How to go about getting 2nd opinion or advice

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missb2020
Posts: 8
Joined: Wed Apr 15, 2020 9:24 am

How to go about getting 2nd opinion or advice

Postby missb2020 » Fri Aug 07, 2020 1:07 pm

My husband was diagnosed in 2016 with Colon Cancer Stage 2B and this past April on a routine scan the found a spot on his liver.

2 Months of Chemo and then the plan was to do liver resection. No cancer anywhere else . When the Surgeon at Emory went in to look Laparoscopically before making the actual incision last week he said he did not think his Liver would hold up if he did the resection because of a Genetic condition that he has had since birth. He has Congenital Hepatic Fibrosis . His Liver function has been normal but there is scar tissue and fibroids on his liver. We were told that they would come up with another plan and let us know. We are over a week out and the Surgeon called today and said he couldn't do anything and was turning it over to some other doctors. The lack of urgency and very callus attitude has me worried. His oncologist is suppose to call us and set up more chemo in the meantime.

How do we go about switching doctors or getting other opinions ? Feeling very disappointed and lost! Does anyone have any contacts ? WE are in Georgia but can travel anywhere we need to.

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juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: How to go about getting 2nd opinion or advice

Postby juliej » Fri Aug 07, 2020 1:54 pm

This is when you call in the Big Guns - the docs at top-rated cancer centers know best how to deal with difficult situations like fibroids and scar tissue!!!

Ask your surgeon for a referral to Memorial Sloan Kettering in NYC. That's where I went when my local oncologist said my case was "too complicated" for any kind of surgery. My MSK liver surgeon (Dr. D'Angelica) said he could do it and in a few weeks I was having surgery. Brilliant surgeons like mine love challenging cases and having to think "outside the box." Everyone else gives up.

Dr. Nancy Kemeny is my oncologist. She is amazing - I literally owe my life to her! I would recommend getting a consultation with her first. Get a referral from your local oncologist to start the process. I totally understand your frustration with your local cancer center's attitude. You can do better.

Here's a link to their contact info.

https://www.mskcc.org/cancer-care/doctors/nancy-kemeny

https://www.mskcc.org/cancer-care/doctors/michael-d-angelica

Hope this helps!
Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

kandj
Posts: 314
Joined: Sun Sep 27, 2015 11:29 am

Re: How to go about getting 2nd opinion or advice

Postby kandj » Fri Aug 07, 2020 2:16 pm

All of what Julie Said! My DH was told by a liver surgeon at MD Anderson that he wasn't nor would he ever be a candidate for surgery (well, he said there was a 5% chance chemo could work, but he damn near rolled his eyes when he said so). That was almost 5 yrs ago! He got the liver surgery, has had a recurrence, it was managed with radiation, and now is almost 3 yrs from the last liver recurrence. He has had some other issues pop up (lungs and adrenal gland) but he gets the world class surgeons at MSK to take care of it.
wife to DH, dx 8/15 stage IV @36, 12+ liver Mets
HAI placed 12/15
Liver resect 5/19/2016 15-20 mets (surgeon lost count)
Liver Recurrence 7/2017-radiation
Lung met 10/18 VATS
lung/adrenal gland recurrence 11/19
Adrenal ablation 2/20 VATS 3/20
Radiation: 9/20 adrenal gland, 2/21 pancreatic node
9/2021 liver, 4/22 esophageal node
7/2023 proton therapy: liver
140+ rounds of chemo and counting
Chest nodes, lung nodules, and esophageal nodes currently.


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