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Went to the Oncologist today

Posts: 14
Joined: Apr 2004

First of all I'd like to thank EVERYONE who has been replying to me. Your support means the WORLD to me.
Today I went to the oncologist and he told me BASICALLY that the tumor they took out of my colon had properties of being both a carcinoid AND a carcinoma. He said that further tests would be required to determine what kind of treatment would be needed. He told me that if it is a carcinoid that no treatment would be needed and that chemo really wouldn't work on it anyway, but because that is such a slow moving type, that it could be years before I had another occurance.
He said if it was a carcinoma type, that they would be able to treat with chemo. So I'll be off to Roswell Park Cancer Institute so I can leave them a little bit of urine and blood so they can see exactly what they're dealing with. I was also told to bring my CT scans as well as the "block" from the pathology department.
Anyway, I came right out and asked him if it was terminal and he told me no, so that in and of itself was good news. I'm just still trying to stay positive and keep a good attitude about this. If there are any others out there that know something about this, please let me know. Just a bit nervous about all this. Thanks to any who reply.


Anonymous user (not verified)

Hi Jeff. I didn't have the opportunity to reply to your first post as I kind of stayed away from this cancer stuff for a few days to recharge my own batteries but I do want to welcome you and express how sorry I am that you need to be here. It's a great place though and you couldn't have found a more fun-loving, knowledgable, and compassionate people.

My name is Monika and I am caregiver to my husband Bert who like you was diagnosed with colon cancer (cecum colon, right by the ileocecal value) last year in August. Bert had two tumors removed, both had broken through the bowl wall and affected four lymph nodes however, no other organs as far as the surgeon could tell showed any signs of the disease. Both tumors were andenocarcinoma, grade II, and because of node involvement, Bert went on chemo late August 2003. He was on a regime of 5fu/leuc, once a week for six weeks and then two weeks off. Overall, he handled his treatments fairly well with no major problems until the last few (except for a colon infection....another long story) that he got in October.

In January of this year, I put Bert on my insurance which allowed us treatment at a major cancer center. Upon recommendation, we chose USC/Norris (L.A. area) and treatment by Dr. Heinz Josef Lenz, who I must admit is absolutely outstanding. So is the whole place. Dr. Lenz re-evaluated Bert and firmly believed in adding a third ingredient to the chemo cocktail namely that being oxaliplatin. Although already done with the regime he had originally been on, Dr. Lenz immediately told Bert that he will place him on more chemo, the new combo, for a minimum of 3 months, if not longer. This is because his node involvement was more than three, placing him at high risk for recurrence.

All I can say is so far, so very good. Bert has had two CT's and two PET's and just recently a colonoscopy and everything is clean....no evidence of disease. His CEA (tumor markers) numbers are not within the normal range, but I've learned not to worry so much about these numbers...they are merely a part of the whole "stew" of things and can actually go up in some individuals as a result of chemo itself.

To make a long story short, which is almost impossible for me to do, Bert remains in good health and I thank God every day for his blessings. You will be fine too!!!! and again, welcome to this group.

Monika, who will always be grateful that she found this board. :o)

Posts: 14
Joined: Apr 2004

Hehehe, I know what you mean about re-charge the batteries. I get kind of tired of talking and reading about it myself too, but there's no REAL getting away from it for awhile and the people that I have talked with here have been SO helpful. This is really nice.
My situation didn't involve as many lymph nodes with only one being involved. The tumor they removed (hemicolectomy) was 5cm. My sister being a nurse said that was a pretty good size one. Heheh. I've always done things big I guess. The surgeon that took it out said that he got it all and that it didn't look like a andenocarcinoma that he really didn't know what it looked like. The doctor told me today that it had properties of being carcinoid and carcinoma and that it could be both which is why the further tests. So thats where I'm at currently. I swear the WAITING is driving me NUTS. The ONLY thing that is getting me thru this is constant prayer and support from people like you here.
I was very pleased to hear about your husband's progress which gives me even more hope. I am very glad and appreciative that you shared your experience with me. I am also thanking God every day for giving me the strength to get thru this. I know that there are probably going to be some rough days ahead, but I will be fine when all is said and done. Thank you so much for the reply and I will keep you and your husband in my prayers.


kerry's picture
Posts: 1317
Joined: Jan 2003


Well, good news so far. Stay positive, that is 3/4 of the battle. I am a firm believer that frame of mind wins the battle.

