...and it's cancer

[Calla]

I'm glad I didn't tell my husband until it was time for the colonoscopy. He would have been a wreck. Now he has things to do and research.

Really good idea on the binder. I can see I'll be swamped with paperwork soon.

Not telling my family yet. They will decend on my house and it will be totally overwhelming. And really, I have no information for them. I don't know my stage or treatment plan.

As for going to Mayo, I need to get copies of my tests....which so far isn't all that easy. I can't even get through to a human. I think that will be a good task for my husband. He's good at that stuff.

[Rob in PA]

Sorry to hear what you are dealing with Calla.
I was the same, couldn't get scope around my tumor. Doc told me when I came out from anesthesia that he was almost positive it would be cancer, he was right. I had total blockage so we had to do surgery within three days to relieve pressure. The surgery was a temporary colostomy, NOT surgery on tumor. As others have said, they most likely will have you do some sort of chemo/radiation to shrink tumor in preparation for surgery. All depends on staging and Mets.
Taking notes is excellent tip. Also, as we like to say around here..."this is a marathon, not a sprint" take a breath and lean on us when needed.

Best
Rob

[O Stoma Mia]

I guess....what's next? ... so what are the next steps?

I'm sorry to hear about your tentative diagnosis. Your title, "... and it's cancer", is the very first, brief news that all of us have received at the very beginning of our own journeys. But it is only the tip of the iceberg, so to speak. A statement such as this is just the first, preliminary assessment of "malignant vs benign" but it is a statement that must be clarified by a number of other tests and procedures to be performed in the immediate future.

In my opinion, the next two steps -- after determining malignancy of the biopsy -- are the following:

1. Rectal Cancer (RC) vs Colon Cancer (CC) -- The doctors need to know whether this cancer is rectal cancer or colon cancer. There are two different sets of protocols for treatment of colorectal cancer: One is for Rectal Cancer and the other is for Colon Cancer. The doctors need to tell you which one you have. In addition, the doctors need to tell you where in the rectum or where in the colon the tumor is located (it makes a difference).
   
2. "Non metastatic (MØ)' vs "Metastatic (M+)"-- The doctors need to know whether they are dealing with just one tumor (the primary tumor just discovered) or if they are also going to be dealing with other tumors that have spread to remote locations such as the liver, lungs, or peritoneum. Within the TNM staging system, this is essentially the difference between the MØ and M+ codes -- i.e.,the difference between 'No remote tumors' vs 'at least one remote (metastatic) tumor'. To test for this, they will soon be doing various X-rays, scans (CT, MRI) or ultrasounds to see if any remote tumors are evident.
   

If you combine the two steps above, then you obtain four possible starting points for newly diagnosed patients:

1. RC:MØ - Rectal cancer patients who do not have any mets
2. RC:M+ - Rectal cancer patients who have one or more mets
3. CC:MØ - Colon cancer patients who do not have any mets
4. CC:M+ - Colon cancer patients who have one or more mets.

Thus, by next week your doctors should know which of the above four groups you fall in. Then they will know which book to take off the shelf for determining the optimal treatment plan for you.

Within each of the above four categories there are a number of sub-categories, depending on the results of various physical exams, lab tests, biopsies, genetic tests, scans, etc., to be done over the next few weeks. Altogether, I would say that there are at least a dozen and a half different factors that have to be taken into account before a treatment plan can be finalized. All of this happens very quickly, and much if it is very new, very complicated, and hard to understand. The full process of diagnosis/staging takes some time to run to completion. You probably won't know the full story for another few weeks or so, after all the results have come in.

[Calla]

Yep. I'm getting bits of information.

The Dr said colon cancer when I asked which it is.
Said I have at least 3 lymph nodes with cancer. (CT is done) Cancer is through the intestinal wall.
I have spots on my liver, but he thinks those are cycts, not cancer. (MR I on Wednesday )

He said I'm stage 3, but had no further info until after the MRI. He said this information was ok. Not good, but not horrid.

I switched to Mayo Clinic in Rochester rather than stay up in the cities.
Mostly because my husband works in Rochester and i think this will be least disruptive. Plus my parents live closer to Mayo and can help so it's not all on my husband.

So far today my husband has
1. Made me a squatty potty
2. Booked me a massage for tomorrow
3. Bought me every kind of food treat you can name. Most of them are soft foods, so good deal.

I think he needs to pace himself.

[CatHair]

What a good, sweet husband. You are a lucky woman, with him next to you in this business.

[mmblz]

So sorry to hear. This was more or less my experience with colonoscopy too - it's a shock when you find out. Only advice I have... At least meet with a second surgeon - best you can find even if it's far from home. Don't be afraid to have surgery far from home if you feel better about the surgeon. It's only about a week. Then if you need chemo stay closer to home. It's ok to have surgery one place and chemo another. Get the second opinion, but do it ASAP and be ready to decide quickly. Once you've decided, push for the earliest surgery date you can get. Try to stay positive but if you can't you can't. This forum is a great resource, especially early on when you're trying to comprehend your new reality.

[Dana123]

I found these two resources helpful when i was trying to orient myself to my family's "new normal." It's key to get your records. I put them in a binder in reverse chronological order.

The Canadian document had questions to ask doctors, etc so it's a good guide to follow when you're stressed and confused.

http://www.cancer.org/cancer/colonandrectumcancer/index

http://coloncancercanada.ca/my-colon-cancer-companion/

[O Stoma Mia]

Yep. I'm getting bits of information...
The Dr said colon cancer when I asked which it is.

Just to clarify a few things ... If your tumor mass is 20 cm from the anal verge, then it looks like your tumor is somewhere around the sigmoid colon area. If you look at the diagram below you will see that the recto-sigmoid junction is S-shaped and has a sharp curve. This is probably why they couldn't get the colonoscope past the tumor. Eventually (after surgery recovery) they will have to do another colonoscopy in order to inspect the rest of the colon to see if there are any polyps there.


Reference: http://training.seer.cancer.gov/colorectal/anatomy/figure/figure1.html

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