Breast Cancer Now Forum

Yes it’s rubbish isn’t it. Sometimes I try to imagine what it would be like to he cancer free AND have no lymphoedema - it would be amazing not to constantly be thinking about my arm and not have strangers asking me what’s wrong with it! ... View more

Hi whitelily - yes I ruled out the lymph node transfer in 2015 due to the risk of lymphoedema in the donor site and I chose LVA as it was 'risk free' ie it couldnt make my arm worse and that the worst outcome would be 'no change'.  I didnt expect a cure, I just wanted to go without a glove if possible and maybe not wear a sleeve for special occasions. I certainly didnt expect a rapid worsening.   I do feel that I have no choice but to try LNT surgery now because my arm has progressed so much in a couple of years.  They do use fluoroscpopy these days to identify superficial lymph nodes and my surgeon has a good track record so I am doing it in 4 weeks time.   I hope your arm stays under control - typical that the broken bone was that side!! ... View more

Sorry I only just saw your post. I had the LVA surgery repeated in 2017 and it worsened again. My arm measurements and volume keep going higher and I am now wearing higher compression, custom fit garments and having MLD regularly to try combat it. It’s been miserable to be honest. I am now going to try lymph node transfer in an attempt to reverse things. ... View more

Hiya - when I was first screened I was told I was a good candidate, there were a couple of clear channels working, and my swelling was only 6%.  I was told that 85% of people see some kind of benefit and 15% see no benefit, but the option of it getting worse was not mentioned as it had not happened.  I'd be interested to know if you were told that they now have a patient who has got worse?.   It is now 4 months since my surgery and my arm is still much larger, with more pitting and is a different shape from pre-surgery (worse). At last official measurement it was 18%  I also self-funded, and it upsets me that it is worse, but with all my treatment for cancer and lymphoedema, I can only 'rest' when I have tried everything in my power to improve things - if that makes sense. So in that respect I am glad I tried and who knows there may be some benefit that I am not aware of (eg I have never had cellulitis, and maybe it will help keep that at bay - who knows).   Good luck deciding, it's hard I know ... View more

Hiya aisher2000 - glad to hear your elbow should resolve itself eventually - real bad luck to have done that, I do feel sorry for you.   My arm is unchanged, I still wear a sleeve all the time, but noticed that my arm doesnt swell as much when I do take it off in the evenings so I am hoping that is a 'sign' that the suregery might still work, but the weeks are going by and I am aware that as time goes by there is less chance of it givin me the improvement I had hoped for.   Shazmo - I hope it comes sooner rather than later! ... View more

aisher2000 oh no what a disaster!  I think I triggered my own lymphoedema by falling and smashing my elbow a couple of years ago, so I can well imagine how swollen it is.  I hope it doesn't affect the success of the LVA surgery in the long run.   Surgeons a bit stumped about my arm - said it might go down in the future, but obviously we don't know.  I am stumped too - there is no logical reason for it to get worse as all they have done is create some drainage - even if it didnt work there doesn't seem to be a any logical reason why my arm would be worse.   What I have noticed in the last couple of weeks is that when I don't ear a sleeve my arm doesnt swell.  Also the hot weather hasn't really made it any worse.  So although it's larger it is perhaps more stable?  Either that or I am clining on to any small hope!   Good luck with getting your elbow fixed and healed xx ... View more

Well I do know it was a lot bigger 1 month after surgery so the only good news is that it has gone down from that, but they think the anastamoses have failed for some reason (but still doesnt make sense that it would get worse - it should just stay the same).  Will just need to see what happens over the next three months I guess. My lymphoedema service just told me to sit it out and see what happens. Good luck deciding what to do about recon.  I had both breasts completely removed in the end and don't regret it - gives me peace of mind not to have any breast tissue and to know that any lumps will be very obvious! ... View more

I am just back from my 3 month follow up appointment and my lymphoedema has got a lot worse since the surgery.  No idea why and it seems I am the first case where this has happened but my arm volume has gone up by 250ml.  Using my own calculation that means my LE has gone from about 7% up to 18%. It was visibly bigger so this is no surprise but I am still upset to have it confirmed and to realise it is so much worse.  I had only prepared myself for the worst outcome being no improvement. Still glad I tried, but now feeling very worried about what this means for my arm in the future ... View more

