lymphodema symptoms

How do you know if you have lymphodema?
Today my left arm has been aching really badly -bit like a dull ache. Feels a bit tight around the top. This is the arm that i had lymph nodes drained from. Since surgery it has felt constantly numb / pins and needles
Phoned my breast care nurse -no answer so left message. Am flying to due America on thursday so getting really worried. We were prevented from going away in the summer due to chemo so am terrified something will happen in the next few days to prevent us going away
I really don’t know what i should do -wait for nurse to call me back? / try gp? . I can’t get hold of my oncologist either
Been crying quite a bit today so in a bit of a state. Any advice would be appreciated
Jools

Hi

Hope you don’t mind me commenting. I have Lymphodema and I have a compression garment which is like an elastic sleeve which goes up my arm from my hand.

My arm and hand were swollen and my elbow had collected a lot of fluid. You do need to speak to someone, I had advice from the breast care nurses, and the oncologist and finally a Lymphodema Nurse. There is a website for lymphodema suffers lymphoedema.org/lsn/ and they have a helpline. I hope that your aches are not lymphodema, but my arm is getting smaller, (not my hand yet, youngest son says it is my young hand and the normal one is the old hand) and I can still do things.

take care
Sue

Hi
I phoned the lymphodema clinic today with a similar enquiry. I have no swelling but a very sore crook of elbow and a sensation of a tightness from my armpit to elbow. The lymphodema lady said check it out with breast nurse or GP but lymphodema means there is swelling - if no swelling, it is something else. Maybe mine just hurts cos vein got sore from cannula when i had my anaesthetic

ruth

hi ive just been diognosed with ltmphodemia, i had lymph nodes removed at surgery for mastectomy, and a year after my op my arm was achy and swollen, previously i thought the pain was just my nerve ending waking up! but now i have to wear a support bandage which compresses the arm. when i take it off at night i get a horrid sensation of fluid running under my skin, horrible!! you need to see someone as soon as you can to confirm whether or not you have this condition.im afraid not many gps know much about it, it was down to my oncologist that i was recomended to the clinic. hope all goes well. lynn xx

Oh Jools,
Poor you - why do these things always crop up just before an important event. I really hope you can see somebody and put your mind at rest before your holiday, so you can go and have a brilliant time.
Hugs
Jacquie

Hi Jools

Sorry to read that you’ve had such a difficult day. We have written a booklet about lymphoedema which you may find helpful to read whilst you are able to speak to someone about the symptoms you have. You can read or download it from this link:

breastcancercare.org.uk/docs/bcc_lymph06_0.pdf

If you need a chat to someone for advice and further information please feel free to call our helpline, it opens in the morning at 9am until 5pm (Mon-Fri 9am-5pm and Sat 9am-2pm) on tel number 0808 800 6000.

Best wishes
Lucy
Moderator
Breast Cancer Care

Hi Jools
There was a programme on Radio 4 - Medical Matters, Check Up on Lymphoedema (November 22) which might give you an understanding of the condition and its treatment (you could access it as a BBC podcast or on the Listen Again function. The programme did say that treatment was difficult to access in some areas and that the NHS didn’t usually treat with massage, swellings that were less than 40% larger than the other arm/leg etc - this is astonishing as I would have thought that the sooner it was tackled the better! One of my fellow patients did get help with lymphatic drainage massage through the Helen Rollinson Foundation and that might be a good place to start if you are interested.

Enjoy your holiday.

Blondie

Hi Jools,

I had similar symptons to you about a month ago. I saw the lymphoedema nurse at my breast clinic who gave me 2 compression sleeves (1 to wear, 1 to wash) and a set of exercises. She said gentle exercise of the afffected arm was good, particularly swimming. With this treatment I have gone from being unable to lift my arm up to shoulder level to now where I can put my arm straight up! I only had very slight swelling which I only noticed as my hands are so boney, but that has all gone.
Do try to see a lymphoedema nurse. Mine said catching it early was the key.

Jane

I suddenly developed lymphoedema last year 12.5 years after my initial diagnosis and have no idea what started it.

I also do breathing exercises from my stomach as that’s supposed to help the flow of the lymphatic drainage system.

I’ve also been advised not to do the massage because of where my cancer is and it might be too much of a risk and spread it to other areas so I’ve left well alone with massages!! I do find that if I stand for too long it seems to swell up as well which is weird.

