Newly Diagnosed wife - Stage 4 w Liver Mets

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sotorey
Posts: 7
Joined: Fri Nov 04, 2016 1:38 am

Newly Diagnosed wife - Stage 4 w Liver Mets

Postby sotorey » Fri Nov 04, 2016 2:22 am

First off, thank you all for the wonderful information on this board. I'm still trying to digest it all. And was hoping for some specific advice. I apologize if my terminology is off or if I'm misunderstanding things as I'm only starting to learn...

My 37yo wife had a colonoscopy last week where a 5cm mass was discovered in her sigmoid colon. A few days later I took her to the ER with abdominal pain and difficulty passing stool. She was admitted and diagnosed with stage 4 colon cancer that has metastasized to her liver. She is still in patient. On CT they see one 5-6 cm lesion on the liver, and another lesion that looks "questionable". The colorectal surgeon who admittedly isn't experienced in liver surgery is saying the liver lesions are unresectable based solely on the size of the first one. Even when pressed with me asking "Do you mean the location it is in makes it unresectable" he says no, they never attempt resection with lesions 5 cm or over.

From the little I've read, this seems incorrect and the only qualifications for attempting a resection of the liver metastasis is if an R0 resection is possible and enough of the liver is left to be functionable never mind the number or size of metastasis. And you really need an experienced liver surgeon to decide this. I'd really like to get her to a liver surgeon to give an opinion but because she is symptomatic they want to do surgery to remove the tumor and place a colostomy bag before they release her. They then want to start chemotherapy asap.

I have two questions I was hoping someone here would have insight on:
1. Is it true that a 5cm mass in the liver automatically disqualifies one for liver surgery?
2. If they do the colon surgery by itself, can she still have a liver surgery later if a liver surgeon thinks it is advisable? Or should they both (colon and liver) be done at the same time?

Any other questions or treatments I should be looking at? Any additional scans I should be pushing for?

Thank you in advance for your help.
WIFE
DX: Colon Cancer (CC) in 11/16 at 37yo
Tumor Location: sigmoid colon
Tumor type: Adenocarcinoma
Tumor size: 6 cm
Tumor grade: G2: Moderately differentiated (intermediate grade)
Stage : Stage IV
Mets: 3 Liver Mets (6.2 x 5.4 x 4.2 | 2.6 x 2.5 x 2.4 | 1 cm)
Baseline CEA < 1.0
11/16 - Colonic Stent

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BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Newly Diagnosed wife - Stage 4 w Liver Mets

Postby BeansMama » Fri Nov 04, 2016 5:38 am

Size has been a factor for me, however my major liver met was over 10 cm before chemo and its location made resection impossible (it is between the lobes of my liver and compressing my hepatic veins). But, I have found an amazing team of liver surgeons and they are going to resect it soon. We are currently shrinking the tumor with chemo, which may be the route they pursue with your wife.

In my experience I would trust a GI surgeon with GI questions and a liver surgeon with liver questions. If they do not perform the surgery they do not have all the knowledge regarding the surgery. Seek the opinion of a liver surgeon as soon as you can.

I will add you both to my prayer list.

Edited to add -

If she is symptomatic yes, they will need to take care of the tumor causing the problem first. I had a large tumor obstructing my colon that had to be removed and a colostomy placed before I could proceed with treatment.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

sailbd
Posts: 53
Joined: Thu Jan 27, 2011 10:58 am

Re: Newly Diagnosed wife - Stage 4 w Liver Mets

Postby sailbd » Fri Nov 04, 2016 9:07 am

The best advise I can give you is to go take your wife to an NCI designated hospital now and before any treatment - there are over 60 of them but the major CC players are Sloan, Hopkins, Faber, etc., - you can find one hopefully close to where you live. There are reasons that these facilities are designated as such - better results. These facilities tend to have the best options and surgeons. It's quite possible that a qualified surgical-oncologist can perform a double resection (liver and colon) in one surgery followed up by a standard chemo regime. (Your wife could get her chemo at a local oncologist's office as it tends to be more personable and convenient than a hospital center). If the met is too large, they can shrink it with chemo with surgical resection as the ultimate goal. Go to the best you have available - I learned this with my wife. She too was diagnosed with Stage 4 with 2 mets to the liver at age 42. The local colorectal surgeon gave advice that he had no business giving, and had she taken it, I don't think she would be with us today. Thank God we sought a second opinion at Hopkins before she started treatment or had her colon resected. The surgical oncologist at Hopkins performed a double resection with follow up chemo, and my wife has been NED since - 6 1/2 years. Good luck - don't be passive, be your own best advocate.

dudette
Posts: 106
Joined: Sat Oct 17, 2015 10:04 am

Re: Newly Diagnosed wife - Stage 4 w Liver Mets

Postby dudette » Fri Nov 04, 2016 10:19 am

I can only agree with the prior commenters:

if at all possible, try to get your wife to a cancer center.

