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Not sure what to do next

OzarkGal's picture
OzarkGal
Posts: 41
Joined: Oct 2017

So I was diagnosed with "advanced" stage 4 colon cancer with numerous mets to the liver in July 2017.  My initial CEA was 811.  I have been on FOLFOX with Avastin for 7 cycles since then.  CEA down to 20.  The only surgery I have had is for a temporary colostomy.  Have not had surgery to remove any tumors.  I met with surgeons at two different hospitals in state in October.  They both said that I was ineligible for liver resection because of tumor in close contact with blood vessel and numerous tumors scattered in both lobes.  They said chemo for 3 more months and "we will see."  Worried about tumors acquiring resistance to chemo. My friend is encouraging me to go to Mayo Clinic in MN to see if they can offer treatment that I cannot get in home state.  It is a long drive there (~8 hours).  I would hate to go up there and them tell me there is nothing they can do.  Each time the rejection sends me into despair.  But then again maybe they can do something.  Does anyone have experience with the Mayo Clinic?

Tunadog's picture
Tunadog
Posts: 233
Joined: Mar 2017

Nice cat 

In the beginning it's difficult to handle the uncertainty.

Welcome aboard and Best of Luck 

darcher's picture
darcher
Posts: 257
Joined: Jun 2017

I would go.  The last thing you want is wondering what if.

PamRav's picture
PamRav
Posts: 251
Joined: Jan 2017

make the trip.  They may have other options for you. 

Best of luck to you. 

dancer2
Posts: 49
Joined: Jul 2016

sounds somewhat similar to what i am going through......i just keep being told they (oncologists) don't recommend surgery because of multiple lung ( small ) mets? have two in the liver as of last pt and finished 12 rounds of oxy/5fu/and erbitux added on third session....was told i seemed stable, a little shrinkage in liver mets but nothing new...that was out of state but couldn't continue the 'maintenance' there so am getting it in hometown. the 5fu was stopped three sessions ago because of the neuropathy so have only been on erbitux....still, i would like the surgery option....am also thinking of calling out of state again.....very tough when the oncos don't think surgery is an option. the only surgeon i have seen was at the out of state center i went to, and he thought surgery was viable if the next scan showed a sig. drop in suv rate, which is exactly what happened but the onco i had was not for surgery yet i was never told what the surgeon there had written....and thinking they all worked together i assumed he acquiesed to the onco....i only found out when i started to go through records later at home......which was almost two months ago....so make a call, I know i want to.

PamRav's picture
PamRav
Posts: 251
Joined: Jan 2017

double post

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

Sorry that you are here and can't help with the Mayo clinic.  It sounds positive that the tumor markers have gone down.  It might be a good idea to get a second opinion also.  My thoughts are with you through this hard time.  Uncertainty is really hard to deal with.  Keep coming on this board as we can help you try to get through whatever you are going through.

Kim

NewHere's picture
NewHere
Posts: 1108
Joined: Feb 2015

There are places that do remote second opinions, Cleveland Clinic, Mass General, Dana Farber, MD Anderson are some.  (Note the first three will do it without you having to come in.  MD Anderson MAY make you come in.)  Cleveland Clinic and Mass General are under $1,000 generally, which includes costs of gathering records.  Dana Farber is $2,000.  According to recent rankings all four are Top 15 in the U.S.  Note John Hopkins also does remote 2nds, but not to NY (where I am) so I did not dig into the details.  Mayo is #3 (I am looking at 2nd opinions.  I was recenetly told I am inoperable myself after thinking I was clear and it came back.)

 

University of Texas MD Anderson Cancer Center, Houston

Memorial Sloan Kettering Cancer Center, New York City

Mayo Clinic, Rochester, Minnesota

Dana-Farber/Brigham and Women's Cancer Center, Boston

UCLA Medical Center, Los Angeles

Moffitt Cancer Center and Research Institute, Tampa, Florida

Seattle Cancer Care Alliance/University of Washington Medical Center

Cleveland Clinic

Johns Hopkins Hospital, Baltimore

UCSF Medical Center, San Francisco

Massachusetts General Hospital, Boston

Hospitals of the University of Pennsylvania-Penn Presbyterian, Philadelphia

Stanford Health Care-Stanford Hospital, California

Northwestern Memorial Hospital, Chicago

Barnes-Jewish Hospital/Washington University, St Louis

University of North Carolina Hospitals, Chapel Hill

New York–Presbyterian University Hospital of Columbia and Cornell, New York City

USC Norris Cancer Hospital-Keck Medical Center of USC, Los Angeles

Wake Forest Baptist Medical Center, Winston-Salem, North Carolina

City of Hope, Duarte, California

https://www.medscape.com/viewarticle/866909

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

Did you have a biopsy of the tumor in the colon done? If so, I'd recommend getting complete Genomic testing so that your doctors can at least know the mutation and variant that they are dealing with to see if there are treatments or trials for it.

My local oncologist wouldn't do this for me so I had it sent to MGH to be done (my son's manager offered to do it for free) and I found out that I have the KRAS mutation with the G12D variant. That knowledge actually is very important as there are two drugs used to treat colorectal cancer and at least one of them can actually make the cancer worse. KRAS mutations are 35-40% of Colorectal cancers so it's likely that a lot of other folks here have the same mutation. I personally think that Genomic Tumor testing should be standard of care as you could then know whether or not you have something really aggressive and whether or not there are targeted treatments for it.

OzarkGal's picture
OzarkGal
Posts: 41
Joined: Oct 2017

Do hospitals normally do biopsy when doing a colonoscopy?  Not sure.  As soon as I opened my eyes from procedure, Gastro Doc said 'you have cancer.'  I have not had genetic testing.  I do know that my insurance does not cover it. 

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

They did in my case to determine Microsatellite Instability and the potential of Lynch but they did it via ImmunoHistoChemistry which costs less then Genomic testing. The Pathology report only confirmed what everyone had assumed as my tumor was quite large.

NewHere's picture
NewHere
Posts: 1108
Joined: Feb 2015

Looking to see how much, but I do have a KRAS Mutation  - G13D - which does knock a couple of drugs out of the combination for me.   

Also have issues with ERBB2 and TGFBR.  MGH = Mass General?  I may try that also. Asked the other day at Memorial Sloan about it and how much was done on the testing.

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

Yup, the Anti-EGFR drugs. I'm not familiar with the other two genes. I also have two additional mutations that haven't been classified yet and there's no information on whether or not they are good, bad or indifferent. MGH = Mass General. So your variant is on the 13 exon and mine is on the 12th.

ReeRee2's picture
ReeRee2
Posts: 39
Joined: Oct 2017

I would contact Mayo with your information just to see what they say. 

blessed39's picture
blessed39
Posts: 88
Joined: Dec 2016

Dear Ozark girl, So sorry that you are here. Maybe my story can give you some peace. It's on my blog

on my page. It's entitled "How I Beat Stage Four Colon Cancer." If it were me, I think I would make the trip

to the Mayo Clinic. God bless you        blessed39

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