Three Basic Questions

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testing765
Posts: 324
Joined: Tue Aug 19, 2014 9:41 am

Three Basic Questions

Postby testing765 » Thu Oct 23, 2014 3:20 pm

Hi. I have three questions that I thought someone might have some insight on.

1. Is there any evidence to suggest that a low grade tumor (well to moderately differentiated) is less affected/impacted by chemotherapy like FOLFOX than would be a high grade (poorly differentiated) tumor? I thought perhaps that since a low grade tumor may replicate slower than a high grade tumor, that chemotherapy may not be as effective against a low grade/slower replicating tumor as opposed to a high grade/faster replicating tumor?

2. When I review people's signatures on Colon Club, it appears that people who have been treated for Rectal Cancer as opposed to Colon Cancer are more likely to achieve No Evidence of Disease (NED) status. Is this just a coincidental review, or does data support that, on average, rectal cancer patients are more likely to achieve NED status than are colon cancer patients?

3. The tumor that was removed during the colon resection is being tested for Microsatellite Instability. In terms of whether the colon cancer is considered more or less treatable, do I prefer that the outcome is Microsatellite Instability- High, Stable or Low? I'm confused about this concept.

Thanks.
male-age 44 at diagnosis
8/14-clnscopy
8/14-CT scan,no mets
9/14-left colectomy,CEA 2.2 before surgery
pT2pN2bpM0
3 cm tumor in dscnding colon
7/23 pos LNs
low grade MSI stable
10/14-start folfox
1/15-CT & PET scan and sigmdoscopy- no mets
3/15-finish folfox
9/15- clnscopy- 3 polyps removed
10/15- CT scan, NED
10/16- CT scan, NED, CEA 1.6
10/17- clnscopy- 4 polyps removed, CT scan NED, CEA 1.8
10/14 1.9; 4/15 2.8; 5/15 2.4; 9/15 2.8; 12/15 3.1; 1/16 3.0; 4/16 2.5; 7/16 2.5; 10/16 1.6; 1/17 1.9

justin case
Posts: 4269
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: Three Basic Questions

Postby justin case » Thu Oct 23, 2014 4:02 pm

I will take a shot at this question, concerning rectal cancer. If people follow through with the whole protocol- chemo, chemo/radiation, surgery, and further chemo, that is a lot of treatment, to throw at cancer. Sometimes, it even works if the cancer is caught early through a colonoscopy. I hate going to the doctor, butt if I had taken my doctor's advise 1 year earlier, you may not be reading this from me :roll:
Michael
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

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NZJay
Posts: 640
Joined: Mon Dec 16, 2013 3:00 pm
Location: NZ

Re: Three Basic Questions

Postby NZJay » Thu Oct 23, 2014 4:20 pm

1. I read something on the forums recently which suggested higher grade tumours can be more responsive to treatment, but that certainly doesn't mean you're better off with one! Can't quote any studies, sorry.

2. Well that depends on what you consider NED. Technically, any patient who has been successfully resected is thus NED. It's all about Staying NED. FWIW rectal patients have a longer wait until they're considered permanently NED aka cured (hate using that word). I believe it's 10 years vs 5 years.

3. Never heard of this, sorry.
11-13 Dx CC
SPS T4b(touched stomach organ),N1(3/23),M0(Stage 3B)
11-13: resect + partial gastrect
2-14: 1 Tx Cape + Oxy; renal failure, colitis
4-14: 7 Tx Capecitabine
1-15: clear CT
7-15: clear scope
1-16: clear CT
3-17: clear CT
10-17: clear scope (5 year gap now!)
CEA@dx: 8.4 / 6-15: 4.0 / 10-15: 4.2 / 2-16: 4.9 / 7-16: 4.9 / 11-16: 5.0 / 6-17: 4.5
NED since resection

testing765
Posts: 324
Joined: Tue Aug 19, 2014 9:41 am

Re: Three Basic Questions

Postby testing765 » Thu Oct 23, 2014 4:34 pm

NZJay wrote:1. I read something on the forums recently which suggested higher grade tumours can be more responsive to treatment, but that certainly doesn't mean you're better off with one! Can't quote any studies, sorry.

2. Well that depends on what you consider NED. Technically, any patient who has been successfully resected is thus NED. It's all about Staying NED. FWIW rectal patients have a longer wait until they're considered permanently NED aka cured (hate using that word). I believe it's 10 years vs 5 years.

