Well here I am after having my diagnosis and the treatment (removal of the womb) which I am grateful for the prompt action to help my recovery from this disease but unlike others I’ve been left with cells that have uncertain significance.. they are just watching with extra scans. But I went for my check up this month after being mucked about and cancelled for about 4 weeks to see a doctor. I’ve never seen before who changed all the plans I had with the consultant.. I’ve also not seen or heard from the Macmillan nurses whom are suppose to be with you every step of the way.. before you ask yes I’ve emailed them I get very short sharp responses such as I shouldn’t put down any 1 persons name in particular as they work together,, honestly I understand they’re a group but the 1 nurse was so so supportive understanding and caring, I had formed like a little Ali with her so obviously I just sent the emails to her.. I was suppose to be referred to the physio as my bladder has been really weakened by my op ((which is a possible side effect)) but I don’t believe this referral was made… I no this post sounds like a bag but I just need to get these things from my chest as I have nobody here in my home to discuss this all with.
sorry for the rant but I’m just feeling the aftercare when they think you’re fixed is shoddy.
Hi WickedWoo
I am not sure about the cells that have uncertain significance as this is not something I have come across on here. It sounds like the scans are to check for any changes perhaps.
I personally had LVSI which is where tiny cells are found in the vessels (lymph/blood) and these were treated with adjuvant chemo and radiotherapy- a sort of mopping up of cells.
I am sorry that you have had such a poor experience with your aftercare. I was so lucky with my CNS who has been there the whole time for me. There was a team of nurses but all through my 2 years of checks I have pretty much seen her each time. She has also been good at getting back to me when I have called or emailed her.
With the referral to physio re your bladder, if you are not getting answers from the hospital perhaps contact your GP. Every report etc in my own experience gets sent electronically to my GP. They should be able to follow this up for you.
It maybe worth contacting PALS at your hospital- as you could give feedback on your experiences if it would help.
Feel free to offload on here at any point. Sometimes it does you good to get it all off your chest. If you feel like it would help to talk to someone, do please give the Support Line a call.
Hope you can get your physio sorted and some support from your GP. Gp may also be able to look at your post op results and be able to clarify what was meant by these cells that remain.
Jane
