the...

Posted by peachie on Sun Aug 29, 2010 9:29 pm with 9 comments

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I have had lymphoedema in my right arm for nearly two years. I also wear a larger size to accommodate the arm. Coats are a problem in the winter to accommodate the arm and thicker clothing worn in the winter. Capes and waterfall cardigans I find are...

starfish, Mon Sep 06, 2010 5:43 pm
Diagnosed with lymphodema 2 months post surgery

Hello all I've developed lymphoedema in my surgery arm after axillary clearance :-( The bad arm is 2cm bigger at elbow and 2cm bigger at the top, and my ring feels very tight. It goes up and down a bit - better in the morning, aching, sore armpit an...

Posted by jane72 on Fri Sep 03, 2010 3:27 pm with 2 comments

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Hi Jane Sorry to hear you've had another thing to contend with- I developed mild Lymphoedema about a year ago, some months after surgery and I know how down I felt at the time-its horrible. I was lucky and seen quickly, was taught self massage techniq...

cupoftea, Fri Sep 03, 2010 6:45 pm
Sore shoulder

Hello, I have lymphoedema in my left arm. Over the last few weeks I have noticed a pain in my shoulder. It's not bad, more of an ache, and it seems to be a bit worse in the morning. Also, some movements cause a sharp pain. I'm not sure if this is c...

Posted by Hatts on Fri Mar 12, 2010 8:17 pm with 11 comments

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Hi all, I finished my rads end of May and thought I was doing really well when I felt pains in my side and shoulder and in the breast. Underarm is slightly swollen and sore and movements of arm were sore in certain areas, arm is not swollen at least n...

Mammie, Fri Sep 03, 2010 2:38 pm
Arm Measurements

I have had lymphoedema since Dec 08 dx at end of chemo but before rads. It has got steadily worse and been measured several times since then. Lastly in June this year. The measurements then showed that the volume of my left good arm had gone down qu...

Posted by starfish on Wed Aug 04, 2010 5:42 pm with 12 comments

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Hi starfish, I too have had numerous different measurements of both my good and bad arm going both up and down. Not sure what my percentage was but my BCN said it can change due to putting on or losing weight. Hope that helps a bit xx

Lynberi, Tue Aug 24, 2010 10:05 pm
having a smile at myself at bedtime

hi had right mastectomy and glands removed nov then hadseroma for 3 months had it drained pencillen for 3months infection then had to have all teeth removed in april now on moni was told i had lymphodema was given sleeve to wear i was just getting rea...

Posted by missmessy on Fri Aug 20, 2010 1:30 am with 13 comments

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Congrats, Missmessy, on new grandchild to be. I see no grandchildren on the horizon, son (34 yesterday) nowhere near settling down, daughter (31) living with her fella but doubt they will have kids, well never say never. hate Big Brother with a venganc...

danjo, Fri Aug 20, 2010 10:11 pm
computer use and lymphodema?

Hello, I was diagnosed with right sided trunkal lymphodema in 2006, following bilateral mx, rx and recon (which failed and had to be removed). However, I changed jobs in June last year and for the first time, have a desk job using a computer.(left ...

Posted by happyshopper on Sun Jun 13, 2010 8:55 pm with 6 comments

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Hi Ginny Please feel free to call our helpline for more support and information on 0808 800 6000, weekdays 9-5 and Sat 9-2. Our lymphoedema publication is available to read via this link: http://www.breastcancercare.org.uk/healthcare-professionals/p...

Lucy BCC, Wed Aug 18, 2010 11:57 am
How assertive do I need to be?

Hi Ladies, I think I already know the answer to this, but I'm beginning to doubt myself and just need advice or ideas on any other possible causes of my problem before I get really insistent with my various doctors. I posted another thread few weeks ...

Posted by elsk on Wed Jun 23, 2010 11:03 am with 24 comments

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hi just been reading all your comments, I to have a swallen hand on my effected side for over a week, iv been to see my gp who has adviced me to speak to my breast care nurse but the surgery was closed left message on answer phone and ill ring them fir...

esmae, Wed Aug 11, 2010 9:17 pm
shingles

hi can anyone help me ,ive just been diagnosed with shingles on my right arm which unfortunatly has mild lymphodema,dr from out of hours given me anti viral tabs to help and told me to see gp on monday ,has anyone else had shingles on bad arm ,? as i...

Posted by maisie54 on Sun Aug 01, 2010 1:34 pm with 3 comments

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THANKS FOR ALL YOUR HELPFUL ADVICE SAW MY GP YESTERDAY SHE DID NOT THINK IT WAS SHINGLES ,BUT MAYBE AN ALLERGY OR AN INSECT BITE!!!!!AND PRESCRIBED SOME OTHER MEDICATION. IT HAS ALMOST GONE NOW, BUT AS YOU SAY YOU HAVE TO BE SO CAREFUL OF YOUR BAD A...

maisie54, Tue Aug 03, 2010 5:37 pm
lymphodema, should it be so painful?

Hi Mother in Law had surgery for breast cancer removal of lump and lymph nodes underarm, then second op in same place to remove more lymph nodes. |Has had no support for lymphodema derspite having it for over a year just recently since being diagnose...

