Hi Bahons2
Yes I did get thje pm and there is loads of good information about breast lympho. The more I read the more sure I am that that is my problem. How I get anyone to accept that though and that you can have breast lympho without arm lympho I just don’t know.
Jan
Hi Jan, Moira
Jan, glad the pm arrived OK - I think that ‘stepup-speakout’ is an excellent site - glad you found it useful. Would getting a print-out from the site and showing it your bcn help at all? Is your GP any use? I feel really sorry for you - you seem to be just banging your head against a brick wall.
As far as your painful arm goes, can I suggest taking some measurements of both arms - circumferences, at various points up them, and then repeating this exercise a week later at about the same time of day? This might give you an early warning of any swelling. Also, are you sleeping on your bad arm? That might be making it ache, too.
Why do we get so much conflicting information? Lots of reasons, I think. ‘End of conveyor belt weasel words’, a lot of it.
As far as conflicting information specifically about lymphoedema goes, whilst many surgeons, oncologists, GP and even bcns are good in their various areas of expertise, very few have more than superficial, and often out-of-date knowledge of it. The lymphatic system isn’t well taught at medical school (partly because it isn’t fully understood, it has to be said), with a tendency to trivialise the physical, emotional and psychosocial havoc that untreated/undiagnosed lymphoedema can cause.
As a direct consequence of this lack of awareness, there are not nearly enough properly trained lymphoedema nurses and physios, not enough staff for lymphoedema clinics, not enough custom made garments for problem lymphoedema (altho’ it’s always a problem to the person who has it!), not frequent enough appointment for those who need them, not enough timely referrals (to head off problems before they start).
It’s a scandalous situation. If you use reputable lymphoedema websites (will bump a thread about this in a mo’) to increase your understanding of lymphoedema, your knowledge of it will rapidly overtake that of nearly everyone involved in your cancer care, sadly.
Girls, I know I’m ranting, so I’ll stop.
Will give that thread (called ‘Want more info’) a bump now.
Take care
X
S
Hi
Thanks for ranting because you’re giving me a good idea of why I don’t seem to get anything positive done about this problem I have.
That web site is brilliant with so much information. There are a couple of things on there, not related to lympho, which I have problems with and to read about them and understand that they could be the result of the cancer treatment has been a relief to be honest. I thought it might be ageing which was very depressing because I don’t think I’m that old. It could be age but as they’ve only appeared since my cancer I’m thinking most probably not.
So thanks for that, I’m getting the idea that I have to fight and dig my heels in to get this breast problem diagnosed, even!!!
First grandchild born yesterday. A boy, 7 lbs. I’m thrilled to bits.
Jan
Just read this thread and would like to say Congratulations Jan. What lovely news.
Good rant Bahons!
Take care xxx
Thanks Lynni.
Think I’ll be quite occupied for a while.
Look after yourself.
Jan xx
Hi all
Congratulations Jan, wonderful. At 7lbs, he sounds a lovely little package. You certainly will have your work cut out for the nest few days…!
Lynni, you are so kind about my rants…thanks!
X
S
Just thought I’d let you know that I have too been suffering with an itchy breast. Onc said I had lympho at last appt in Jan - but have prev been told that I have rads damage (from Aug 08) Since then breast was getting itchier and itchier and appeared to have a petal like raised rash around WLE scar.
I happened to mention this to a herbalist who prescribed me some calendula and hypericum cream. I applied it twice a day and started to see an improvement in about three days and after one week it had completely gone! Result!!
Only trouble is I seem to get one problem after another - now am suffering with a very sore area under breast which is exactly where the skin almost broke down during rads. It has been fine for six months but just come back now. I think it is probably because I have been wearing a different bra to support me more - due to discomfort when walking fast - but this has created another problem!!! Grrr…
Hi looby
Thanks for your post. As I’ve said before I’ve been told various different reasons why I have a pink, itchy swollen breast. It actually hasn’t been as itchy for the last few weeks but thanks for the imfo about the herbal cream, I’ll get some of that it sounds good.
I get very sore under my breast too where the rads affected it most. It gets very uncomfortable and itchy then goes sore. I make sure that I dry that area well after a shower/bath. I wondered if it was due to sweating under the breast I suppose the skin must be affected by the treatment for a long time. I don’t know if anyone can throw any light on that theory.
Jan