Big Decision

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Andrea1976
Posts: 384
Joined: Sun Jan 03, 2016 10:32 am

Big Decision

Postby Andrea1976 » Tue Feb 23, 2016 11:24 am

Hi,

I am making a big decision this week. I have a scheduled left colectomy laparoscopic for Monday. I have seen 4 surgeons and they are divided.

History; bleeding Pedunculated polyp 5 cm. So it was big in my descending colon. Stalk 2 cm free of cancer and dysplasia and no lymph invision. Cancer T1 contained to Haggit level 1 / head of the polyp. I had 2 pathologist review the case. Another hospital just completed another review of the slides. And added that Lynch is unlikely. I should have the genetic testing next 2 weeks completed.

Cancer center wants to monitor with MRI in April. 2 colorectal surgeons say surgery is reasonable. 2 colorectal surgeon says no. One of them even say just colonoscopy every 5 years. Other one close monitoring and colonoscopy in 6 months.

My question is: will I lower my chances of cancer spreading and reoccurrence with surgery? Would you have the surgery and lymph nodes checked? Studies are all over the place. Some say less than 1/% chance of lymph nodes involvement if Hagget level 1. Some say 3-6%. But most say less than 1%. No idea what to do...

Also I had another 3 mm adenoma in cecum no cancer.

zx10guy
Posts: 232
Joined: Mon Jan 07, 2013 12:54 pm

Re: Big Decision

Postby zx10guy » Tue Feb 23, 2016 11:42 am

Sorry to be blunt. But after lurking through your posts, no answer will satisfy you except someone saying, "Sure, go ahead with surgery." Based on your posts, you're looking for someone to tell you it's ok to go ahead with surgery. You're ignoring all the posts telling you it shouldn't be necessary and the T1 depth invasion into your colon wall makes absolutely no sense since there was no cancer cells detected in the stalk of the polyp.

Surgery isn't to be taken lightly. There are many complications which can result from a surgical procedure. To forge ahead with doing a procedure which is "elective" isn't sound judgement. And I wouldn't put too much emphasis on two CRC surgeons saying surgery is reasonable. If you're determined enough, you can find any medical doctor to agree to something you really want.

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Bev G
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Location: Quechee, VT

Re: Big Decision

Postby Bev G » Tue Feb 23, 2016 11:50 am

zx10guy wrote:Sorry to be blunt. But after lurking through your posts, no answer will satisfy you except someone saying, "Sure, go ahead with surgery." Based on your posts, you're looking for someone to tell you it's ok to go ahead with surgery. You're ignoring all the posts telling you it shouldn't be necessary and the T1 depth invasion into your colon wall makes absolutely no sense since there was no cancer cells detected in the stalk of the polyp.

Surgery isn't to be taken lightly. There are many complications which can result from a surgical procedure. To forge ahead with doing a procedure which is "elective" isn't sound judgement. And I wouldn't put too much emphasis on two CRC surgeons saying surgery is reasonable. If you're determined enough, you can find any medical doctor to agree to something you really want.


Completely agree.
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

Andrea1976
Posts: 384
Joined: Sun Jan 03, 2016 10:32 am

Re: Big Decision

Postby Andrea1976 » Tue Feb 23, 2016 12:01 pm

Thank you. You are probably correct and I am acting irrational. I still have young kids and no family to raise them if I am not here. My father past away last year and my mom is a breast cancer survivor and doesn't speak English. I just want to be as aggressive as I can be to fight this.

Report from my 2nd pathology dep:
Cecum: tubular adenoma no cancer
Descending colon: polypectomy. Infiltrating mod diff adenocarcinoma arising in a tubulovious adenoma with extensive high grade dysplasia (adenocarcinoma in situ). Tumor extends into submucusa pt1 without evidence of lymphovascular or perineural invasion. Cauterized surgical margins negative for dysplasia and neoplasia.
Mismatch repair analysis by immunohistpchemitry:
MLH: 100% (3+) no loss of expression
MSH2: 100/% (3+) no loss of expression
MSH6: 50% (1+) equivocal
PMS2: 100% (3+) no loss of expression
No loss of expression of a major or minor mismatch repair proteins seen. Typical seen in carcinomas that are the result of chromosomal rather than microsatellite instibility. Strongly suggests not Lynch syndrom.

By report PCR evaluation of the tumor for microsatellite instibility including analysis of BAT-26, NR-21, BAT-25, MONO-27 and NR-24. 2 distinct peaks at BAT-25 locus. Although this could be due to instibility at this locus, it more likely represents a germline polymorphism.
Last edited by Andrea1976 on Tue Feb 23, 2016 12:28 pm, edited 1 time in total.

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

Re: Big Decision

Postby mariane » Tue Feb 23, 2016 12:16 pm

I would suggest non standard option but the one which helps you predict the cancer outcome and to be on safest possible side. If histology of the tumor was aggressive -signer ring cancer go for surgery. I would check cancer for at least basic mutations like kras, braf, nras, pik3a. The more the better. You have braf go for surgery, the others carefully rethink. This is not a standard but helps to predict a bit cancer behavior.
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!

zx10guy
Posts: 232
Joined: Mon Jan 07, 2013 12:54 pm

Re: Big Decision

Postby zx10guy » Tue Feb 23, 2016 12:21 pm

Andrea1976 wrote:Thank you. You are probably correct and I am acting irrational. I still have young kids and no family to raise them if I am not here. My father past away last year and my mom is a breast cancer survivor and doesn't speak English. I just want to be as aggressive as I can be to fight this.


I totally get wanting to do everything you can to beat this. But other than catching this as just a polyp no cancer cells, you're in the next best position in catching the polyp with the cancer cells contained in the head of the polyp. There are tons of us wishing we were in that situation.