Posted by LynseyLou on Mon Jul 19, 2010 9:36 pm with 4 comments

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Hi Quick update. Lymphodema nurse now been and she now has a sleeve and her pain relief has been increased. Bydand - you have no idea the poor quality of care my mother in law has received. She has to chase everyhting her cancer Dr is in my opinion...

LynseyLou, Sat Jul 24, 2010 1:15 pm
Sore in the crease of elbow with sleeve

Hi ladies I haven't been on here for a while but I would appreciate your advice. I have mild lymphoedema on my left arm and was given a sleeve by BCN to see how I got on with it. Apart from the fact that the sleeve is too long for my arm, I found th...

Posted by dawnflower on Tue Jul 06, 2010 10:52 am with 6 comments

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Hi there, I have had problems with redness and soreness in the crease of the elbow - even with made to measure sleeves. The only way to avoid it was to keep my arm straight which isn't exactly compatible with normal life! But - now I have a Jobst sl...

rowena, Fri Jul 16, 2010 12:27 pm
Any help to Lyphoedema sufferers?

I have read much helpful advice, as have so many of us, from Sara (Bahons) who will be so much missed on these forums and who was such an expert on lymphoedema. As well as the personal loss to her friends and family, we shall all miss her words of su...

Posted by topsymo on Mon Jul 12, 2010 12:05 pm with 2 comments

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Hi Topsymo-thanks for posting that info. I have also found the British Lymphoedema Network useful, but was not even aware of the British Lymphology Society- good to have those details C x

cupoftea, Mon Jul 12, 2010 6:36 pm
Lindalou DCIS

could anybody give me any advice, I had a operation in Jan 2009 for pre cancer cells. I have had quite a few problems one is that where i had my Lymph Nodes my breast is swollen. It started in February this year I have been to see the physio and he sa...

Posted by lindalou1952 on Thu Jul 08, 2010 8:38 pm with 2 comments

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Hi lindalou1952 Have you tried to speak to your bc nurse for advice. She should be able to get an appointment for you to see lymphoedema specialist. You didn't say if you were flying, if so its recommended to wear compression garments with lymphoedema...

Lynni, Fri Jul 09, 2010 2:35 pm
holidays and sleeves

Hello Ladies I have a question that I cant get realistic advice about. I am going to Greek islands in June for a week, I have been told I have 12% lymphoedema in hand and just below elbow and also a 'pocket' near my ld scar. obviously have been told by...

Posted by amberkitten on Mon May 17, 2010 11:46 am with 8 comments

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I went to Greece last year and also wore sleeve at night as has been suggested. I found the threat of mosquitoes worse and had to retreat inside as soon as it got dark with all windows and doors closed. It was difficult. But I survived. I have not ...

starfish, Wed Jun 23, 2010 7:17 pm
breast oedema

Hi have not posted for a while,had bc in jan 08 lots of treatment , chemo rads etc but fingers crossed ok at the momment. Have breast oedema which is not too bad at times but lately i have noticed rash like skin under my affected breast and around the...

Posted by sarah66 on Mon Jan 18, 2010 10:44 pm with 8 comments

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Hi all BCC have produced a booklet about lymphoedema which you may find useful to read as it contains various information such as exercise to prevent lymphoedema. If you would like to read this on line or order a copy just follow the link below:- ht...

Sam BCC, Tue Jun 22, 2010 10:03 pm
Tender swollen reddened breast

I have no tenderness or swelling in my arm but my breast has become very tender, swollen and reddened- normal body temperature. Any ideas or advice? I have had 2 lots of prophylactic antibiotics with no effect. I have had surgery, chemo and radiothera...

Posted by fiosweetie on Tue Jun 22, 2010 3:37 pm with 2 comments

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Hi there - my sympathy - I finished radiotherapy end Jan and have a very red hot unfeeling boob too! In my case it's been put down to the rads, and basically get on with it - so keep us posted as to how you get on.

broomsticklady, Tue Jun 22, 2010 4:49 pm
Lymphoedema and weight

Hi ladies, Do anyone happen to know whether lymphoedema and weight are linked? I have always been at the top limit of the bmi scale but since diagnosis, I am now officially overweight. I wonder whether the extra weight is linked to my lymphoedema and...

Posted by vercors on Fri Jun 18, 2010 8:17 pm with 4 comments

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Am afraid there is a link between lymphoedema and weight,you are at a much greater risk of getting it if you are carrying extra pounds,although yes it does affect slim people too. Reason being once your lymphatic system has been compromised through hav...

sandra44, Sat Jun 19, 2010 6:41 pm
Can I get a nicer sleeve???

Hi ladies, As you may or may not know I was diagnosed with lymphoedema in my right arm and chest last week. I had my first appt at the lymphoedema clinic today where, among other things, I was given a sleeve to wear. Truth be told it is quite hideou...

