genevieve

Hi David,

Sorry to hear about your diagnosis and that it took so long. Have you thought of going to one of the big hospitals in Sydney for another opinion? My husband had one of his three resections for intrahepatic cc at the Mater in North Sydney, with a surgeon who also works at RPA. RPA would I presume see more and be more familiar with cc treatment than where you live.

Regards,
Genevieve

Hi Daisy,

My husband has had two recurrences after resection, and had surgery and then adjuvant chemo both times. His was a single lesion each time in the liver only, so that is different to your Mom.

I think Percy had ablation (microwave?) after recurrence with a lymph node involved, but you have probably found that post if you have been searching.

Best of luck with the treatment for your Mom,

Genevieve

Hi Alison,

Sorry to hear about your relative. I am from Oz and thought I’d say hello. I saw your post earlier but didn’t reply because I can’t really answer your questions. My husband had his second resection in Sydney (he’s had three, currently clear) and we had molecular testing done after the third resection. We’ve had good experience with surgeons and oncologists .

Best wishes,

Genevieve

Thanks again Lainy and Marion.

Julie, I agree it takes a different perspective to see three surgeries as a positive, but we do too!

I hope you never have a recurrence, but just some more information – my husband’s first recurrence was back in 7 months, not far from the surgical margin, but fortunately there was no suggestion he couldn’t have surgery again so soon. The doctors said that it probably there, but microscopic, at the time of the first surgery, just invisible on intra-operative ultrasound or any pre-op or post-op scans. It had grown quickly – not seen on CT 6 months earlier, over 4cm when resected. The second recurrence didn’t grow nearly as fast.

Prayers and good wishes to you too,

Genevieve

Hello,

Just thought I’d write that it is now three years since my husband’s first resection for intrahepatic CC.. The tumour had satellites when first seen on a CT scan for something unrelated. He has had three resections, most recently in July this year. Margins were clear each time. He’s currently on adjuvant Xeloda.

Regards,

Genevieve

Hi Mandy,

Sounds like your husband is in good hands. I hope the radiation hasn’t been too difficult to take and works really well for him.

Here are the contact details for Caris in Australia:
Email: cariscare@carisaustralia.com.au
Phone: 1300 308 213 or 02 8014 6637
Web: http://www.cancerprofiling.com.au

I’d also sent an email enquiry to Foundation One and they sent a lengthy reply, but the nurse from Caris phoned me directly, had a long conversation, and it seemed much easier to have the local office to help plus the testing panel seemed extensive.

All the best,

Genevieve

Hi Serena,

My husband was offered gem alone after his second resection for ICC a couple of years ago. He’d recovered uneventfully from surgery, and from his first surgery 8 months prior, and is otherwise fit. Chemo side effects were really not bad – some hair thinning, tiredness in the last couple of cycles and low platelets once. He found it more psychologically difficult. Gem alone was offered on the basis that there was no clear evidence, but it might help and wouldn’t be too toxic. He had a recurrence and a third resection a couple of months ago and is now on adjuvant Xeloda. We had molecular testing done after this latest resection. It showed that Xeloda should be effective and I think it was worth the money just for that – makes it easier to tolerate side effects if you know it is likely to be helping.

Best wishes to you and your mother in making the decision.

Genevieve