Just got back from 2 weeks in Portugal and had a lovely time. Sadly, 3 days before flight home, came down with high temperature, headache, nausea and grossly inflamed left arm. At first, I thought I had a touch of sunstroke and that my ‘at risk’ arm swelled because of shock to my system, but on return, visited hospital only to be told I had lymphoedema and cellulitis. I was sent away with double strength antibiotics and to return on Wednesday. From the relatively brief conversation with nurse (who treated me as if I was a naughty schoolgirl who had not read leaflet on condition), I gather that all this was caused because I had been in the sun or suffered too much heat. I am really upset, as if this was caused by sunbathing, I had no idea this would be the result. The only mention that I was at risk from lymphoedema, was one line that reads ‘avoid extremes of hot and cold’. In my mind this is a bit too vague - surely they should highlight in block capitals, that sunbathing puts you at high risk and also travelling to hot or cold climates. I was aware of the risk of sunburn however, and took necessary precautions. I am gradually coming to terms with this but I am angry, as it could so easily have been avoided. I was only really aware of risk of infection through cuts, bites etc. and to avoid blood pressure readings and injections from ‘at risk’ arm. This is just another setback in this dreadful disease. Just when things were beginning to get better and getting back to a near normal life.
How do you cope with this condition anyway? Will I have to wear a compression sleeve daily and what other treatment is there, if any? How does it affect your lives? Would be interested to receive any comments.
Thanks
Sophiebubbles
hiya sophie,
I haven’t had the experience of lymphoedema but I can onlt advise on what i think as a nurse. Once the infection has cleared they will use compression bandages to reduce the swelling. Also masage and creams are used. Its quite specialised, usually a physio and nurse. i dont think it means always having to wear a pressure garment at this stage, depends on severity and lots of other stuff. Hopefully yours is a one off. Ask your Bc nurse she’ll be able to advise further!
Hope this helps
Julie xxx
Dear Sophie
Breast Cancer Care have published a booklet called ‘Living with lymphoedema after breast cancer treatments’ which you may find helpful, you can read it via the following link:
breastcancercare.org.uk/docs/bcc_lymph06_0.pdf
If you have further queries or concerns please do not hesitate to contact our confidential helpline on 0808 800 6000 where you are able to speak to one of our specialist nurses.
Kind regards
Louise
Moderator
Breast Cancer Care
Hi Sophie,
Very sorry to hear you have lymphoedema. I developed it 14 mths after my breast surgery and I have found it very difficult. There is plenty of help out there but my advice is that you need to be proactive because many doctors don’t have a very good understanding of lymphoedema and its consequences. Please get referred to a specialist lymphoedema practitioner (usually a nurse or physio). Also I would recommend that you look at the ‘British Lymphology Guidelines For Treatment Of Cellulitis in Lymphoedema’ which you can access thru the NHS website patient.co.uk. Some doctors tend to undertreat the cellulitis so its important you have the correct dose and length of treatment with antibiotics. And do join the LSN, it is very good. If you have any specific quesitons please ask though I may not know the answers.
Best wishes,
Rowena