Stage II just diagnosed. unsure what to do next

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Larry
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Location: maryland

Stage II just diagnosed. unsure what to do next

Postby Larry » Sun May 27, 2007 11:49 am

I am 53 in excellent health, no symptoms. 5 years ago had screening colonoscopy with hyperplastic polyp found. Returned in 5 years and on May 1 2007 cancer found on colonoscopy. Laproscopic sigmoid colectomy May 10. Recovering nicely. Tumor was 2.1 cm, stage II, 14 negative lymph nodes. through muscular layer .5cm into fat. 8 cm clear margin of fat. Well differentiated adenocarcinoma. Genetic testing pending. the oncologist tells me that the benefit of fulfox is only about 5%. I am leaning toward no chemo. Any thought, ideas or experiences? Thank you. Larry

johnnys84
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Postby johnnys84 » Sun May 27, 2007 7:06 pm

I was stage II and did not follow through with chemo following the surgery. One doctor said it was up to me, another said I needed it, another said I didnt need it. I did go through with the first round, and it really kicked my butt. I figured I had been lucky up to that point, and would roll the dice on not continuing the chemo. I do not want to influence you either way, but I just couldnt get through it. Only time will tell if I made the right decision.
JJS

Diagnosed June 30, 2006 Stage II colorectal cancer (familial polyposis) 30 years old
October 27, 2006 Total Colectomy and K-pouch
March 9, 2007 K-pouch revision

sean
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Location: Vienna Virginia

Postby sean » Sun May 27, 2007 9:34 pm

Stage IIA which is what it sounds like you are and what I am. I opted for FOLFOX. These #s are for T3, Low grade, 49 or younger from the mayo clinic - it is slightly different for over 50:

5 yr recurrence free survival:

Baseline (no chemo): 73%
Adjuvent 5-FU: 77%
Adjuvant FOLFOX: 81%

5 year overall survival:

Baseline: 83%
5-FU: 85%
FOLFOX: 87% (86% if over 50)

These are the same numbers my oncologist used when I met him. I took a couple of things from this. FOLFOX increases the chance of no recurrences in 5 years. Going through a recurrence would be traumatic. If I got a recurrence and did no chemo I'd be really pissed at myself for not having done chemo since there is a chance it would have helped. I am only 42 & have 2 young kids so I wanted to do everything I could to improve my odds.

The change in statistical survival are small percentages and the statistics are not exact - there is a margin of error like in election polls, but I chose to accept the statistics as the best numbers I could get and thought about it in fractions.

No chemo: 1 in 4 chance of recurrence, 1 in 6 chance of dying w/in 5 years.
FOLFOX: 1 in 5 chance of recurrence, 1 in 8 chance of dying w/in 5 years

I also thought of it as being forced to play a game of Russian roulette sometime in the next 5 years. I decided to do everything I could to be handed an 8 shooter instead of a 6 shooter.

On the flip side 73% of people who do chemo for stage II are being treating for no reason. Oncologists disagree on the course of action. One oncologist I spoke to was very much in favor of chemo and said if you do chemo do the best available - FOLFOX. Another presented it the same way as yours - there is just a small percentage change in survival. You should also look at how well FOLFOX works in Stage III patients - I accept this as evidence that FOLFOX does really work.

You can get your statistics here:

http://www.mayoclinic.com/calcs/colon/index-ccacalc.cfm

How to treat Stage II patients is a controversial topic in oncology.Unfortunately you need to make an informed decision on your own. I'm 6 cycles into FOLFOX4 and am a computer programmer and for me it has put my work & life on hold due to "chemo brain". Chemo has not terrible but hasn't been a piece of cake either. Everyone reacts differently - some have an awful experience, some are in the middle like me, and some breeze thru with almost no problem. You can always start and then stop if it is too tough. I read somewhere in an oncologists debate on adjuvant chemo for stage II patients that some oncologists believe getting even some FOLFOX is better than none. Good luck no matter what you do.
42 - dx Jan 3 2007 stage IIA colon
9 FOLFOX4, 3 5-FU completed Sep 24 2007
Blockage symptoms, Negative Colonoscopy, Positive PET Oct 2009
2nd Resection Oct 2009 - Suspected Local Recurrence was Negative

Hawaii
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Location: Calif.

