Is it lymphoedema?

[sandra44]

Oh dear Jill, don't these nurses know that we just wear these sleeves and gloves for a laugh !
Nicola ,it would be great if you find any info that you can post to keep us up to speed. I have learnt more from my time on this site that from any other source.
Wintersocks, I don't think ignorance is a young doc's disease. When I went to my gp as I was dimissed over the phone by bcn who said my problem was post rad damage, she must have had xray eyes to see down the phone line...well, said gp is a crusty old codger and he told me " Noooooo you can't get lymphoedema in your breast, you have got mastitis ! " Pfft, I won't ever see him again as he refused to refer me to the lymphoedema nurse. I got back on phone to bcn and wouldn't take no for an answer, I knew something wasn't right , then lo and behold get diagnosed with lymphoedema to boob, arm and trunk. I'm lucky that I have the most fantastic lymphoedema nurse who is wonderful and I get monthly sessions of MLD. Just to have someone understanding to what we are going through has been a great help after feeling I wasn't being taken seriously at all.
Three cheer for all us lymphomaniacs.
Sandra x

[Tolliebelle]

HI All
Here is a good one I went to have blood sample taken today and was wearing my sleeve and glove quite visible as had short sleeved t shirth on. "Whicj arm wouyld you prefer" Asks the nurse?????????????????? Well it will have to be this one I say lifting good arm Oh why have to be she replies Derrr I really couldn't believe she thought I was trying to make a fshion staement with said sleeve and glove but who knows!!!
Jill xxxx

[Quail]

Dear Wintersocks,
I do think this lymphoedema treatment is woeful--you need to be, at the least, got into a sleeve. I know that a lot of the Manual Lymphatic Drainage treatment can't be done while you are being radiated, but you need to INSIST that you are measured for a sleeve and GIVEN one ASAP. This is not rocket science. This is not senior-level oncology. This is tape-measure work that should be a routine part of post breast surgergy and it makes me furious that at a time of great illness and stress something as straightforward as lymphoedema cannot be dealt with in a couple of weeks is UNFORGIVABLE. This is so far from best practice as to be straightforward neglect. Lymphoedema not only can be treated, but it NEEDS to be treated, and the sooner it is treated the less severe the consequences are.
OK rant over.
There is a website that contains a list of Manual Lymphatic Drainage practitioners (MLD uk). If you can't get NHS help in a timely fashion, you might want to try to find a local private therapist who could measure you for a sleeve. You should not have MLD now, but there is other treatment that you could be having now.
I will try to be calmer next time--but you are in the exact place that I was--fat arm, radiotherapy, and kinda feeling for the first time that there was nobody in the NHS who really gave a toss about my real problems. The sleeve really helped with my arm pain quiet quickly, and, although it felt awful at first (a girdle for my arm!), I have learned to really like how it makes my arm feel not sore, not heavy and almost normal.
xxx

[wintersocks]

Moorcow and sandra44,

That's interesting, thanks for that. It was a very young doctor who looked at my arm, perhaps she has not seen enough lymphodema to know what it is?..

I hope to get an appointment quite soon form the lymphodema nurse at the other hospital. Meanwhile my arm remains swollen and sore and the indentations stay for ages, after being pressed, I am waking with weird and wonderful shapes imprinted on it.

Have another week of rads to go. The whole thing is just so exhausting; the rollercoaster gathers speed and rattles on......
Thanks for your replies.
WSx

[moorcow]

Sandra44 and wintersocks - couldn't agree with you more, lymphodema is very much the poor relation - no one has really bothered to do definitive research about prevention and maintneance of lymphodema at its lowest possible level - my OH is an onc as you may know and she said i did have lymphodema and it was just in my upper arm - I think it might be worth writing to the doc or the doc's senior to say you are wrong re arms and fingers cos they are meant to learn from patients...
I will very seriously investigage what research is currently going on into lymphodema prevention and what else could be done and post back ..
we need to change this poor medical /nursing care ...after i had my first lymphodema i had a check up and asked for a BCN to look at it and they said no we aren't able to look, much too busy and not our area anyway, get your Gp to refer you to the lymphodema nurse...
THANKS!!! jeez again
nicola

