T3cN2a, refusing chemotherapy?

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Bev G
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Location: Quechee, VT

Re: T3cN2a, refusing chemotherapy?

Postby Bev G » Sun May 19, 2013 2:33 pm

Also, BTW, you had either 3 or 4 malignant nodes (can't remember right now). Your cancer has spread. It appears to have spread only locally. Please remember though, or please know, if you don't know, that malignant cells elsewhere (ie liver) can take up to six months to show up on scan. Your cancer has demonstrated to you its capacity to spread already. When I had my colon resection I had only 2 of 22 nodes that were positive. I also had a tangerine size tumor in the posterior caudate lobe of my liver---so that was NOT an unknown for me, but it DOESN'T take a whole bunch of positive nodes to wind up with killer mets. I'm so hoping that you don't experience this--just really hoping you are fully informed. And chemo? Yeah, it can really be awful. I still do have life changing, permanent effects from it. But, what are you going to do? Also, you mentioned wanting to become a dad. Don't you want to make sure your future children can know that you have given longevity ever single shot you could?

Peace,

Bev
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

stu

Re: T3cN2a, refusing chemotherapy?

Postby stu » Sun May 19, 2013 2:42 pm

Hi ,
Another person from Scotland here. I totally understand that there is a lot to consider. I for some unknown reason had a real resistance to my mum doing chemo as I had really quite a bad image in my mind of what shape and form that would take. I never told her though as it was her choice to make. She was stage 4 at time of detection and she went ahead with it. She had quite a time of it the first year , then surgery then the second year she had a further 6 cycles. However the second year she had oxa reduced by 20% and most of the side effects departed. Chemo from what I have observed can be adjusted to allow the quality of life a person requires. That is done a lot here in the UK.
My mum really struggled to take the pills as she has spent most of her life taking care of her body and despite knowing it was to help her wrestled with the concept. That gradually receded and she has been able to continue on with her life and now considers it a wise choice. Lots of info flooding your brain and I am sure you will come to the right choice for you.
Have a look at the Scott trial as someone has suggested and see what you think of its concept.
Regards
Stu

nicola smith
Posts: 1040
Joined: Thu Oct 07, 2010 9:06 am

Re: T3cN2a, refusing chemotherapy?

Postby nicola smith » Sun May 19, 2013 3:36 pm

First off, I’ll echo others in saying that your choice is your choice. And this forum will always be a place to come for support and information.

BUT the notion that chemo only marginally affects survival rates is bunk.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1618738/

According to this study of Stage III colon cancer patients treated with surgery but without chemo: “In line with national data, we found a better 5-year survival rate in patients treated with surgery followed by adjuvant chemotherapy than in those treated with surgery alone (Figure). BUMC's 5-year survival rates of 64% (with chemotherapy) and 44% (without chemotherapy) were similar to those from the National Cancer Data Base, which were 66% and 50%, respectively, in 1997 (17).”

Furthermore, note that the above figures include people who have less advanced cancer than you (Stage IIIa and Stage IIIb). SEER data for people diagnosed with rectal cancer between 1998 and 2000 is that the 5 year survival rate for Stage IIIc was 33% - and that includes the many people who had chemo. So I don’t know where you get the idea that your odds of survival without chemo are 50-72%??? It just ain't so.

http://www.cancer.org/cancer/colonandrectumcancer/detailedguide/colorectal-cancer-survival-rates

As I’ve said before, it’s the oxaliplatin that causes the side effects – and the 5FU that does the heavy lifting. At least consider giving that a try.

And yes, I found the six months of chemo unpleasant and I do have side effects from the oxaliplatin in my chemo that will go on for the next 50 years. But I’ve faced MUCH worse, and being alive strikes me as a very good trade off.
UC history
11/09: Dx, CEA 2.9
02/10: colectomy, temp ileo; pT3N1Mx
10/10: 12 Folfox6
03/11: jpouch
2010/11/12/13/14: 6 PET and/or CT's - NED
quarterly 03/2010- 03/2015: CEA range 0.8-1.3
03/2015: discharged to GP :D

srwl21901
Posts: 136
Joined: Tue Mar 12, 2013 12:29 pm

Re: T3cN2a, refusing chemotherapy?

