How assertive do I need to be?

Well done for persisting.

I completely agree with you and all the others in this thread. Your oncologist is wrong in what he says about lymphoedema. In fact my lymphoedema specialist was just saying last week it is really important to see people with breast lymphoedema because it tends to respond very well to treatment.


Hi E, I had chemo in Aug 2007 and Right sided WLE in March 2008, full clearance and margins widened April 2008 and third op in May cos I developed a seroma which would not clear , so had 3rd op to open, clean and drain, was brilliant afterwards.
Anyway I have developed lymphoedema in my left arm from the chemo, (very unusual), I wear a sleeve to keep the swelling down, I have it in my right breast, which is controlled well by taping although swimming is also very good. I have seen a lymphoedema nurse regularly and been to a variety of advice sessions,breast cancer care one in London was good she said to wear on flights, all have suggested wearing sleeves for flight and exercise, I wear 2 sleeves for flights and do lots of exercises, I have done two long haul flights and not had a problem with my good arm. Looks abit odd, flight socks and arm sleeves, it is abit hot but, I have got used to it. Def ask lymphoedema nurse about taping it has really helped me,
Keep being assertive!!!
Good luck
Dawn X

Hi Rowena and Dawn,

Thank you for adding to this thread. You’ve reminded me to come back and add an update.

I am so pleased and amazed at the difference now that I have been applying the massage technique that I was shown at the clinic. I am so much more comfortable now as the swelling has gone down a lot and the pain is not constant any more. I only notice a problem if I’ve been doing something physical to aggravate it - like a pile of ironing or driving some distance. The other main change that I have made is to stop using the arm movement on the cross trainer in the gym as the lymphoedema nurse told me that any strenuous repetitive movement would cause a problem. Instead, I do the exercises that are detailed in the booklet they gave me and I also moisturise thoroughly always massaging the cream up my arm in sections starting from my elbow up, then my wrist all the way up and then fingers and hand all the way up.

I have to see the surgeon on Monday for a routine check up and he thought my problem was a rotator cuff injury so I’m going to update him on what I’ve been doing and hopefully he’ll be better able to diagnose and refer others with similar symptoms - providing he is a bit more open minded than my onc and doesn’t mind admitting he got it wrong.

E xx

Hi E
Great to hear that the pain and swelling are reduced, and clearly ironing must be banned !
All the best with the surgeon-I do hope he is receptive to what you say.

Regarding exercise, I thought I’d add that I’ve found pilates brilliant with my arm lymphoedema. I had to be careful at first and it was very slow progress, but the teacher is great, tailored the exercises so that there wasn’t to much weight on my arm-there are a host of ailments anyway in the class!-and I’ve gradually increased what I can do. I got more confident over time and know what is ok for me, and when to adapt. That and swimming have been fantastic.
C x

hi just been reading all your comments, I to have a swallen hand on my effected side for over a week, iv been to see my gp who has adviced me to speak to my breast care nurse but the surgery was closed left message on answer phone and ill ring them first thing do think i may have the same condition???