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Can Someone Explain Staging & Why I Still Have No Clue?

Peter_S's picture
Peter_S
Posts: 108
Joined: Oct 2018

The only staging I was hoping to ever have to concern myself with would be staging this house when we went to sell it but this pesky colon cancer has changed all that. So because I'm slow as molasses. Actually I'm even slower than molasses (literally if you held say, a downhill race and it was me and my opponent was a poured from the bottle puddle of molasses you would be wise to put your money on the molasses

After my colonoscopy the GI doc say's Pete you have cancer I ask what stage he says he doesn't know until the pathology report comes back in about ten days. He calls me before that to tell me that a lab report does indeed confirm that the mass he found is indeed cancer. When I ask what stage of cancer I have he tells me during surgery they'll remove 12 lymph nodes and a pathologist will peer through his/her cancerous crystal ball and guess my number, sounds fair to me.
 
I meet with the surgeon and he tells me it'll take a few weeks after the surgery to get the results back that at what stage the cancer is. That's ok although he did tell me that regardless of the stage he doesn't like to give this information over the phone and rather during an appointment - which thinking about it now, feels like that should be my decision if I feel like schlepping (back to the hospital to hear bad or worse news) or if hearing it over the phone suits me just fine. 
 
I'm asking in part because I've seen so many videos on youtube and it looks like lot's of folks find out what stage their cancer is shortly after their colonoscopy, or CT scan, which I had and was told looked good because it looked like there wasn't any cancer in my liver and maybe the Dr told me kidneys too, but I honestly don't remember. As usual I've turned what should have been a simple, to the point question into a thesis and for that I apologize. That said, can anyone please explain staging to me and why almost three weeks out from finding out I have cancer to a little longer than two weeks prior to having my entire Sigmoid colon removed I still have no clue what stage I have. Thanks
 
Peter
 
abrub's picture
abrub
Posts: 2131
Joined: Mar 2010

It's dependent both on the tumor type and the tumor spread.  I'm technically stage 4 because my cancer spread to other organs, but I'm a "good" stage 4, because the spread was by phyical contact with cancer cells, and not through the blood or lymphatic systems.

 

Peter_S's picture
Peter_S
Posts: 108
Joined: Oct 2018

 

What you're basically telling me is that I not only have  cancer but math is involved...oh the humanity - if I had to choose between the two it would be just the Cancer please, no thank you to the math, God I despise math. 
I'm glad you're a good stage 4 and my hope is that your score get's lower and lower as you feel better and better, thanks for the beam of light - it helps. Peter
Canadian Sandy's picture
Canadian Sandy
Posts: 629
Joined: Jul 2016

I’m  stage 11b because cancer did not spread to my lymph nodes or any other organ. I have been Ned since having 12 inches of my colon removed. Hopefully you can do that to. Blessings Pete!

Peter_S's picture
Peter_S
Posts: 108
Joined: Oct 2018

I never knew there was a stage eleven, but I sure am happy to know that your cancer didn't spread and that there's no evidence of disease, boy that news must have made for some exhale.... In fact I think I heard the leaves rustle with joy. Thank you Sandy. Peter 

Canadian Sandy's picture
Canadian Sandy
Posts: 629
Joined: Jul 2016

It’s stage 2b Peter. Stage 2 is good but the b part means higher risk.

Twinzma
Posts: 226
Joined: Jan 2018

You found a wonderful group of people here that will help you in so many ways naviagte through this crazy and God aweful disease. The following link is copied from this very website that explains staging. Likely you have not undergone full body scans to detect if it has spread to distant organs yet and that is why they are holding off on telling you. It likely spreads to the liver or lungs first and since your liver is good, I am hopeful it isn't very advanced. Hopefully it has been caught in time and surgery and some mop up chemo can put you into NEDsville (No Evidence of Disease). My husband's diagnosis was bleek 30 mets to his liver at diagnois it will be a year next month and he is still chugging along. Chemo has been fairly easy on him not making him really sick, he hasn't lost any weight, hasn't loss much hair some but not too bad. He has a rash all over from the Erbitux so his oncologist jokes that his modeling days are over, but very rarely does that rash cause more than a little itch from time to time. Granted everyone responds differently I just wanted to let you know that it may not be as bad as you expect. You may not be all that sensitive to the chemo drugs....It happens. I wish you a speedy recovery from surgery and pray that you find remission soon! Hugs!!!!

