New Stage IV Diagnosis

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Vanessa123
Posts: 1
Joined: Fri Aug 10, 2018 12:10 pm

New Stage IV Diagnosis

Postby Vanessa123 » Fri Aug 10, 2018 12:46 pm

Hi. My 39 year old sister was just given the news that she has Stage IV Rectal Adenocarcinoma. They told her they will be treating her with palliative chemotherapy and the earliest they can get her in the appointment is 4 weeks from now. I asked the oncologist in the meeting if we could start chemo orally but she said it is not an option as we are still within the 12 week window of diagnosis to treatment. I also asked about checking for certain genetic markers (KRAS) to ensure that the Chemo will work but was told they don't check that until after the chemo proves not to work.

They will be treating her with FOLFIRI-bevacizumab every 2 weeks.

She has 2 mets to the liver and one to the lung. Apparently they are all candidates for surgery but was told surgery was not option.

This is where the complications come in. She also has a very rare genetic disease known as VHL. This causes benign tumours in her central nervous system and also causes cancerous tumours to grow in her kidneys which are monitored and removed by laser surgery or resection before they reach 3cm in size.

These 2 horrible diseases are independent of each other. The VHL is monitored and under control. Unfortunately the cancer clinic here is treating both diseases as whole and told her that surgery is not option.

She lives in Canada and even though we are allowed second opinions it appears to be frowned upon and not always easy. The wait lists are long to get into different specialists.

She is willing to travel and is willing to "sell the farm" if need be. Does anyone have any suggestions on how to get a second opinion?

Sorry for the questions! We are just a little lost and in shock right now.

martd
Posts: 27
Joined: Tue Nov 21, 2017 3:48 pm

Re: New Stage IV Diagnosis

Postby martd » Fri Aug 10, 2018 2:19 pm

If anyone frowns on a second opinion they certainly are not looking out for your best interest. Be your on advocate, let them frown untill their face wrinkles up. You definitely came to the right place there are members here with vast knowledge maybe someone can give you a list of major cancer centers. If not do a Google search for major cancer centers and call them all. You will find someone willing to fight for you. MSK in New York is a very good start. I'm receiving treatment at Mayo clinic in Phoenix, I'm very happy with my treatment here. I'm not familiar with Canada but there are members here who are. Good luck and wishing you the best
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT
12 rounds folfox , avastin / oxi
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 complete clinical response, rectal tumor is gone!
Rectal surgery postponed, wait and watch

Lee
Posts: 5621
Joined: Sun Apr 16, 2006 4:09 pm

Re: New Stage IV Diagnosis

Postby Lee » Fri Aug 10, 2018 3:10 pm

Hi Vanessa,

Welcome, I am so sorry for the reason you are here. We do have many Canadian members here and hopefully they will start to chime in soon. Where in Canada is your sister?

If it is possible, and your sister is willing to travel. Please get a 2nd opinion at Memorial Sloan Kettering Hospital in New York City. There are member here who were given the same diagnoses as your sister and are very much alive today. Hopefully they will also chime in.

Butt I agree with the other poster, get a 2nd opinion. And if possible, get checked for genetic markers. Ketruda is an immunotherapy that has shown a lot of success for stage IV folks. Here in the USA it is approved for colon cancer.

Good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Utwo
Posts: 203
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

Re: New Stage IV Diagnosis

Postby Utwo » Fri Aug 10, 2018 6:59 pm

She lives in Canada and even though we are allowed second opinions it appears to be frowned upon and not always easy.
It's the first time I hear that "second opinion is frowned upon".

Does anyone have any suggestions on how to get a second opinion?
According to CRguy (Canuck from BC) you need to control everything and push for whatever you believe should be done.

The wait lists are long to get into different specialists.
Yes, they are. :(
Luckily, colon cancer is a slow growing one and a couple of extra weeks to get a second opinion should be OK.

She is willing to travel and is willing to "sell the farm" if need be.
It's a well known fact that best hospitals in US are better than best Canadian hospitals.
If it's within her financial means she definitely should get a second opinion at a major US cancer center (LA, Dallas, Cleveland, NY, Boston etc.).
All of them are superior to what we have in Canada.
Probably she should choose a Cancer Center that is convenient to travel from her location.
58 yo male at diagnosis - T1bN0, 0/15 lymph nodes, low grade/moderately differentiated adenocarcinoma
03/2016 colonoscopy #1: 2 small polyps removed in left colon; CEA = 1.3
04/2016 colonoscopy #2: caecum sessile 3.5 cm polyp piecemeal removed with kind of clear margins
05/2016 CT scan, blood test ...
05/2016 "prophylactic" laparoscopic right hemicolectomy with a few complications (bleeding, leak, infection)
06/2017 CT scan (lower body), colonoscopy OK; CEA = 1.6

stu
Posts: 759
Joined: Sat Aug 17, 2013 5:46 pm

Re: New Stage IV Diagnosis

Postby stu » Sat Aug 11, 2018 2:50 am

Hi .
Welcome to the forum .
Nine years ago I came here for my mum . We are in the UK so again navigating through a different healthcare system .
We have seen the benefits of going to chemo first then seeking surgical opinion. In fact it gives you time to search for the best surgeon . Get them to meet with her . I believe it makes a difference. Get them to engage with the person . Start working on her behalf .
In the Uk we frequently use “ Crowd funding pages” or “ Just Giving” to get people to help fund where healthcare stops . Do you have something similar?
Great you are doing some of the hard work for her . My mum has had both extensive liver resections and a smaller lung resection . Much older than your sister and doing very well.
Keep researching ,
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

mpbser
Posts: 430
Joined: Wed Apr 19, 2017 11:52 am

Re: New Stage IV Diagnosis

Postby mpbser » Sat Aug 11, 2018 10:11 am

I second what everyone else has said. From what you have described, surgery sounds like a perfectly acceptable option. My husband sought second opinions at Mass General Hospital and Dana Farber in Boston after initially going to our local Cancer Center, a small hospital-based department. We are very proactive advocates and, I believe by being so, we have been able to get the best care in the world for him (at least so far).
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

