genevieve
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Sorry to hear you’ve had that wait, and best of luck with the Gem/Cis treatment.
First and third resections were done by Dr Charles Mosse in Canberra, and the second resection was done by Dr Charbel Sandroussi in Sydney, as Dr Mosse wasn’t available at the time. Both really good doctors.
Best wishes,
Genevieve
Hello Gli50,
I’m sorry to hear of your wife’s diagnosis and hope her treatment goes well. We’re in Australia too but not on the A/NZ group Moowal mentioned. I think my husband used to look at the fb group but probably doesn’t now. It’s nearly 10 years since his ICC was first picked up – original tumour was over 5cm and had spread within the liver.
In case you are interested in additional opinions re surgery at some time – he has had three resections, plus a microwave ablation and two lots of chemo. He’s currently been clear for over 5 years. I presume you are at a big centre anyway if you are going with a clinical trial, but if you want names of the surgeons I can let you know.
Best wishes,
Genevieve
Hello,
Just writing that it is over 5.5 years since my husband’s first resection for multi-focal ICC.
He’s had two further resections for recurrences, two lots of adjuvant chemo, and a microwave ablation. He has three-monthly scans, alternating between CT and MRI, and so far has been clear since the microwave ablation in November 2015.Best wishes,
Genevieve
Hello,
Last week marked five years since my husband’s first resection for multifocal intrahepatic cc.He’s had three resections (10/2011, 7.2012 and 7/2014), two lots of adjuvant chemo, and a microwave ablation (11/2015). Last scan (August) was clear. He is physically very active and apart from a large surgical hernia which will need to be repaired some time soon if he stays clear, appears to be well.
Genevieve
Hi Julie,
So sorry to hear about your recurrence. Good to hear that it is small and operable.
Regarding the scans, just thought I’d say that for my husband, MRI has shown a tumour (and other spots) as small as 3mm. His recent 5mm tumour which showed on MRI was not visible on PET/CT or ultrasound a few weeks later. We have also been told that MRI is more sensitive than CT for seeing liver tumours.
Wishing you all the best,
Genevieve
Hi Tony,
Not sure if this is any help, but just wanted to say that I hope you are also getting some assistance from the hospital with the emotional side of things. There should be an oncology psychologist or counsellor I would think, and if that person doesn’t seem right for you, your GP should be able to send you to someone.
If you feel you’d like a second opinion, RPA is I believe the biggest liver unit in Sydney. Some of the surgeons there are involved in research collaborations with people from the US and Europe. When we were in Sydney 3 years ago the oncologists also had clinical trials going.
Regarding genetic testing, we had it done last year, had to pay the full amount though as it is not covered by Medicare or private insurance. There is an office for one company in Sydney and they send the samples to the US (results were back in less than 2 weeks). I believe the Garvin institute will be sequencing patients samples at some time, but they were not ready last year.
Good luck with the testing results.
Regards,
GenevieveJust posting that it is now 4 years since my husband’s first resection for multifocal intrahepatic cc.
He appears very well, although we found out in August that the thing is back, though small, and he will have RFA to get rid of it soon. It has only showed on MRI, not on PET/CT or ultrasound, and it has taken some time for the doctors to work out whether he should have another resection, or whether RFA would be better this time to avoid another major surgery.
But, he has survived 4 years, and in spite of 3 resections and 2 lots of adjuvant chemo, has been well for most of that time and physically fit, We think that the exercise (he cycles a lot) probably helps.
Regards,
GenevieveHi Tony,
I’m also from Australia and my husband had one of his resections in Sydney; we saw an oncologist there as well three years ago. Are you at a big hospital and do you have a multidisciplinary team reviewing your case?
Good luck tomorrow with the oncologist.
Best wishes,
GeneveiveThank you Marion
Hi Tiah,
I’m not sure about timing…my lay person’s understanding is that a person needs to be off chemo for a few weeks prior to surgery. But it would take a few weeks to get an appointment anyway so might be worth investigating if your Mum was to consider it.
We are in Canberra and have been happy with the surgeon my husband sees here. Sydney is obviously a lot bigger though and from interstate I would think that Sydney or Melbourne would be the places to go. There have been people from Melbourne on this site but I don’t know who they have seen.
One of my husband’s resections was done in Sydney (because the surgeon here was away for several weeks) and the surgeon there was Dr Charbel Sandroussi. He’s at RPA or has private rooms at RPA medical centre.
GenevieveHello Tiah,
I’m in Australia so thought I’d say hello, though I can’t help regarding folfirinox as my husband hasn’t had it. He has had 3 resections for ICC and has had gemcitabine once and xeloda once, both times as adjuvant therapy. I presume your mother is being seen at a major centre in Adelaide. Has she considered getting a second surgical opinion, either locally or interstate?
Best wishes,
GenevieveHello Kim,
Sorry to hear about your sister. I’m from Australia and my husband has ICC. He’s had surgery twice and chemo in our city, and surgery through RPA/Mater in Sydney. If you are looking within Australia, our experience has been good and we think he has been well treated. Can’t speak for the other capitals but others have mentioned hospitals in Melbourne as well.
Best wishes,
Genevieve
Hi Karen,
I’ve sent you a forum email again, hope you get it.
Otherwise you can click on my name and send me an email.
Hope to chat soon,
Genevieve
Moose, I hope the chemo has been going okay for you.
Karen, if you don’t get my forum email and would like to chat, please feel free to send one to me.
Regards,
Genevieve
Hi Karen,
We are also in Canberra…my husband has had intrahepatic cc, three resections and two lots of chemo. We also had molecular profiling done by Caris after the last resection.
I’d be happy to chat and will send you an email. I’m quite uncomfortable online so rarely post here.
Best wishes,
Genevieve