[sandra44]

Hi Wintersocks, jeez I don't know where they train some of these docs nowadays ! He is talking rubbish ! I have lymphoedema in my boob,arm and trunk... I do not have swelling at all in my hand or fingers. Drives me bonkers these docs that don't actually know what they are talking about. When I had my annual appointment this year, 3 year post diagnosis, my lymphoedema started ten weeks post rads, the doc said to me after I said the only problem I have at the moment is with my arm " what makes you think you have lymphoedema" ? Hmmm what makes him think he is a doctor ? I should have just slapped him with my good arm of course....
All I can advise is read up as much as you can ,get yourself on the lymphoedema nurses books and come on here and share and rant as much as you want. Lymphoedema is the poor relation that no-one pays enough attention to, arm yourself with the knowledge to argue your case and plenty of foot stamping may be required . Bad enough that I have to put up with this conditon but it annoys me intensely that I have to fight to have it recognised and taken seriously, but hey I'm not backwards in coming forwards and I'm ready to educate those medical professionals who really should know better. Good luck xxxx

[wintersocks]

Yes, thank-you (from another Gill) this is what I am thinking too, I think the doc is not right. Trouble is my arm is so sore and another 2 1/2 weeks until rads finishes. Oh well....

[Tolliebelle]

Hi WS
My arm was the only bit swollen when I was dx but wearing just the sleeve made my hand and fingers swell but now have glove and that doesn't happen anymore. So my answer would be no it doesn't have to be. ( but I am no expert lol ) I would wait for your appt with the LD nurse and see what she says
Hope that helps
Jill

[wintersocks]

Hi all,
Can anyone answer this question: Does the hand and fingers have to be swollen for it to be lymphodema. I have been given two opinions (see above)
My arm is very sore.

Thanks

WSx

[wintersocks]

Hi All,
I posted a little while ago to say I was thinking I might be developing lymphodema. I saw the BCN who got the lymphodema nurse to have a quick look, She said it looked like it was and put me on antibiotics and said she would send me an appointment . She told me to mention it to the rads people, as I started them this week at another hospital,
I saw a doctor at the rads appt and she said it wasn't lymphodema as my fingers and hand were not swollen.

Then I (by chance) bumped in to the BCN told her what the doc had said and she told me thst she would be inclined to believe the nurse's opinion.

So, my head is in a bit of a spin, as I am not now sure if it is or isn't! Meanwhile, the arm is still sore and swollen and pink (like a burn) and if I press it it leaves indentations. The antibiotics don't seem to have done much.

Does the hand/fingerd have to be swollen inorder for it to br lymphodema?

Thank-you
WS

[chrisp1e]

Hi everyone,
I've had lymphoedema for about 11 years now and have been hospitalised with cellulitis twice in that time. Recently since another recurrence of bc and gruelling chemo, my lymphoedema has become worse and is painful all the time. I'm due to attend a course soon on how to manage it so it might ne worth checking if there is an awareness course in your area. I wear a combined compression sleeve and glove. Can be a bit of a nuisance at times but you get used to it. I live in East Kilbride, Scotland and we get new sleeves every 4 months. It's all a bit of a pest but the least of my worries really.
Regards to all.
Christine x

[Rattles]

Good luck vivtwins. I had bp on ankle post bilateral mastecomies (this was before lymph clearance, so had cannuala on what was then my 'good side'). However, the readings were not accurate and as a result contributed to post op problems being missed. Made me very nervous about future surgery.
Anyway, I too have lymphodema in the forearm - and hand. Be interested to hear how you get on. The haven do a really good dvd which shows exercises.
Rattles x

[vivtwins1]

Rattles - I had my blood pressure taken from my ankle after my bilat mx. It gives a perfectly good reading. I'm shocked that your GP doesn't know about the blood/injection on affected limbs.

I am seeing the Lymphoadema clinic nurse on 31/10 as I have swelling in my forearm. I wasn't advised of any exercises or anything so I will be taking your advice ladies...thanks.

