just wondering does everyone know your stage? particularly stage IIIers?

polarprincess

I keep seeing posts where someone will say they are simply stage III and they say how many nodes positive etc.... I am just curious why not everyone says i am stage IIIa, stage IIIb, or stage IIIc.. for me anyway, it helps so much to answer questions, give advice, or figure out other things by what substage you are in... so i am curious if you just don't know or just forget to put it in the question/message?

VickiCO

I don't know yet...
My docs say I am stage 3 - where that falls will be determined after I have surgery and they do the pathology on the tumor (if there is anything left!) the intestinal wall, the lymph nodes, etc. Right now we don't have enough to go on. And really, I don't care...whether I am 3a, 3b, etc doesn't really mean much to me. I have cancer, I am dealing with it. That's is all I need for my own comfort.

Vicki

polarprincess

VickiCO said:

I don't know yet...
My docs say I am stage 3 - where that falls will be determined after I have surgery and they do the pathology on the tumor (if there is anything left!) the intestinal wall, the lymph nodes, etc. Right now we don't have enough to go on. And really, I don't care...whether I am 3a, 3b, etc doesn't really mean much to me. I have cancer, I am dealing with it. That's is all I need for my own comfort.

Vicki

how do they know?
I am curious, how do they know you are stage III without having done the surgery yet?

claud1951

I didn't know
My doctor just told me Stage 3. At the time, didn't know that there was more to it until I came in here and read where people were saying Stage 3a, b etc. I did ask for my records and when I read those, I then determined that it was Stage 3A.

Honestly, my Onc did what he needed to do as far as chemo. Went on 6 months...so far I am 2 years NED!

Claudia

CherylHutch

How does it help?
Hi PP,

Ok, somewhere in all my paperwork, there is the staging from when I was first diagnosed but other than for research statistics and giving the doctors a guideline as for treatment, I'm not sure what the importance is? First, the staging methods were thought up many, many years ago and we all know that treatments and outcomes have changed so much that what was once thought of as "terminal" and the prognosis was not good... well, that has been challenged now and we are hearing of more and more people who have far outlived the expectations of their staging. Heck, I think it was only 10-15 years ago if you were a Stage 3, no matter what the lymph node involvement.. it was considered game over. Now we have Stage IV patients living for years after their 6 month - 1 year prognosis.

To tell you the truth, I don't think I ever paid attention to the letter after the Staging. I THINK I was a Stage 3b, but it might have been a Stage 3c. Either way, it is neither here nor there because I'm now a Stage IV (have not been diagnosed with any letter with that). Since we found the spread to the adrenal gland and the lungs, I automatically became a Stage IV, but we have no idea if I was at diagnosis or not since we were not looking at my lungs or adrenal gland back then... just focusing on the colon and intestine (all tests did not indicate it went any further). So whether I was a Stage 3a, b, c or d really doesn't mean anything other than the tumour had penetrated the intestinal wall. Out of 17 nodes, only 1 tested positive for cancer. The surgery was a success, I really didn't have any lymph node involvement and now I'm a Stage 4... go figure??

But, for those who are new and wondering what the Stages mean and why the letters after them... here's a breakdown of the different systems, depending on what your team uses:

Dukes system

Dukes classification, first proposed by Dr Cuthbert E. Dukes in 1932, identifies the stages as:[30]

* A - Tumour confined to the intestinal wall
* B - Tumour invading through the intestinal wall
* C - With lymph node(s) involvement (this is further subdivided into C1 lymph node involvement where the apical node is not involved and C2 where the apical lymph node is involved)
* D - With distant metastasis

TNM system

Main article: TNM

The most common current staging system is the TNM (for tumors/nodes/metastases) system, though many doctors still use the older Dukes system. The TNM system assigns a number:

* T - The degree of invasion of the intestinal wall
o T0 - no evidence of tumor
o Tis- cancer in situ (tumor present, but no invasion)
o T1 - invasion through muscularis mucosa into submucosa
o T2 - invasion through submucosa into the muscularis propria (i.e. proper muscle of the bowel wall)
o T3 - invasion through the muscularis propria into subserosa but not to any neighbouring organs or tissues
o T4 - invasion of surrounding structures (e.g. bladder) or with tumour cells on the free external surface of the bowel
* N - the degree of lymphatic node involvement
o N0 - no lymph nodes involved
o N1 - one to three nodes involved
o N2 - four or more nodes involved
* M - the degree of metastasis
o M0 - no metastasis
o M1 - metastasis present

AJCC stage groupings

The stage of a cancer is usually quoted as a number I, II, III, IV derived from the TNM value grouped by prognosis; a higher number indicates a more advanced cancer and likely a worse outcome.