Keep posting with questions and we'll keep giving you our experiences, answers and/or advice. My situation is similar to yours, but I was treated with chemo.

Take care and let us know how you are doing. It makes it easier to get through when you are doing it "together".


Posts: 14
Joined: Apr 2004

Yes, so far so good. I also believe that staying positive is a LOT of it. I am trying to be as positive as I can. I do get a bit scared everytime I have to go to these doctors, but I'm trying to work on that. I guess if I need to say to myself that I have cancer a few more times and once I get used to hearing it, it'll just be a word. Heheheheh!! I guess I just don't think about it that much and slowly I'll probably start getting back to my old routine before all this happened. I play a LOT of chess and am a real board game geek so I have to get back to doing that stuff. Thanks very much for your replies and support. I cannot believe how much it has helped. Thanks again.


Posts: 1
Joined: Apr 2004

I diagnosised with colon cancer, had surgery, home now recovering, scheduled to see oncologist on 4-19 to discuss chemo. I haven't slept for 4 nights now wondering what kind reactions I will encounter.

Posts: 14
Joined: Apr 2004

When I went and the doctor told me "Good news and bad news. Good news is all your other organs are fine, bad news is you have cancer." It shook me good. I was and still am very nervous, but fretting over it isn't going to take it away. I, too have ANOTHER appointment to undergo further tests to see exactly what kind of tumor it was that they removed. It has properties of being both a carcinoid and a carcinoma, so I have to go Monday for more tests. STAY POSITIVE though. You'd be amazed how much that really helps. I have it in my head that I'll be fine. Once they figure out what they're going to do, they'll do what they have to do and then I'll be okay.
Try to stay positive and hopeful. There are many on here (and I'm a newbie) that will tell you to stay positive. You will be okay. I'll keep you in my prayers..


Posts: 232
Joined: Apr 2003

Lil- Try to get some sleep! The imagined is often worse than the reality.

Each person tolerates chemotherapy differently and somethimes it takes a few times before you figure out how it affects you and to figure out the best ways to manage any side effects. Many of us have been on chemotherapy for quite some time, with quite tolerable or managable side effects. There are many medications to control side effects of nausea and diarrhea. After 10 mth of chemotherapy, I don't think I could make it as a hand model for jewelry, as my nails are not very classy looking :). Many of the drugs for colorectal cancer do not cause significant hair loss. My taste is a bit shot, but it still feels good to have a full stomach.

Best wishes,


kangatoo's picture
Posts: 2115
Joined: Feb 2004

Hiya again Jeff-I am probably in the same boat as you and Lil.You can read my profile guys if you wish. I too have further tests coming up on the 27th april and I can assure you that it ain't no fun playing the waiting game.
Probably the best news I had was that if they don't find anysecondaries then in 5 years I "might" get an almost all clear--if after 7 years no secondaries they will tell me to piss off---
Of course it is the waiting that worries--I guess we are all in that ballpark.
Hey Lil--see if your onc. can give you some "light" sedatives.
I just completed 6 months of chemo(5fu/leuc) and had sedatives handy for the really bad nights.You can't improve without the sleep Lil and a mild sedative/anti-depressant sure goes a long way to releave the tension.
None of us can be expected to take this news well but we don't have a choice--and certainly it is hard on our spouses/family.
I really needed the drug assistance--many times I slept in another room so Jen could get her sleep--so she was able to go to work.
Jen has been my wonderfull angel all along--god knows what I would do without her.
You can both take whatever your onc. dishes out--it takes willpower to cope with any side effects--all of us know what you are feeling.
our luv n huggs n prayers
sending rainbows to you both----kanga n Jen

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