Newly Diagnosed and Need Advice

Hey Nico
Welcome to the forum. I was right where you are now about 1 and 1/2 years ago. I also had absolutely no symptoms and was blindsided just like you. They're going to remove a section of your colon and some surrounding lymph nodes to determine your stage. You should know all stages are curable, there are people here in this forum at all stages with really good advice. I'm 3b, maybe 4 depending on a recent scan.
Try not to freak out! It's going to become a marathon, not a sprint. Arm yourself with a good diet, support, and information. My surgery was laporoscopic, way faster healing time. If you go on chemo I can tell you about that later, if you're early stage they may not even recommend it. I had folfox which is pretty standard.
Hang in there and good luck!

I'm stage III

I didn't have any symptoms when I was diagnosed.  They can't stage the cancer until they can biopsy. I had a resection. I  had two tumors on opposite sides of my colon. They removed 4 1/2 feet of the colon. I didn't need a ostomy. four weeks after surgery I started Folfox regimine of chemotherapy. I'm scheduled to do 12 rounds. I'm in the middle of round 7. The hardest part is not having the answers.  I agree with all of the advice. I would suggest you make sure you're part of your team. Ask them questions until you're comfortable. Report your symptoms as you go along. This forum has been my home away from home. Fear and hope are understood. Knowledge is accumulated from all parts of the world. whenever I come into the forums, it's like having tea and comfort. Try not to borrow trouble.  Waiting for the results are tough. 

symptoms

I think one of the maddening things about this disease is that it can manifest itself to differently with different people. As some have said, they diagnosed at Stage 3 or 4 and had no symptoms. I was fortunate enough to be diagnosed at Stage 1 and had some severe pain. Since I have had IBS for a long time, I passed those symptoms off. I went to the hospital when I went to the bathroom one day and produced a toilet bowl full of blood. Quite shocking! Good luck with it all. You might well be as fortunate as I have been, and I pray that will be the case.

*hugs*

Gail

Hello Nico

Sorry you had to find your way to our forum, but now that you're here, you won't regret joining.  We're a hardy bunch of people from across the board. Lots of Stage IV's here, because many lower stages that are NED (No Evidence of Disease - or in remission, cured, whatever you want to call it) only pop in now and again, but they are out there, and there are many of them. 

Its an awful feeling hearing those words 'You have Cancer'. But, you will find, as the days go forward, and especially after you get staged, are set up with a team of specialist, and go forward into treatment, that the fear lessens and believe it or not, you feel quite 'normal' though I find others still like to treat me like I'm not (Wait, maybe I'M not). 

Too many people do not have any symptoms before diagnosis, and that is why there are so many, too many Stage IV's.  What a blessing for you that you were forced into an early Colonoscopy. You could have easily gone six more years with no symptoms and joined us at Stage IV.

So you ask, at what stage do people usually start to experience symptoms. My person answer is that it differs for everyone. There is no set stage. I have a friend who knew something was wrong, she was 24 at the time. She was diagnosed at Stage III. Some have no symptoms at Stage IV. 

Don't ever beat yourself up about 'missing something'. I bet there was nothing to miss for you.  I was silly. At 50, I didn't get a Colonoscopy because I don't like IV's. And for a good six months, I felt like something was amiss. I even said to myself 'I wonder if its Cancer?'. I believe my inner soul was telling me it was, but I didn't listen. I could beat myself up about that, but what would it change? Nothing!

Then you ask, Do you think that the mass is at Stage IV?  You won't know until it is removed along with lymph nodes and biopsied. My tumour was the size of a man's fist, I was stage III B at the time (I've been bumped up with a liver met to Stage IV). So tumour size is not an indication of stage. As Easyflip said, it will depend on several things, some being, if it is contained inside the colon, if lymph nodes are infected, if it has spread to the liver or lungs (the two usual places). So, sit back and relax......OK, thats not going to happen, right, but try your very, very best not to overly stress, as stress and Cancer like each other very much. 

I'm from Desert Nevada, so can't help with your other question, but there are many from the East here on the forum. 

Here is a little advice just from me. 

- Get a good notebook and pen - Write down all of your thoughts, concerns, all of the physical things that are going on, everything. Keep your note book with you throughout your treatment, from your first appointment to your last appointment (about eight years). Your Oncologist needs to know everything. 

- Try to have someone with you at every appointment, but especially those first ones. You are going to get a heap load of information fired at you, and four ears are better than two, plus your handy dandy notebook.

- Relax Relax Relax - I personally got into meditation and I listen to allot of Crystal Bowl, Om, and meditative music, it works for me (almost miraculously) but might not be your thing. Which leads me to the next thing

- Do what works for you, to get yourself to a state of peace. We will all advise, but its you who knows you best. 

Finally (phew) YES, IT IS HOPEFUL. In fact, regardless of the staging, ALWAYS have hope. Tell youself that you will be the one that survives, that is cured, that walks away. A positive attitude goes a very, very long way when you are a Cancer patient. 

Darn, I have gone on a bit. There is plenty more to be said, so be sure and visit us often. We are here to help and support, to love, laugh, weep and lend an ear to your sorrows and frustrations. We've pretty much all been there in our own, individual ways. 

Good luck, new friend (are you male or female or would you rather not say?)

SUE/TRU

Trubrit said:

It is true

For the most part, the GI's know their stuff, and when they say its Cancer, they don't just spill it out. And with everything in life, sometimes there are mistakes. Yes, the chances are you have Cancer. 

I know this is hard for some, but this is how I look at it, how I've learned to look at everything.  Worrying yourself silly (or sick, as can happen) will not change the outcome. If its Stage IV, worrying will not change that it is Stage IV. If it is Stage I, then you've done a whole lot of worrying for .... well... I can't say nothing, as its still Cancer, but I think you get my drift. 

I allow myself 10 minutes of worry, or tears or fears or dispair (depending on what I'm facing) and then I snap out of it and live life.  

I do believe that Cancer thrives on stress, so if you can keep that down to a minimum, then all the better for you. 

When do you get the Pathology report? 

Cancer at any stage is treatable. In that sense, Colorectal Cancer is good, as its not usually one where they say 'Sorry, its too far advance, you have one month'.  

Again, I wish you all the best and we'll be here awaiting your results and hear what the plan of attack is. 

SUE/TRU

Hey Nico!

I'll keep you in my thoughts and prayers. My husband has a multitude of heart issues so I was devestated when we were told he had colon cancer. It was a strange situation - the surgeon called me in and went on and on about how he would need surgery and possibly chemo and radiation. The nurse cut in and said that it was exactly where her mother's cancer was and in a spot that was easy to remove by surgery. When the nurse walked me out, I turned to her and said, "It's cancer for sure, right?" And the nurse said "Yes, the doctor sees enough of it to know and the tests will show if it has spread." So I left feeling that my husband had cancer 100%. Usually nurses don't say anything, so the fact that she did, I felt meant that they knew it was cancer definitely. But when we went to the specialist to get results, the CT scan showed nothing and the biopsies came back negative. So he re-did the colonoscopy and saw that it was a flat polyp and the second set of biopsies came back negative. So he had it removed via a colonoscopy.

So doctors and nurses can be wrong. Even the specialist told us that the first doctor thought it was cancer and called it a mass/tumor. We were so lucky because of my husband's heart issues, they elected not to surgery but remove it the EMR way. He has another colonoscopy in November to keep a check on it.

I'll keep you in my prayers.