The Stage Two Decision: What tests should I ask for?

[Fred.R]

Hey.

So, I'm not looking for medical advice... just experience here.

In a few days, I will meet my oncologist who will go over all the numbers and statistics and all that stuff. I would like to augment that with whatever genetic testing / any kind of testing that can be done to back up what I am sure will be advice to forgo Chemo.

I would like to believe it's not necessary, that they got it all. But I want all the tests possible that point me toward that because if even if ONE test says I *might* benefit from Chemo, I am going to go for it, even if it means I have to wear this bag another seven months. The bag is not going to be the thing that makes me decides on the treatment, regardless how I feel about it.

So... kind and knowledged souls on here... what tests should I request / demand before I decide? It is now four weeks since they "cut the cancer out" and I know I have to decide soon. Any help would be appreciated.

[bellavida]

I think any tests that needed to be done were done when they cut it out and did your resection. I think anything over a stage 1 should have mop up chemo. I personally think EVERYONE should have it. I have heard about the side effects without the bag and am glad I had it. Didn't have to worry too much about diarrhea or constipation. They will make a recommendation for your aftercare based on your pathology that was done after the surgery. They told me in the hospital and at the first post op appointment that they were recommending chemo. You can always ask why they are not recommending it. I finished my chemo 7 weeks ago and am 2 days away from my reversal. It seemed sometimes that it would never end...then all of a sudden it did.

[edinlad]

You are staged the same as i was T3 N0 M0 in the uk they dont normally offer chemo for this stage (at least that is what i was told) but my pathology report showed some vascular invasion and for this reason i was given for 4 rounds of chemo

I might not sure of the real significance of vascular invasion or what % difference it makes if you take chemo but like yourself i thought if they recommend it ill take it

[godisgood]

I agree with bellvida in that any initial testing was probably already done.I was diagnosed stage 2a colon cancer T3N0M0 and had a right hemicolectomy done in july. Due to the fact I had no high risk factors(clean margins,no lymphnode/vascular involvement,no perforation,etc...) per the National Cancer Institute guidelines and Oncos suggestion,I was recommended observation only.I went for a second opinion and the second onco concurred with the first at no time was chemo,mop up or otherwise ever recommended. Fast forward 3 weeks and my onco dx colon test came back(i was the first my onco had ever submitted for the test) with a recurrence risk of 15%,lessened to 11% with 5fu/lv(onco suggested oral route if decided to do so). Keep in mind 85% of people test done on come back mmr-p with recurrence risk between 10-30% and only 15% come back mmr-d with risk 7% and below( the quasar study said actual recurrence risk between 2-6% less for both groups). Both oncos said that inspite of results wouldnt opt for chemo(risk vs. benefit, but would also be comfortable were reoccurrence to happen(test relatively new and although quite predictive in breast cancer recurrence(onco dx breast cancer test) the onco dx for colon cancer has not been studied enough.Anyway I have decided to forgo the chemo(oral or otherwise) based on what I know,my comfort level, and peace in my spirit. Remember the decision is yours to make no one can make it for you and you must be comfortable in whatever you decide. I just wanted to let you know about the onco dx which isnt based on current prognosis as it is possible future prognosis. I pray for you spiritually(peace),mentally(decision), and most of all physically(complete healing)......May GOD continue to BLESS YOU on your journey!!!!!!

37 yr old to beautiful 11yr old daughter
dx colon cancer 6/13
right hemi colectomy 7/13
dx T3N0M0
observation only
Onco dx recurrence 15% 8/13
Opted no chemo!!!!
NED NOW AND FOREVER!!! GOD IS SO GOOD!!!!!

[rp1954]

We used CEA blood tests before and after surgery to look for missed tumors/mets, if that result is available, to reduce the risk of missing them further (assumes CEA yielding mets). Ditto the CA19-9 blood test for values even in the 20s but more scatter. We saw papers that if the tumor tissue stains had more than a trace of CA19-9 (grade 2 or 3 vs 0 or 1), even for stage II (as well as stage III and IV), that was a reliable, extremely high risk factor for recurrence and metastasis, but most treatable with continuous low dose 5FU based chemo for a year, and cimetidine.

I've never seen an oncologist that didn't have to be prompted to get a vitamin D test. None of any this is "standard" service, be forewarned.