And as far as kids go, I get that too. I'm just starting my family with a 1 year old. I'm the sole money maker in my family at the moment and I take care of our large stock pile of bills. If I were to drop dead now, there's no way my wife or anyone in our immediate family would be able to financially assist. So I get the pressure of looking out for your family. I'm not the worst off compared to others here but I'm not out of the woods yet with my Stage 3b status being 3 years out from surgery.

Andrea1976
Posts: 384
Joined: Sun Jan 03, 2016 10:32 am

Re: Big Decision

Postby Andrea1976 » Tue Feb 23, 2016 12:32 pm

Report from my 2nd pathology dep:
Cecum: tubular adenoma no cancer
Descending colon: polypectomy. Infiltrating mod diff adenocarcinoma arising in a tubulovious adenoma with extensive high grade dysplasia (adenocarcinoma in situ). Tumor extends into submucusa pt1 without evidence of lymphovascular or perineural invasion. Cauterized surgical margins negative for dysplasia and neoplasia.
Mismatch repair analysis by immunohistpchemitry:
MLH: 100% (3+) no loss of expression
MSH2: 100/% (3+) no loss of expression
MSH6: 50% (1+) equivocal
PMS2: 100% (3+) no loss of expression
No loss of expression of a major or minor mismatch repair proteins seen. Typical seen in carcinomas that are the result of chromosomal rather than microsatellite instibility. Strongly suggests not Lynch syndrom.

By report PCR evaluation of the tumor for microsatellite instibility including analysis of BAT-26, NR-21, BAT-25, MONO-27 and NR-24. 2 distinct peaks at BAT-25 locus. Although this could be due to instibility at this locus, it more likely represents a germline polymorphism.

Andrea1976
Posts: 384
Joined: Sun Jan 03, 2016 10:32 am

Re: Big Decision

Postby Andrea1976 » Tue Feb 23, 2016 12:34 pm

I know a lot of people here have young kids... So sad:-(

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

Re: Big Decision

Postby mariane » Tue Feb 23, 2016 12:55 pm

They only checked your tumor for lynch. No data about other mutations. Are you in Canada?public healthcare usually needs more push to do something that is not a standard. You have regular adenocarcinoma mod diff histologically. Tumors with aggressive biology mutate and attack faster. I strongly believe and in medical world it is the only way to a bit ( we know so little) who progresses from stage 1to4.
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!

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

Re: Big Decision

Postby mariane » Tue Feb 23, 2016 1:05 pm

Any cancer treatment for solid tumors for any stage is cutting it like a weed. Even stage 4 can be cured by complete resection. Your cancer looks completely resected. There are a few people who progress from stage 1 to 4 with microscopic undetectable cancer left and aggressive tumor biology.

There is this new watch and see approach to rectal cancers after chemo with radiation but stats of survival of "watch and see" are about 10% lower than resection. Comfort of life is better without resection so there is a bit of a choice. Anyway they receive chemo.

It is not your case :) just to be completely state of art. There is no surgery approach attempted sometimes with increasingly good results.
Last edited by mariane on Tue Feb 23, 2016 1:14 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!

Andrea1976
Posts: 384
Joined: Sun Jan 03, 2016 10:32 am

Re: Big Decision

Postby Andrea1976 » Tue Feb 23, 2016 1:05 pm

Thanks. I am still in process of testing. What does it mean peak at 25?

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

Re: Big Decision

Postby mariane » Tue Feb 23, 2016 1:23 pm

I am not such an expert ;) but they suggest that slight instability in this gene locus is not due to Lynch. It is good you are not Lynch. You do not need pembrolizumab at this point and you are less likely to develop other cancer. Your kids are less likely to develop cancer if they are not Lynch. But!!! You have tendency to develop carcinous polyps . so colonoscopy yearly is your future to be on safe side. :D
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!

Andrea1976
Posts: 384
Joined: Sun Jan 03, 2016 10:32 am

Re: Big Decision

Postby Andrea1976 » Tue Feb 23, 2016 1:33 pm

Thank you! I really appreciate it. I live in the US. I am still waiting to get official Lynch report testing. As well as I have an app with cancer center tomorrow for other testing.

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

Re: Big Decision

Postby mariane » Tue Feb 23, 2016 1:39 pm

Best of luck!
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!

weisssoccermom
Posts: 5976
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Big Decision

Postby weisssoccermom » Tue Feb 23, 2016 3:28 pm

Andrea....I'm sorry to be blunt here, but I have to agree with zx10guy.....in that you seem to want to have the surgery. Now, I understand that you are scared....perfectly normal...who wouldn't be? And I understand the concern for not wanting to take something out because, well, you can. You need to understand though, that just because you can live without a portion of your colon, your entire digestive tract will likely not be the same. The operation you're talking about isn't the same as taking someone's appendix out. Your colon has a purpose and removing a significant part of it will have some consequences. I've replied a few times in your other threads that it doesn't make ANY sense how you could be a stage I without the cancer even reaching the colon wall and I suggested that you get this clearly spelled out to you. Remember surgeons are going to naturally want to do surgery....that's their job.

Do what you feel is best for you but understand than when you ask for advice from members, some of whom have advanced stages, they will recommend being as aggressive as possible...simply because of their situation which is totally understandable. Your cancer, according to the pathology reports and everything you have written, was confined SOLELY to the head of the polyp with good clean margins in the stalk. Consider yourself lucky that it was caught so early and you avoided other problems. Your doctor will likely do another scope in one year and then, depending on those results you could go in another year or three years until the next one. Remember that not all cancer treatments require that you have surgery, chemo or other treatments.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
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