Post tumour removal, management options

Hello Kayleigh

I am so sorry to hear that you are having these ongoing problems.  I would be guessing as to what can be done as this is completely outside my experience.  I am hoping others who are a lot more knowledgable than me pick up on your post and can share their experiences.

Sending a big hug, Kayleigh

Irene xx

Hi KayleighK ,

I had my tumour surgically removed as first line treatment, good margins were achieved except for a tiny part where the clear margin was only 1mm which was cut off point for further treatment. My colorectal surgeon referred me onto oncology who offered me into the PLATO clinical trial for a 23 day course of chemoradiotherapy. This was described as ‘mop up’ treatment for me & an insurance policy for a healthier future. I can’t say that this would be an option for you but I think you should air your concerns to your consultant & maybe ask about any clinical trials that are around at the moment. 

It would try & make it clear to your treating team how much anxiety your present situation is causing you. You are your own best advocate. 

Nicola 

Thank you!

Im going to give the team a call next week. I think I had sort of decided in my head that by this point it would all be cleared up and the regular monitoring would be coming back with nothing to report.

Each time I see “high grade” it seems to set me off worse than the time before. Even if I have the chat and they don’t offer anything different, hopefully I will feel a bit better! Hope you are doing well!

Hi Kayleigh,

This is also outside of my experience but sounds incredibly tough. Of course you feel anxious and worried and understandably so. 
I really hope that you get some answers and support from the forum and from your team.

Sending a big hug x

I can only imagine how you’re feeling. I’m sure others will agree that following treatment for a cancer diagnosis regardless of what that treatment is it leaves you on high alert, it leaves behind a level of anxiety so the fact that they’re mentioning ‘high grade’ disease at your surveillance appointments without offering anything other than watch & wait would be enough to send any of us into a bit of a tailspin I’m sure.

I’m doing well thank you I’m just approaching 7 years post treatment. 

I hope you get some answers soon or at least some concrete reassurance from your consultant. 

Nicola