Postby srwl21901 » Sun May 19, 2013 3:50 pm

My story is similar as well, at colonoscopy the Dr said very small, probably stage 1, day surgery and be done. Then the surgeon looked and said LAR, few days in the hospital, maybe no chemo. After pathology came back and the tumor was removed no lymph node involvement, but tiny cancer in the margin, my oncologist at Scott and white recommended folfox6. The doctors at s&w meet with doctors from Johns Hopkins, md Anderson, and other hospitals and clinics once a week to discuss cases and get opinions about treatment. Because I was the young age of 55 and otherwise extremely healthy, it was the general opinion of the tumor board to agree with my oncologist that folfox6 would give me the best outcome to live a long healthy life and see my grandchildren grow up. As far as side effects, I have just started this treatment but my mother who has never had chemo of any for has the worst case of neuropathy I have ever seen. Some of the side effects apparently suffered by people as they are older could be from old age or that persons predisposition to having them with or without cancer treatment. My tumor was about the size of a raisin. Apparently doesn't have to be very large to need pretty aggressive treatment. Good luck with your decision.
Stage 3
Rectal cancer
DX 2/20/13
LAR 3/27/13
Xeloda (canceled)
Oxaliplatin
Port placed on May 8, 2013
Folfox6
Stage IV metastasis in lymph nodes
Seeking treatment now

lorrainem
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Location: NY

Re: T3cN2a, refusing chemotherapy?

Postby lorrainem » Sun May 19, 2013 8:49 pm

Hi Swede;

Personally I believe in going at it full guns, which was what I chose at my stage II diagnosis. But you also have a choice, which I believe is personal too. Having said that you have young ones. There is currently a post on the board from Genevieve announcing she's going to be a grandma. These are the things to consider in addition to stats.

Does chemo suck...it can or it can't depends on the case. Again negative side effects can only be determined by taking the treatment. I have quite a few, some worse than others. But, with all that, I can attend high school and college graduations, which chemo allowed me to be here for. I can celebrate all holidays with my family, again....thanks chemo. I can make extra-ordinary efforts for extra-ordinary occasions, and not miss a beat.

Quitting chemo is not unusual. Dosage changes are not unusual. What if you are one of the lucky ones that sails right through unscathed? Unless you try you won't know, but you do know that life will be extended.

Please consider very, very carefully. My life is altered, but I am alive as are all the other chemo-takers here.

Good luck with the very difficult decision.
Chemorad/Surgery/Chemo
Stage II, no mets, no nodes NED 05/08 again 08/08 again 11/08
Ileostomy reversal 10/16/08

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John72
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Location: Los Angeles

Re: T3cN2a, refusing chemotherapy?

Postby John72 » Sun May 19, 2013 9:33 pm

Swede wrote:Or to put it bluntly, these are the alternatives if I take chemotherapy:

1. 50% risk that it will hurt me. A lot. For the next 50 years. Very Bad.

2. 37.5% risk that it won't do much difference, except make my life miserable for the next 6 months. Bad.

3. 12.5% chance that it will save me 50 extra years of life. Good.


Why is it so obvious to everybody, except me, that I should only consider the 12.5% chance that chemotherapy would help me to get a longer life? When in fact there is a 87.5% chance that chemotherapy will only hurt me, and nothing good will come out of it?


Where are you getting this information from?

#1, just from empirical evidence on this site over the past 3 years, is entirely false.

I'm curious, what exactly do you believe will happen to you?
7/13/10 CC
7/23/10 -3C RC, 7cm,15/33 lymph nodes
8/31/10 5 1/2 weeks of radiation + Xeloda
11/12/10 6 rounds Oxy + Xeloda
3/25/11 Finished chemo
6/15/11 Colostomy reversal followed by infections
9/05/14 Clear CT scan

nkoske
Posts: 442
Joined: Fri Feb 22, 2013 2:00 pm
Location: California

Re: T3cN2a, refusing chemotherapy?

Postby nkoske » Mon May 20, 2013 12:49 am

Statistics are a powerful tool, but it's nice to know when they fail. They fail to predict the outcomes of singular cases. It's nearly impossible from a statistics standpoint to be struck by lightening, but if you're the guy that got struck the statistics don't matter.

Let's say w/o chemo the 5 year survival is 50% that means 50 people out of 100 don't make it. The thing is there is absolutely no way to know which group you're in. With chemo you add some to the survival number.

Personally since there's no way of know what group you're in I'll take anything that will increase my shot.

In the end I hope that I'm doing chemo now for no reason, because that will give me the best shot of seeing my son grow up. With that said I'd gladly take a little peripheral neuropathy for one more day with my son and wife.
Nick, DX @ age 34, IIIB Rectal Cancer 10/2012
ChemoRad IMRT 11/2012
Laparoscopic LAR 1/2013 (No Ileo)
Post Surgery Path IIIB (2/15 LN)
Chemo 2/2013 (XelOx)
Currently NED, Graduated from Med Onc 10/2017

slchapma
Posts: 14
Joined: Sat May 18, 2013 11:03 am
Location: Boca Raton, FL

Re: T3cN2a, refusing chemotherapy?