* Stage 0
o Tis, N0, M0
* Stage I
o T1, N0, M0
o T2, N0, M0
* Stage IIA
o T3, N0, M0
* Stage IIB
o T4, N0, M0
* Stage IIIA
o T1, N1, M0
o T2, N1, M0
* Stage IIIB
o T3, N1, M0
o T4, N1, M0
* Stage IIIC
o Any T, N2, M0
* Stage IV
o Any T, Any N, M1

Hope this helps!

Huggggggs,

Cheryl

KathiM

CherylHutch said:

How does it help?
Hi PP,

Ok, somewhere in all my paperwork, there is the staging from when I was first diagnosed but other than for research statistics and giving the doctors a guideline as for treatment, I'm not sure what the importance is? First, the staging methods were thought up many, many years ago and we all know that treatments and outcomes have changed so much that what was once thought of as "terminal" and the prognosis was not good... well, that has been challenged now and we are hearing of more and more people who have far outlived the expectations of their staging. Heck, I think it was only 10-15 years ago if you were a Stage 3, no matter what the lymph node involvement.. it was considered game over. Now we have Stage IV patients living for years after their 6 month - 1 year prognosis.

To tell you the truth, I don't think I ever paid attention to the letter after the Staging. I THINK I was a Stage 3b, but it might have been a Stage 3c. Either way, it is neither here nor there because I'm now a Stage IV (have not been diagnosed with any letter with that). Since we found the spread to the adrenal gland and the lungs, I automatically became a Stage IV, but we have no idea if I was at diagnosis or not since we were not looking at my lungs or adrenal gland back then... just focusing on the colon and intestine (all tests did not indicate it went any further). So whether I was a Stage 3a, b, c or d really doesn't mean anything other than the tumour had penetrated the intestinal wall. Out of 17 nodes, only 1 tested positive for cancer. The surgery was a success, I really didn't have any lymph node involvement and now I'm a Stage 4... go figure??

But, for those who are new and wondering what the Stages mean and why the letters after them... here's a breakdown of the different systems, depending on what your team uses:

Dukes system

Dukes classification, first proposed by Dr Cuthbert E. Dukes in 1932, identifies the stages as:[30]

* A - Tumour confined to the intestinal wall
* B - Tumour invading through the intestinal wall
* C - With lymph node(s) involvement (this is further subdivided into C1 lymph node involvement where the apical node is not involved and C2 where the apical lymph node is involved)
* D - With distant metastasis

TNM system

Main article: TNM

The most common current staging system is the TNM (for tumors/nodes/metastases) system, though many doctors still use the older Dukes system. The TNM system assigns a number:

* T - The degree of invasion of the intestinal wall
o T0 - no evidence of tumor
o Tis- cancer in situ (tumor present, but no invasion)
o T1 - invasion through muscularis mucosa into submucosa
o T2 - invasion through submucosa into the muscularis propria (i.e. proper muscle of the bowel wall)
o T3 - invasion through the muscularis propria into subserosa but not to any neighbouring organs or tissues
o T4 - invasion of surrounding structures (e.g. bladder) or with tumour cells on the free external surface of the bowel
* N - the degree of lymphatic node involvement
o N0 - no lymph nodes involved
o N1 - one to three nodes involved
o N2 - four or more nodes involved
* M - the degree of metastasis
o M0 - no metastasis
o M1 - metastasis present

AJCC stage groupings

The stage of a cancer is usually quoted as a number I, II, III, IV derived from the TNM value grouped by prognosis; a higher number indicates a more advanced cancer and likely a worse outcome.