 https://www.cancer.org/cancer/colon-rectal-cancer/detection-diagnosis-staging/staged.html 

Peter_S's picture
Peter_S
Posts: 108
Joined: Oct 2018

Quote by W.C Fields. Why I haven't been thrown out yet is a mystery. I joined this group of wonderfully eccentric folks who unfortunately, like myself all have colon cancer and I joined the day of my diagnosis, or perhaps the day after - the mind is the first thing to go, which in case has absolutely nothing to do with cancer. I'm also grateful for the clarification of terms because here I am thinking NED stands for Nefarious Erectile Dissolution and haven't been able to find any information on it whatsoever google comes up empty handed.

Glad to know your husband is getting on well despite what I'm certain is at times a weary battle. I like your phrase of Nedsville and hope the two of you settle down there for good. My bags are packed and at any given notice I hope to arrive there myself one day - the sooner the better. Thanks for the kind reply - Peter
CaroleFL's picture
CaroleFL
Posts: 15
Joined: Oct 2018

Hi Peter,

Your molasses race had me laughing.

It's my understanding that Stage 4 means the original tumor (colorectal, in my case) metastasized to at least one distant organ. However, as someone else wrote, there are different levels within each stage. So I have the original colorectal cancer, originally 10 tumors in my liver, and apparent cancer in a number of lymph nodes. So I knew right away my cancer was Stage 4 and didn''t bother asking about the level of 4. The surgeon at Moffit said he wouldn't operate with so much cancer across my liver, as it's in my bloood stream too. My local oncologist agreed. But the chemo shrank the cancer a lot from my 8 treatments. I'm stiill Stage 4 but a ... well ... happier and more hopeful Stage 4. Carole

Peter_S's picture
Peter_S
Posts: 108
Joined: Oct 2018

Carole, this is all so new to me, I mean typing big words like "hat" not the cancer. But I'm learning so much I suppose we all are. We didn't sign up for this particular curriculum (see, curriculum is big word and I can type it, so I got that working for me) I have learned that Stage four doesn't have to mean the absolute worst case scenario in every person and that we each have a unique physiology (ahem, please notice the use of a another big word) which will call for equally unique treatments and results. I think with your splendid  and fighting spirit, I mean I've heard the talk by the water cooler and I know I wouldn't get in the ring with you. No way no how. I think cancer tapped the on the shoulder of the wrong girl and I know you're going to kick some cancer butt, while teaching me a few moves so thank you Carole, I'm wishing you only the best, always. Peter

CaroleFL's picture
CaroleFL
Posts: 15
Joined: Oct 2018

I've read that humor can be very healing. It releases all kinds of good hormones in the body that can attack cancer. I believe even just smiling at a fun Subject line in a post is good for me. So thank you, Peter, and I wish you all the best, too. Carole

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Yup, what's been said is correct. Mine was staged after surgery at three because some of my lymph nodes were involved. Now I'm stage four because it's in my lung. Stage two would have been if the lymph nodes were clear at surgery. I'm not familiar with the different levels within the categories. And I have no idea what stage one would include. But there is no stage five, I do know that. 

I'd rather hear results over the phone. Get it over with, rather than sit there sweating at an office.

Jan

Peter_S's picture
Peter_S
Posts: 108
Joined: Oct 2018

I'm starting to figure it out and you and I are on the same page here - I can take whatever news it is over the phone. If the surgeon insists I make a trip to his office to find out what stage cancer I have - he'll have a surprise in store when he finds out I'm only comfortable paying his bill from the comfort and privacy of my own home. And then I'll intentionally move to a house hundreds of miles away from his office, so I have a plan and I'm sticking to it. Thanks for the advice and hope your appointments went well and that you're feeling better - Peter

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

My Oncologist visited me in hospital two days after my resection, with the pathology report.  Sometimes it pays off, having surgery in a smaller town.  I'm guessing the reason you don't get your results for such an awful long time, is because you will have surgery in a bigger town, with a busier pathology lab. 