Postby slchapma » Mon May 20, 2013 10:59 am

I know this thread was not for me, but I certainly appreciate all the feedback shared here. After reading all the responses, talking to my oncologist AGAIN, and talking with family and friends, I am going to move forward with the FOLFOX6 treatment.

Thanks Again
Sheryl - 44
DX - IIIC Ileal Small Bowel Colon Cancer 4/26/13
Colon Resection 5/02/13
pT3N2 (6 LN)
Clean PET Scan 6/04/13
Port Placement 6/06/13
FOLFOX6 Started 6/10/13
FOLFOX6 Stopped 8/07/13
Clean PET Scan 11/07/13
Port Removed 11/15/13

tahiti
Posts: 19
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Facebook Username: Tahiti

Re: T3cN2a, refusing chemotherapy?

Postby tahiti » Mon May 20, 2013 12:02 pm

I will echo what everyone else said. Please do the chemo. I was stage ii (so chemo wasn't a given) but after my oncotype came right at the low end of high, the 2 oncs both said "there's no question - you need chemo". i can't imagine NOT doing chemo at stage III. I am the same age as you, have 2 teenagers and I just couldn't live with myself if I didn't do ANYTHING AND EVERYTHING to prolong my life. If by chance I have a recurrence I at least have peace of mind I did everything I could to beat the beast.

I am your age and was in excellent health at my DX. I ran a half marathon right before. I finished chemo (folfox with 9 rounds of oxali) 2 months ago and my side effects are heartburn (one prilosec a day cures it) and peripheral neuropathy in my hands and feet. That's it. My hands are no big deal, I could easily live the rest of my life with it, my feet are more bothersome but not to the degree where I need meds. Chemo sucked no doubt - but it was more the whole time suck it was, rather than side effects. However, I was able to work throughout, and even did another half marathon WHILE ON CHEMO. I tell you this to give you some positive stories that chemo doesn't have to knock you out.

Please, do it, if not for you, but for your family. They have to live with the fallout of your decision. Best of luck and keep in touch.

Hapa
Posts: 388
Joined: Thu Jan 03, 2013 2:46 pm

Re: T3cN2a, refusing chemotherapy?

Postby Hapa » Mon May 20, 2013 12:32 pm

Wow- I just read all of the replies to your post. These people are the ones that have been living with cancer & have the best insight to this disease. If these responses haven't changed your mind, then nothing will. I am certainly glad that my husband wanted more than a 60/40 chance of being alive in 5 years. I am sorry that you have this disease. Good luck with your decision.
DH Stage 3 RC

James65
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Location: Exeter, NH
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Re: T3cN2a, refusing chemotherapy?

Postby James65 » Mon May 20, 2013 1:01 pm

Not to pile on, but do the chemo. I had a really horrible time with chemo, but I found my way through it with a little pot, adivan, tonic water with orange juice and so on. Today I have some neuropathy in my feet (I had a lot in my hands, arms feet and legs), my colon doesn't perform as it used to, and a few other long term effects, but I am alive and know that if it does come back I did everything I could to survive for my kids.
Diagnosed with stage III rectal tumor (though probably late stage II) January 2006.
Chemo/Radiation
Full APR Surgery
Folfox Chemo
So far NED.
Oops. Liver tumor diagnosed 10/13 after elevated CEA. Liver resection for 5cm tumor 12/6/13. So far so good.
Oops again, one tumor in each lung diagnosed 8/8/16. One too small to deal with and the other resected in late September. Wait and watch for now.
Oops, another lung Met in upper left lobe on edge of previous resection scar 11/11/19.

SkiFletch
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Facebook Username: Michael Fletcher
Location: Buffalo, NY

Re: T3cN2a, refusing chemotherapy?

Postby SkiFletch » Mon May 20, 2013 1:24 pm

OK, it seems like your reservations come from folks with lasting effects from chemotherapy that you know of outside of this community. Therefore a couple questions: Did they have colon cancer or some other type of cancer? More importantly, did they take Xeloda or some other type of chemotherapy? All chemotherapies are NOT created equal. These things are as varied as the diseases they treat, so lumping them all together is misleading at best. I'd prefer irresponsible. Xeloda is entirely different from say Taxol, Gemzar, Carboplatin, or Mitomycin (just listing some "other" chemos). They all have different side effects, and they all pose different risks to long-term issues. I'm not a doctor, so this is only the opinion of a well-meaning person on an online internet support forum, but I see few folks on this website who take Xeloda ONLY therapy that have long-term side effects from chemo. Saying you are "virtually guaranteed" to get them is entirely over-reactionary and false. We have tens of thousands of members and only a handful on Xeloda ONLY therapy complain of lasting issues.