Postby Hawaii » Sun May 27, 2007 11:20 pm

thx Sean, great info for those of us who are taking our first steps on this bumpy road!

sean
Posts: 293
Joined: Wed Mar 21, 2007 1:35 pm
Location: Vienna Virginia

Postby sean » Sun May 27, 2007 11:49 pm

Glad it was of some help. Here's some more good info to help make your chemo decision and to make sure you are getting good surveillance later:


Colorectal Cancer: Assessing Clinical Strategies for Management in the Adjuvant Setting (May 2006):

ccoe.umdnj.edu/online/enduring/pdf/07mc48.pdf


NCCN clinical guidelines:

http://www.nccn.org/professionals/physi ... efault.asp

click on NCCN Complete Library of Clinical Practice Guidelines Online

and select the guidelines for treatment of cancer by site. This one is better than the ASCO guidelines in my opinion because it tells you what oncologists agree on and what they don't. The ASCO guidelines I last looked at in Jan 2007 appear to be only the consensus opinion and recommend no action if there is not a consensus in the oncology community.
42 - dx Jan 3 2007 stage IIA colon
9 FOLFOX4, 3 5-FU completed Sep 24 2007
Blockage symptoms, Negative Colonoscopy, Positive PET Oct 2009
2nd Resection Oct 2009 - Suspected Local Recurrence was Negative

sean
Posts: 293
Joined: Wed Mar 21, 2007 1:35 pm
Location: Vienna Virginia

Postby sean » Mon May 28, 2007 1:42 am

Larry,

I reread your post and its unclear to me whether you are T3 or T4. If you are T4 you are stage IIB and the benefits of FOLFOX are more pronounced.

Here's a pretty decent staging guide:

http://www.cancer.org/docroot/CRI/conte ... staged.asp

(if this gets broken up, just google "ajcc staging colon cancer")

Also, you didn't say if you had a CT or PET to confirm your staging. You would be "Mx" until you had a scan to see if there are any metastases. When colon cancer spreads it usually goes to the liver or lungs. It less often spreads to the abdominal cavity or the brain, but it can go almost anywhere. You should have a scan from the knees to the brain to make sure there is no evidence of spreading. My understanding is that is rare for the cancer to spread below the knee.

I really should be sleeping... chemo has steroids mixed in and my ambien is having all the effect of a roll of smarties tonight.
42 - dx Jan 3 2007 stage IIA colon
9 FOLFOX4, 3 5-FU completed Sep 24 2007
Blockage symptoms, Negative Colonoscopy, Positive PET Oct 2009
2nd Resection Oct 2009 - Suspected Local Recurrence was Negative

Larry
Posts: 63
Joined: Sun May 27, 2007 10:22 am
Location: maryland

stage II what to do

Postby Larry » Mon May 28, 2007 6:04 pm

Thanks Johnny and Sean. FYI the tumor was 2.1 cm, 14 neg nodes, CT negative. Johnny, it seems you recieved the same conflicting advice as I have. I am a physician and still unable to but the advice together. I have a couple of weeks to decide but I am leaning against chemo because of the small benefit it appears this stage gets.

northern lights
Posts: 127
Joined: Tue Mar 21, 2006 10:48 am
Location: Yellowknife, Northwest Territories

Postby northern lights » Tue May 29, 2007 7:21 pm

The statistics here are interesting and raise some questions. As far as recurrences go was it another primary tumor or metastisis?

You need to think about what the real risks are. The odds are that the cancer will not recurr in 5 years. If it does you are looking at more surgery and perhaps chemo. Stage IV colon cancer is not what it used to be and if caught early is much more treatable.

While considering your options confirm with your doctor what your follow-up program will be if you opt out of chemo. You would want to be sure that the scans and colonoscopies are frequent and at least the industry norm. There are a few earlier posts about how people were being monitored.

I had stage III and had to complete chemo, if I had a recurrence I would fight like hell...just like I did the first time.

