"Unchartered Territory" - such a frightening phrase!

[Nardobd]

Ted was called back to see the consultant today. His CA19-9 markers are the highest they've ever been - even higher than when he was first diagnosed.

Thinking that the radiologists missed something on the scan, the consultant took it back to the MDT meeting but they can't find any difference other than the area being a bit less "blurred" (Ted's scans have alwas been difficult to read because it was hard to differentiate the tumour), but if anything that should be good news rather than bad.

The consultant said that this is "unusual" and that neither he nor any of his colleagues (and our local hospital has been a specialist centre for some time) had seen this situation before - there's no mets, no sign of the tumour getting bigger but his CA19-9 has been steadily rising and has now soared to the highest level yet. He felt that he should see Ted and get some feedback from us because this is "unchartered territory". I really didn't know how scary that phrase could be til today!

Basically, we were given four options:

1. "Wait and see", with monitoring every 6-8 weeks - not an option for us, as I think everyone here will understand.

2. Look at early-stage trials (but Ted would have to be an inpatient at Liverpool hospital - around a 5 hour train journey from our home) - Ted didn't like this idea at all!

3. Chemo-radiotherapy with daily attendance at hospital for around 6 weeks - again Ted didn't like this idea, particularly when the consultant went through the possible side-effects.

4. Another set of chemo with gemcitabine as the drug of choice (ie the same as before). The consultant said that this seemed to be the natural path and this is what we decided to do at the end of the day. The idea is that they will take a CA19-9 test at the end of the first month and see whether the markers are falling to assess whether this is the right course of action.

I mentioned a PET scan and the consultant said that he felt that since Ted was undergoing a further set of chemo, it wouldn't be necessary at the moment but if the markers stay high after the first month then he would see whether this could be arranged. Apparently it's not a 'standard' scan for pancreatic cancer, being used more for liver and lung cancer because of the density of the tissues in those areas.

Our eldest gets married on Saturday. We've decided not to tell her until she returns from her honeymoon because we don't want to ruin her day - especially not when the doctors really don't know what's going on. It's going to be difficult but I think that's the kindest thing for her.

So, we're back to our world being upside down and not knowing anything about what to expect - I'd forgotten just how daunting it all is. Prior to today we thought that Ted was walking a well-trodden path and to be told we are in "unchartered territory" and that the doctors don't know what to expect next is mind-numbingly terrifying.

I am reading everyone's posts but having difficulty posting at the moment due to a faulty keyboard which makes typing interesting to say the least. Love to Juliana, Brian and Blue - I'm praying for you. Best wishes to everyone including the new posters and hopefully I'll be able to post more frequently soon.

Nicki x

[Ellie]

Dear Nicki

Oh dear.....I can well imagine the turmoil you are going through! For me, it was always the uncertainty, the waiting for tests/results etc. Once I knew the situation, I could accept it and get on and deal with it. Not knowing is the absolute worst part of everything, isnt it?

Maybe you can take heart from the fact that Ted's scan hasn't shown anything and at least you have one option which is acceptable to you both to try. I know it's not what you want to be happening, especially right now, but the chemo is worth a try.

I hope you all have the most wonderful day on Saturday at your daughter's wedding! I hope the sun shines and everything goes to plan. No matter - just have a brilliant day and enjoy every minute.

Love

Ellie

xx

[bennettlynn]

Not Knowing

Hi Lynn here i am new to this site, might i add that i think all of you are very brave, i feel overwhelmed by all your stories.

I too have just been diagnosed with Pancreatic Cancer and it has scared the hell out of me.

[clair2305]

Hi Nicki

so sorry to hear your new about Ted. And yes such a frightening phrase, along with many others I'm sure we've all heard since diagnosis. As Ellie says, the turmoil is ust the worst isn't it. I feel like we take 1 step forward then 3 back!!!

I can totally see why option 1 and 2 were not options to you both. A five hour train journey is not anyone's cup of tea but if Ted is also not feeling well, it makes it even harder.

So back on the Gem for Ted. Can I say one thing.....not trying to tell you how to suck eggs but I'd make sure they do a CA19-9 on Day 1 of chemo (as they normally would) and then the one they say at the end of the first month, just to ensure you have a proper picture (remember back when Blue's first CT scan was done a month before treatment....it then caused confusion when the next one showed progression but the CA19-9 were coming down...and resulted in him beng taken off Telovac, etc etc)

Anyway, much love to you and Ted and I hope you have a really great weekend at your daughter's wedding....I hope the weather is great.

Best Wishes

CLair

[clair2305]

oops, Lynn, welcome to the forum.....there are a great bunch of people on here.

Clair

[volmod]

bennettlynn wrote :

> Not Knowing

>

> Hi Lynn here i am new to this site, might i add that i think all of you are

> very brave, i feel overwhelmed by all your stories.

>

> I too have just been diagnosed with Pancreatic Cancer and it has scared the

> hell out of me.

Hi Lynn : Welcome to the discussion board, just sorry for what brings you here to our little ‘community’. As Clair says, you’ll come across a great bunch of people - their bravery in coping and sharing, and their stories are inspirational, their advice and support invaluable. I think many of us are there with you when say how scared you feel after diagnosis, as your life has been turned upside-down. Do stay in contact, whether it’s to find the answers to questions along the way or just to ‘let it all out’. xxVee

[scp38]

,

Edited August 9, 2010 by scp38

[Juliana]

Hi Nicki,

One thing my 'specialists' banged on about with regards the CA19-9 is that other health issues can cause high readings.....has this been mentioned at all as a possibility with Ted?

My experience with CA19-9 has been on the opposite scale so I have nothing personal to draw upon. All I can say is that 'my body' tells me when there is something wrong....it's usually with pain and my general quality of life......how is Ted 'feeling'? Or is it difficult to get an answer from him regarding this (you know what most men are like...!)

Juliana

[Nardobd]

Hi Juliana

Ted says he's fine and then 10 mins later is complaining about pain - says he's fine and then falls asleep in the chair because he's so tired (despite taking a nap every afternoon)... it's difficult because he won't admit these things but my perception is that he is less well than before.

Love

Nicki xx

[clair2305]

Nicki

sorry to hear Ted isn't so well. Is it worth him seeing a palliative care doctor to sort out his pain control? Blue saw one this week (i'll update on my thread). I know only too well what you mean about Ted not admitting how he's feeling, Blue's the same.

And so when does chemo start.

Also, how did the wedding go.

Best Wishes.

Clair