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Advice needed on questions to ask liver surgeon

Vancouver
Posts: 16
Joined: Mar 2013

Hi there,

My 77 year old mom was diagnosed with Stage 4 colon cancer (mets to the liver) in Sept 2012.  I have drawn a lot of inspiration from the stories/information posted here since that time and was hoping I could ask for some advice.

My mom has been incredibly lucky so far.  After her colon surgery, she had to wait 8 weeks before she started chemo.  The cancer was already spread through her liver and continued to spread through her liver while she waited.  By the time she was cleared to begin chemo, she was so weak, the doctors were hesitant to let her try.  Fortunately, her oncologist prescribed capecitabine/xeloda.  Within two weeks, my mom was literally back to her normal self.  She had a very dramatic response (the best her oncologist has ever seen!) and within a month, all her liver function tests were normal and her cea dropped below 1.5.

She has been stable since and the xeloda seems to still be working.  Her dosage was reduced not long ago to manage some side effects and there has been a small rise in her cea and CA19-9 (gone from 20 to 26 over the last two months).  Last week, avastin was added to her regimen.

Anyways, tomorrow she has her very first appointment with a liver surgeon.  The oncologist has been hesitant to refer her—he doesn’t want us to get our hopes up that she will be a candidate for resection because her tumours were very extensive and spread throughout her liver.  The thing that has confused me is that even though the CT scans show no active cancer, the tumours never really shrank or disappeared.  Instead, as I understand, they became like fluid filled cysts, so when you look at her scans, her liver appears to still be completely filled “stuff”.  I’d like to have a better understanding of what is left now in the liver if it isn’t active tumours and discuss options for her. 

I would really appreciate any thoughts you may have on the types of questions we should be asking the surgeon.  Thanks for your help and for all the support and sharing you provide each any every day to the many people like myself who rarely post, but check in every day.

CT 

devotion10's picture
devotion10
Posts: 640
Joined: Jan 2010

hopefully, someone with experience with liver mets will respond.  

You are a good daughter to advocate for your mom. It sounds as if she is responding well to treatment.

Has she had her appointment with the liver surgeon yet?

Peace. ~ Cynthia

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

When I had my liver resection in 2012 I did avastin,folfox,5fu,and oxiliplaton chemo first.The chemo shrunk the tumor down to almost nothing,then they did a liver resection.The tumor started out golf ball size.The liver will regenerate so they can cut it by sections.Usually there is a cancer board of doctors who meet,and decide what action to take.I hope this helps.Good luck. 

Vancouver
Posts: 16
Joined: Mar 2013

We did meet with the liver surgeon today and I was encouraged.  He recommended she come off the xeloda for six weeks in order to have a PET scan (she has only had CT scans until now--didn't realize you had to stop chemo for 6 wks in advance of a PET).  Once she has the PET, he will review...if the former tumour is all deal/sterile, he recommends doing nothing.  If anything shows active cancer, he will consider resection. 

This was great news as her oncologist said the mets in the liver were originally so extensive, he didn't want to get our hopes up.  The surgeon said he doesn't care about what was there, just what is there now.  He will be "conservatively agressive" moving forward but doesn't want to rule anything out for her.  He agreed with the oncologist that her case is pretty special--said that with that much cancer in the liver, they don't usually even do the colon resection.  So a good consultation all in all.

Thanks,

CT

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

Good news,just don't give up,and don't get discouraged.Everyone is different.Good luck.

AN
Posts: 4
Joined: May 2014

Hi ct, your story is very encouraging, can i check with you if you mum is taking any supplements while taking xeloda?

schnauzerheads's picture
schnauzerheads
Posts: 53
Joined: Jan 2011

Happy to hear it went well... Just seeing your post for the first time as I haven't been on here for quite some time, I wouldn't have had any advice to offer since my situation was much different.

Thoughts and prayers coming your way, looks like she has a good team of doctors and a loving family.

 

Kevin

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