Posted by princess18 on Mon Nov 17, 2008 8:36 pm with 14 comments

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Hi, I too went to my first clinic today for Lymphodemia, It taken nearly an hour to measure me for my sleeve then i had to take the prescription to the orthopedic across the road who then re measured me, This is now been ordered from Germany, same colo...

muffett, Tue Jun 15, 2010 10:59 pm
Could it be lymphoedema

Hi all, I was diagnosed in May 2008, lumpectomy then mastectomy, chemo, rads now on tamoxifen. I have noticed that there is a small redness on the bottom of what we call dog ear. I do have some cording under my arm and it doesn't lift as high as the ...

Posted by junieliz on Sat Jun 05, 2010 1:20 pm with 2 comments

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Hi Junieliz When I developed lymphoedema last year, it did start with swelling- in my hand and elbow area and a general heavy feeling-hard to describe, but the area felt noticeably different and odd. I have had cellulitus since and was very unwell-it...

cupoftea, Mon Jun 07, 2010 6:10 pm
Working and Lymphoedema

Wondering if anyone out there has similar experience to me. Brief history - Dx Dec 06, WLE surgery 10 lymph nodes removed, chemo + rads. Dx with lymphoedema a year ago and struggling to keep it under control. Workwise I am currently a dinnerlady at ...

Posted by missb on Fri May 14, 2010 1:56 pm with 4 comments

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Hi Missb My job involves lifting too. Before i went back to work my place of work was told by occupational health to carry out a risk assessment and find ways for me to avoid lifting. Could you ask to be referred?My problem was that occ health didn't ...

littlemrs, Tue Jun 01, 2010 2:21 pm
New to Lymphoedema

Hi Everyone Brief history, dx March 07, MX, 13 / 19 removed nodes affected. Local recurrence Oct 08, further node removal. Incurable dx Dec 08 with lymph only affected as of yet. 13 months of Tax / Gem. Just switched to Capacitibine and started cycle ...

Posted by jantharra on Mon Feb 15, 2010 11:18 am with 22 comments

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Spoke to MLD therapist yesterday and she was really helpful. Have an appointment to see her next week. Will have to pay but would prefer to do that than wait 12 weeks for appointment at NHS clinic. My arm is very swollen and uncomfortable. My hand l...

cammie, Sun May 30, 2010 7:48 pm
Lymphoedema or tendon inflammation?

I wonder if anyone can help me. I had WLE and SNB November 2009 and 15 rads in Feb 2010. For the past 4 weeks I have had pain in my armpit on my operated side and my breast is noticeably swollen and tender. I saw the surgeon 2 weeks ago and he exa...

Posted by elsk on Mon May 24, 2010 1:55 pm with 3 comments

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I had mastectomy 12 years ago and dx with secondaries 5 years ago. Just been dx with lymphoedema and am absolutely gutted. My arm was very swollen and inflamed and was hospitalised twice. Since surgery I have had a lot of discomfort across scar and und...

cammie, Sun May 30, 2010 7:39 pm
swelling above elbow

I had all my lymph glands removed in right arm in December 2007. I did have problems with swelling and an uncomfortable aching and was referred to a clinic who advsed me how to do massage and continue with exercises and was told it was a mild form. I h...

Posted by Chamomile on Sun May 09, 2010 10:45 pm with 2 comments

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Hi Rowena, Thanks, I will contact the clinic first Chamomile

Chamomile, Wed May 12, 2010 9:22 pm
bandaging

hello .have had lymphodemia for 3 yrs now and wear a sleeve and glove . at my last appointment the nurse was very concerned that my arm was very swollen ,i broke my wrist in nov last year and its swelling around the joint etc .i also get it up my arm a...

Posted by aroma on Mon May 10, 2010 5:35 pm with 3 comments

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Hi Lynn, I've had bandaging twice and I hated it because it was uncomfortable and itchy and I couldn't use my arm so very frustrating. But, it did help a bit and it is definitely an accepted mainstream treatment. It should only be done by a specialist...

rowena, Wed May 12, 2010 6:17 pm
cellulitis & antibiotic treatment

Just wanted to post some info in case it helps others in same situation! Just started 3rd course of oral antibiotics (amoxycillin 1500mg per day and & now 2000mg flucloxicillan per day)for celluitis in chest tissues and was advised to try live "good" b...

Posted by Haxted on Sun Apr 25, 2010 2:16 pm with 3 comments

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Hi Haxted I've been there! After weeks of ABs was admitted for 4 days for i/v Abs. I have 2 young children and work full time, so it was the only way to guarantee that I rested! I was then on ABs orally for another 6 wks after that, which did clear i...

Kindensurprise, Sun May 09, 2010 9:54 pm
Long sleeved tops-any good ones for summer?

Hi I'm posting what seems like a trivial aspect of having lymphoedema, but is driving me mad! Every pretty floaty top I find this year seems to have 3/4 length sleeves, just wondering if anyone had found any nice longer ones and would share any good bu...

Posted by cupoftea on Thu Apr 29, 2010 10:27 am with 6 comments

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Hi Everyone I had a quick look today, and intend to have another one tomorrow armed with these ideas, thanks. I like the sound of the dress Marli, really hard to find dresses with sleeves come summer. Zara had a few long sleeved tops, and if you can wa...

cupoftea, Fri Apr 30, 2010 7:01 pm

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