Just tell yourself it's Stage IV and then, when it comes back staged at a lower level, you can rejoice. 

Tru

Peter_S's picture
Peter_S
Posts: 108
Joined: Oct 2018

Small town or big city as long as you get good, quality care. I think the reason for the delay is they need the report on those lymphnodes it makes sense. I feel more at ease with the wait so I'll jump off that particular bridge when I get to it. I appreciate your taking the time to reply, hope all is well. Peter

Inspired2013's picture
Inspired2013
Posts: 45
Joined: Sep 2018

I knew from the beginning what stage mine was. The initial colonoscopy was strange looking so they did a bunch of biopsies that came back inconclusive. They then had to biopsy a spot on my liver and that confirmed colon cancer and thus stage iv. So for me it was four days between the initial colonoscopy and the definitive diagnosis and knowing it was stage iv.

Peter_S's picture
Peter_S
Posts: 108
Joined: Oct 2018

And that you got the information quickly, that had to reduce at least some of the stress and fear. I think the worse thing is not knowing. Even if the news we get isn't what we were hoping for it's a still a beam of light in a dark place which helps us make our way to the next step we take. Four days is very fast at least it sounds fast to me - which of course is because I'm three weeks out and still waiting. I hope you're doing well and feeling strong, thanks for the reply - Peter

Butt's picture
Butt
Posts: 354
Joined: May 2018

they need to do scans. Based on pathology report they determined I was 3c. After scans 4c the worst you can get. Butt.

Peter_S's picture
Peter_S
Posts: 108
Joined: Oct 2018

You left me a response on another thread it was something to the effect that only a small section of the colon was removed and in four days bowel movements were pretty much back to normal, and I was really happy for you. So I didn't know you weren't totally out of the woods, please do what you can to get yourself there. I haven't been asked to do any other scans and none have been brought up. I'm guessing more scans post surgery. Hang in and be well. Peter

feckcancer
Posts: 118
Joined: Jun 2018

hi. staging . T1-4 means what size the tumour is. N means if it has spread to lymph nodes or not. M (metastatic) means if it has spread to another organ(s) or not.  i was T3N3M0 which meant my original tumour was larger than 5 cm. it was in my lymph nodes (pelvic) and had not spread to any other organs. I am now NED which means no evidence of disease Cool

can get a bit more complicated than that but that is basically what it means. here is a link for anal cancer staging which you may find interesting as it has more detail.

https://www.cancer.net/cancer-types/anal-cancer/stages-and-grades

Most anal cancers, if they spread, typically spread first to the lymph nodes then liver & lungs which is why your Dr would have told you it looked good if not in liver. I don't know if that happens with colon cancer but possibly could be similar. Doctors do not usually tell you a stage until all MRI PET CT scans, blood tests etc are done.

Hope this is hopeful. 

PS: My doctors didn't tell me what stage i was , i found out because it was on a letter to my GP . i didn't find out until well after my treatment had passed . i also kept away from google and websites while in treatment which in hindsight was a good thing for me !!!

 

Annabelle41415's picture
Annabelle41415
Posts: 6525
Joined: Feb 2009

Staging can be done through different things.  After surgery taking the nodes and surrounding tissue they can tell if they got "clean margins" and that means that they got all the cancer in the surrounding areas.  If they take out nodes they always test those to see if they contained any cells.  If they do then that is a possibility of spreading to other areas.  Pathology takes about 7-10 days but within that time you should have all the answers you need.  If you don't then I'd get on the phone and question that.  3 weeks is way to long after surgery to find out staging.  You are going to a different doctor it seems like now, make sure they get all the results from the previous surgery and biopsies and demand an answer.  This is unusual to take this long. Ugg.

Kim

airborne72's picture
airborne72
Posts: 278
Joined: Sep 2012

Peter:

Welcome to this forum.  As you have already discovered, this is the place to be if one must have CRC.  The responses here are honest, bluntly so, and therapuetic.  No need to pay for counseling, just log on here and get involved.  Your fingers may become fatigued but it doesn't cost $125/hr to get some temporary reprieve from the mental and emotional confusion caused by CRC.

