The hidden effects campaign is a great way to draw attention to those aspects of treatment which are less apparent, but no less difficult, and to include women with a primary and secondary diagnosis.
How disappointing then that lymphodema is overlooked. Hidden even from the charity which does so much to support those affected by breast cancer.
There is so much information on prevention, but for many living with long term lymphodema is a chronic and debilitating condition. Support is limited and patchy. It would be relatively easy to set up a session on ‘coping with lymphodema’, MLD and some techniques to manage, the chance to talk to others…
This needs to be said. I haven’t got lympodema but am all too aware that I could do something at any point that might trigger it so I feel as if I am constantly trying to dodge the bullet. In many ways I found it the most frightening aspect of breast cancer treatment and would spend hours poring over the internet for stories of hope and successful treatment (I started the microsurgery thread). I finished my treatment two years ago but still monitor the lymphodema thread. It makes me so cross that it is so woefully underfunded. I couldn’t have cared less about lack of eyebrows, hair, eyelashes etc - I just wanted someone to tell me that if I ever developed lymphodema there would be treatment and support available. Instead my fears were dismissed. I was told that my local hospital had a 3 month waiting list.
As I said, I’m not usually so critical and wholeheartedly support BCC but though I saw the blog, and I’ve read the information, I can’t help feeling this whole topic is swept under the carpet, as I said ‘hidden’ in comparison with other issues you champion so well. Lymphodema on the ‘moving forward’ course is aimed at prevention, not living with the condition and I’ve had the unpleasant experience of being seen as a source of fear when I try and hide my compression garment from view from other women afraid of developing this condition.
Shall I tell you what the reality is? GP’s who don’t know what lymphodema is, long waiting lists to access an appointment even though we know prompt treatment can prevent swelling escalating, poor and inconsistent advice about exercise, managing swelling, travel. Struggling to get correctly fitting compression garments. Not knowing where to go to access MLD. Don’t get me started on the cost.
My lymphodema is a direct result of my treatment for breast cancer. I’m a member of LSN but as great an organization as it is, its still my view that as the only charity devoted to the psychosocial support of individuals with breast cancer, you could do so, so much more. If you don’t, who will?
Atat - I’m so glad you managed to get a sleeve and some treatment. I’d suggest wearing your sleeve a few hours before, and after flying and doing movements - even if you are sitting, you can do the excerises. I’ve found this helpful.
I’m sure there are complex reasons for the lack of trained nurses. My own view - arguably cynical - is that services for lymphodema are costly and long term. I think charities also have to target their scarce resources and so they sign-post on to services like LSN as they have expertise in this area. But as you know, its when you are first diagnosed you want those practical tips which are are so helpful ie washing, travel.
Helen - I’d be more than happy to talk to the Helpline and assist Breast Cancer Care in identifying gaps and how these might be addressed.I’d be surprised to learn there was untapped support but I’d love to be wrong! You can respond/message as appropriate. There really is a gap between need and provision - the accounts on these threads bear witness to it.
But, the point I wanted to make was in relation to the impact of overlooking lymphodema in the hidden effects campaign and my disappointment. Thank you for letting me make it.
Its good that you have already seen an improvement so soon. I’ve come across a few ladies who have also had this experience. Though my lymphodema has improved dramatically, unfortunately, I have to wear a hand piece and sleeve or it just fills with swelling, very quickly. The compression aggrevates my neuropathy so I feel the biggest loss is sensation and dexterity.
Howdid you access treatment in the end (I seem to remember you had a long wait?)
Like you, I feel angry about the poor provision and lack of support.
I’m scared every time I go to a & e there is no system for marking arms so if your too ill or asleep they try to put BP monitor or inject arm nearest them every time. last time I kept telling every nurse who came in and said why isn’t there a system? woke in the morning to a patients relatives screaming that they had injected the wrong arm and look at it…that could have been me…
I’ve had 2 stays in Hillingdon and have asked but they have no bracelet or other system according to both a & e and ward staff…where do you get the brackets from please?
Thanks.
my info on it has been…no gardening washing up in gloves if your cut clean and if red go for antibiotics no blood pressure or needles watch for swelling…that’s it .
I hope it is OK to join this thread. I had radiotherapy 3 weeks ago today and over the last few days I have had a noticable swelling in my armpit. I asked the oncological nurse about it and she was not worried but suggested that at my appointment with the oncologist, which is in 10 days time, they might drain any surplus fluid off. Like a lot of you on this thread I was very worried about the risk of lymphoedema when first diagnosed and had to be persuaded to have the SBN. Would draining off the fluid be a good or bad move - I would rather find a natural way round it if that gave a better longer term prognosis and hence minimise any chances of lymphoedema developing? thanks in advance
Hi Lola, I had a mastectomy and auxiliary clearance five weeks ago.
Have found that if I lifted anything it led to swelling. Surgeon said it was haemotomas and could be drained if they got worse. One on the front of my breast scar was like half and egg. I kept doing gentle stretching exercises throughout but didn’t life heavy things and only started driving this week.
They have disappeared and I have started chemo and all is well.
I find I need reassurance that what we are experiencing is ‘normal’. One can put up with almost anything if we’re not frightened or worried, can’t we?
Best wishes x