I have just been diagnosed with colon cancer

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Tkoury
Posts: 4
Joined: Mon Jul 27, 2020 3:17 pm

I have just been diagnosed with colon cancer

Postby Tkoury » Mon Jul 27, 2020 3:25 pm

I have just been diagnosed with colon cancer and am scared to death.......my CT scan says it has spread to my liver.......
do you think this is treatable ?

Thea

roadrunner
Posts: 39
Joined: Sun Jan 12, 2020 8:46 pm

Re: I have just been diagnosed with colon cancer

Postby roadrunner » Mon Jul 27, 2020 9:04 pm

I’m sorry you got that news. It is indeed scary, but there is always treatment and hope. This is a wonderful forum, with lots of super helpful, super experienced folks who can help in many ways as you fight this. It is a great place to get support and knowledge. I have learned many, many important things here, some that I’ve seen nowhere else (despite my truly obsessive research : ) during my own cancer journey.

With respect to your question, the precise treatment approach will of course be determined by your doctors (and you). When you do ask questions, it is helpful to folks on this forum to see the details of your situation in your signature (you can look at people’s posts to see what to include, and mess around with the control panel until you figure out how to add to the signature). Or if that’s tough at this point, you can give relevant details in a post if you want.

Without knowing those details, I can’t responsibly say much, but please understand that the diagnosis you describe is not by any means a death sentence — there are many different situations — indeed, everyone is different — and therapies, more and more as time goes by, and there are many people (some on this forum) who have beaten colorectal cancer that has spread to the liver.

I wish you strength and good luck. You made a good choice by seeking out this forum.
7/19: Rectal cancer: Initially staged as IIIA, T2N1M0
Initially approx 4.25 cm, low/mid rectum, mod. well diff. adenocarcinoma
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (lots of side effects/reduced size est. 70-75%)
Switched to neoadjuvant chemorad in 11/19 (Xeloda and approx. IMRT, 60 Gy, 33 fractions)
Trying to achieve cCR.

Claudine
Posts: 396
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: I have just been diagnosed with colon cancer

Postby Claudine » Mon Jul 27, 2020 10:34 pm

Welcome to the forum no one ever wants to join, Thea. I hope you will find here answers to your questions, and support in difficult times - a lot of us have!
Getting such a diagnosis is incredibly distressing, but cancer - even metastatic CRC - isn’t the death sentence it once was. Especially when mets are confined to the liver. This amazing organ can be chopped up and it will regrow!

A few things to add to roadrunner’s comments. It may be still too soon after diagnosis, but it’s important to know one’s mutation status, especially KRAS, BRAF and NRAS mutations. Also, whether one is micro satellite stable (MSS) or not (MSI high); this will influence the type of treatment you receive (I.e., MSI H make sure you a candidate for immunotherapy).
Also, look into the HAI pump. This is a device that delivers chemo straight to the liver, and many here have had great success with it.

Good luck with everything - please don’t hesitate to come here with questions, or simply to vent frustration and anxiety.

Best,

Claudine
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 4.4
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20

brokenwings
Posts: 127
Joined: Mon Jan 07, 2019 1:50 am

Re: I have just been diagnosed with colon cancer

Postby brokenwings » Tue Jul 28, 2020 6:58 am

Hi Thea,

I imagine how scared you must feel: we've all been there. However, to answer your question, yes colon cancer that has spread to the liver is treatable and can be cured. We have patients in this board and other boards that have been in remission for years and some of them are considered cured.

As Claudine said, it is very, very important to get a molecular panel (Foundation One, Caris, etc.) to look for the following:
- MSS/MSI status;
- TMB;
- NTKR fusions;
- BRAF, KRAS, NRAS, HRAS mutations;
- HER2/ERBB2 amplifications;
- PIK3CA mutations.

It's also important to have genetic testing and check for mutations in the POLE gene and the Lynch genes.

As for treatment, I second Claudine's idea to look into the HAI pump.

If you have any doubt, don't hesitate to ask for help.

Hugs.

Paola
DX 2019 Adenocarcinoma Sigmoid colon. PC + ovarian met.
Obstruction. Temporary colostomy.
Folfirinox + Avastin: 6 cycles. Scans: partial response.
Surgery (CRS + HIPEC) 04/29: too much disease, surgery cancelled. Right ovary removed.
2nd ptotocol: IP chemo (oxaliplatin) + IV chemo (Folfiri + Avastin). 8 cycles
10/31/2019: 11 hour-long Hipec + 6 weeks in hospital
12/30/2019: liver met
02/05/2020: reversal surgery. New peri mets discovered
March 2020: 5fu+Avastin
May 2020: fistula
Back to 1957: 5fu.

