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another 'have I got lymohoedema' question. ..

5 REPLIES 5
Sika
Member

Re: another 'have I got lymohoedema' question. ..

I rang the breast clinic and they were as unhelpful as ever. I have to go through my gp, so a 2 week wait for that then the gp wont know anything about bc related lymphoedema anyway, I bet.

Im wondering if it is just actually cording? I had this initially but it ended up going away and causing no pain at all for months - although I can still feel the cords. The main thing is the stretching and reaching pain. Awkward moments at the markets when it looks like I'm being uncooperative by not fully reaching for my apples over the stall. But maybe it is mild lymphoedema. I bet the gp will say wait and see ... it doesn't look swollen.
LoneFox
Member

Re: another 'have I got lymohoedema' question. ..

Hi Sika,

From past personal experience my advice is that you MUST insist on getting a definite diagnosis for whatever it is that's not quite right in your arm.  I myself started with a tight feeling soon after a mastectomy.  When I asked Staff about it I was told that it was something called 'Cording' and it was just an after effect of surgery.  Following on from that my arm still had this tight feeling (like something tugging right down my arm...... more noticeable if I needed to stretch to reach for something - my hand/wrist area couldn't fully function - like string on a puppet being pulled tightly and not allowing my arm to have the full range.  It really hurt too!!  Months of discomfort and pain passed before FINALLY I was diagnosed with arm Lymphoedema.  This is why I say you MUST push for answers.  I wasn't forceful enough and that cost me extra wasted time before being diagnosed.  My arm was so swollen by the time I WAS diagnosed that its taken a LOT of work on my part and also a lot for my lymphoedema nurse-specialist before we could get it under control.  Even now my arm is twice the size of my other arm and there are times when it really gets me down.  So PLEASE Sika, push for a proper diagnosis with your arm and push NOW.  I wouldn't want anyone to go through what I've been through. 

RevCat
Member

Re: another 'have I got lymphoedema' question. ..

Hi Sika,

 

I have 'very mild lymphoedema' and was seen really quickly by my BCN after I said I had aches, tightness and 'it seems a little bit bigger than the other one'.  The difference in size was 1-2cm, depending where she measured, so she tried first with exercises, but that made no noticeable difference, so now I have the 'lightest' compression level sleeve and the difference in how it feels is enormous!  The lady who fitted my sleeve could see the swelling (she knew exactly what she was looking for) and said it was better to catch it early than to wait and end up with a really swollen arm.  My BCN did say that loads of ladies wouldn't know they had this level of lymphoedema but because I reported discomfort it was better to act.  The specialist lymphoedema provision where I live has a horrendous waiting list so they only tend to refer you if it's really bad, but the sleeve fitters are very knowledgeable.

 

I would try to get it checked - if it isn't the dreaded 'Lynn Foe Dema" well and good, but something isn't right and you need to get it fixed.

katytc
Member

Re: another 'have I got lymohoedema' question. ..

Hi sika,

Would def phone again and ask to be seen by Lymph Clinic asap, when I was worried I phoned my BCN and was seen in less than a fortnight, so do phone today, it's worrying you and you are sore and uncomfortable, don't wait. I didn't realise my arm was swollen until measurements were taken so don't leave it to chance.

Hope all goes well xx

Lucy_BCC
Member

Re: another 'have I got lymohoedema' question. ..

Hi Sika
Our helpliners are on hand on 0808 800 6000 if you would like to talk your queries over with them, or you can send in your query to our 'Ask the nurse' email enquiry service which you can access via this link:

http://www.breastcancercare.org.uk/breast-cancer-services/ask-us-your-questions

Here's also the link to the BCC information and publication about lymphoedema which you may have seen:

http://www.breastcancercare.org.uk/breast-cancer-information/treating-breast-cancer/lymphoedema

Take care
Lucy BCC

Sika
Member

another 'have I got lymohoedema' question. ..

Like so many other treatment and side-effects issues, I'm struggling to make sense of lymohoedema. A few months ago my arm felt heavy so I rang the Breast clinic but the nurse said if it's not swollen it's fine.

Lately it seems slightly swollen. But the main issue is the heaviness and tightness and pain in my arm. I used to have full movement but now I find it really hard, and painful, to reach or stretch.

If I ring my best clinic again she'll just say if it's not swollen it's not lymohoedema - but other information (BCC) contradicts this.
If it is lymohoedema, is there any advantage in having it diagnosed? If it's not swollen I won't need a sleeve. I could do the massage myself based on online info. Should I just ignore it? I quite liked having full use of my arm.