'Not getting lymphodema' stories please

Hi all,

I’m a great fan of this forum, it has/is helping me through this terrible time by allowing me to share my worries and get advice just when I need it as do we all. This I obviously a great thing but I think that because of this the forum topics can be heavily weighted on the bad news/worried side.

I have been told that I need a full axilla clearance and, due to this forum, I’m very well informed about my increased risk of lymphodema. I was hoping that some of you who have had this done would share with me stories of how you haven’t had any problems and how you have managed to keep it at bay. I’m hoping that there are quite a number of you but because it isn’t a problem it doesn’t get shared.

Many thanks x

Hello, I’m a ‘didn’t get lymphodema’ story, against the odds!

Had full axillary sampling, axillary clearance, surgery to remove a stray node, plus radiation to chest wall, neck and axilla. The more times they go in and fiddle about, the greater the risk. I think that puts me at top-risk category. Admittedly, I only finished radiation iat the beginning of March, but according to the lymphodema nurse, I’d probably have developed it by now if I was going to.

I do have a very slight swelling - 3% - in that arm, but it really honestly is not noticeable. I don’t feel it, and don’t see it, and I’m quite skinny. It was a little bit worse immediately after surgery but then everything feels so odd for such a long time with nerve damage, it’s not surprising I had a stiff, achey arm.

I carried on as normal - lifting small children, pushing a buggy, doing all the usual. I do make a point of sitting with my elbow above shoulder level in the evening, if I’m watching a film or chatting on the sofa. And I do have a sleeve - just to wear if I feel I need it.

Best of luck with it.

xxJane

ps - I should have said you still have to avoid getting an infection in that arm, as that represents a new risk of lymphodema. So wear gloves when you can and use TCP!

Hi SCACO

I have mild LD (4% in upper arm only) and my treatment is more prevenative than anything else, I have also chosen to wear a sleeve for this reason.

Elinda posted this on my thread regarding exercise and you might find that doing these will help you to avoid LD:

"I also found The Haven website very helpful - I’ve put the link below. If you scroll down you can download the fact sheet which has exercises in it. Also there is a video clip of a lymphodema nurse showing and explaining exercises. I liked being able to see someone doing the exercises rather than just having a leaftlet. This is largely the routine I’ve chosen to follow:

thehaven.org.uk/how-we-can-h … ymphoedema"

DaisyGirl xx

Hi There,
Ive not touch wood had a single problem and had my nodes taken 7 weeks ago. Full arm movement and if anything its better than before as it was stiff from mountain biking now its more supple because of the exercises. I think you only see the worst of everything on here because people come on here because they are worried. I thought i was going to have all sorts after what id read.
If you do everything you can to prevent it thats all anyone can do.

Hi SCACO and others

I had WLE + ANC last November and to date I am fine. I have full movement back after daily exercises for first 3-4 months. I have also started to go back to the gym, and doing activities I used to do prior to operation. I do build it up slowly though. Am very careful never to overload affected arm. I rather walk six times to the car and back to carry my shopping in. Also I bought one of those shopping bags on wheels (I know, not a good look) but perfect for fruit and veg shopping at the market. Recently went on hols, used factor 50 and kept arm mostly out of the sun. Also protected it from mozzies. Lastly, when gardening, I wear an old long sleeved fleece…

Also I have a question for those with mild swelling 3-4%. How were you diagnosed with this, did you check yourself? I do measure both my arms from time to time as I would not notice a small swelling? Or does it come with other symptoms?

Thanks!
Nikki

Hi SCACO,

I’m also a ‘didn’t get lymphodema’ as yet girl, I have chest wall rads to go yet after chemo, so my risk of developing it are still very much there. I was initially a little worried about developing it post surgery, but that has disappeared since starting chemo.

I had full clearance at the end of April, which brought other challenges to deal with, nerve regeneration, supersensitive skin, cording (still some residual) - I didn’t know about these issues so was completely taken a back when they happened as I wasn’t prepared/informed. I’m not a ‘head-in-sand’ type of person and usually need to know everything, but for some reason I seemed to have adopted an ‘it’ll be what it’ll be’ approach and deal with the ‘black and white’ when/if it happens - so unlike me…

Having appts with a Physio helped, and I believe not everyone gets access to a Physio as standard, if not, request a referral from your GP. I also got aqueous cream on prescription as applying eventually helped with the supersensitive issues (felt like skin had been cheese-grated). I still moisturise and always in a light upward motion (doing upper arm first and hand last) towards armpit to keep lymph moving in that direction.