* Stage 0
o Tis, N0, M0
* Stage I
o T1, N0, M0
o T2, N0, M0
* Stage IIA
o T3, N0, M0
* Stage IIB
o T4, N0, M0
* Stage IIIA
o T1, N1, M0
o T2, N1, M0
* Stage IIIB
o T3, N1, M0
o T4, N1, M0
* Stage IIIC
o Any T, N2, M0
* Stage IV
o Any T, Any N, M1

Hope this helps!

Huggggggs,

Cheryl

Thanks, Chery!!!
That was great info! I was a T2, N1, M0...IIIA

BUT, I agree...all that mattered was that I was trusting my 'team' to know better than I what treatment I should have. If I hadn't, I would have taken my chart elsewhere...

Hugs, Kathi

polarprincess

thanks
thanks for the responses. The reason i am asking is because of several research papers, studies, books i read etc.. at mayo clinic and online that showed there is a significant difference in what the different T stages and a, b, or c stages mean(in fact that is why they have now broken it down into 3 different stages- this is fairly new still) and what treatments people should get particularly with rectal cancer you will find many stage IIIa's only get 28 days with 8 folfox, but a stage IIIc (from what i have seen on the different forums i visit) will more than likely get 28-32 days with 12 treatments of folfox. If you look at the nomogram calculators, you will also find the differences. The reason it is helpful to me is that for example someone is thinking they don't want to do radiation and they are looking for comments/advice and i notice they have posted they are in stage IIIa, i have found a study which shows that someone in stage IIIa only gets a 3% benefit from it, and the study says it should be reconsidered for someone in that stage, and i think that is useful information... i guess that is why i am curious... sounds like most of you really don't find it important i guess, and that is fine, but i think it is helpful to know who the other people are in your stage, because you can compare notes and see if you are getting similar treatments etc.. My local doctor was only going to give me 3 months of 5FU (no oxaliplatin), and that was it even though mayo clinic had recommended 4-6 months. It wasn't until i came online and found these forums and found that almost everyone else in my stage was getting 6 months.. If i were a stage IIIc and noticed other people were getting 12 treatments of folfox, and i was only getting 8, i would want to know that so i could ask my doctor..am i getting enough?? I know this is one of the reasons people should stay off the internet, but i work in a hospital and i just don't have the faith in doctors the average person has, so i need to be filled up with info before i go see mine.

CherylHutch

polarprincess said:

thanks
thanks for the responses. The reason i am asking is because of several research papers, studies, books i read etc.. at mayo clinic and online that showed there is a significant difference in what the different T stages and a, b, or c stages mean(in fact that is why they have now broken it down into 3 different stages- this is fairly new still) and what treatments people should get particularly with rectal cancer you will find many stage IIIa's only get 28 days with 8 folfox, but a stage IIIc (from what i have seen on the different forums i visit) will more than likely get 28-32 days with 12 treatments of folfox. If you look at the nomogram calculators, you will also find the differences. The reason it is helpful to me is that for example someone is thinking they don't want to do radiation and they are looking for comments/advice and i notice they have posted they are in stage IIIa, i have found a study which shows that someone in stage IIIa only gets a 3% benefit from it, and the study says it should be reconsidered for someone in that stage, and i think that is useful information... i guess that is why i am curious... sounds like most of you really don't find it important i guess, and that is fine, but i think it is helpful to know who the other people are in your stage, because you can compare notes and see if you are getting similar treatments etc.. My local doctor was only going to give me 3 months of 5FU (no oxaliplatin), and that was it even though mayo clinic had recommended 4-6 months. It wasn't until i came online and found these forums and found that almost everyone else in my stage was getting 6 months.. If i were a stage IIIc and noticed other people were getting 12 treatments of folfox, and i was only getting 8, i would want to know that so i could ask my doctor..am i getting enough?? I know this is one of the reasons people should stay off the internet, but i work in a hospital and i just don't have the faith in doctors the average person has, so i need to be filled up with info before i go see mine.

