So a week since my post CT appointment where I was told everything looked good. I rang hospital today as I have had a bit of pain in my groin again and was told I have to be seen next week in clinic as at that last appointment my tumour marker had gone from 16 o 29. I have already been told that chemo won't be an option as they had given me all they could, surgery was mentioned but I suppose that will depend where it is. I know there was a little bit of tumour still left in my groin. I am now really really scared and devastated. A whole week to wait until clinic and I know last time this thing grew very fast. It is the not knowing what will happen to me. I could resign myself to dying but it is what I have to go through to get to that point that is cutting me up. Well I had a few days of hoping things were working out well, now back down in the dumps again.
Hi Jkg
I am so sorry to hear that you have had some bad news when everything was looking more positive last week.
You certainly have experienced a very few challenging and up and down months. I can understand how devastating this is and how scary it all is.
I am sorry that the groin pain has returned and that the tumour markers have raised. From what I was told with the CA125 markers, anything under 35 is considered ok and that although yours has raised from 16-29 - I was told that for endometrial cancers the marker is an indication but does not give the whole picture. Although a week is a long time when you are waiting it is good that they are getting you straight back in to investigate. Although they have said that there is no more chemo it may well be that they can offer some other treatment.
Surgery may well be an option and as there was a little bit of the tumour left in your groin, maybe the chemo had reduced it in size enough to make surgery an option. I wonder whether it may be worth asking about whether any radiotherapy would help, even for symptom control for the pain. I know also of ladies on here who have been offered immunotherapy/targeted therapies. I suppose as hard as it is, it is a case of waiting to be seen next week, them doing whatever tests are needed and then between you work out what the next step is.
I know it is hard to wait with all these thoughts going through your head and if it helps to talk things through then do give the Support Line a call. Post on here as well, we will do our best to support you.
Take care
Jane
I am glad you are feeling calmer now but we are here for the moments when you are not.
After my chemo finished I did get bony pain around my pelvis, particularly lower back. They said it was where the chemo I had attacked the bone marrow. I also had radiotherapy after chemo. I still get bony type pain. I know some is from chemo and some is the radiotherapy as it lines up exactly with my radiotherapy tattoos. I feel achy and stiff at times.
Could well be some wear and tear as well. I have to pace myself- if I don't do enough I seem to seize up a bit and if I over do it then the aches come on.
Its not long since your chemo ended and with the positive scan less than 2 weeks ago, it may well be that the tumour marker has risen for other reasons. (I was told infection could do it)
I think you are right, try to keep positive until next week and get the answers you need. Once you and the doctors have a better idea of what is going on, then you can make a plan.
I know it is hard to wait. We are here. Crossing everything for you.
Jane