3. Never heard of this, sorry.


Hi NZJay-

Thank you for your response. In regard to 1, I thought I had read something like you did, that higher grade tumors are more responsive to treatment. And I wondered, well if a higher grade tumor is more responsive to treatment, is it better that a tumor is identified as a high grade tumor? In regard to 2, I thought I remember reading something about rectal cancer requiring a longer window of time (ten years) before "cured" status. So i guess you can't really compare rectal cancer disease free survival rates with colon cancer disease free survival rates? Kind of like apples and oranges....
male-age 44 at diagnosis
8/14-clnscopy
8/14-CT scan,no mets
9/14-left colectomy,CEA 2.2 before surgery
pT2pN2bpM0
3 cm tumor in dscnding colon
7/23 pos LNs
low grade MSI stable
10/14-start folfox
1/15-CT & PET scan and sigmdoscopy- no mets
3/15-finish folfox
9/15- clnscopy- 3 polyps removed
10/15- CT scan, NED
10/16- CT scan, NED, CEA 1.6
10/17- clnscopy- 4 polyps removed, CT scan NED, CEA 1.8
10/14 1.9; 4/15 2.8; 5/15 2.4; 9/15 2.8; 12/15 3.1; 1/16 3.0; 4/16 2.5; 7/16 2.5; 10/16 1.6; 1/17 1.9

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NZJay
Posts: 640
Joined: Mon Dec 16, 2013 3:00 pm
Location: NZ

Re: Three Basic Questions

Postby NZJay » Thu Oct 23, 2014 4:45 pm

testing765 wrote:
NZJay wrote:1. I read something on the forums recently which suggested higher grade tumours can be more responsive to treatment, but that certainly doesn't mean you're better off with one! Can't quote any studies, sorry.

2. Well that depends on what you consider NED. Technically, any patient who has been successfully resected is thus NED. It's all about Staying NED. FWIW rectal patients have a longer wait until they're considered permanently NED aka cured (hate using that word). I believe it's 10 years vs 5 years.

3. Never heard of this, sorry.


Hi NZJay-

Thank you for your response. In regard to 1, I thought I had read something like you did, that higher grade tumors are more responsive to treatment. And I wondered, well if a higher grade tumor is more responsive to treatment, is it better that a tumor is identified as a high grade tumor?

In regard to 2, I thought I remember reading something about rectal cancer requiring a longer window of time (ten years) before "cured" status. So i guess you can't really compare rectal cancer disease free survival rates with colon cancer disease free survival rates? Kind of like apples and oranges....


Well, high grade tumours tend to be more aggressive and faster growing. Would you want to have that inside you? My surgeons described my tumour as a big, dumb cancer. Slow growing, not very good at spreading.
Pathology was low grade, moderately differentiated - same as you.

While I take nothing away from the seriousness of my situation, this did comfort me somewhat. Why? Because if things ever turned *next level* for me, it'd probably take longer to kill me than a high grade cancer would.

I'd rather have a stupid monster chasing me than a smart one.

Without meaning to sound dismissive, I don't see any point in comparing rectal to colon cancer or worrying about their respective survival rates or whatever. We have what we have, ya know?
All that really matters is that we as individuals get through our treatment and are diligent in maintaining our health and enjoying our lives. Which will hopefully be long ones!
11-13 Dx CC
SPS T4b(touched stomach organ),N1(3/23),M0(Stage 3B)
11-13: resect + partial gastrect
2-14: 1 Tx Cape + Oxy; renal failure, colitis
4-14: 7 Tx Capecitabine
1-15: clear CT
7-15: clear scope
1-16: clear CT
3-17: clear CT
10-17: clear scope (5 year gap now!)
CEA@dx: 8.4 / 6-15: 4.0 / 10-15: 4.2 / 2-16: 4.9 / 7-16: 4.9 / 11-16: 5.0 / 6-17: 4.5
NED since resection

