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Sent to Tumor Board and Scared!

caregiver3
Posts: 46
Joined: Oct 2017

I'm so scared right now!  Took my dh to the liver surgeon for the second time today to review the latest scans and also to talk about surgery.  In my mind, I knew that there was a good chance they wouldn't schedule surgery today, but I didn't expect to be told what we were told.  The surgeon wants to take my husband's case before a tumor board this week or next.  I am glad that there will be multiple doctors looking at his case, but this scares me.  At this point, the surgeon is acting like he may no longer be surgical.  His main concern seemed to be the fact that the lung nodules they have been keeping a watch on probably are cancer.  And the fact that he has cancer, according to his latest MRI in the right and left lobe of his liver, when prior they were concerned only with the left lobe of his liver.  He had a biopsy to confirm mets to liver a few months back, but they only biopsed the tumor in the left lobe of his liver, not the right.  Now the scans show that the spots on his right lobe are metastatic, even though there has been some shrinkage.  We were orginally told that the right lobe lesions, were hemangiomas.  I'm just so confused and am starting to doubt his treatment team at this point and will be getting a second opinion.  We were told today by the liver surgeon that he will speak to the oncologist today to see what to do about his chemo.  We were also told that if they do opt for surgery that it may just be life extending and that there was like a 75% chance of reccurence.  So upset! 

 

Anyone have experience with the tumor board?  Also, should I be worried about the back and forth we seem to be getting?  Is this normal? 

 

Thanks for any info you can give.  Ya'll have always been so supportive.

 

 

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

I assume that this is Canada as that's what I usually associate with the term: "Tumor Board". With my local hospital, my team met every week or two to discuss my case but I'm not sure if that was just my team or all of the oncologists and radiologists. I had second opinions at Dana Farber Cancer Institute and Brigham and Women's and I believe that there were wider discussions on my case than just my second-opinion team.

I would definitely go for a second opinion if you have a major cancer center available to you (in fact, that's what I did). If they haven't already done so already, you might request a Genomic Tumor analysis so that they know the gene mutation that they are dealing with and if there are any drugs or trials that target it. Canada has a large trial on this stuff that I read about a few weeks ago.

caregiver3
Posts: 46
Joined: Oct 2017

We are in the US, not Canada.  And from what I understand it isn't typical for all cases to be reviewed before a tumor board.  He said there would be himself, oncologist, radiologist, other surgeons, etc. 

 

And the genetic testing, we had his liver biopsy tested and it was positive for KRAS G12V.  I believe you commented on another post I had about this.  You are so helpful!!  Thank you!

Mikendale's picture
Mikendale
Posts: 8
Joined: Feb 2018

I think the board is a good idea and am not sure it’s unusual at institutions that take a multi-disciplined / cross-functional approach. I know at least one of my second opinion sites did this and I welcomed it.

steveja
Posts: 41
Joined: Apr 2017

Not.  I and my wife used Cleveland Clinic (CCF) and they've used tumor and surgury review boards for years. I  know an MD at Johns-Hopkins and they do also - for many years.  Just like accents, we all have intenal biases and preferences that we cannot recognize in ourselves. MDs presenting to a board means you are getting the best advice that institution can offer. It's a great idea.  It shows they are trying to follow best-practices and offering you the best advice they have.  Therefore, there is an excellent chance your facility - with this board policy - is offering the best advice possible.

That said - multiple distal metastasis puts you way out on skinny-branches, and mKRAS isn't helping your cause.  Whether it's apparent or not your hubby is in some level of mental shock (as are you) but YOU need to take more control of events than you've ever been comfortable with before.   If you FEEL you aren't getting good advise - seek out a 2nd opinion, or even treatemtn elsewhere.

All here will wish you the best, but 5yrs on - I wish you 'no regrets' more than anything else. 

steveja
Posts: 41
Joined: Apr 2017

I've had stageI, so I'm at the shallow end of the risk pool, but I have dealt with this tumor board thing twice.

Frankly I think 'tumor board'  is a great idea.  You onco presents your case to the staff, and the put their heads together to come up with the best options.

All legitimate facilities follow the AJCC (American Joint Committee on Cancer) or similar guidelines on staging & diagnosis & tretement & followup, but in advanced and complex cases more judgement is required.  That's why a board makes great sense.

--

I'm not the best person at giving sypathhy, but my view is that between slim odds and none - slim always wins.   Surgery has somewhat higher chance of 'cure' (whatever that means), but it's a primitive inexact art.  Some ppl go into remission of even advanced cancer from chemo.    You have to roll with these punches as they come .... and if you figure out how to do that w/o a lot of anxiety - please drop me a line.  

sincere best wishes.    

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

A tumour board would basically be a second opinion, I think it's a good thing. Might as well have several minds giving opinions as one. It sounds like they're really making an effort to do the right thing. I'd find it comforting.