When I was diagnosed last year I moved from Australia back to Germany within 2 days (yep, everything left behind), and went to hospital straight away because I couldn't poop. I was in a state of shock, my family had no clue what to do and we (I) left things to happen to me. While the doctors were creating a sense of urgency, it still took 2 full weeks for the surgery to happen (I think I was on a liquid diet until then - don't remember really). And like your wife I was told - by a GI surgeon - that my liver is unresectable. Now I'd challenge them and call them out on their bullshit. Having learned my lesson, I am trying to make decisions not based on fear but with a clear head.

Cudos to you for seeking information before agreeing to any procedure. Unless your wife is still in pain, take the extra couple of days to speak with a liver surgeon.

Wishing you lots of strength for the trying times that lie ahead of you both.
Temi
Dx 03/2015 @ age 41 - CC stage IV - pT3 N2b (14/29) cM1 (hep) L1 V1 Pn1 R1
Wild K-RAS, N-RAS, BRAF / MSS
unresectable mets liver 60% + lungs
Surgery
04/15 - sigmoid resect.
07/16 - hysterectomy (ovaries)
Chemo
05-06/15 - 4 x Folfirinox
12/15 - 02/16 4 x Xeliri + Avastin
03-05/16 9 x Xeloda
09-12/16 Folfiri + Cetuximab
01/2017 - metronomic chemo + methadone
July 20, 2107 - Temi has passed away.

aja1121
Posts: 214
Joined: Sat Jun 28, 2014 5:12 pm

Re: Newly Diagnosed wife - Stage 4 w Liver Mets

Postby aja1121 » Fri Nov 04, 2016 10:32 am

Just wanted to say I am in agreement with everyone above, and hope you can get your wife to a cancer center right away. Not sure where you're located, but here's a list (http://cancercenters.cancer.gov/Center/CCList). I also concur with the advice to listen to liver surgeons about liver surgery.

It is wonderful that you are already such an advocate for your wife. Sounds like you already have tenacity so I'm wishing you strength :)
05/23/14 DH dx Stage 3B rectal ca (age 41)
6/2014 chemorad | 10/2014 LAR, all nodes clean
FOLFOX x 10 | VATS/lung met | ileo reversal
09/15 local recurrence
10/15 colostomy
11/15 FOLFIRI x 4, major growth
02/16 tumor debulked
Stable ten months on Xeloda/Avastin
Growth on clinical trials NCT02024607 (BBI608 + FOLFIRI), NCT02817633 (anti-PD-1 + anti-TIM-3), NCT03175224 (c-Met inhibitor)
09/27/2018 started hospice
02/07/19 died

Nik Colon

Re: Newly Diagnosed wife - Stage 4 w Liver Mets

Postby Nik Colon » Fri Nov 04, 2016 11:00 am

I had 2 liver mets also, although not as big. I had chemo then double surgery (CRC surgeon and other for liver). I had a team and they discussed all aspects as a group, no giving info they shouldn't. As others mentioned, please get a second opinion. Best wishes

stu
Posts: 1461
Joined: Sat Aug 17, 2013 5:46 pm

Re: Newly Diagnosed wife - Stage 4 w Liver Mets

Postby stu » Fri Nov 04, 2016 11:05 am

Hi,
I will let you read the signature below. Over ten Mets and one was the size of a small orange 5cm. Chemo did a fine job shrinking them.
I wish your wife the very best treatment possible,
Kind regards,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

crazylife
Posts: 255
Joined: Wed Dec 30, 2015 11:29 am

Re: Newly Diagnosed wife - Stage 4 w Liver Mets

Postby crazylife » Fri Nov 04, 2016 11:34 am

Can you get her to Sloane Kettering in NYC. Dr. DeMatteo is a fantastic liver surgeon and Dr. Kemeny focuses on CRC with liver mets. Both have done amazing things for many people on this board who were deemed unresectable. They may be able to find a solution for your wife. Good luck!
Wife to DH, 41 years old, diagnosed 11/15
Stage 4, Mod diff, 13/24 LN, 1 liver met
Colon/liver resection at MSK, 11/15
8mm lung met (not confirmed) and enlarged lymph nodes 1/16
12 rounds of folfox (9 with Oxi) 6/16
NED - July 2016
NED - October 2016
3 lung mets - March 2017
7 lung mets, May 2017
RFA to largest met, June 2017
Lung mets growing slowly, October 2017 (off treatment since June 2016)
Right lung surgery, November 2017
Left lung surgery, January 2018
NED - May 2018