Tkoury
Posts: 4
Joined: Mon Jul 27, 2020 3:17 pm

Re: I have just been diagnosed with colon cancer

Postby Tkoury » Tue Jul 28, 2020 10:28 am

Thank you all for your replys......I dont know what any of these acronyms are......what is an HAI pump? I do not have insurance so I am at the mercy of what ever discount servicers I can find to help me.....I am trying to get an Oncologist to work with me thru JPS(i am in Texas) this is a teaching hospital, so I dont know that I will have access to any of these things you all have spoken of........I have been diagnosed with Anemia which is what has led to all of this.....so with said I am feeling pretty bad from the Anemia, The Anemia started a couple months ago and the Cancer screening started 3 weeks ago......I want to be positive but finding it difficult right now, this is my first conversations with anyone about all of this......

boxhill
Posts: 570
Joined: Fri Apr 06, 2018 11:40 am

Re: I have just been diagnosed with colon cancer

Postby boxhill » Tue Jul 28, 2020 12:44 pm

If at all possible I think you should be seen at MD Anderson in Houston. If they have a satellite cancer center closer to you, you could try that. Not only are they one of the top cancer centers in the country, but places like that usually have patient financial support offices that can help you figure out the payment issue. Access to state funds, etc.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 CT NED
11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Suspend treatment

Tkoury
Posts: 4
Joined: Mon Jul 27, 2020 3:17 pm

Re: I have just been diagnosed with colon cancer

Postby Tkoury » Tue Jul 28, 2020 1:03 pm

Sweetie I am in DFW, I hopefully going to be accepted thru JPS.. I noticed you were also diagnosed with Colon Cancer that has moved to your liver.....did you do chemo? how long have you been dealing with this? does the chemo effect your quality of life? Thank you for talking to me

stu
Posts: 1364
Joined: Sat Aug 17, 2013 5:46 pm

Re: I have just been diagnosed with colon cancer

Postby stu » Tue Jul 28, 2020 2:53 pm

Hi ,

Just to give you a little encouragement my mum responded to standard chemo which lead to surgery . Different country but the standard approach without the backup of private medicine. Still doing well 11 years later .
Wishing you every success.
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 .

Tkoury
Posts: 4
Joined: Mon Jul 27, 2020 3:17 pm

Re: I have just been diagnosed with colon cancer

Postby Tkoury » Tue Jul 28, 2020 3:25 pm

Yes Stu that is very encouraging......
God Bless you and your mum..

roadrunner
Posts: 39
Joined: Sun Jan 12, 2020 8:46 pm

Re: I have just been diagnosed with colon cancer

Postby roadrunner » Tue Jul 28, 2020 4:16 pm

IMO Stu’s point is very important. Various chemotherapy regimes have been successful in eradicating or reducing liver metastasis in CRC. The HAI pump can also work, but these are questions to discuss with your oncologist.
7/19: Rectal cancer: Initially staged as IIIA, T2N1M0
Initially approx 4.25 cm, low/mid rectum, mod. well diff. adenocarcinoma
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (lots of side effects/reduced size est. 70-75%)
Switched to neoadjuvant chemorad in 11/19 (Xeloda and approx. IMRT, 60 Gy, 33 fractions)
Trying to achieve cCR.

brokenwings
Posts: 127
Joined: Mon Jan 07, 2019 1:50 am

Re: I have just been diagnosed with colon cancer

Postby brokenwings » Tue Jul 28, 2020 4:25 pm

I can't help with the financial issue (I'm not in the US) but you really need to get tested. Getting tested might change the treatment plan.
If you're...
MSI: you can do immunotherapy instead of chemotherapy.
BRAF+: you can do targeted therapy and later chemo.
KRAS+: you can't use Erbitux nor Vectibix.
HER2: you might need targeted therapy instead of chemo.
NTKR: targeted therapy works better than chemo.
You should get at least these ones checked...
You can see if Foundation One, Guardant or Caris can test you free of charge...
All the best.
DX 2019 Adenocarcinoma Sigmoid colon. PC + ovarian met.
Obstruction. Temporary colostomy.
Folfirinox + Avastin: 6 cycles. Scans: partial response.
Surgery (CRS + HIPEC) 04/29: too much disease, surgery cancelled. Right ovary removed.
2nd ptotocol: IP chemo (oxaliplatin) + IV chemo (Folfiri + Avastin). 8 cycles
10/31/2019: 11 hour-long Hipec + 6 weeks in hospital
12/30/2019: liver met
02/05/2020: reversal surgery. New peri mets discovered
March 2020: 5fu+Avastin
May 2020: fistula
Back to 1957: 5fu.

User avatar
texmexflute
Posts: 11
Joined: Mon Dec 31, 2018 9:59 pm
Location: Dallas, Texas

Re: I have just been diagnosed with colon cancer

Postby texmexflute » Tue Jul 28, 2020 8:51 pm

I'm at UTSW in Dallas and have had top notch care there with amazing doctors. I've had colon resection, 2 liver surgeries, 2 different chemos, and a clinical trial with immunotherapy there. At the current time I'm clear of cancer (last liver surgery was in June). Right now we're just watching and waiting to see if any other mets pop up in my liver. I believe that even as a stage 4, there can be remission or cure. It's been done. Hang in there!
62 yo Male (polio survivor) DX 2-2018
2-18 right hemi-colectomy (robotic/minimally invasive)
Stage 3b - T4N1Mx
3-18 thru 8-18 xeloda
9-18 scans indicate 4 liver mets
and possibly in omentum/peritoneum
Upgraded to stage 4
9-18 thru 11-18 4 rounds Folfiri + Avastin, 2 rounds Folfiri only
12-26-18 3 liver mets removed (robotic/minimally invasive) + omentum biopsy (no cancer)
1-19 SBRT remaining 2 liver mets that were hard to reach
2-19 begin 6 rounds of mop-up chemo but folfox this time


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