Pinkdove

Pinkdove – Snap! I suddently developed lymphoedema earlier this year, 10 years after my lumpectomy & axillary clearance (19 nodes taken) – like you, no idea why this appeared so long after surgery. My onc sent me for CT & MRI scans, which didn’t find anything, and my hospice sorted me out with a sleeve (that I rarely wear . . . ). It’s a bit annoying & inconvenient, but not painful, and doesn’t cause me any particular problems, other than the odd tight t-shirt sleeve.

I’m interested in the breathing exercises – any info I could read? Tried self-lymphatic drainage massages and arm exercises initially, but these didn’t really do anything.

Jools - hope you got to the States today!

Marilyn xx

Hi Marilyn

Glad you’ve replied to me as I was going to try and find one of your messages. I seem to remember that you’ve been on capecitabine for 3 or 4 years? I’ve just finished my 20th cycle and my oncologist wants to bring my scan forward to next month (due in January) to see whether to take me off it or not. I’m really anxious about her taking me off it because I feel so well on it (no sore hands or feet due to low dosage) and if you could tell me what your hospital do in looking after you, I can go in and say I know this lady who has been on it for a lot longer than me. I don’t know if she will take me off it but I’m the only person she’s treated for as long as this - according to other friends of mine who go to see her, she calls me the capecitabine queen!

Regarding the breathing exercises - the Haven produce a DVD on lymphoedema although it’s more aimed at prevention but I just block my left nostril with my finger (not up it!) and breathe in slowly and let my breath out slowly - you’ll find that you will automatically breathe from your stomach. I haven’t done any arm exercises for ages as it just wasn’t doing anything. My lymphoedema nurse also believes in breathing from the stomach - not sure whether your nurse might have some info on it?

I have found though that if I stand for a length of time it increases my fluid in my arm. Mine is called as moderate and is mainly in the middle of my arm.

It’s really frustrating isn’t it after all these years and not really knowing what triggered it.

Pinkdove
xxx

Hi Pinkdove – thanks for the breathing exercise info – will try it.

And yes, I’ve been having capecitabine for four years, and will stay on it for as long as (a) it’s doing something for me and (b) I can tolerate it. Each time I see my onc team (led by Dr R Welch at the Christie Hospital, in Manchester), we consider taking me off it for a short break (I still have foot problem side effects) but always decide not to make any changes, as I’ve been stable for some time now.

We all respond so differently to our treatments, and our oncs have differing views on how to manage our mets – staying on Xeloda long-term might be OK for me but not so good for you. Perhaps you can find out why your onc wants you to have a break – might be to test whether it’s actually doing anything for you, and, if so, you might go straight back on it if further scans show progression.

Hope that’s useful, and good luck with your brought-forward scan!

Marilyn x

Hi Pinkdove/Marilyn,

My hospital are fed up with me mentioning Marilyn’s ongoing success with this drug (M - if your ears are ever burning on a Thursday p.m., this is the reason!) My onc keeps telling me my body will need a break but I am the same as you, Pinkdove, no unmanageable side effects. This seems to be the only reason they can come up with for having a break from it but I would rather continue than risk almost certain liver progression.

Jenny
xx

Hi Marilyn and Jenny

Thanks for both your comments.

I think the main reason why my oncologist is concerned is because I’m the only person she knows who has been on it for just over a year and I think she probably feels she’s in unknown territory.

I am responding well to it and feel that while I am I don’t want them to mess with it! I remember my oncologist saying last year that they might consider taking me off it for a rest (which didn’t happen because I was improving all the time) but she said, at that time, that if it started to grow again then she wouldn’t be able to put me back on it, which seems to be different to what your oncologist is saying.

I totally relate to what you’re saying as well Jenny about preferring to stay on it. I feel so well on it now and am completely different to last year. I’m just so grateful to my oncologist for giving me the opportunity to try it and it proved to be the right decision.

Marilyn - my mum was treated at The Christie way back in 1982 (lived in Preston) and it’s supposed to be an excellent hospital. My oncologist is brilliant and I’ll probably mention your doctor to her if she does have any concerns about me remaining on it.

Good luck to both of you - long may we continue to be well!!! You may well have burning ears when I next see my oncologist on 22 December!

Pinkdove
xxx