Advice has generally been to look after your ‘bad arm’ - no injections, no blood sampling etc and not to carry anything heavy on ‘bad arm’ that will restrict the lymph vessels just under the skin ie shopping bags, not wear restrictive clothes, and I wear suncream so skin doesn’t burn and insect repellent to keep stingy/bitey things at bay. You just need to be sensible and try not to injure your arm, not having cuticles cut, not shaving armpit (not a problem on chemo currently)…

Hope this helps a little
Bev x

Hi SCACO

I had mastectomy and full node clearance back in January, followed by 6 FEC (the last one will be Friday) and no rads.

I too dread lymphodema, but, for the moment at least, haven’t experienced it at all (there, I’ve probably jinxed myself now).

I think that we are at less risk if we have a BMI on the lowish side of normal.

hi staycalm, i had mx and node clearance sept last yr and touch wood up to now have had no hint of lymphodema xx

NIM41 scaco and others

I had a full node clearance in November also and do not have lymphodema, but i am on a trial(can’t remember what it’s called). I have my arm measured every 3 months with a special machine. I have a 4% swelling. Any swelling under 10% is not usually treated, but on the trial, if the swelling is between 3 and 7%, sleaves are given to see if this can stop it developing into lymphodema. Getting my arm measured gives me peace of mind that if things get worse, it would be jumped on quickly as i,m already in the system so to speak. I think anyone who has had nodes removed can be part of the trial, so if your interested in this i would ask your breast care nurse. It maybe that it is only local to me (Manchester), but i,m not sure.

Maria x

HI

I had full node clearance in Aug 2010 and haven’t even had a hint of lymphodema. I made sure I did the exercises for months afterwards and if I cut myself on that arm I clean it up and put a plaster on quick. I also take antibiotics on holidays with me in case I get a mosquito bite but other than that I don’t even think about it.

Best of luck
Rachel
x

Hi SCACO

I had an SLNB last April, and a partial mx with further lymph node removal and immediate LD recon in Nov. (Chemo in between the two and rads in Feb/Mar).

Like you I have had concerns about lymphoedema, however touch wood I have been fine so far. I have measured my arms occasionally (and again just now!) and they are exactly the same. I have been careful to follow the recommendations (no injections, blood pressure etc on affected side) and have tried not to carry too much on that shoulder. Mine is on my right side and I used to carry my handbag on that side, so I had an excuse to go out and buy some new bags, the kind that go across your body so the weight is on my left shoulder now. Also, I have been having physio ever since my surgery which my hospital is a big fan of. That has probably helped too.

I would say try not to worry, take sensible precautions and do the recommended exercises after your surgery. Good luck and very best wishes to you (and everyone) xxx

Hi all

Here’s the BCC publication ‘reducing your risk of lymphoedema’ which you may find useful:

breastcancercare.org.uk/healthcare-professionals/publications/treatment-and-side-effects/*/changeTemplate/PublicationDisplay/publicationId/103/

Best wishes
Lucy

SCACO, I’m another ‘no lymphodema’. That isn’t to say ‘no problems’ because the sensation in my upper arm and around the scar isn’t back to normal (nerve-generated pains) and I have had trouble with seromas, which are uncomfortable but much less serious. I find that moving and especially stretching that area reduces the discomfort and that I am less aware of discomfort as time goes on. Besides the BCC exercise book, I found that it helped to keep the affected arm elevated part of the time when resting. On the other hand, I only had a WLE, not a mastectomy, but you should get advice on how to minimise the risk.

Cheryl

hello
I too am a no lymphoedema girl. I had an axillary clearance and mx 14 years ago, and since have had reconstructive surgery, a further lumpectomy and rads to chest wall and recon breast which also hit axillary area. I’ve pulled muscles in my shoulder from lifting planters on the patio, blended a finger end in a hand blender (all on my ‘dodgy’ side). I know I’ve been very lucky but I just wanted to share a positive experience. There will be lots of people who have moved on from the forum and are well and minus lymphoedema, I’m sure. I did have one false alarm - it was just my fat arms!!
good luck to you all xx

No problems here either - 33 nodes removed, 35 rads and Cyberknife to the shoulder joint. Frequently heave heavy shopping around and have had that arm yanked many times by overly frisky dogs - no problems at all (so far!). Good luck.

finty xx

And me … mx , full clearance 7 years ago, + more surgety 3 years ago… 2 lots of rads … no LD (as yet!)

Good luck

Mo

Thank you all so much.

It is really reassuring to hear positive news and has made me feel much more confident about carrying on, albeit with more caution, as normal. It’s also nice to know that I can blend my fingers if the urge takes me and still be ok! Ouch.

I intend to contact a lympodema clinic, (it’s is one of a few specialist clinics in the country but only down the road) to maybe book a session to be taught exercises, etc. Forewarned is forearmed as they say (whoever they are).