testing765
Posts: 324
Joined: Tue Aug 19, 2014 9:41 am

Re: Three Basic Questions

Postby testing765 » Thu Oct 23, 2014 5:43 pm

Hi NZJay-

I agree with you in particular about the following-

"Without meaning to sound dismissive, I don't see any point in comparing rectal to colon cancer or worrying about their respective survival rates or whatever. We have what we have, ya know?
All that really matters is that we as individuals get through our treatment and are diligent in maintaining our health and enjoying our lives. Which will hopefully be long ones!"
male-age 44 at diagnosis
8/14-clnscopy
8/14-CT scan,no mets
9/14-left colectomy,CEA 2.2 before surgery
pT2pN2bpM0
3 cm tumor in dscnding colon
7/23 pos LNs
low grade MSI stable
10/14-start folfox
1/15-CT & PET scan and sigmdoscopy- no mets
3/15-finish folfox
9/15- clnscopy- 3 polyps removed
10/15- CT scan, NED
10/16- CT scan, NED, CEA 1.6
10/17- clnscopy- 4 polyps removed, CT scan NED, CEA 1.8
10/14 1.9; 4/15 2.8; 5/15 2.4; 9/15 2.8; 12/15 3.1; 1/16 3.0; 4/16 2.5; 7/16 2.5; 10/16 1.6; 1/17 1.9

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

Re: Three Basic Questions

Postby chrissyrice » Thu Oct 23, 2014 6:15 pm

What was your oncologist's answers to these questions?

Keep in mind that there are lots of NED folks out there that do not come to this website board.

While we do have lots of people on this site it's not a true sampling of the population who have gone on to be NED after being treated for colon or rectal cancer.

I come here because there is hope and I want to give back to people like you who are starting chemo with exactly the same thoughts I had too.

I understand you want to know your long term outcome from this life changing event and what are the odds of this killing you or will you survive and go on to live past 1, 2, 3, 4, 5 years and not have it come back.

But, like the rest of us, you will just have to wait and see at each blood draw and scan for some years to come. Coping with the chemo and tests and scans is not easy but people here can help encourage you in ways that are meaningful and based on and from their own experiences.

By no means are we experts, just people like yourself who developed cancer and are here to talk about it.

Lifting you up in good thoughts as you start chemo.

Chrissy
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

justin case
Posts: 4269
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: Three Basic Questions

Postby justin case » Thu Oct 23, 2014 6:58 pm

NZJay wrote:1. I read something on the forums recently which suggested higher grade tumours can be more responsive to treatment, but that certainly doesn't mean you're better off with one! Can't quote any studies, sorry.

2. Well that depends on what you consider NED. Technically, any patient who has been successfully resected is thus NED. It's all about Staying NED. FWIW rectal patients have a longer wait until they're considered permanently NED aka cured (hate using that word). I believe it's 10 years vs 5 years.

3. Never heard of this, sorry.

Since stats are significant in this thread, if you had colon cancer, and rectal cancer at the same time, does that make NED status, 7.5 years, or 15 :roll: :roll: :roll: As I am old, I just want to know if I should take social security at 63, or wait until I'm 70?
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

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NZJay
Posts: 640
Joined: Mon Dec 16, 2013 3:00 pm
Location: NZ

Re: Three Basic Questions

Postby NZJay » Thu Oct 23, 2014 7:44 pm

justin case wrote:
NZJay wrote:1. I read something on the forums recently which suggested higher grade tumours can be more responsive to treatment, but that certainly doesn't mean you're better off with one! Can't quote any studies, sorry.

2. Well that depends on what you consider NED. Technically, any patient who has been successfully resected is thus NED. It's all about Staying NED. FWIW rectal patients have a longer wait until they're considered permanently NED aka cured (hate using that word). I believe it's 10 years vs 5 years.

3. Never heard of this, sorry.

Since stats are significant in this thread, if you had colon cancer, and rectal cancer at the same time, does that make NED status, 7.5 years, or 15 :roll: :roll: :roll: As I am old, I just want to know if I should take social security at 63, or wait until I'm 70?


I believe that puts you beyond my severely minimalist mathematical capabilities.
11-13 Dx CC
SPS T4b(touched stomach organ),N1(3/23),M0(Stage 3B)
11-13: resect + partial gastrect
2-14: 1 Tx Cape + Oxy; renal failure, colitis
4-14: 7 Tx Capecitabine
1-15: clear CT
7-15: clear scope
1-16: clear CT
3-17: clear CT
10-17: clear scope (5 year gap now!)
CEA@dx: 8.4 / 6-15: 4.0 / 10-15: 4.2 / 2-16: 4.9 / 7-16: 4.9 / 11-16: 5.0 / 6-17: 4.5
NED since resection