Jan

lhduffer
Posts: 72
Joined: Oct 2015

I go to a major cancer center, Moffitt, and my case was overseen by the tumor board from the beginning and after each course of treatment.  I believe it is a good idea as they discuss your case and then decide on what they believe the best course of treatment is for your situation.  It can never hurt to have additional insight and ideas about a course of treatment.  

Phil64's picture
Phil64
Posts: 835
Joined: Apr 2012

U of Michigan has a tumor board as well. I faced two occasions where they said I was not a candidate for surgery. 

I know every case is different and I know that I was very blessed. In both cases the chemo worked, I was declared a candidate after successful chemotherapy, and ultimately received the surgery. I had six surgeries for colorectal cancer and one for testicular cancer over a three year span. That included lung resection, two colon resections, and three liver resections. 

The last operation was 12/05/14. 

I‘ve been in remission since this last surgery.

Again I know that every case is different but I offer my story and the following advice:

NEVER give up hope. Keep on fighting always. 

Sending Love and Light to you and your husband. 

(((HUGS))))

 

My Blog: http://PScamihorn.me

caregiver3
Posts: 46
Joined: Oct 2017

I feel better after reading all of the advice!  So, looks like the tumor board review is actually a very good thing! Everyone in one room discussing my husband's case.  I guess it scared me because his case is now more complicated than we thought which makes me afraid.  I really thought we were going to be discussing surgery today and picking a date for that.  And that's not what happened.  I'm clinging to my faith and trying to have hope, but all this waiting and things changing isn't fun. 

I really would like for him to go to a large cancer center, but looking at all the locations, we are pretty far away.  Trying to figure out how we could do that.  I'm going to work on that over the next few days and see what we can do.  He doesn't give me much input on what he wants to do.  That's just how he is about everything.  He's always left most of the decision making about everything mostly to me.  I can't make this decision on my own for him though.  I made sure he understood that tonight.  The only thing he feels strongly about is the chemo.  He isn't doing well on chemo at all.  The side effects have been terrible and he wants a break from that already!!!  He has been through 6 sessions of FOLFOX and 3 had Avastin.  We were supposed to be on break and hoping for surgery, but I don't know what they are going to decide.  The oncologist is supposed to call us and let us know tomorrow if we need to go for chemo this week.  My husband doesn't want to go!   

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

This is a support thread "Wives of husbands with Stage IV Colon Freaking Cancer" and it might be helpful for you as a caregiver.

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=18704

I'm not sure how far away you are but it might help to go for second opinion or to just do the surgery at a major cancer center. You might also check to see if there are satellites of a major cancer center near where you are. I went to Dana Farber in Boston but they have a Satellite up in my state about 10 miles away (probably far closer as the crow flies but there's a river between us). I only found out about the satellite after I started treatment locally so just stuck with the local hospital for chemo and radiation.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Is Folfox the only chemo he's been on? Because I think it's the most unpleasant one to be on so I'm not surprised he wants to get off of it. There are a number of different chemos used for colon cancer and some aren't bad at all. Others are not fun but I don't think anything is as bad as Folfox. Hopefully he can try something different soon.

Jan

caregiver3
Posts: 46
Joined: Oct 2017

FOLFOX is the only chemo he has tried. It has been brutal!  Terrible mouth sores, neuropothy, and terrible constant ringing in his ears, losing his hair, skin sores, so tired some days he can't get out of bed, that's just naming a few.

Twinzma
Posts: 212
Joined: Jan 2018

My DH CEA has risen greatly over the last two tests. Today he gets scanned to see what is going on. I am right there with you Caregiver, scared and overwhelmed. 

Tumor boards are a good thing. You are having all the specialists sit down and stratizize. If for some reason they tell you they can not resect get another oppinion from a large cancer center. There is a doctor I read about at Yale that only needs a small portion of liver in order to resect. Sloan Kettering does the same procedure, but from what I gather they require more healthy liver than Yale. 

I hope they don't change my husbands chemo Folfox & his immontherapy has not been as bruatal for him as it has been for your husand. He is actually gaining weight! Unforutley though every body is different and every cancer responds differently for everyone. You are in my prayers.

 

Ruthmomto4's picture
Ruthmomto4
Posts: 638
Joined: May 2013

do you happen to remember the name?

Annabelle41415's picture
Annabelle41415
Posts: 6212
Joined: Feb 2009

I'm in the US and my case was also brought to the tumor board.  It was a board of about 12 doctors that all discussed each new case of cancer patients in the hospital - very good approach as you have 12 very good opinions and they would all discuss the best approach to each patient.  My treatment wasn't scheduled until the board had all concluded on a treatment plan.  It's a good thing that this is happening.  I'm wishing your husband well.

Kim

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