mom_2_3
Posts: 361
Joined: Sat Nov 29, 2008 8:09 pm

Re: Newly Diagnosed wife - Stage 4 w Liver Mets

Postby mom_2_3 » Sat Nov 05, 2016 4:56 pm

Sotorey,

I need to get ready for our anniversary dinner or else I would post more but your post caught my eye and I thought I would post a quick reply. My 5 liver mets were spread across my liver. The largest was 5.3 cm at the time of diagnosis. My consult at Memorial Sloan Kettering indicated that while I was resectable at that time the best option was to have 4 infusions of Folfox and then re-scan. After those 4 treatments my mets were 40% smaller and I was immediately scheduled for a liver resection in conjunction with a colon resection. Additionally I had an HAI pump implanted. I would highly recommend that you research Dr. Nancy Kemeny at MSK who pioneered the Hepatic Arterial Infusion pump treatment. My advice is to go for the most aggressive treatment upfront that you can. This past July I had my 7th year scan and I remain in remission since my surgery. There is no requirement to have concurrent liver/colon resections but many doctors hold off on the colon surgery until chemo has commenced unless your wife is in danger of colon obstruction. Once she has surgery she would be ineligible for a period of time while the incisions heal. Most doctors would rather start treatment on the liver mets (i.e. chemo) as they are most critical to her health. I have to go get ready now but please PM me and I can hopefully be of more assistance to you. If nothing else may my story be one of hope for you and your wife that long-term remission is possible and I will consider myself cured on my 10th year scan. My little girl that saved my life just celebrated her 8th birthday yesterday.

Amy
CC discovered during c-section (11/4/08)
Diagnosed Stage IV 11/10/08 -- Happy 39th Birthday! 5 bilobar liver mets
02/09: Colectomy, liver resection, HAI pump implanted, 7 of 42 nodes
7 months of FUDR and 5FU ended 11/2/09
10 years NED.

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HopeForJesse
Posts: 249
Joined: Wed Feb 24, 2016 9:39 am
Location: Philadelphia

Re: Newly Diagnosed wife - Stage 4 w Liver Mets

Postby HopeForJesse » Sat Nov 05, 2016 5:54 pm

Hello!
Just wanted to add to the above. DH Not quite as long-term NED as Nik, Amy, Stu's Mum and many others but hope to be someday. See signature below for more hope and endorsement of MSKCC and the hepatic pump. Good luck and lets us know.
DH DX 01/16 49 YO inop RC stage IV liver mets
MSS TP53 APC,BRCA2
12/15 CEA 241, FOLFOX to 11/16
LAR/ileo 5/16 Clear margins 1/29 nodes
HAI, reversal, liver resections7/16
FUDR 8/16 -NED 3 mos
Rising CEA 3/17 Xeloda, 5/17 -12/17 Erbitux & Iri stable but lung/lymph mets CEA 2.7
5/18 5 days SBRT radiation to sternum 10/22/18 surgery to remove zyphoid process met
6/11/19 5FU added to cetuximab and irinotecan CEA 16
Ephesians 3:20 Our God is able to do immeasurably more than we can ask or imagine!

mariane
Posts: 687
Joined: Sun Sep 13, 2015 6:16 pm

Re: Newly Diagnosed wife - Stage 4 w Liver Mets

Postby mariane » Sat Nov 05, 2016 9:22 pm

Sending hugs and prayers,
Last edited by mariane on Fri Nov 18, 2016 9:11 pm, edited 1 time in total.
mom of now 12 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

User avatar
LeonW
Posts: 358
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: Newly Diagnosed wife - Stage 4 w Liver Mets

Postby LeonW » Mon Nov 07, 2016 9:15 am

I also had a colon-primary with too large liver-mets. Had immediate colon repair, followed by chemo (6 mos of Capox/Avastine) to make the mets shrink. It all worked out beautifully: successful colon resection (no bag) and chemo killed all cancer; no cancer cells found during liver resection.