Canada777
Posts: 56
Joined: Mon Mar 28, 2016 6:24 pm

Re: New Stage IV Diagnosis

Postby Canada777 » Sat Aug 11, 2018 10:39 am

Hi - not sure where you are in Canada. We are in Ontario. We've had second opinions. It's possible. The Oncologist was the one who assisted with getting seconds opinions on surgery. We were told no to surgery from Toronto ( and it was the only center in our province that did the surgery). We then got a second opinion from Calgary and buffalo. The catch is that if you go to the US you are responsible for consult costs. However with that said we got approval for OHIP funded surgery in Buffalo. We might have been a bit lucky with that but I wanted you to know it's possible.
DH dx. Stage 4 Colon cancer with Peri mets Dec '15 @ age 29
12 Rounds FOLFOX Jan-June 2016
4 month chemo break. Still only Peri mets.
Successful HIPEC Oct. 2016. Diagnosis changed to appendix cancer.
Recurrence to pelvis. FOLFIRI Sept 2017-June 2018.
Radiation 5 days.

boxhill
Posts: 90
Joined: Fri Apr 06, 2018 11:40 am

Re: New Stage IV Diagnosis

Postby boxhill » Sat Aug 11, 2018 9:30 pm

"I also asked about checking for certain genetic markers (KRAS) to ensure that the Chemo will work but was told they don't check that until after the chemo proves not to work."

Well,this is definitely BS.
F, 64 at DX CRC Stage IV (or "3 1/2" per Dana Farber consult, LOL)
3/17/18 blockage, emergency surgery, r hemicolectomy
11 of 25 nodes
5 of 5 mesentery nodes, matted
0.5 cm sub-capsular liver met removed
pT3 pN2b pM1
Neg CEA, neg BRAF, mut KRAS, germline mut ATM
dMMR, MSI-H, Neg for Lynch
5/4/18 FOLFOX started
Added Neulasta 6/28/18
7/9/18 CT scans show no masses or enlarged nodes, 2mm indeterminate lung nodule

plastikos
Posts: 299
Joined: Wed Jan 14, 2015 6:09 am

Re: New Stage IV Diagnosis

Postby plastikos » Mon Aug 13, 2018 5:34 am

Why is surgery not an option? Go to a major cancer center. Look for a team willing to do the surgery. Test her tumor for MSI status. If they can take everything out and if she is a candidate for immuno or even just aggressive chemo then I don’t see why “cure” is impossible.
Diagnosed St. IV Colon CA @ 37, male, Kras wild type, MSI-high (2014)
11/2014 Right Hemicolectomy + Liver Resection
12/2014 - 6/2015 FOLFOX + Cetuximab
10/2015 - Recurrence liver
Liver resection 10/2015
FOLFIRI 11/2015 - 5/2016
Recurrence liver, nodes 11/2016
Pembrolizumab 12/2016 -> pseudoprogression (?), biliary obstruction -> biliary stenting
Chemo 4x: most mets inactive and smaller on PET-CT
March 2017 - Back on Pembrolizumab
Sept 2017 - SIRT

Stewsbetty
Posts: 124
Joined: Thu Jul 14, 2016 7:08 am

Re: New Stage IV Diagnosis

Postby Stewsbetty » Mon Aug 13, 2018 7:04 am

Hello,
Another Canuck here. :) I’m from BC. I know what you mean about difficulties with second opinions as I am in a rural area and there are limited surgeons and oncologists here.

I do think that genetic testing is very important but the folfiri plus bevacizumab doesn’t have any contraindications with Kras status. And it is standard of care here in BC. From a webinar that I just attended folfiri with bevacizumab is just as effective as folfiri with cetuximab or panitumumab.

However, I do think MSI testing is super important since I happen to be MSI-h and doing pembrolizumab (Keytruda) off label has saved my life.

Do they have samples from biopsies that they can do the testing on?

I have found personally that doing research on my own and then questioning my drs about what I have learned has yielded decent results. And I think that is is pretty standard for tumours to be profiled for at least Kras and Braf. I had to specifically ask for the MSI testing.

So research, ask questions and push for things that you want but be prepared for drs to want to follow through with all standard of care procedures before anything else is tried.

Beth
42yo At diagnosis. Female in BC, Canada
Dx: CC ascending
Right Hemi colectomy 06/16 clear margins
Adenocarcinoma 6cm High Grade
pT3 pN2a Stage 3
10 out of 16 lymph involved
MSI-h, Kras mut, Braf wild
Finished chemo Feb. 2017
PET scan showing active area April 2017
July 2017 CT showing LN mass and spread to other LN
Stage 4
Aug 2017 failed Fofiri
Sept 2017 keytruda
Nov 2017 CT scans show significant shrinkage in tumours
Feb 2018 CT continued shrinkage
May 2018 CT shrinkage and stable spots


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