Hello all, I haven't posted here for a while! I had a radical hysterectomy last September following my diagnosis of 1b1 adenocarcinoma. I'm currently really stressing about lymphedema and wanted to speak to people in similar situations... it really feels as if everyone I speak to has developed it after treatment! Are there people here who haven't developed it? For those who have, are you able to let me know how it started? I've got some nerve damage in my thigh after the operation and I'm now worried that that's a sign of lymphedema as it still tingles sometimes. I also feel as if I'm putting weight on everywhere, but my thigh measurements are the same now as they were the day after the operation so that might be all in my imagination. Any words of wisdom on this would be very welcome!
Im a 1b1 adenocarcima as well , i had my radical hysterectomy in 2013 but had recurrence in 2015 . About 2 months ago i had some pelvic pain & my right leg started to swell , i rang my gynea nurse who referred me to the Lymphedmea clinic , scary time and i thought the worse again however after it has now gone down almost back to normal size , the lovely nurses in the Lympheda clinic tell me that is very unusual to develop lymphedema so long after surgery . I will see them again in 6 months time for a review but in the meantime i have been advised to massage my legs . There is a certain technique for lymphedema massage im sure your Gynea nurse / consultant can advise you of this. If you are worried about Lymphedema i would get in to the routine of massaging both of your legs daily , i certainly think it may help and wouldnt do any harm to do it anyway.
I would try not worry about it , Not everyone develops Lymphedma .
I didn’t get it, I’m 4 and a half years out now and all good. I had a radical, 11 nodes out I believe, but possibly more, I’ve honestly forgotten! Followed by 3 rounds of brachytherapy. Try not to worry, fingers crossed you will be lucky and if not, I believe there are lots of effective ways to manage it.
I had 19 nodes out almost 2 years ago and no lymphoedema so far, my hospital advised me to wear lovely compression tights for 6 months after surgery though, they also said the chance of lymphoedema was around 10%, so try not to worry..
Hi AnxiosBear, I am in your camp And had my op Nov. My thighs haven't been right since my op, the docs keep telling me different things. I am fearful of developing lymphedema! This week my left thigh is slighty swollen, enough to reduce me to tears. I have asked my doctor to refer my to a clinic to learn the massage technique so just waiting on the appointment. I also had a reflexology session which helps with lymphatic drainage, can't say it has worked yet but it was relaxing. I have often thought of measuing my thighs but stopped myself as I am trying to tell myself to get over it and be thankful. I am just praying the op worked and I will be cancer free and will bare my now fat thighs with pride but reality kicks in and I feel like crap every time I look in the mirror or try my clothes on as nothing fits anymore. So sorry to moan as you were looking for positive messages but I feel your stress. I have also been told movement is key to reducing the fluid.
Change of subject - have you had a vault smear yet? I keep reading about this and it is sending shivers down my spine!
Hope you get the answers you are looking for - good luck and sorry to moan xx