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how do you deal with the news of a 6 month prognosis?

selsak11
Posts: 6
Joined: Mar 2012

Hello,

My dad was diagnosed with stage 4 stomach ca in Dec 2009. That in itself was a shocking time as he was asymptomatic the only thing was being breathless and tired from a really low Hb level and this is how all the investigations were started. At that time we were told, the consultant (gastroenterologist not a oncology consultant) said he could not be sure of the outcome, some people are not suitable for surgery etc etc and he did mention a 6 month prognosis.

Obviously we are in 2012 now, so there was good news for my dad up until now, which I would like to share with you as I think at least this will give some hope to a lot of people who have just been initially diagnosed. My father was responsive to 3 cycles of ECX chemo, underwent a subtotal gastrectomy in 2010 and had a further 3 cycles of ECX post op. All of the above he tolerated fairly well. At the moment he seems fit and healthy just a little thin. So he has had a about 17 months of being well after the end of post op chemo.

However this week following a routine outpatient apt and a CT scan and blood test results show his tumour markers are increasing (just under 100) now and CT scan showed lymph node involvement at distant sites to the stomach area but no spread to other organs and no recurrence in the stomach itself but we were given a prognosis of 6 months ( if he were to have no chemo), a couple of months more (if he has chemo EOX regimen this time and they are offering 6-8 cycles).

This is just such a shock, as my dad seems so well in himself and I cannot fathom how they predict he will deteriorate so much and so quick over 6 months. As I said he is really well in himself. I think as a family we are ignoring the issues and pretending that everything is normal as my dad is currently well and just living life as normal. To be honest I do not really know how to deal with this. Just would like to know what other peoples experiences have been?

Would love to hear some responses.

Thanks, Sal.

have2believe
Posts: 135
Joined: Dec 2010

Your dad has already beaten the odds. May I ask where it had spread before when he had first been diagnosed? The reason I ask is that many dr's wouldn't even consider surgery at stage 4 though of course it happens. It must mean that your dad was extremely responsive to the treatment and I hope he responds well to this one. EOX is an extremely aggressive treatment and I know people who have had success with it.

For some people, denial is the best way of dealing. I think it's important to see how your dad wants to deal and try to support him. If it's better to pretend that nothing's wrong, then ok, just focus in the present. However, when my mom was first diagnosed, one of the first things was to get her affairs in order...this does not mean imminent death, but the acknowledgement that everyone dies and it's best have things taken care of just in case.

selsak11
Posts: 6
Joined: Mar 2012

thanks have2believe for your advice.

Sorry, i guess in 2009 it was stage IIIc (T4a, N3, M0). Now distant lymph nodes have been found to be affected encroaching upon the chest, liver and in the peritoneum. Initially (2010) chemo was very effective, some of the doctors were a bit surprised ( was nice to hear the dr walk into the room and say we have some good news for once).

I think at the moment i am quite happy at being in denial but seems as if my dad has taken it on board and already telling my mum when the car insurance etc has to be renewed next year. It is just horrible hearing him say these things, but as you said I know it happens.

have2believe
Posts: 135
Joined: Dec 2010

Right now, my mom's feeling pretty miserable just having started treatment. She has mets to distant nodes and I'm hoping the chemo will make the disease undetectable indefinitely (as I always do). Sometimes she's not in the fighting mod and talks about death ...I just bite my lip because I find it difficult to hear but I know I need her to feel comfortable expressing herself. I think you just have to support him because once he starts treatment, it might not be that easy to stay bright and cheerful, but if he does, then kudos to him. I think it's important to cling onto hope..I personally know someone with distant node mets who's been NED for 2 years. Sure we know what the odds are and what we're up against, but no matter what, there's always miracles that can happen.

selsak11
Posts: 6
Joined: Mar 2012

I am so with you on those undetectable indefinitely thoughts!

I'm sorry to hear your mum is not getting along with the treatment at the moment. Hopefully that will change and it will become more tolerable/less side effects. What is the chemo regimen your mum is on?

I am delighted however to hear someone with distant mets doing okay. My dad is due to start treatment in a 4 weeks, will keep you posted.

have2believe
Posts: 135
Joined: Dec 2010

She's on taxotere...first round gave extreme fatigue. She was about to bounce back on day 11 but it's very hard seeing her experience the side effects. Just hoping with all my heart that the chemo is working...

What chemo is your father going on?

selsak11
Posts: 6
Joined: Mar 2012

sorry for delayed reply....

epirubicin, oxaliplatin and capecitabine

ERankin's picture
ERankin
Posts: 6
Joined: Mar 2012

after 3 weeks of testing, last week the dr told my dad he has cancer in his esophagus stomach and lymph nodes. we r going wednesday to see what the next step is. :(

BrianCoutts's picture
BrianCoutts
Posts: 2
Joined: Mar 2013

Hi ERankin,

I was recently diagnosed with an identical condition to your dad...I'm currently halfway through a 6-cycle EOX regime,which is absolute hell,but my prognosis has gone from 6-12 months back in January 2013 to "you have nothing that will kill you if we can control it" after only 3 treatments. My secondary lymph node lumps have totally disappeared and although I still have some problems eating,it's improving. Yes,the cure is worse than the disease,but I now have a hope back that I didn't have in January.

Its hard,but he has to do it!

:) Brian xxx

BrianCoutts's picture
BrianCoutts
Posts: 2
Joined: Mar 2013

Hi ERankin,

I was recently diagnosed with an identical condition to your dad...I'm currently halfway through a 6-cycle EOX regime,which is absolute hell,but my prognosis has gone from 6-12 months back in January 2013 to "you have nothing that will kill you if we can control it" after only 3 treatments. My secondary lymph node lumps have totally disappeared and although I still have some problems eating,it's improving. Yes,the cure is worse than the disease,but I now have a hope back that I didn't have in January.

Its hard,but he has to do it!

:) Brian xxx

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