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I had my mastectomy, chemo, radiation reconstruction in 96. Then in 06 or around that time I noticed swelling in my left arm the side of my breast cancer. Although I've never been diagnosed with lyphodema my oncologist informed me indeed it was. It's not severe but it's always larger than my right arm. The problem I have is severe itching almost like pins and needles at times. It comes and goes. I'm not sure what causes it.
Just wanted to say I know how you feel, was told I was at risk for lymphoedema 3 years ago and had it monitored and was discharged after 6 months and just told to make sure no injections, wear sleeve on flights etc. This xmas following further recon surgery it has flared up and while only 10% I have to wear sleeve everyday now to try and get it back under control.
I feel exactly the same hate the idea of this being a long term and even life management of wearing the sleeves especially as everything seemed ok initially.
All I can do is what they tell me should help and hopefully they said may be able to get back to occasional wear and taking care once back under better control. My nurse said it a case of wait and see so its just fingers crossed (but not too tightly lol). I think sometimes they give you worst scenario, so hope things will get better for you.
I too am sorry that you are having to deal with this, and it is a painful reminder of the long effects of treatment.
I was unsure whether to reply as what you really want to hear, no doubt, is that you won't have to wear a gloove/sleeve etc and I can't promise you that.
I developed lymphodema in my right hand last year and it spread to my lower arm. I don't really know what the finally trigger was, except that I had very dry hands in the week preceeding the swelling. Like you, I was really distressed by the throught that I would have to wear garments for ever. As I understand it, hand swelling is tricky to manage for the reasons you give. I have often thought I could cope with an arm sleeve, if only I did not have to wear a wretched glove!!
What I can say, is that there a range of things you can do and that your swelling has the potential to improve. Over a year, mine has got dramatically better and is now classed as mild. I have tried most things - the exercises, taping, SLD and the best for my hand is a spikey massage ball which stops the tissue going hard and disperses the fluid. There are sites where you can buy funky compression sleeves too. I think it does get easier to cope with, and I don't have to wear a sleeve or glove if I am 'relaxing' and I elevate my arm.
I am not on the forums so much these days, but PM me if I can help. I found the isolation and not knowing where to go for help really hard.
Good luck, Rattles
I am so sorry this has happened to you. I have not had experience of this, I had wle and snb in September and of course am aware, like you, of what precautions to take from now on. It seems so unfair that this has happened so long after your treatment for cancer.
May I ask you what sort of strap you had on your arm and whereabouts on your arm is was. It just might be useful info for the rest of us.
I had a mastectomy, 9 lymph nodes removed, chemo and radiotherapy 8 years ago and then reconstruction 4 years ago. Since then I have always been careful about not having blood taken or blood pressure on my left arm and I have never had any problems with lymphadoema until..............
At the end of August I did something really stupid and I have been kicking myself ever since. l was going to play golf and decided to put a strap on my arm as it felt strained as I had been using it on my good arm when playing badminton (for tennis elbow). Wore it for 4 hours and that evening my rings felt tight and my hand was swollen.
Eventually I got an appointment with my lymphadoema nurse and got a glove to wear. Having worn it for 6 weeks there was a bit of improvement with my hand but an increase in my wrist and just above it. l saw my nurse yesterday and she is ordering me a stronger glove as well as giving me a sleeve to wear, last night my hand was swollen again so am not going to wear the sleeve until the new glove comes.
Anyway what really depressed me on the way out was when I asked how long might I have to wear the compression garments she said I would have to wear them forever now as the damage has been done. I think I only have mild swelling. Any thoughts or experience on this news? I would love to hear from you. Can't believe this reminder of my bc has happened.