Viv xxx

[Birgit]

I've had lymphoedeam for a number of years now, but is well controlled with general massage treatment from a specialist nurse. I am very lucky that this is on offer where I live as it seems to be very much a post code lottery and the lymphoedema service is the cinderalla service in many areas. My main swelling is on the chest wall, neck and upper arm into the back, so wearing a sleeve all the time makes it worse. I always wear a sleeve when doing any gardening or heavy housework to protect the arm, and I am extremely careful not to get scratches or injuries in that arm. When flying I put my sleeve on just before taking off and then take it off once I am back on terra firma - and sofar it seems to work. I never have blood taken from that arm and when I had problems with veins from chemo, they managed to do b/t from a vein in my foot - not as bad as it sounds.
Good luck, and although it seems to be really terrible when you are first dx, it is like everything else on this cancer journey, you get used to it and live with it.
I should also add that I do a lot of swimming, and that really helps with bringing down any swelling, as the muscles move the lymph around and into other areas.

[moorcow]

Hey Rattles, just wanted to say well done for being so attentive to your own well being - it is complicated with both arms at risk / involved but still the rules should apply . Personally I don't like the sound of the preferred arm idea, its like you are giving up on the other one - it seems to me that for bloods and injections they can find a place other than your arm...i don't know about blood pressure -
this may sound very wierd but
a) what do healthcare workers do for bloods / injections / blood pressure for people without arms?
b) I used to work with injecting drug users and they could find a vein absolutely anywhere so if they can, no doubt the nurses can too.
I think its a lack of respect for your body and a lack of imagination that is allowing this less than ideal practice - if you ask about being treated the same as people with no arms I am sure they will come up with something!!
vrey best wishes, hope you Ok

[Rattles]

Its me again.
Thanks so much for your advice and support.
Before I ring GP again, I need to double check your certainty about bloods etc. Remembering I have had clearance from both arms. When I explained to GP my concerns, she asked whether I wanted a Hickman line??!! I said no, of course not, but what about feet? She seemed to think this would not be possible.
At Marsden, before I had lymphodema diagnosed in both arms, had to choose a 'preferred' arm. But do not know what theri position would be post a lymphodema diagnosis.
I was given some exercises but they dont seem to help. will check out the haven ones.
Thanks for your help.
Rattles, x

[Quail]

Oh, Rattles, best practice suggests that it is not ok to have blood from your arms. You should ask to have blood tests AND blood pressure done elsewhere. The Lymphoedema Support Network (UK group--you can google it) has a section for doctors and nurses that you might want to direct your gp to, and you might want to print out the pdf that points to a danger of an increased risk of infection from drawing blood to take with you next time. They also have a course that gps can take, that sounds excellent.
Have you tried wearing a glove rather than a mitten? There is also a product called "swell spots" that I have heard of some people using, but I don't really know much about them. Finally, you might find your lymphoedema nurse and MAKE her teach you how to wrap your hand--you could wear it wrapped at night to help deal with the hand swelling.
Jane, you can measure yourself -- especially if you get a friend to help -- there are pictures on all the sleeve websites. But it would be better if you could see your lymphoedema nurse, if you have one, or maybe your bcn, if she is trained, to measure for you. An on-line company called Daylong seems to be the only one I can find in the UK--anyone else have any clues sing out-- who supply armsleeves to people. I use them 'cause, since I wear a mitten, I run through them quickly. But, if you have been diagnosed with lymphoedema, you should be able to get two sleeves a year for free. I also wear Sigvaris, and have learned to like them, but there are two other brands they sell, mediven and lymphsomethingorother. Sigvaris is cheapest and I liked them better than mediven, but "everybody's different". Also, Rattles is right about the antibiotics, especially since you have had cellulitis once, you should get some to take with you on holiday or in case you develop cellulitis when you cannot get to a gp (Friday night!. Again, ask your gp, and explain why--mine gave me some with no trouble.