Good answer, PP
Thanks, PP... that makes it more understandable as to why you were asking the questions and I can understand now where you are coming from. I still would be a little leary about comparing treatments with someone who potentially has the same staging as you, because there could be other factors that come into play that have nothing to do with the staging.

When your local doctor recommended 3 months of 5FU (no oxi), did he/she explain to you WHY this recommendation? Obviously, when someone is brand new to the journey, they are still in shock and probably wouldn't have a clue to question it because everything is new and why would they doubt it. BUT your doctor should have explained why you were getting 3 months, what the followup treatment might be, whether you would need radiation or not and if not why, and if yes, why, etc. I would love to know if the standard is 4-6 months, then why was he not going with the standard? Or is the standard 3 months, but Mayo Clinic feels there are more benefits if you have 4-6 months... and is that a generalization or is that if a patient meets certain criteria.

My oncologist told me that for colon cancer that has been treated with surgery to remove the tumour and a intestinal resection, the standard would be 12 treatments of 5FU, Leuvorin, and oxi. But she is going to start me with 8 treatments and hope that we can get through 6, because I'll also be having the 6 weeks of daily radiation and will get 6 weeks of oral chemo during that period. She says that if I can make it through 6 treatments of the 5FU, Leuvorin and oxi, then she would be pleased with that, but we will re-evaluate and see how I'm doing by then if the radiation hasn't beaten the energy out of me. She then explained that the radiation will be harsh, but we shall take it all one treatment at a time and re-evaluate after each one. Now, if you ask her, she thinks I did well because in the end, I got through all 12 treatments plus the radiation, although we did have to stop the oxi after 8... but as well as I did, my body really took a beating. I don't remember it taking a beating... I thought I was doing very well. I wasn't bed-ridden, I had a few more naps than I do now, but I kept up with my theatre involvement, so how bad could it have been?

But that's what I mean... everyone's treatment plan could be different and by the time you start it, your actual staging loses importance. She had me on a plan with a goal of 8 treatments, hoping I could get through 6 and I ended up having 12, along with the radiation which had nothing to do with the staging but because the abscess had attached itself to the abdominal wall and the bladder... so the radiation was to radiate both those areas.

Someone else who was a Stage IIIb or Stage IIIc would more than likely have a different plan again and more than likely wouldn't need radiation. But if the two compared they might wonder why they were getting such different treatment.

I guess I haven't thought too much about comparisons because I was told right from the start that no two people are the same and technically, no two treatment plans are the same because of the different variables.

Cheryl

polarprincess

hi
well my onc is the only medical oncologist at the cancer center i go to , so she is super busy, and although comes highly recommended, i sometimes wonder if she knows what she is doing. She is constantly changing her mind about my treatment and that is why i am always on here looking to see what i should be getting. When i first went to her after coming home from mayo, both she and the radiation oncologist were surprised at mayo's recommendation of Fulfox. I had a T1 polyp that had just started having cancer in it, and 1 lymph node positive out of 26 with a cea of 0.3. They both said they do not use Folfox on T1 cancers, because that is the big guns and they save it for the "big" cancers. I then said well mayo recommends folfox and so then she agreed to use it, but had i not said anything, i would not have gotten it. She also thought anything more than 3 months would be overkill and put me at risk for long term effects unnecessarily.. and i appreciate her concern, but i want every chance i have at killing this cancer if any remains, and if every other T1 N1 in the country is getting 6 months then why not me?? Mine was treated as rectal, so got the radiation, but I have also heard her telling colon cancer patients that it is recommended to have 14 treatments of Fulfox, and i have never heard of anyone getting 14 as standard.. so i have no idea where that came from..another reason i question whether my doc knows what she is doing, but unless i travel quite a ways for chemo, this is the only doctor avail. You are probably very right about how we shouldn't compare, but i just can't help it!!

