6mth scan results

Dear Ian,

That doesn’t sound like a very good experience at all.

Oncologists always say the worst case scenario. When I met my GP at the start of treatment he was bizarrely enthusiastic about the idea of offering me palliative care. I wonder sometimes if they understand what that’s like to hear.

You’re still in a position of not knowing, and all that weeping does sound like an infection. Also that’s a long wait to see the surgeon. Can you ask someone else to look at the scans in the meantime?

I don’t like to say stay positive because sometimes you can’t. But stay determined, and keep your chin up. 
Best wishes,

I did want to say to her, "I know this is just a Wednesday to you but it's a big deal for me."

I have to put all the pieces back in the box and close the lid again. It could take a while with the hand grenades she threw but i will give it my best shot.

Ian x

Hi Ian ()

I’m sorry it wasn’t  the best news today. I think to a certain extent  oncologists are used to delivering bad news & it comes down to the individual as to whether that’s done in a sensitive manner or very matter of fact, I’m very lucky that I have a lovely kind, gentle man as my oncologist but unfortunately yours sounds as though they’re of the matter of fact variety! You’ve had consistent issues with infection since your treatment & hopefully biopsies will conclude that this is all that’s showing up on your scans. It’s so difficult when you’re plunged into uncertainty again when all you want is for things to settle down & get some normality back. 

Thinking of you.

Nicola

Cheers Nicola.

To be entirely honest I thought the worse case senario was an APR, to be told there is no guarantee that's possible was rather chilling. 

That possibility had never entered my mind before but it has now.

I think she jumped the gun with that info tbf and did say were weren't in that senario yet. 

I need to rebuild my little fort of positive thoughts now it's been so rudely smashed to bits though. 

Wish me luck. 

Ian x

Hi Ian

So sorry to hear that you’re going through all this uncertainty again.  I was told that, after my AC resurfaced two years after my original treatment, an APR was only real option.  Margins were never mentioned by the oncologist but she made it clear that, having asked specifically about the Papillon treatment, anything else could only be considered palliative.  I had the APR in December 2017.  In the end, I had one small area where the margin was actually 1mm so I had stereotactic radiation just on that area.  At one stage they also considered cyber knife treatment but the position would have made it difficult. I was told that there was no need for further chemo.   I do hope of course that your situation doesn’t come to that and that it’s just an infection.  But hopefully it’ll give you some comfort that there are possibilities.  I’m being treated at the Marsden so I’m very fortunate (although I did seek some further advice on Papillon) but defo worth asking for a second opinion if you don’t like what your oncologist tells you. 

Caroline

Hi Caroline, thanks for replying.

I'm at Vallindre, its always had a very good reputation. 

I suppose its possible it was just the oncologist being a little too honest but do you think it's a matter of going somewhere else for treatment?

Some of the treatments and terms you have used have never been mentioned at Vallindre. 

As you know it's the uncertainty that is the hardest thing to deal with. 

How did you manage with that?

Ian x

Hi Ian, just replied to a post you made on a later thread and have just read this thread about what happened at your last appointment.  Surely the area needs to be biopsied before they make suggestions about what sort of treatment you may have? It could be an infection and if it is these suggestions about treatment will have been unnecessary and  understandably have thrown you into a tailspin. From what you say it sounds like there's some sort of infection going on.  Maybe it's time to consider asking for a second opinion? x

I think I have to wait for the biopsy.  As the oncologists first language isn't English it's possible something got lost in translation somewhere. 

I do think it will end up with an APR senario but I never dreamt I'd be looking at palliative care.

Just hit me for six 

Ian 

I'm not surprised. It just seems a very premature thing to say given you have to have a biopsy. Easy for me to say but please try remember that the palliative care scenario is really far from being an option  right now. x

It seems the APR needs 1mm clearance all around it. If not possible then it's not offered according to the McMillan surgeon at least.

What efforts would be made to find an alternative cure or make that 1mm clearance possible I don't know. 

Ian x