Regarding fertility, I'm a mere sample size of one, but after surgery, systemic folfox, and then HIPEC, my fertility was unaffected. As a matter of fact my wife is just recently pregnant, naturally, and it wasn't even challenging... Most colon cancer chemos do NOT have any bearing on long-term male fertility. In fact your surgery likely had a higher risk of impacting your fertility than the chemo does.

By the way, you never told us your answer to the question (you don't have to if you don't want to): "If you choose to NOT do chemo AND the cancer returns, will you regret that decision for the remainder of your life?"
11/13/09 5cm Stage IV 9/25 lymph nodes w/2cm peritoneal met at 29 YoA
12/15/09 LA right hemi-colectomy
6/16/10 Folfox FINISHED
8/10/10 Prophylactic HIPEC
10/9/10 got Married :D
Still NED and living life to the fullest

"Can any one of you by worrying add a single hour to your life."

Oneeyeddog
Posts: 101
Joined: Sat Apr 06, 2013 11:06 am

Re: T3cN2a, refusing chemotherapy?

Postby Oneeyeddog » Mon May 20, 2013 2:53 pm

I would do the chemo. I'm 3c and if the chemo only gave me a 2 percent chance of spending more time with my wife and kid I'd do it. No brainer. (And thank God, the percentages are better than 2 percent). Regardless, respect your decision whatever it may be and best of luck.
Colon cancer Stage 3c (dx April 2013) at age 36
Resection and temp ileostomy (4/17)
12 rounds of FOLFOX (May-Oct 2013)
NED (August 2014)
http://www.theoneeyeddog.com

jean60
Posts: 427
Joined: Sun Sep 02, 2012 3:47 pm

Re: T3cN2a, refusing chemotherapy?

Postby jean60 » Mon May 20, 2013 3:10 pm

nicola smith wrote: SEER data for people diagnosed with rectal cancer between 1998 and 2000 is that the 5 year survival rate for Stage IIIc was 33% - and that includes the many people who had chemo. So I don’t know where you get the idea that your odds of survival without chemo are 50-72%??? It just ain't so.
.


I have to ask about this and then I will weigh in on the OP. These numbers! I was diagnosed IIIB and have been given far better odds than 33% and you are saying this includes people who had chemo??? I suppose I am focusing in on something that sounds very scary to me, but I am very confused by this statistic.

To the OP, it is of course your decision. You know that. I hated having adjuvant chemo. Hated it. In fact, we had to reduce the oxi after the first dose and suspend it completely after the second. That said, we continued on with 5FU.

Chemotherapy is absolutely tough.At least it was for me. I think you just have to be very sure the decision you make is one you can really live with, no matter what happens down the road.

Jean
Dx Rectal Cncr 5/12
Stage III
5 weeks Chemo (5FU) & Radiation completed
LAR with temporary ileostomy 9/12, complete response
Began FOLFOX 10/12. oxil reduced after tx 1, eliminated after tx 2. Now 5FU.
Finished 1/13
Ileostomy reversal 5/13

nicola smith
Posts: 1040
Joined: Thu Oct 07, 2010 9:06 am

Re: T3cN2a, refusing chemotherapy?

Postby nicola smith » Mon May 20, 2013 5:50 pm

jean60 wrote:
nicola smith wrote: SEER data for people diagnosed with rectal cancer between 1998 and 2000 is that the 5 year survival rate for Stage IIIc was 33% - and that includes the many people who had chemo. So I don’t know where you get the idea that your odds of survival without chemo are 50-72%??? It just ain't so.
.


I have to ask about this and then I will weigh in on the OP. These numbers! I was diagnosed IIIB and have been given far better odds than 33% and you are saying this includes people who had chemo??? I suppose I am focusing in on something that sounds very scary to me, but I am very confused by this statistic.

Jean


Hi Jean,

I was replying to OP who is IIIC. You are IIIB. It makes a difference. Overall, SEER data says IIIB 5-yr survival rate is 45-46% (rectal v colon). IIIC is 33-28% (again, rectal v colon). These figures include people who have not had chemo as well as those who have had it; and it probably includes people who even did not have surgery.

The BUMC study does not break its results down by Stage III sub-category and it only deals with people who had surgery. What it concludes is that in the Stage III group it observed, the 5-yr survival rate for people who had surgery plus chemo was overall 20% better than those who only had surgery i.e. 64% instead of 44%. Note that the rates for survival with chemo are probably a bit higher now, since the data used for the BUMC study were drawn from patients treated between 2000-2004

HTH
UC history
11/09: Dx, CEA 2.9
02/10: colectomy, temp ileo; pT3N1Mx
10/10: 12 Folfox6
03/11: jpouch
2010/11/12/13/14: 6 PET and/or CT's - NED
quarterly 03/2010- 03/2015: CEA range 0.8-1.3
03/2015: discharged to GP :D


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