Your question/statement regarding staging of CRC hit home for me.  I went through that frustration. 

My protocologist couldn't/wouldn't say, but instead deferred the question to my surgeon.  My surgeon was a very poor communicator and said it depended.  He even waffled when I mentioned the incorporation of an oncologist in the event!  My oncologist spoke in riddles and said I needed another CT scan, but it was inconclusive because they could not get a device inserted into my rectum (bad sign).  My next stop was another trip to the colonoscopy table, but this time with a special camera that was invented by Superman - it could see through walls.  English was not that protocologist's primary language so between the residual effects of Michael Jackson's favorite drug and his verbal explanation, I remained clueless when I left that clinic.

With a feeling of being paranoid and even selfish, I bullied my way into the local oncology practice and was finally paired up with a rad oncologist and a medical oncologist.  The initial consult with these guys revolved around whether insurance would cover the services because so far none of my diagnoses had provided sufficient, clinical confirmation to warrant oncology.  But, I did have a clinically confirmed, cancerous tumor in my rectum that was so large that it was blocking the passage of anything in either direction.  We proceeded as if my situation would warrant oncological treatment.  I got mapped at the radiation clinic and then waited, and waited, and waited for someone to tell me that someone else had confirmed that my rectal cancer did warrant oncological treatment.

Out of the blue, I received a phone call from a clerk at some pharmacy confirming my mailing address.  He was getting ready to mail me a big box of Xeloda.  I told him to hold the phone, and then asked him who approved the prescription.  He said Medicare and Tricare.  So, that's how I found out that my rectal cancer was serious enough to warrant oncology.  I was telling myself that we seriously needed to have a "team meeting" and discuss communication practices.

Within a day I was on the table getting zapped with neutrons and eating Xeloda pills.  Once that picnic ended I underwent another CT scan.  The radiologist who reviewed it said that there was no evidence of a tumor.  Between the burning and the poisoning, and the natural process of fecal elimination, my tumor went down the drain.  I took a picture and shared it with my oncologist to be sure and he said it was common.

Now I was back in the surgeon's office because it was/is the commonly accepted medical protocol to surgically remove the offending section of the colon.  Plus, while you are down and out, that is also the time to check your margins - remove some lymph nodes for further pathological evaluation, which probably best defines one's stage of CRC.

A few weeks later I had my resection surgery.  Most painful event I have experienced, and I have had two lumbar spinal fusions.  Two issues were responsible for my discomfort.  I had a large amount of adhesions in my abdomen cavity due to a previous radical prostectomy (cancer survivor times two) and a double inguinal hernia repair.  The second issue was the hospital's aversion to include an adequate amount of opioid medication to control my pain.  That is another story unique to me and my comorbidity.  It had nothing to do with CRC.  Back to me laying in the hospital bed.  Somewhere in that time between being rolled into and transferred from one bed to another, visiting with family, mentally accepting the fact that I have an ileostomy, and sliding into a pain zone that literally kicked what was left of my ***, the surgeon came in and mumbled something to the effect that he removed 4 lymph nodes and the pathologist said they were clean.  I was supposed to understand that data, insert it into the previous data, and then compute my stage of cancer.

Two days after I got home from the hospital, I called my surgeon and asked him what my cancer stage was.  He was somewhat offended by the question and he said that he told me that when he visited my room after the surgery.  Stupid me!

My final chapter in this story iwa my adjuvant chemo therapy.  Have you ever asked a dog if it is hungry?  My oncologist said that I needed to undergo 12 sessions of FOLFOX6, again because this was/is the commonly accepted, medical protocol for treating CRC.  His argument was based upon the "it only takes one cell" theory.  I conceded but only endured three sessions before I tapped out.  My soul told me that the treatment was killing me at a faster pace than the disease.  I disengaged and told him that I would take my chances.  As we were shaking hands and saying goodbye, I asked him one last time.  What was my stage of cancer?  I was a 2.  If I had been a 2 in 1971 when my birthdate was the second one drawn in the "draft lottery" then my life probably would have been very different.  Just as Led Zep said, sometimes words have two meanings; sometimes numbers have two meanings.

Stay away from Google and the internet Peter.  This is the place to be if you have CRC.

Jim

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