Up and down up and down :(

Hi all,

 

I can't get through my fear of recurrence, though results of my operation were pretty positive. I was diagnozed with CC after conization, where 10x7 mm tumor was found with LVSI present. After all scans etc i had radical trachelectomy, another 12x7 mm found, but other than that  with 38 lymp nodes out, margins clear, no LVSI, no nodes involvement. I still had to go another slight operation as margins were not big enough (3 mm on one side, and they wanted at least 5). Still waiting for the path report for this one.

 

Anyway, the LVSI in the very first conization freaks me out, and one day I'm positive, another day I cry and I'm sure I will die :( 

 

I know it's hard for everyone, and everyone is different, and I'm just looking for some support - or maybe positive stories.

 

I will see a counselling service next week, to help me out, but it's really up and down all the time ...

 

 

You don't when your op was but it takes a long time for the fear of recurrence to go away. I had LVSI and 20 months later I have had no recurrence. What i have had is a new precancerous lesions found in my vagina. 

What these taught me was the following. All that worrying about whether it came back or not was pointless. Because something else cropped up instead (The precancerous stuff is not due to the LVSI but my chronic HPV infection) 

I had a scare back in the summer when i was convinced my cancer had come back, turned out to be a slipped disk, and now life is back to 'normal' 

Take heart that you are in a great place for any recurrence to be picked up more quickly than the average persons initial cancer being found.

It is scary, but that fear will lessen in time I promise, and one day you'll suddenly think to yourself 'I haven't thought about cancer at all today'

Good luck with the counselling. Hope you find it useful.

I totally understand how your feeling. I am 6 months post trachelectomy and I still think about stuff on most days but I do now have the occasional day when I don't think about it! The key is to keep busy but also give yourself time to rest as I feel more emotional when I am tired! Plus even when you do think about it, try to think positively about how amazingly well you have done and how brave you are. You will now probably have a different outlook on life which will hopefully mean that you appreciate things in life more and don't take things for granted. This will make you a better person. Also I always remind myself that there is always someone worse off than myself. 

it is totally normal to feel the way you do and it's good to cry now and again and get it all out of your system. 

Lots of love xxxxx

Hi Liana,

Janey is absolutey right about appreciating things in life more, so that's one thing to be happy about. If I am totally honest with you it took me probably two to two and a half years before the dread of a recurrence finally left my head. Facing up to the fear and anxiety of a recurrence followed by the relief of an all clear is a roller-coaster - no other word for it, but sooner or later you will get used to going up and down before you finally settle. Counselling is extremely helpful and of course we are all here for you whenever you have a wobbly moment.

Be lucky :-)
Tivoli