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chemo sabe
Posts: 444
Joined: Fri Mar 09, 2012 9:01 pm

Re: Three Basic Questions

Postby chemo sabe » Thu Oct 23, 2014 8:14 pm

I will echo Chrissyrice. What does your Onc tell you? To continue with Miss Chrissy's line - there are something like 100,000 new CRC patients every year. People here are just telling their story - do not read anything into it.
64 year old male
Diagnosed Stage 3 Rectal Cancer - T3N1M0 - Oct 2011
28 radiation treatments with xeloda
Colon resection with ileostomy Feb 2012
8 Rounds of Xelox completed Sept 2012
Ileostomy reversal surgery Oct 2012
Incisional Hernia Repair Nov 2013

testing765
Posts: 324
Joined: Tue Aug 19, 2014 9:41 am

Re: Three Basic Questions

Postby testing765 » Thu Oct 23, 2014 8:23 pm

chemo sabe wrote:I will echo Chrissyrice. What does your Onc tell you? To continue with Miss Chrissy's line - there are something like 100,000 new CRC patients every year. People here are just telling their story - do not read anything into it.


Good point. Good point. Thanks.
male-age 44 at diagnosis
8/14-clnscopy
8/14-CT scan,no mets
9/14-left colectomy,CEA 2.2 before surgery
pT2pN2bpM0
3 cm tumor in dscnding colon
7/23 pos LNs
low grade MSI stable
10/14-start folfox
1/15-CT & PET scan and sigmdoscopy- no mets
3/15-finish folfox
9/15- clnscopy- 3 polyps removed
10/15- CT scan, NED
10/16- CT scan, NED, CEA 1.6
10/17- clnscopy- 4 polyps removed, CT scan NED, CEA 1.8
10/14 1.9; 4/15 2.8; 5/15 2.4; 9/15 2.8; 12/15 3.1; 1/16 3.0; 4/16 2.5; 7/16 2.5; 10/16 1.6; 1/17 1.9

WifeOfMike
Posts: 1495
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Facebook Username: https://www.facebook.com/vbass123
Location: San Diego, California

Re: Three Basic Questions

Postby WifeOfMike » Fri Oct 24, 2014 3:22 am

Hey there,

Since no one addressed the Microsatellite Stability/ Instability question, I will paste here exactly what it shows on my hubby's Response Genetics test on the subject:
Especially because the answer is relative to quite a few things in your overall prognosis

About 15% of sporadic colorectal cancers (CRC) display microsatellite instability (MSI), where tumors harbor insertion-deletion mutations that mostly constitute tandem-repeated nucleotides, called microsatellites. This change of microsatellite length in DNA is caused by defects in the DNA mismatch repair (MMR) system and leads to loss of function mutations in tumor suppressor genes like TGFBR2, IGF2R and PTEN and gain-of function mutations in oncogenes such as BRAF.

An estimated 20% of these CRC cases are caused by germ line mutations within the MMR system, a condition known as hereditary nonpolyposis colorectal cancer (HNPCC) or Lynch syndrome. Therefore MSI detection is an effective tool to screen for colorectal cancer patients, which are likely to have Lynch syndrome.

Clinical evidence strongly suggests that MSI predicts a better prognosis and recurrence-free survival than microsatellite stable tumors (MSS) in the adjuvant setting of CRC, especially for stage II but also for stage III disease. This is particularly helpful for treatment decisions concerning adjuvant chemotherapy in patients with high MSI (MSI-H).

Although early investigation described a better response of MSI-H tumors to 5-FU-based adjuvant therapy, an increasing number of recent studies indicate that MSI-H tumors do not benefit from 5-FU-based chemotherapy in comparison to microsatellite stable tumors (MSS). In the CALGB 89803 trial it was reported that stage III CRC patients with MSI-H had a better response to irinotecan plus 5-fluorouracil compared to patients with MSS treated with the same regimen

As Chrissy & others point out- Apples OR Oranges- what is IS
wishing you the best journey possible,
Vicki
Bad Ass WIFE
Hubs: CRC IVA,T3, N0, M1A
Resect/LN Mets 10/12
Folfox4/Avastin 11/12-5/13
Folfiri/Erbitux 6/13-10/13
Stivarga 12/13-4/14
Trial 4/14-/14
Trial 8/14-11/14
HOME Hospice 11/17/14
Guardian Angel 1/1/15
Cost of HOPE? PRICELESS