[moorcow]

Hey everyone - I got lymphodema for the first time after a mosquito bite on hols - lots to say to you all after that experience
Marie 67 - I didnt use a sleeve to fly home as couldn't get one in greece but it is def a good idea - the flying was really tricky - but i did the exercies from the haven in leeds their leaflet is great - its hard to find on the website but its there and its the best.....I have looked at them all. not sure where you get sleeves but a BCN should know,
Wintersocks - I have a half weight prosthesis - MUCH better for me than the full wieght so if yours not OK go back and ask for a reduced weight one.
Rattles - NO its NOT ok for blood to be taken from that arm - what are they talking about - its a basic principle of lymphodema care that the affected arm must keep its skin in tact to avoid infection - sorry to be so blunt but that is very very bad advice and they need pulling about it - no blood pressure there either, no injections etc.
My lymphodema is controlled as QUail says plus the haven exercises,
cheers Nicola

[Rattles]

I just wanted to come on and say hello. I was diagnosed with lymphodena in both arms - two for the price of one!! I say this because I went with swelling in one arm, so was surprised to find I hide it in both ( I have had clearance x 2).
My swelling is in the hand and forearm on the right, and upper arm on the left. Anyone any tips for coping with the hand swelling. I have a compression garmet and mitten, but the difference in tension means I end up with a pad of swelling on the hand. Not sure what to do?
I had a really good leaflet about cellulitis and lymphodema. When I have a moment, will try and find it on line and post it. I was also given antibiotcics to keep with me at all times, and take on holiday. You can get the sleeves on prescription or a company called Sivigris but you would need professional help with sizing.
I also have regular blood tests due to underactive thyroid. GP says its fine to have blood from affected arm - can this be right?
Any help gratefully received.......
Rattles xx

[Marie_67]

Hi All
I finished rads in Aug and thought all was going ok, I then developed cellulitis 5 weeks after finishing rads, whilst on holiday in Somerset, was given some antibiotics which did the trick. The area around my scar still gets puffy but doesn't leave indents if I press it, I have seen my onc and he said it was still the effects from rads, he has now discharged me so will only be under care of breast surgeon who I see in Feb. I forgot to ask about a sleeve for flying, does anyone know where to get one, I'm not planning on going away until next year.
Jane

[wintersocks]

Thanks Jo.

[Jo_BCC]

Hi Wintersocks,

I have put for you below the link to BCC's publication Living with lymphoedema which you might find helpful to read.

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

Take care,

Jo, Facilitator

[wintersocks]

Hi Quail,

Thanks so much for that. I did not realise that it could be so dangerous. I asked her if it would affect my rads that are starting tomorrow at St James in Leeds. She said no but to tell them. She also told me to start moisturising my arm. But it is too sore/tender to touch.

I guess if I am at all worried about it I can tell them at St James? (as have 3 weeks of rads now). I guess they will have a lymphodena nurse there. My usual hospital is Halifax.

Can I just ask you Q - does that mean now that i have this I will always have it??? has that been the case for you? I will look at the Step up Step out website as you say.

The prosthesis is so so odd/funny after that softie thing, I am quite large breasted and it looks huge. I don't know whether to laugh or cry when I look at it!!!
Your fitter ran a marathon?? wow! - I don't think I moved from the bed (practically) for 6 months before during and after chemo.
Your help/advice has been great and I really appreciate it - Thanks, as I wasn't going to mention it. I just want to get in and out of anything that resembles a consulting room. My anxiety starts the minute I step in.
WSx

[Quail]

