I have been diagnosed with 1b1 moderately differentiated squamous cell cervical cancer. I have been told I need to have a radical hysterectomy with lymph gland removal. I already suffer from primary lymphoedema in both legs and I am concerned that removal of my lymph glands will make it worse. Does anyone else suffer from this condition and is in the same position? I am 43 years old.
So sorry to hear about your diagnosis. It's a lot to take in, isn't it?
I didn't have lymphoedema before surgery, but I did have a lot of issues with lymph pooling in my abdomen after surgery and I'm now showing signs of lymphoedema in one of my legs. Trying to get referred to the lymphoedema clinic at the mo for some more evaluation. It's distressing, so you have my sympathy for having had it up to now and I do appreciate why you are concerned.
My understanding is that secondary lymphoedema is a well recognised side effect of lymphadenectomy. Things I have read always say the chances of getting it are quite low, but I suspect that gynaecological cancer patients are a higher risk group. I haven't read anything about implications for pateints with pre-existing primary lymphoedema though, so that might be a question to ask the Jo's Trust 'Ask the Expert' service?
Our problem is that there are no guarantees either way and the bigger risk is the cancer. We don't really have other options if if we want to be sure that all of the cancer has been caught and treated. Still, it's well worth discussing this with your treatment team as they may be able to help reduce your risk.
Reading it back, I'm not sure my message will have eased your mind at all, but my experience of having cancer is that I had quite enough of people telling me not to worry and that everything would be fine when I had genuine concerns and wanted to understand the risks. Still, perhaps someone else will have some good experiences to share to balance me out.
In the meantime, good luck with your surgery and do keep in touch and let us know how you are getting on.
Big hug x
Thank you Rosehip. Its bad enough trying to deal emotionally with the diagnosis, let alone all the possible side effects, especially when I have one of therm already! My surgeon is investigating the issue and I meet up again with him on Wed. I have already asked the experts on the forum and am awaiting their reply and I am awaiting an appointment with a lymphoedema nurse as well.I just wanted to hear from anyone who had the same experiences.
I hope you can get some treatment soon for your lymphoedema, its not much fun especially in hot weather!
Big hug back,
My surgeon has referred me to a different hospital where I will undergo a larascopic radical hysterectomy with sentinel node biopsy to prevent removing all pelvic lymph glands. I am really pleased about this as it will be less intrusive and hopefully minimize my lymphoedema from getting worse. I see that you had the same operation - how was it and what was your recovery like? I meet the new surgeon next Thursday.