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Newly Diagnosed and Need Advice

Nico08
Posts: 19
Joined: Aug 2014

Hello. I had a colonoscopy on 8/18/14. I am 44. I had no symptoms, the main reasons for having the colonoscopy before the standard age of 50 was because I thought I might be losing my health insurance coverage and my uncle died from colon cancer at 75. I believe he lived with stage 4 colon cancer for about 5 years.

So, the gastroenterologist who performed the colonoscopy said he removed 3 or 4 polyps that were between 1 and 2 centimeters from me. But he left a 3 to 4 centimeter mass in my descending colon. After the colonoscopy, he told me I had colon cancer. The pathology report will confirm, but has not yet been received.

The gastroenterologist said that I would need to have surgery to have the mass removed and that whether chemotherapy was necessary would depend on the pathology report, and the CAT scan that I have scheduled. The CAT scan is to be of my chest, abdomen and pelvis with IV and PO contrast.

I did not have any symptoms that led me to get the colonoscopy. I did not have visible blood in my stool, I did not have any particular problems with elimination, I have not felt body pain or lethargy.  I did not have anemia.

I had blood work done during a physical in 7/14 and the majority of my numbers were in range. And I had blood work in 2012 and that was within range too.

I am scared. I believe that the results of the pathology report and the CAT scan are most important now in assessing and staging where I am at. But does my situation sound at all hopeful? Does it sound like something that I could be cured from? The gastroenterologist said that the size of the mass (3-4 centimeters) is not indicative of assessing the severity of the cancer, but rather the depth of the mass is more important and whether it has invaded other areas. But I did read a medical journal article suggesting that there is a relationship with the tumor size and its depth.

At what Stage (I, II, III, IV) do people usually start to experience symptoms?

Do you think the mass that I have is a stage 4 diagnosis? 

 

Also, I am from Old Bridge, New Jersey, in Middlesex County. I wanted to know if anyone could make a recommendation for a rectal colon surgeon and an oncologist in the area? Ideally, these doctors would be in Aetna's network. I am just trying to get my ducks lined up in a row.

If I find a board certified rectal colon surgeon in my area who I like, would it still make sense for me to go somewhere like Sloan Kettering?  I would like to get at least one second opinion in regard to a treatment plan.

I figured someone here might have a recommendation for me. Thanks.

 

Easyflip's picture
Easyflip
Posts: 479
Joined: May 2013

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!

Trubrit's picture
Trubrit
Posts: 2212
Joined: Jan 2013

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

UncleBuddy
Posts: 831
Joined: Aug 2013

Nico, they probably won't know the stage until they do the biopsy and do a scan to see if you have mets anywhere else in your body. My brother was stage 2a but within a year he became stage 4 because it had spread to his liver and lungs. That doesn't happen to everyone, so don't let that scare you. I agree, there are people on here in all stages and are doing really well. Honestly, if I were you, I would get that 2nd opinion right away at Sloan to see what would be the best way to deal with your cancer. 

My brother is the one with rectal cancer, but I help him with all his appointments. Here's some advice we were given by people on this site:

1. bring a friend or family member with you to each dr visit

2. before you go, write down any questions you have because you will forget what to ask

3. don't be afraid to ask lots of questions, no question is stupid

4. come back and let us all know what your plan is. There are a lot of people on here who can guide you and give you info on any side effects and/or ways to help with them

I wish you lots of luck and hope you can kick cancer's butt!

Lin

Yolllmbs's picture
Yolllmbs
Posts: 356
Joined: May 2014

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. 

Annabelle41415's picture
Annabelle41415
Posts: 4560
Joined: Feb 2009

Welcome to the boards.  First of all, please just wait for the pathology report to come back before you start worrying.  Case in point - there was a woman here posting that her husband went in for a colonoscopy and they found a big tumor and they took a biopsy but said it looked like cancer.  Who would not think that since doctor's should know.  She said that pathology hadn't come back yet but they were scheduled for other tests.  Her husband's report finally came back and the results were not cancerous and therefore she was relieved and she no longer is on the board.  I'm not saying that you shouldn't worry or be concerned, but sometimes it's not what it seems.  If you do have it, then you will deal with it.  Never is anyone happy with the diagnosis but it is doable.  We are a very wonderful group that is here for anything you need to give you our experience and our support.  They probably will do a CEA marker test on you if they haven't already.  That is a cancer marker for CC but it's not always accurate, if it is though it can be a good indication for return of the disease.  You don't always have symptoms and more people don't have it than do, unfortunately.  You could have caught it very early and that was good that you went in when you did.  Wishing you a great outcome on the path report and please let us know what it said and if there is anything we can help you understand. 

Kim

tootsie1's picture
tootsie1
Posts: 5049
Joined: Feb 2008

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

esk2poo
Posts: 26
Joined: May 2012

He is a board certified CRC surgeon on Park Ave. in Edison. Best in the area. Works out of JFK mostly but you're not too far. I had my chemo through Princeton medical associates. Sloan is one of the best and just over the bridge. They have a satellite office in Basking Ridge too.

Good luck with everything,

Allen

Suemarie
Posts: 23
Joined: May 2014

I think I'm the lady Kim was referring to and I agree - you never know until you receive the pathology reports. After my husband's colonoscopy, we were told he had colon cancer, would need surgery and then - if it had spread - chemo and/or radiation. The doctor termed it a large mass/tumor. My husband was sent for more tests and to a specialist. Turns out it was NOT cancer at all. It was a large flat polyp that was removed through a colonoscopy using an EMR procedure - EMR stands for Endoscopic Mucosal Resection. He did not need surgery at all but there was only one doctor in the city who could remove it this way and she did it successfully. Further tests still showed no cancer.

I'll keep you in my prayers and thoughts and I'm hoping it's good news.

Nico08
Posts: 19
Joined: Aug 2014

Hi.  Thanks for sharing your experience. I understand what you mean about waiting for the pathology report.  It's just that the gastroenterologist stated with such confidence that I had colon cancer.  And even though my mind was foggy from the anathesia, I thought to myself, don't you need a biopsy and pathology report to say that definitively?  I am accepting that the likelihood is that it is cancer, but there is a small chance the gastrenterologist made a mistake.  And my hope is that, if it is cancer, that since I had the colonoscopy at 44 with no symptoms, hopefully the cancer is at an early stage and that it is treatable.

Trubrit's picture
Trubrit
Posts: 2212
Joined: Jan 2013

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

Suemarie
Posts: 23
Joined: May 2014

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.

Nana b's picture
Nana b
Posts: 3048
Joined: May 2009

Sorry you are near. This is a great board and the place to ask lots of questions.  Try not to get caught up with statisics on the internet, just do your best to eat right, exercise and stay healthy.  Hopefully, the mass won't be outside of colon wall. 

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