New stage 4 colon cancer diagnosis

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Bpaint
Posts: 3
Joined: Sun Oct 11, 2020 8:54 pm

New stage 4 colon cancer diagnosis

Postby Bpaint » Mon Oct 12, 2020 12:53 pm

My husband (age 41) was diagnosed with stage 4 colon cancer on August 31. His primary tumor is in his sigmoid colon, and he has more tumors in his liver, lungs and distant lymph nodes. His CEA number was 713. He has now gone through 2 rounds of folfox + avastin. He had to skip his last round because he developed pneumonia and his immune system numbers were too low. Hopefully they will be up this week so he can start treatment again.

We are feeling sad and overwhelmed. We have two little kids (ages 3 and 6), and my husband wasn't having any pain or symptoms, just some bleeding that his primary doctor said he was 99% sure was hemorrhoids. I found this message board in trying to research information about whether there is anything we can do in addition to the chemo that would help my husband's chances. I've been reading through some of the posts on here, and there is a lot of information, but it is hard to tell whether it applies to him. It seems like the usefulness of things like supplements might depend on what type of cancer it is? The only information we have from the pathology report is that it is "low probability of msi-h." But there is no information about mutations or anything like that.

I am wondering whether anyone else had to wait a long time to get the results from genetic testing? His oncologist said he was ordering testing on the tumor, but it has been about 6 weeks now and we still haven't heard anything.

Lee
Posts: 6128
Joined: Sun Apr 16, 2006 4:09 pm

Re: New stage 4 colon cancer diagnosis

Postby Lee » Mon Oct 12, 2020 6:06 pm

Welcome, sorry for the reason you are here.

I can not answer your last question as that was not an option for me. Hopefully someone else with pop in with the answer. Don't know if you have already done this, butt if not, PLEASE get a 2nd opinion at a major cancer hospital. Because of his age, you want to be treated as aggressively as possible. Can I assume, other than his cancer, is over all health is good. Major cancer hospital tend to be on the leading edge of tomorrow standard of care. Know there have been a lot of advancement in the past few years. Has your husband had a "foundation one" test?

Does colon cancer run in his family?

Where are you located,

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 - 16 years and counting!

User avatar
beach sunrise
Posts: 240
Joined: Thu Mar 05, 2020 7:14 pm

Re: New stage 4 colon cancer diagnosis

Postby beach sunrise » Mon Oct 12, 2020 6:28 pm

Sounds like some feet dragging on oncologist part. It should not be taking 6 weeks. ***scratch that comment, I read it to fast. I have no idea about genetic testing
timeframe.**
And like Lee said, get a second opinion also. It might be very valuable!
Last edited by beach sunrise on Mon Oct 12, 2020 6:41 pm, edited 1 time in total.
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

Bpaint
Posts: 3
Joined: Sun Oct 11, 2020 8:54 pm

Re: New stage 4 colon cancer diagnosis

Postby Bpaint » Mon Oct 12, 2020 6:31 pm

He has no colon cancer in his family and he is overall very healthy besides the cancer. He ran 15 miles the week before his diagnosis.
We are in Madison, WI at the carbonne Cancer center. As far as I know, he hasn’t gotten a foundation 1 test.

roadrunner
Posts: 55
Joined: Sun Jan 12, 2020 8:46 pm

Re: New stage 4 colon cancer diagnosis

Postby roadrunner » Mon Oct 12, 2020 6:35 pm

In my view, six weeks — at least without explanation — is too long. And with these challenges, I support the recommendation to contact a major cancer center. MSK or MD Anderson would be good picks.
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.

Lee
Posts: 6128
Joined: Sun Apr 16, 2006 4:09 pm

Re: New stage 4 colon cancer diagnosis

Postby Lee » Mon Oct 12, 2020 8:03 pm

Bpaint wrote:He has no colon cancer in his family and he is overall very healthy besides the cancer. He ran 15 miles the week before his diagnosis.
We are in Madison, WI at the carbonne Cancer center. As far as I know, he hasn’t gotten a foundation 1 test.


If possible, find out what testing they are doing on your DH. Not sure what your medical plan is, butt if possible get to Sloan Kittering Memorial Hospital (NYC) for a 2nd opinion. I was a stage IIIC, I got a verbal 2nd opinion over the phone with the Mayo Clinic .It was good to know the care I was getting local was the standard care for someone like me, stage III. Again, advancements in the past few years helps with the type of treatment plan DH should be getting.

At one time, one chemo was the standard "one size fits all cancer patients". Times have changes, when the experts can break down the cancer cells, mutations, etc (va testing), than the experts can look at target therapy to address DH unique cancer. Foundation One is one of those testing to determine the best course (treatment plan) your DH should be on. This includes traditional chemo, targeted chemo, immunotheapy or clinical trials. Check it out.