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BrownBagger
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Location: Central NYS

Re: Three Basic Questions

Postby BrownBagger » Fri Oct 24, 2014 9:22 am

On the question regarding rectal cancer vs colon cancer and NED status, my anecdotal observations suggest the opposite, because I think these days, liver involvement is more treatable than lung involvement, and rectal tends to go to the lungs vs. colon, which typically goes to the liver. Put another way, I think I would be better off today with liver involvement than lung involvement. It doesn't always follow that pattern, of course, and I'm not pretending that I have any concrete evidence to back this up. Just a casual observation.

Could be that rectal is detected earlier, which would certainly make it more survivable. But it is true that the "waiting period" on a cure is 10 years vs. 5 for colon cancer.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

testing765
Posts: 324
Joined: Tue Aug 19, 2014 9:41 am

Re: Three Basic Questions

Postby testing765 » Fri Oct 24, 2014 10:40 am

BrownBagger wrote:On the question regarding rectal cancer vs colon cancer and NED status, my anecdotal observations suggest the opposite, because I think these days, liver involvement is more treatable than lung involvement, and rectal tends to go to the lungs vs. colon, which typically goes to the liver. Put another way, I think I would be better off today with liver involvement than lung involvement. It doesn't always follow that pattern, of course, and I'm not pretending that I have any concrete evidence to back this up. Just a casual observation.

Could be that rectal is detected earlier, which would certainly make it more survivable. But it is true that the "waiting period" on a cure is 10 years vs. 5 for colon cancer.


Hello BrownBagger. Thank you for sharing your experience and personal observations.
male-age 44 at diagnosis
8/14-clnscopy
8/14-CT scan,no mets
9/14-left colectomy,CEA 2.2 before surgery
pT2pN2bpM0
3 cm tumor in dscnding colon
7/23 pos LNs
low grade MSI stable
10/14-start folfox
1/15-CT & PET scan and sigmdoscopy- no mets
3/15-finish folfox
9/15- clnscopy- 3 polyps removed
10/15- CT scan, NED
10/16- CT scan, NED, CEA 1.6
10/17- clnscopy- 4 polyps removed, CT scan NED, CEA 1.8
10/14 1.9; 4/15 2.8; 5/15 2.4; 9/15 2.8; 12/15 3.1; 1/16 3.0; 4/16 2.5; 7/16 2.5; 10/16 1.6; 1/17 1.9

WifeOfMike
Posts: 1495
Joined: Thu Dec 20, 2012 9:53 pm
Facebook Username: https://www.facebook.com/vbass123
Location: San Diego, California

Re: Three Basic Questions

Postby WifeOfMike » Fri Oct 24, 2014 2:00 pm

BrownBagger »
On the question regarding rectal cancer vs colon cancer and NED status, my anecdotal observations suggest the opposite, because I think these days, liver involvement is more treatable than lung involvement, and rectal tends to go to the lungs vs. colon, which typically goes to the liver. Put another way, I think I would be better off today with liver involvement than lung involvement. It doesn't always follow that pattern, of course, and I'm not pretending that I have any concrete evidence to back this up. Just a casual observation.


My hubby is proof there is no perfect pattern for this disease.... he has colon cancer stage IV & two years later still only has lung mets.
YES, Brownbagger- I agree with you totally that Liver mets are more treatable- 60% of colon cancer patients get liver mets, and liver regenerates, lungs do not which helps tremendously as well
There are many more procedures available for liver vs lungs here in the US- Japan, England and Germany for instance have done much more Lung surgery/radiation/ procedures
Japan has a 10 year study stating that repeated lung surgery to debulk lung tumors works and adds overall time- but the US has yet to approve or adopt that theory- wanting more proof
I wish there was a clinical trial to prove that theory correct here- I would sign up hubby in the blink of an eye

best wishes everyone
Vicki
Bad Ass WIFE
Hubs: CRC IVA,T3, N0, M1A
Resect/LN Mets 10/12
Folfox4/Avastin 11/12-5/13
Folfiri/Erbitux 6/13-10/13
Stivarga 12/13-4/14
Trial 4/14-/14
Trial 8/14-11/14
HOME Hospice 11/17/14
Guardian Angel 1/1/15
Cost of HOPE? PRICELESS


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