I have suddenly had my right hand swelling on Saturday, went to doctor Monday as I had read post re Lymphoedema, now worried, I had a WLE in Nov 2008 with another op in Dec 2008 for further lymp node removal then Chemo and rads. Bumbled on not a care in the world for the last 12 months feeling I have beaten this bloody thing, then get this!!. Now have emergency appt with breast care next weds, with possible further mammogram ( had one in March which was clear)now what am I to expect, now have real fears the cancer is back. I am active have horses, breed dogs and work a market stall 2 days a week, just do not have time to be ill again!. Is the treatment for this simple, does it affect your use of hand arm etc, I just put the joint pains down to the tablets, and had no idea that this could strike at any time after, I thought it happened a few months after the ops. Now really depressed, worried and really pissed of, please let me know if this will be with me for ever. Thanks x
So sorry you are struggling with this issue; it seems people with Lymphoedema have to fight for attention. You need to push for help - there are specialist lymphoedema nurses who can help with massage techniques. There are also lymphoedema sites which might offer more advice. Do Google ‘Lymphoedema’ because there are specialist supportive sites out there in ‘Googleland’ who may be able to help.
Cyber hugs,
AlexG
Hugs Highlandlady,grrr your post has made me mad in that yet again the effects of lymphoedema have not been fully explained to a breast cancer patient. Don’t know why Im so suprised as it seems to be a very common practice.
The good news is that you are being seen and please make sure that you do get a referal to a lymphoedema specialist,my bcn was rubbish and told me to leave it for a year to settle down ! I knew something wasn’t right and pushed for a referal and found that had it in boob,trunk and arm,hate to think how bad it would have got if I did leave it for a year ! The sooner you get seen with lymphoedema the better your chances are of managing it. Once you have it Im afraid there’s no going back but for the past year mine has been behaving so well but has started to play up a bit now,actually have an appointment this morning.
There are loads of dos and donts,don’t put strain on arm or carry anything heavy,don’t have injections or blood pressure taken on that arm, watch out for insect bites,grazes,cuts,sunburn anything that compromises your skin,you can develope cellulitis,which isn’t very pleasant, get a supply of emergency antibiotics from gp to counteract this, don’t go into jucuzzis or saunas.If you are flying take extra advice from lymphoedema nurse as change in air pressure can affect it. I have been shown how to self massage and have been fitted with a compression sleeve which initially just had to wear when doing something that would aggrevate my arm but am now having to wear every day in the hope that arm going to start behaving a bit better. I also am lucky enough to have MLD(manual lymphatic drainage) every couple of months, who would have thought you could get topless massage on the nhs ! That’s me topless not the person giving it !
Yup it’s a pain at times,literally,and I have been lucky in that I have been able to manage mine,however, it has stopped me digging my garden and just have to be careful with what I do. Bit of a coincidence but after this cancer milarky struck I decided to change career direction and I have a market stall twice a week too ! It hasn’t stopped me from putting it up and taking it down in all weathers ! Oh and the upside is…have managed to persuade my hubs that I can’t possibly do any more ironing…ever…every cloud !
Good luck with your appointment,let us know how you get on.
Sandra x
Thanks sandra44, Its just so hard after 2 years from being diagnosed and then its back again to haunt you and play havoc with your life, bad enough the scars, blue rads spots and mis matched boobs as a constant reminder! then this. I sell pet foods on the market, thankfully OH purchased a custom built trailer for me so don’t have to put up bars and tarps, just wind out my roof, open doors put boxes on the stands then set to go, but it does involve a bit of lifting…ooops!. Oh well hey ho, let see what can be done next week, just hope when I see the PS tomorrow that he will still go ahead with the assymetry op!
Good luck wih your appointment this week. Oooooh a custom built trailer… I want one ! Am afraid it’s the old clanky bars etc for me. I have a cake stall,just getting into mincepie overdrive at the mo ! My first Winter so am adding the layers at an increasing rate of knotts and finding out about the joys of thermal longjohns !
Sandra x
Oh well folks, ended up with a lymph biopsy yesterday, now have the 7 day wait for results… expected to go in for appt, see a specialist come out with a compression sleeve and book a holiday… in my dreams! Now been told that the massage/sleeves are outsourced and SHOULD hear from them soon, maybe OK to go on my holiday 15th Dec to visit my son in Bahrain for xmas, but not a quick all incl holiday in Canaries we had hoped to be going on with:(
Just have a nasty feeling about this I had noticed a small swelling under armpit but put it down to the lymphodema, now the swelling has gone down in my hand, but when the specialist measured my arm there was a slight difference yesterday. Oh well here we go again, done the tears, asked why me, now have life on hold for another week. Trying to find out as much info about cancer returning in the lymph nodes, but nothing seems to be available as of yet. Never mind happy face on for Saturday and Tuesday market days and have a laugh with the punters!