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It's back... Also, the second opinion question

Real Tar Heel
Posts: 80
Joined: Nov 2019

My Onc's worry seems correct. Last MRI showed likely 4 new mets after the RFA/FOLFOX combo. Tumors are what we would consider large (all greater than 1cm) and this was after just 3 months.

We haven't discussed next steps but I am guessing either hepatectomy or hepatectomy/chemo combination. I've read that having an explosion of new mets after RFA is somewhat common, more common than with lap hepatectomy.

Obviously when tumors return this quickly in numbers the prognosis is not good. The first thing my wife said was "second opinion!" I'm not particularly interested in one, but I see her point:

  • The surgeon who did the lap partial colectomy believed I was stage 2. Then the CT scan proved him wrong.
  • The Onc believed I was in the clear after the post-FOLFOX scan showed nothing even though my CEA was at 4, abnormal for me. Then the MRI proved her wrong.

There aren't a lot of treatment options, so I don't know what the second opinion is going to tell me. Can you guys think of a good reason to get one in this situation? I think perhaps she is suggesting that the ability of my care team is not the best, but this hospital is not exactly St. God's (Idiocracy reference).

I guess it couldn't hurt but I don't think I have that kind of time.

I thought that I am KRAS mutation positive, but now I can't find that in my test history. I think if I wasn't they would not have started me with FOLFOX alone. I'm also MSS so no immunotherapy. The onc did mention testing for "other mutations," so if they hadn't already last year maybe I do need a second opinion... Tumor board meets tomorrow, meeting with Onc and liver surgeon next week, sounds like they already have a game plan.

SandiaBuddy's picture
SandiaBuddy
Posts: 1090
Joined: Apr 2017

Ugh, what a punch in the gut.  Sometimes things are not as bad as they appear, but sometimes they are.  A second opinion always seems like a good idea to me--there are countless stories where first opinions were wrong. Sorry, I have no real experience with the details of this matter, but it is the situation we all dread.  My thoughts are with you.

Canadian Sandy's picture
Canadian Sandy
Posts: 628
Joined: Jul 2016

My oncs opinion was totally wrong. Second opinion needed here. My onc had me dead 2 years ago. Prayers going your way Tar Heel.

SnapDragon2's picture
SnapDragon2
Posts: 304
Joined: Nov 2019

Man, I am so sorry to hear this!!!  

Have you looked into maybe being a candidate for HAI pump if liver surgery is a possibility again?  I really don't know alot about how that works but have read it is successful.

Annabelle41415's picture
Annabelle41415
Posts: 6517
Joined: Feb 2009

Getting a second opinion never hurts and they might even be able to suggest something that your current doctor is not recommending.  If you are in the same network with the second opinion, sometimes they tend to agree with the other doctor so it's best to see if you can get one outside, if your insurance pays for it.  I'm sorry that the news wasn't better and I'm hoping that you get someone else's perspective.

Kim

Real Tar Heel
Posts: 80
Joined: Nov 2019

Thanks for all the responses everyone. After some thought, if I sought a second opinion at this point it's really only asking someone to look at the scans again. The Onc made some vague suggestions about possible therapies but they are not giving me a sell-by date. Wink  It appears as if they are thinking about surgery and chemo but I don't know what exactly, and probably they won't either until today.

Hopefully I will be eligible for surgery. All mets are on the right side and if they are in the right place maybe they will cut them out. My chemo experience took a bad turn at the end so I'm hopeful for no more adjuvant therapy. At any rate, if they are thinking surgery they are still looking at the possiblity of giving me a few more years.

I will meet with onc and surgeon next week and then have a PET scan. Then I will have more information.

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