It's surprising how often you hear from experts that they've 'never seen that before'. I guess if you come up with a symptom that is fairly unusual, they may never have experience it. I had a long section of cording under my breast and down my abdomen after rads. JUnior oncologist didn't know what it was, called senior oncologist in, she had no idea what it was. I came on here and a few other people had had exactly the cording I described! It's frustrating for you though, that you are getting nowhere with it.....can you actually go in and see the bin or ask for a surgeon appointment ?
Hi Charys, thanks for your reply and the link. My hand is still swollen and sore but haven't seen anyone yet (other than GP who seemed to know little to nothing about lymphoedema) so no further forwards. BCN said that my hand being sore doesn't sound like lymph. but the website says it can cause pain. I do sometimes wonder how 'experts' can have such different views of things!
Will let you know if I find out anything further. Thanks again for replying x
I see you've had nobody reply, so thought I'd pop on to see how you are getting on with this problem. I'm not going to be a whole heap of help, as I've had no arm lymphodaema, but it does seem rather odd doesnt it that it's on the arm where your surgery was done and nodes were removed. So, as you've been checked by the GP they will have ruled out other things like infections, cellulitis etc etc, so that's good. To be honest, I'm surprised the bcn hasn't seen you in person to assess the symptom you are having. Referring you without seeing you seems a little remiss. Tricky isn't it, as it could also be something totally unconnected to anything bc. I've done a quick search of an American bc site that I used last year....and found the following...that does seem to indicate that it can occur in the hand...
Hello lovely people, I'm looking for some advice and other people's experience. I had a right mx and sln biopsy last year (widespread DCIS) and thankfully didn't need any further treatment as the surgery got it all. Also had immediate implant recon, everything healed fine. Over the last few weeks I've had a sore patch on the back of my right hand (not all the time, just when washing my hands, putting on hand cream etc) which then spread to just below my knuckles. Over the last few days I've also had swelling around my knuckles, the lower joint of my first finger and back of my hand. It seems to go down a fair bit overnight then get worse through the day and my skin feels tight and uncomfortable. Went to my GP who didn't seem to have a clue what it is and phoned my BCN who said she would pass me on the the Lymphoedema team but didn't think that's what it was, didn't know how long I would wait to see anyone and advised my to see my GP!
Has anyone else had a similar experience or any ideas what it may be? Trying not to get too bothered about it but its hard not to keep checking my hand, has it swollen more etc.... be good to know what's going on. Thanks for reading and any advice or ideas xx