Hi Shazmo, my infection has cleared up, but my arm is still bigger than pre surgery.  I am trying not to let it get me down but it is!  I had a regular check up with my usual lymphoedema service last week and my arm is 1.5cm bigger than 4 months ago, but the therapist says that she thinks it might be post-op swelling and not lymphoedema and that I should wait and see what happens.  Very frustrating only because I had a few days where the surgery appeared to work very well before this swelling.   my other arm is fine and has reduced in size by 0.5cm.   i should say that I still don't regret having the surgery - for me it was important to at least try and I am still hoping for results further down the line, and I will report back in August after my 3 month follow up ... View more

tricky with two arms as I couldnt do much, just stared at the ceiling fo rmost of it and watched the surgery on the tv.  You can take music with you or with one arm perhaps you could watch a movie or read a book on a tablet - not sure as it wasn't an option for me   ... View more

aisher2000 I had my stitches out at GP as I don't live near Oxford, not due to go back there until August for a re-measure.  Its 18 days since my surgery and I am not back to normal.  I usually swim and do weghts at the gym etc, but my stitches are still sore and with the infection I am still being kind to my arms and not doing any lifting or weights. I think I will give myself another week before I start trying my normal activities   Like Shazma I was rejected by CCG but for about 4 reasons so I didnt bother appealing, it was always a long shot!.  I tried to justify the cost of paying by working out how much money I might 'save' on MLD over the next 10 years and as you say, I just felt I had to do something.     ... View more

aisher2000 - nothing major.  I have 6 sets of stitches in total and only one set got infected (I think the dressing got wet).  I watched it for a couple of days but it was getting worse so I started taking my emergency antibiotics and it is healing now.  I didn't feel ill or anything (I have never had cellulitis so not sure exactly what I would have felt like).   My arm has been more swollen this week, but I guess the infection didn't help, plus it has been very warm so trying not to read too much into that! ... View more

Good luck with it.     Most important thing was to not drink too much on the day so I could avoid a catheter 🙂  I also allowed myself a few days of doing nothing afterwards to try and give myself the best shot at success, so line up some TV and comfy pillows, prop your arms up and relax!   ... View more

I found this thread very useful when I was trying to weigh up whether to do LVA surgery, so i just wanted to say hello as I have now had the surgery in both arms and would be happy to answer any questions from anyone who wants more info. Surgery was done 2 weeks ago under local anaesthetic in Oxford.  I had three surgeons and it took 5-6 hours.  I had preventative surgery in my left arm and I am hoping for an improvement in my right arm.  Had my stitches out today and mostly look good, but have one infection so taking some antibiotics.   I have to say I noticed an improvement right away - within 24 hours my arm looked slightly different and felt lighter. I am told the main improvement will be over the next 6 months so I am very hopeful that it will help get my lymphoedema under control.   The doctors are impressive - cutting edge stuff- but they have also been really nice to deal with and very helpful post-op - called up to see how I was doing and are happy to answer questions over the phone.   Its expensive and I failed to get CCG funding, but my lymphoedema had progressed so much in just one year that I wanted to do this before it progressed any more and left me past the point where I might no longer be a good candidate.   Just wanted to share my experience so far and thank those of you that did the same! ... View more

Bettypoppit I would be up for taking part in a fundraiser in memory of Elaine. Have often thought about doing the London moonwalk and can't think of a better reason to do it than in honour of LainieG.   Like many of you my head is full of worries but I always try to think that worrying is not going to stop anything, only spoil any good times I might have.  A gazillion years ago I played rugby and we were always told to 'play to the whistle' - keep going until the referee blows up - even if you know you have messed up.  So I 'play to the whistle'.   lots of love ladies xx  ... View more

Hey Nicnac, how are you?  Been keeping myself busy with fundraising for the school, PUS I got offered a job - the one with the really awful interview back in April...how weird.  Anyway I now need to go through pre-employment screening and medical, so not actually there yet as they need to say whether they think I am ok to work.   I am having LVA surgery on both arms on 24th May to try and halt/improve my lymphoedema, so preparing myself for a long day of surgery and a couple of weeks in bandages but secretly pleased that I will be forced to put my feet up for a couple of weeks as its been a busy time.  Didn't get CCG funding for it though so having to pay.   GP agreed to let my try Femara instead of generic letrozole and that seems to have stopped my awful migraines - could be a coincidence but I don't think so.  Hot flushes much worse but I can live with that.  This weeks worry s that my left leg is hurting all the time.  Probably muscular, but I have that little 'bone thing' on my sacrum and the doctor did say that if it grew the chances were I would know it because I would get pains in my legs.  Always something to keep us worried.   Not taking any day for granted and had a big 51st birthday party a couple of weeks ago to celebrate still being around.  Despite all the aches and pains still feeling very lucky and thinking of Lainie every day  xx   ... View more