Sharon
Diagnosed Stage III Jan 06. Completed Treatment Oct 06. NED Dec 06,

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PGLGreg
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Location: Waimanalo, HI

Postby PGLGreg » Wed May 30, 2007 4:07 pm

I'd be leaning against chemo, also, I think. The tumor's being well-differentiated (which as I recall is a good thing) might not be taken account of in those +5% odds. Then too, there might be long term bad effects of chemo hidden behind that 5 year horizon.
Greg
stage 2a rectal cancer 11/05 at age 63
LAR 12/05 with adjuvant radiation+5FU,leucovorin 1-2/06
NED for 12 years, cured

sean
Posts: 293
Joined: Wed Mar 21, 2007 1:35 pm
Location: Vienna Virginia

Postby sean » Wed May 30, 2007 11:09 pm

Those numbers were specifically for low grade tumors, T3, and N0. That is what is good about the mayo clinic calculator (it takes this into account) but these figures were disturbing at the same time. I figured when I got my pathology that I was in very good shape - I was pretty shocked when I got the recurrence figures. I chose chemo and have no regrets. It helps psychologically also in that you know you are doing everything you can to fight the disease. Before I found this site I never once saw anyone post to a cancer group about the side effects of oxilaplatin and regret choosing to do chemo and many people specifically pointed out that despite their issues with lasting neuropathy they didn't regret the choice. I saw plenty of posts of people who got a recurrence and wished that they had done chemotherapy.

For stage II chemo is not a decision to take lightly. Research as much as you can and see what suits your situation. Job security or your boss;s willingness to support you through your chemo, wife & kids, current age and health all should play into your choice. Do you have health or disability insurance - FOLFOX is both expensive and time consuming.

When you have no doubts about your choice than it has been made - if you have lingering doubts one way or another use this great resource to get the answers you need. Ask some stage IV people here - maybe some can add some perspective if they happened to start at stage II and maybe others can give you some insight into the the treatments & anxiety that come with stage IV and you can and factor that into the balance - because that is where you likely go next if you get a recurrence and chemo reduces your chances of having one.

For me (T3, N0, M0, 42, low grade) those numbers I posted were my statistical odds and I spent a lot of time looking into the neuropathy issues with oxilaplatin since I didn't want to trade permanent harm for a 1/4 chance of cancer. My talks with 2 oncologists left me reasssured that neuropathy is rare and can be addressed as chemo progresses if it shows up. I'm 7 cycles into Folfox4 and I've had no signs of neuropathy at all and suspect that a lot of people mistake residual cold sensitivity with neuropathy. Gloves and thermal socks have always made it go away for me.

Anyway, good luck to all Stage IIs making this very personal and difficult decision.
42 - dx Jan 3 2007 stage IIA colon
9 FOLFOX4, 3 5-FU completed Sep 24 2007
Blockage symptoms, Negative Colonoscopy, Positive PET Oct 2009
2nd Resection Oct 2009 - Suspected Local Recurrence was Negative

Discoclub
Posts: 54
Joined: Thu Mar 29, 2007 12:00 pm
Location: vINTON, la

43 yrs and no chemo

Postby Discoclub » Thu May 31, 2007 4:46 pm

All of this is interesting infrmation... as long as you are in the 70+% group... what about the 23% (1 out of four!) who die from these interventions? I am 43, I feel that I have a long life ahead. i am sure everyone writing here feel the same. Consider doing more research. There are some other choices out there. Some of these choices may leave you with a much healthier body than when you began.

i am choosing life w/o surgery, complications chemo and radiation. Well conventional toxic chemo anway. I am taking chemo of a different variety. A chemo designed to kill cancer without harming the body. The Chemo I take makes me feel a lil weak and tired but that is about it. Write me for more references.

Molly
Site Admin
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Location: Glens Falls, New York
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Postby Molly » Fri Jun 01, 2007 5:09 pm

Hey All-

Mom gave me a bunch of grief for my earlier post about not giving advice. Sorry if it sounded "short." I should clarify.

When you're posting back to someone who is asking for advice (and this is a great place for it!) just remember that everyone reacts differently to treatment. All I meant was, please don't tell someone what they SHOULD get. You can talk about what you had and how it worked for you. You know what I mean. :)

Please keep this thread going. It's a very good one!

aliveat35
Posts: 7
Joined: Fri Apr 13, 2007 6:04 pm

Postby aliveat35 » Wed Jun 06, 2007 2:58 pm

I am stage 2B. I am a 35 yr old mom of a two year old and so after surgery I decided I wanted to do all that I could and so chose chemo. I got through 3 cycles and then my ocologist stopped the treatments. It was making me too sick. I am glad that I did start and I wish that I could have finished to increase my chances but the reality is that chemo was doing more damage in my case than good. It is a personal decision. I wish you all the best.
35 yr old fem. Dx 9/2006 with 2B


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