I know this is a crash course in medical science. Butt you will find a wealth of information here. Not to mention a place people who understand what you are going through. We have your back

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 - 16 years and counting!

Bpaint
Posts: 3
Joined: Sun Oct 11, 2020 8:54 pm

Re: New stage 4 colon cancer diagnosis

Postby Bpaint » Mon Oct 12, 2020 8:46 pm

I appreciate your responses. I’m going to find out what’s going on with the testing so we can get an informed second opinion about treatment. Thank you all.

Gravelyguy
Posts: 323
Joined: Thu Jul 05, 2018 6:03 pm

Re: New stage 4 colon cancer diagnosis

Postby Gravelyguy » Mon Oct 12, 2020 9:15 pm

I am in MN and have had very good care at Mayo. They would be somewhat close for you guys.

Hang in there,

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0
12/19/19 clear scans CEA 1.0 still NED!
6/17/20 clear scans CEA 1.1 still NED!

rachelfromnyc
Posts: 57
Joined: Fri Oct 04, 2019 11:32 am

Re: New stage 4 colon cancer diagnosis

Postby rachelfromnyc » Mon Oct 12, 2020 11:31 pm

Your husband and I sound pretty similar. In terms of care, I started out at Lenox Hill then NYU then transferred to Sloan Kettering once it was confirmed that it was stage 4. I'm looking through my files to answer your question about genetic testing. Mine was done at MSK and it took 7 business days from the time they received the sample to when I received the results. So as others have indicated, 6 weeks is too long. As I've learned in my year or so of dealing with this, you definitely have to keep pushing and following up.
Dx May '19, one month after 37th bday
5/19: 3.4 cm tumor in transverse colon, distant lymph nodes, innumerable lung nodules
Moderately differentiated invasive adenocarcinoma
MSS, TMB 7.9, BRAF/KRAS wild
6/19 - 9/19: Folfox
10/19 - 2 new tumors in liver, switch to Folfiri w/ Avastin
3/20 - liver tumors no longer seen, primary tumor 0.9 cm, continue Folfiri w/ Avastin

boxhill
Posts: 607
Joined: Fri Apr 06, 2018 11:40 am

Re: New stage 4 colon cancer diagnosis

Postby boxhill » Tue Oct 13, 2020 10:36 am

I seem to recall my genetic testing taking at least 3 weeks in 2018, but there was some kind of delay involved that I don't recall. With the pandemic, a lot of lab work is taking longer all over the country. Nevertheless, if you can get your H's medical practice/genetic counselor to light a fire under them it wouldn't hurt. It is also possible that they are waiting on the genetic counselor to be able to present the results in person, in which case you could just ask them to have a telemedicine conversation and send the report.
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 and 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
Stop Key
8/20 MRI NED

NHMike
Posts: 2498
Joined: Fri Jul 21, 2017 3:43 am

Re: New stage 4 colon cancer diagnosis

Postby NHMike » Fri Oct 16, 2020 9:09 pm

Bpaint wrote:My husband (age 41) was diagnosed with stage 4 colon cancer on August 31. His primary tumor is in his sigmoid colon, and he has more tumors in his liver, lungs and distant lymph nodes. His CEA number was 713. He has now gone through 2 rounds of folfox + avastin. He had to skip his last round because he developed pneumonia and his immune system numbers were too low. Hopefully they will be up this week so he can start treatment again.

We are feeling sad and overwhelmed. We have two little kids (ages 3 and 6), and my husband wasn't having any pain or symptoms, just some bleeding that his primary doctor said he was 99% sure was hemorrhoids. I found this message board in trying to research information about whether there is anything we can do in addition to the chemo that would help my husband's chances. I've been reading through some of the posts on here, and there is a lot of information, but it is hard to tell whether it applies to him. It seems like the usefulness of things like supplements might depend on what type of cancer it is? The only information we have from the pathology report is that it is "low probability of msi-h." But there is no information about mutations or anything like that.

I am wondering whether anyone else had to wait a long time to get the results from genetic testing? His oncologist said he was ordering testing on the tumor, but it has been about 6 weeks now and we still haven't heard anything.


I'm sorry that you and your husband have to deal with this. 41 is too young for cancer.

I got my genetic results about six weeks after we started the paperwork but it was done by my son's boss as a favor.

Some hospitals can do the testing in-house but most send it out. So the tumor sample has to be sent by courier to a lab that does the testing. A lab tech prepares the sample block and puts it through a sequencing machine and then the output is run through a software pipeline for analysis and this can take many hours to run. Then the results are reviewed by a pathologist to write up a report. These things are run in a queue and there may be a lot of other tumor blocks to be tested so the actual process will take longer as you're tumor block processing is in a queue. My son said that the normal turnaround time is a week with normal operations.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT


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