2bhealed

polarprincess said:

hi
well my onc is the only medical oncologist at the cancer center i go to , so she is super busy, and although comes highly recommended, i sometimes wonder if she knows what she is doing. She is constantly changing her mind about my treatment and that is why i am always on here looking to see what i should be getting. When i first went to her after coming home from mayo, both she and the radiation oncologist were surprised at mayo's recommendation of Fulfox. I had a T1 polyp that had just started having cancer in it, and 1 lymph node positive out of 26 with a cea of 0.3. They both said they do not use Folfox on T1 cancers, because that is the big guns and they save it for the "big" cancers. I then said well mayo recommends folfox and so then she agreed to use it, but had i not said anything, i would not have gotten it. She also thought anything more than 3 months would be overkill and put me at risk for long term effects unnecessarily.. and i appreciate her concern, but i want every chance i have at killing this cancer if any remains, and if every other T1 N1 in the country is getting 6 months then why not me?? Mine was treated as rectal, so got the radiation, but I have also heard her telling colon cancer patients that it is recommended to have 14 treatments of Fulfox, and i have never heard of anyone getting 14 as standard.. so i have no idea where that came from..another reason i question whether my doc knows what she is doing, but unless i travel quite a ways for chemo, this is the only doctor avail. You are probably very right about how we shouldn't compare, but i just can't help it!!

Old timer here
When I was dx'ed in 2001 they were still staging using Dukes and beginning the newer TNM staging. I was a Dukes C and T3N1M0. They weren't using the a,b,c's after the staging back then. So when I see that on posts here I have no idea what they mean.

My oncologist at Mayo Clinic in Rochester said that the adjuvant chemo of the day was 5-FU and leucovorin. Only. They brought the big guns out after a recurrence. If I had been a stage II they would not have recommended ANY chemo at all saying surgery was curative. I really don't remember what the time frame for treatments would have been since I didn't do them.

So I am surprised to hear they have added the other mixes to the cocktail. An informative book is Questioning Chemotherapy by Ralph Moss, PhD. It was the very first book I read after dx while still lying in my hospital bed recovering from surgery. His website is full of good research info on various chemos. www.cancerdecisions.com

Hope this helps.

peace, emily

VickiCO

polarprincess said:

how do they know?
I am curious, how do they know you are stage III without having done the surgery yet?

Stage 3
Because of the size, location and the fact it is through the wall. They did do an interior ultrasound - like a colonoscopy but with better equipment, as well as traditional ultrasound and CT scans. That is when it was initially staged.

Vicki

angelsbaby

stages
husband stage 3c 5 of 15 nodes were positive. now he is stage 4 terminal with mets to liver kidney stomach and new tumor in colon again this time on the left side sigmoide area

michelle

pamness

Stage IIIA 2 positive lymph nodes.
I know that there are many treatments variations. I was diagnosed with Stage IIIA colon (not rectal) cancer with 2 positive nodes. A surprise, since my CT and MRI's were clear.

It is my understanding that the current standard for IIIA colon cancer is - colon resection - 8 rounds of folfox and 28 days or radiation with 5F
U - I know that this can differ a bit.

I was treated at Massachusetts General Hospital and am currently 18 months ned.

From what I have learned this is standard treatment for stage IIIA colon cancer - variations of this treatment occur for people with slightly different circumstances.

Some people don't know their stage - it is my understanding, that until you have surgery and the lymph nodes are test you don't know - so if you have radiation or chemo first - that would depend on the size of your tumor or many other variable you won't know.

People with mets to areas beyond the colon are generally Stage IV. I very different thing to treat.

It is confusing and upsetting. I hope your doctors can give you more insight.

Pam

MoonDragon

Stage IIa/bT3/4N0M0
I found it all to be very confusing at times. My tumor ate completely through the serosa but was not found in any other organs. Sometimes I am referred to as a T3 and sometimes a T4 depending on who's interpretting it. So essentially I am a Stage IIa/bT3/4N0M0! I usually just junk the ending and consider myself a Stage II since it wasn't found in any other organs or lymph nodes. I did have another cancer in my gallbladder but it was on the inside and so not considered a met?!? My oncologist says I'm one of the most abnormal cases of anything he's ever come into contact with as my body is also missing the enzyme needed to break down Xeloda and on top of that I'd been getting chemo and was down to my last round when the gallbladder cancer was found. He said that shouldn't have been there if the chemo had been doing it's job. It's a wait and see game for me to see what will come of it...or not. One CEA test at a time!