The same 'by-the-book'/'standard' approach as recommended for your wife. See my signature below.
My best wishes, Leon
Dec 2012 - CC 2 unresect liver mets, CEA 41.8 (MM 65yrs)
Jan 2013 - colectomy @ spleen 2/26 nodes IVa T3N1bM1a
Feb-Jul - 1x Xelox-7x Xelox/Avastin, shrinkage from #3
Aug - 2x PV embolization (both failed)
Sep 2013 - R liver resect, 25d hosp (liver failure/delirium, lung emboli, encephalopathy), no living cancer (pCR)
2014/15 - recovery, scopy: 2 polyps
2016 - new town/life
2018, scopy: 2 polyps
2018/20 low (1.0-1.4) CEAs/clean CTs: 4x2014, 6x2015-17, 3x2018-20
next June 2021!

sotorey
Posts: 7
Joined: Fri Nov 04, 2016 1:38 am

Re: Newly Diagnosed wife - Stage 4 w Liver Mets

Postby sotorey » Tue Nov 08, 2016 9:13 pm

Wow! Thank you all for the great advice and the hope your stories provide. I was also recently diagnosed with stave iv prostate cancer and our 6yo son has thankfully been NED for 3 years after Neuroblastoma treatment. Unfortunately I'm getting used to advocating for treatments :/

They agreed to discharge my wife on a liquid diet and pain meds. She is still symptomatic (difficulty passing stool, pain and cramping), so we need to hurry to get our second opinions. I spent the last two days on the phone with insurance and doctors and we will see a liver surgeon (Dr Alan Hemming) and colorectal surgeon (Dr Sonia Ramamoorthy) at Moores Cancer Center at UCSD for second opinions this Thursday. Unfortunately, we have a very restrictive HMO (which I hope to change Jan 1) so not sure if the treatments will be covered at UCSD.

I have two follow up questions if anyone has any advice:

1. Does anyone have a recommendation for an oncologist in Southern California? (Preferably with experience treating colon cancer with liver mets)

2. Does anyone have a recommendation for a second opinion on the pathology? (The pathology report took a week and a half and there was some talk that it may be primary ovarian cancer that has spread. They discussed her case in a departmental conference and came to the consensus of Colon Cancer. But the question of ovarian cancer worries me especially since she has had ovarian cysts in the past).


I hope its okay I post questions on this board as they come along. This seems like the best source of information I've found. I really appreciate all of you willing to help out strangers in need, and wish you all the best :)
WIFE
DX: Colon Cancer (CC) in 11/16 at 37yo
Tumor Location: sigmoid colon
Tumor type: Adenocarcinoma
Tumor size: 6 cm
Tumor grade: G2: Moderately differentiated (intermediate grade)
Stage : Stage IV
Mets: 3 Liver Mets (6.2 x 5.4 x 4.2 | 2.6 x 2.5 x 2.4 | 1 cm)
Baseline CEA < 1.0
11/16 - Colonic Stent

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chrissyrice
Posts: 1171
Joined: Thu Sep 23, 2010 8:44 am
Location: Atlanta, Georgia

Re: Newly Diagnosed wife - Stage 4 w Liver Mets

Postby chrissyrice » Tue Nov 08, 2016 10:56 pm

City of Hope ... not sure if that is near you?
DX 10-31-09 Surgery 12-1-09 Sigmoid Colon
Stage IIIb T3,N2,MX; Chemo Feb 2010-Aug 2010; 4 rounds Folfox; 8 rounds 5FU +LV
12/2010 PET/CT Scan, Cancer Free
7/2012 CT Scan NED 2 years
10/2013 NED 3 years
8/2014 NED 4 years
Recurrence 6/2015: iliac lymph node(s)
8/2015 Surgery: 3 cm tumor removed+iliac artery graft
3/2016 CT Scan Stable
6/2016 Stable
9/2016 Stable
12/2016 Stable
3/2017 Stable
Recurrence 6/2017
12/2017 Surgery removed all cancer w/ clean margins
07-27-2018 Cancer-free for 7 months

sotorey
Posts: 7
Joined: Fri Nov 04, 2016 1:38 am

Re: Newly Diagnosed wife - Stage 4 w Liver Mets

Postby sotorey » Wed Nov 09, 2016 1:56 pm

chrissyrice wrote:City of Hope ... not sure if that is near you?


Thank you. We are a few hours away, but I've been looking at Dr. Marwan Fakih there.
WIFE
DX: Colon Cancer (CC) in 11/16 at 37yo
Tumor Location: sigmoid colon
Tumor type: Adenocarcinoma
Tumor size: 6 cm
Tumor grade: G2: Moderately differentiated (intermediate grade)
Stage : Stage IV
Mets: 3 Liver Mets (6.2 x 5.4 x 4.2 | 2.6 x 2.5 x 2.4 | 1 cm)
Baseline CEA < 1.0
11/16 - Colonic Stent


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