Hi Wintersocks,
Down is normal. As I said, I felt the earth rocking under my feet and NOT in a good way. The antibiotics are because they think you might have cellulitis. When the lymph doesn't move very well, it creates a perfect environment for bacteria to breed, which causes an infection of the skin which is called cellulitis. Cellulitis is very dangerous, partly because it can spread really quickly and consequently if it's not caught fast enough can require hospitalisation for intravenous antibiotics. So she is hoping to nip that in the bud. If, after your week's worth of antibiotics are nearly finished your arm is still red or warm or you feel a bit fluey-get to the gp--I needed two weeks worth to clear mine up. If you have any concerns at all phone the lymphoedema nurse or the bcn--they are there to help, and NOW is when you need it.
Lymphoedema is boring and never goes away--that's the bad news. The good news--you won't feel so down after awhile, and it can be controlled.
Vist the "Step-up Step-out" website (via google) for info on lymphoedema. It will tell you more than you want to know perhaps, but it is a mine of information, also the Lymphoedema Support Network (also google). And ask away here-we all know how it feels to have more questions than answers!
I am fond of my prosthesis, even though, being small-breasted, I more often than not go "loppy". You should get used to it pretty quickly. But it was odd getting fitted for it. Didn't help that my fitter told me she ran a marathon the week after her last chemo. Haunted me throughout MY chemo--I couldn't walk to the corner without resting part way. I kept wanting to go back and give her a slap.
Q

[wintersocks]

Ladies,

Well I went to have the prosthesis thing fitted today (what a weird thing that is! and much heavier than I thought it would be). I do hope I get on alright with it.
I mentioned to her about my lymphodema fears an she got the BCN, who got the Lymphodema nurse and she confirmed it is lymphodema. She has given me a weeks worth of anti biotics and I have to be seen by her when i have finished RADS (only starting tomorrow!)
I am little confused as to why I have the antbiotics but the arm is red and she said there was an infection too. But as it was not an appointment I did not feel able to discuss it with her more fully.
I guess I will just have to wait to find out what it all means.
Thanks to all for their help yesterday.
But I do feel rather down about it.
WS

[Teej]

Stressy - that checklist is really useful. I've had a miserable couple of weeks with most of those symptoms on the list. I pretty much diagnosed myself with google in the last couple of days- I didn't immediately think of lymphoedema as the swelling etc is on the side of the chest and breast, my arm is absolutely fine. A bit annoyed that breast surgeon, oncologist, portocath-fitting surgeon and GP all failed to see what now seems quite obvious. They all thought it was some kind of infection in surgery site (cultures for infection come back negative). I've had two weeks of antibiotics and postponed portocath fitting and chemo .
I'm seeing GP again later, hopefully he can give me some advice - or at least point me in the right direction for help.

[Quail]

Mine showed up right before Rads too, and I think it was part of the reason I was so freaked out: just when there was light at the end of the tunnel! My onc acted like rads would make it worse, but it didn't for me, so don't worry about it too much.
Grrrrr, it IS exhausting and makes you mad doesn't it.

[wintersocks]

Quail,

Thanks so much. I will be doing those exercises tonight. I am trying not to panic, but as I have rads it really is the last thing I want to be having to deal with. it's all just so never-ending and exhausting isn't it.
But this is a great help.

Thank-you

WS

[Quail]

Hi Wintersocks and Waterfall
I've been away so I'm late with this thread, but just to say. While you are waiting to get your arm checked there are a few things you can do to help. Try to rest your arm, and keep it elevated, drink lots and lots of water--that helps keep the lymph moving, periodically raise your arm as far above your head as you can and open and close your fist ten to twenty times. Deep breathing from the diaphram also helps, take a deep breath in through your nose until you can feel your lungs completely fill with air, hold for the count of three and then exhale.
The biggest concern with lymphoedema is the risk of cellulitis. I hope Waterfall in particular is taking care--if you feel at all fluey or feverish, go to A&E right away because only antibiotics can help with that.
Gentle hugs to all, don't panic, it is bearable.
Q.

[wintersocks]

Revcat,

Don't know what has happenend there, but the post went weird just now!. In have just done the 'Self Test' and indeeed there are quite marked indents. It does not bounce back.

This is especially worrying for me as I am starting RADs in a different hospital on Tues.
I will definately catch up with my BCN tomorrow now.

Thanks

WS

[wintersocks]

Revcat,

Wow! That's what I wanted - something definative! That's great. It is very hard to tell what is 'Normal' swelling post-mx and ANC (only done end of August) and the beginnings of lymphodema.

I will catch up with the nurse any way tomorrow, but will make a cuppa in a min and try the 'self-test'.

