hi does everyone have regular appiontments at their clinics? ive not had a review for about 5 mnths now and was wondering whether to ring them and sak why .must say the lymphodemia support at my hospital is hopeless ,dont think a lot is known either by the oncologist or the surgeon that i see ,ive mentioned my arm aches and today is swollen ,could be that it was the light gardening i did yesterday has inflamed it somwhat ,but even so i think regular appointments are esential to keep and eye on things .how do other areas compare with mine ? id be very in terseted to hear your opinions .lynn x
Hi Aroma,
Do you mean a follow up at breast/oncology clinic or at a lymphoedema clinic? I have 6 mthly oncology appts but the lymphoedema clinic is more as and when I need it.
I would ring the secretary/receptionist and ask for a review appt. If you think your arm is more swollen then ask for an urgent appt and explain why.
Good luck!
Rowena
Hi aroma
Your arm seems to give you a lot of trouble a lot of the time and 5 months is ages when you are in so much discomfort and not improving, either. I agree with Rowena and think you should now be pestering for an appt as soon as possible.
Before I left the UK, appointments at my clinic were officially every 6 months, but if a problem arose at any time they were pretty good about seeing people quickly.
Take care
X
S
Hi Aroma
I attend a lymphoedema clinic when I need to. I think it is important to get a proper diagnosis and advice and pressure garments if you require them for a specialist.
I don’t think regular appointments are necessary at a lymphoedema clinic once you know what you are doing as this is a long term condition and once we know what to do to manage it, just need to call for a n appointmaent when something changes or we are worried about something.
From what you say I don’t think you attend a lymphoedema clinic and if you think you may have lymphoedema please ask your GP or oncologist to refer you to your nearest clinic. You may need to find out where this is yourself so you can tell them!!! The Lymphoedema Support Network may be able to help you and google will lead you to the site for contact details.
Good luck
Tweeks123
Hi I have breast lymphodemia and I am starting to have massage in novemver at the lymphodemia clinic I went last week spent over an hour chatting about it I really know nothing about this and she showed me the gentle massage that I will be getting which will take over one hour to do…was so gentle wonder if it really works… ive had a horrid 7months off work just got my self back to work now this twice a week ive worked it around work times having it done when ive finished my work…I have ti drive miles away to this clinic I really hope its worth my while has any one else had the same problem ? Just has I thought I was getting back to normal and feeling my self again now this…they have told me to get a big bra something like my mother would wear…is there anything I need to know and anything I can help myself with ? And does this massage really work and does it ever go away ? Or am I now stuck with this for life ? X
christine x
Add Comment
alise
Member
8/24/11
Hi Rozita
I was dx with arm lymphoedema 3 years after lumpectopmy and then last Marcg over 5 years since surgery it appeared in my breast!! NIghtmare!! I have been given some plastic knobbly stuff to wear in my bra and am going to physio for my arm as they think this will help breast. I think these things just control it really but lympoedema nurse said they should make it “go down” and be more manageable.
I know its another bloody thin to cope with but I just try to think it could be worse!
Take Care
Alise x
Add Comment
norberte_1
Member
8/17/11
post deleted
Add Comment
rozita
Member
8/17/11
Has anyone else had breast lymphodemia ? Does it means I will get it in my arm as well cos it aches some times .x
Add Comment
norberte_1
Member
8/16/11
post deleted
Add Comment
rozita
Member
8/16/11
Hi all been havin problems for a while the breast Tht I had a lumpectomy on has been very swollen and uncomfortable even obvious to look at so much bigger thn Th other despite a lump taken out the breast unit hav been good it’s a year since i finished all treatment so they gave me a mammo n scan n thers no more nasties. Thank goodness but they think I need some physio I went a few months ago but the nurse didn’t really do much n was very gentle Now it’s worse it’s painful n uncomfortable but just wondering if it’s worthall tg hassle of Th hospital appointments n time n parking etc. Has anyone else had this Is ther a chancecit could get worse what should I expect. Any advice would be good x
Thanks for that Zeppa it helps a lot x
Christine x