[justin case]

There is no test that can answer that question.(period)
Regards,
Michael

[rickker20]

I was stage 1 and I got Chemo. I might the only person in here that got Avastin for stage 1 I think my Onc did a trial on me? I was suppost to get more avastin after the surgery but I was to sick so avasting was taken out.

[Mastan]

I was T2N0M0 from pathology. I did 8 rounds of FOLFOX. I still got a recurrence 2 yrs after completing chemo. That is my data point.

Mark

[O Stoma Mia]

..I will meet my oncologist who will go over all the numbers and statistics and all that stuff... Any help would be appreciated.

Hi Fred - In your request for information, I think you are referring only to Stage IIA, i.e., T3N0M0, which was your diagnosis. Your thread, however, is entitled,"The Stage Two Decision: What tests should I ask for" which suggests that you are looking for data covering all types of Stage II patients. Stage II, in general, has three sub-stages, and I believe that the survival profiles and prognoses are different for the three, because in Stage IIB and Stage IIC there are cancerous cells outside the colon in the general abdominal or pelvic area, some of which may drop off or fall into the abdominal cavity during surgery.

Stage IIA: The cancer has grown through the wall of the colon or rectum and has not spread to nearby tissue or to the nearby lymph nodes (T3, N0, M0).
Stage IIB:The cancer has grown through the layers of the muscle to the lining of the abdomen (called the visceral peritoneum). It has not spread to the nearby lymph nodes or elsewhere (T4a, N0, M0).
Stage IIC:The tumor has spread through the wall of the colon or rectum and has grown into nearby structures. It has not spread to the nearby lymph nodes or elsewhere (T4b, N0, M0).
Quoted from : http://www.cancer.net/print/18707

Because of the differences between the three sub-stages of Stage II, I think that there are two issues here:

• Inclusion criteria for the evaluative studies - The studies that you are consulting to determine whether to go with chemo or not – do they include only Stage IIA patients, or do they include any kind of Stage II patient? There could be a difference in the findings depending on the range of patients included in the various studies.
  
• Accuracy of your initial diagnosis - You say that you are T3N0M0, which is the definition of Stage IIA. But how accurate was your diagnosis? There are members of this Forum who claim that they were under-staged in their initial diagnosis. In any kind of test or diagnosis, there is a margin of error. What if there was an error in your initial staging and you are really a T4N0M0? What would you do then? Another question: who determined the T3N0M0 staging for you – was it the surgeon, or was it the pathologist, or both together in agreement? Sometimes there is a difference in opinion between what the surgeon sees and what the pathologist sees, particularly in the coding of the T component.

[Fred.R]

Thanks all.

I will be meeting with my ONC tomorrow. I'll report back.

I feel like I have a ton of info to inform my questions so... now it's all statistics and what feels right.

*sigh*

Big decision days.

[justin case]

I'm just curious as to what your oncologist had to say
Regards,
Michael

[Hawaii]

I'd say do the chemo. Give it your best fight!

[Fred.R]

Michael;

So... recapping... I'm stage IIa, T3N0M0. I may be giving too much info but...

My oncologist said based on all my "risk assessments" (my words) - nothing on the margins, tumor cells looking well-differentiated (I think that's the good one), no perforation, number of nodes (30)... he would lean toward no Chemo as my five year risk is at 10%. (90% me being hunky dory) Chemo, he believes, would not change that. However...

...he did order the Oncotype DX test to get a recurrence score. If that score jibes with everything else - if it's low, like 8-10%, then he's going to recommend no Chemo. It is still my decision, but he believes I will not be in the 3% of people who benefit from it. (That 3% is usually made up of people that have high risks in their tumor biopsies). However, if it's 12% or higher, he wants me to do a six month run of Xeloda, just to be sure. His feeling is that the Oncatype test is a tighter focus on the possibilities... so if the score is high, he doesn't want to take any chances.

The guy has seen more than 3000 cases and was up to date on everything. I'm confident in him as an ONC and, more to the point, I think he's using smart math to make this decision. Chemo doesn't scare me - I'll do it if the numbers say I should and the doctor feels it's right - but I've also been through a surgery and a second surgery because of a rupture... and I'm not willing to put my body through anymore stress unless it's of absolute benefit. And I'd like to get rid of this bag while I can still pucker my butt cheeks.

Thats not enough for me NOT to do Chemo, but it's going to come down to that final test and what that number is. I'm at peace with whatever happens, whatever path I take. It's out of my hands now.

That's the update...