I do hope your weather is being kind to you in Scotland, we have glorious weathwer here in The Pennines.

Thank-you

WS

[RevCat]

Lots of really good advice here. I went to a BCC lymphoedema awareness day (really useful) and the nurse showed us some pictures and told us of a simple 'self test' which can help decide if it is the dreaded lympoedema or just 'normal' swelling. Basically you press gently but firmly on the affected area with the pads of two or three fingers for one minute (you can count this!) than take them away. If the skin bounces back quickly then it's not lymphoedema, if the dents stay put, it probably is. This is no substitute for getting it properly checked, but may help you to decide how likely it is.

[wintersocks]

Tolliebelle and stressy messy.

Thanks Stressy, the 'Signs of'' really helps, I do have one or two of those.
I will try to catch up with my BCN following the prosthesis fit tomorrow.

Thanks both
WS

[stressy_messy]

Hi lady's I would certainly get it checked out as soon as possible.The sooner its caught the easier it is to keep under control.I've had lymphoedema for nearly 5 years and it is much better now and under control.When I was first diagnosed I had to wear a sleeve with a glove attatched and a gauntlit that went over the hand but now all I have is the sleeve and don't have to wear it all the time. Heres a list of signs and symptoms.

Signs of lymphedema

Some signs of lymphedema may include:

• Swelling in the breast, chest, shoulder, arm, or hand
• Area feels full or heavy
• Skin changes texture, feels tight or hard, or looks red
• New aching or discomfort in the area
• Less movement or flexibility in nearby joints, such as your shoulder, hand, or wrist
• Trouble fitting your arm into jacket or shirt sleeves
• Bra doesn’t fit the same
• Ring, watch, and/or bracelet feels tight, but you have not gained weight

All the best Melxx

[Tolliebelle]

Hi T and WS
I am really not sure if you have the start of LD but thought I would let you know my experience.
I had swelling in my arm mostly on the inside of my forearm but also some at the top of my arm. It felt heavy? not really painful and was not red.
I have LD very mildly only 15% but still have to wear the dreaded sleeve and glove really not used to them even now (was dx in June) but if it helps it getting worse!
I had an appt with my BS and pointed it out to her and she then referred me to the LD clinic so I would definitely mention when you go or phone your BCN if you haven't got an appt due.
Good luck and hopefully it wont be LD
Jill xx

[wintersocks]

Hi Waterfall.
I too am worrying I have the start of lymphodema. I am post mx and ANC (in August), My arm feels very tender (like sunburn) and I think is definetly bigger than the other side. It is also pink.
I am seeing aomeone on Monday for a prosthesis fit, I am going too see if I can see my BC nurse too.
I am a little unsure as to what the symptoms are? exactly. Perhaps others can post to tell us?

WS

[Sam_BCC]

Hi T Waterfall

I’m sorry to hear that you are having a pretty tough time at the moment. I’m sure the users of this site will be along to support you soon.

In the meantime can I suggest you give the helpline a call and talk this through with a member of staff who will offer you practical information as well as emotional support. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.

Best wishes Sam, BCC Facilitator

[T_Waterfall]

I am worried I have the beginnings of lymphoedema.
I managed to do have everything they told me to be careful of
I flew to spain two weeks ago and I totally forgot about wear something on my arm, during the flight my scar started to really hurting. I could actually see waves being made across my scar heading towards my armpit. This carried on only for the first day so didn't worry to much about it.
I then went and got bitten by a mosquito one bite on my bad arm and one bite near my scar(would love to know how the little bugger got there). The one on my side went really red and is still red, its never been hot. The one on my arm did get hot and very red but I had a cream from a previous bite that helped.
I then got sunburnt even with factor 30 on My skin was sensitive before chemo now its just silly.
On the flight home my arm started hurting and it hasn't stopped. Just feels a little bit like a dead arm

The only thing that looks like its swelling is my chest and just under my armpit. I haven't read anywhere about swelling on the chest. I hate phoning the breast care nurses, just because i don't want to waste their time.
I am one year and three months post surgery with full node clearance.
T