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Just diagnosed

mogath
Posts: 14
Joined: Apr 2004

I had a colonoscopy 3 weeks ago. It revealed a large "mass" in the cecum. A week later I was in the hospital having a Hemicolectomy. It revealed that one lymphnode was malignant. Everything else was fine. He called it a "carcinoid tumor" and also told me that all my other organs looked very healthy. I'm a 38 year old male and was just curious to know if anyone else has ever gone thru this. He also told me that he'd recommend that I have some sort of treatment. I have an appointment with an oncologist on Monday to discuss what should be done. I had the surgery March 31st and I got out of the hospital April 4th. If there is anyone out there that has had any similar experience to mine please write. I'm a bit nervous about all this. I seen the advertisement for this network on the tv and figured to give it a try. Thanks to any that reply.

Regards,
Jeff

4mykids
Posts: 33
Joined: Mar 2004

I am sorry to hear about your diagnosis, but you have come to the right place for support. I am new to this site, but I have found everyone very supportive and optimistic. I am 36 and I, too, had a hemicolectomy. I, however, did not have lymph node involvement so I do not know too much about that. Mine did spread to the liver, and we are still working on that. I am sure someone with lymph node involvement will respond with more specific experiences, but I wanted to welcome you here and wish you all the best. By staying positive and optimistic, you can get through whatever you may face along the way.

Thoughts and prayers are with you.

mogath
Posts: 14
Joined: Apr 2004

How are you feeling? I hope all is well. I have yet to undergo any type of treatment, but the hemicolectomy was successful. I took my first shower today in almost a week and a half. WOW!! Heheh!! Stinky stinky! I was doing the sponge bath thing, but you just can't get clean. I went to my surgeon yesterday and he removed the staples. The first words out of my mouth were, "When can I shower?" He put these little butterfly stitches in and said "Tomorrow" Ahhhh!!! Thank GOD for showers. It's really amazing what you take for granted until you are unable to do it.
Staying positive and keeping a stiff upper lip is probably what got me out of the hospital so fast along with tons of prayers, so I am grateful for that. Thanks very much for your support and I am here as well for you and anyone that needs to vent. This is a great place! Thanks again for the reply.

Regards,
Jeff

nanuk's picture
nanuk
Posts: 1363
Joined: Dec 2003

Obviously we are not doctors..but I had total mesorectal excision with clear margins and no lymph node involvement 3 yrs ago, and the surgeon recommended no adjuvant therapy, but then changed his mind and suggested chemo / radiation, which I did for about six weeks. I was clear for 3 yrs, and now have recurrent cc mets in the lungs..they
will probably err on the conserative side and suggest some treatment, because all it takes is one of those little microscopic buggers to spread..
Bud

mogath
Posts: 14
Joined: Apr 2004

I hope that you will be alright as well. Just have to remember to keep everything positive. Thats the ticket I think.
I am hoping that when I do get some sort of treatment, that it doesn't make me too sick. I know someone else that has it in their bladder and was getting treatment for it and it didn't make him sick at all. He has to go back for a second scope to make sure he's clean, but he says he feels fine, so I am hoping the best for him. Thanks very much for your reply. My prayers will be with you and anytime you want to vent or talk, I will be here. Thanks again and hang in there...

Regards,
Jeff

Sheepy's picture
Sheepy
Posts: 48
Joined: Nov 2003

Hi - your story looks EXACTLY the same as mine - I had a right hemicolectomy last August, age 38, one node involved, no other apparent problems.

I'm in the UK, but I think my treatment is pretty standard - I'm on a weekly injection of a chemotherapy drug called 5FU, with a small injection of Folinic Acid. I've had 23 of these, just 7 more to go.

This is known as adjuvant chemotherapy, being precautionary - involvement of only one lymph node appears to be significantly better than having more than four affected - and in my opinion it's better to have one node affected and undergo chemotherapy than to have none affected and not have further treatment - the argument being that it is possible to miss node involvement under the microscope, and it is not necessarily the case that cancer spreads first to the nodes.

What made you undergo a colonoscopy? Do you have family history of cancers, has anyone mentioned a genetic predisposition known as HNPCC? A caecal tumour, especially at your age, is strongly indicative of HNPCC. Family members with related cancers such as bladder, kidney, endometrium (womb lining) and gall bladder would all point to the same thing.

SpongeBob has this confirmed, and I'm waiting for confirmation of suspected HNPCC - if it's this, I'm told by my genetic counsellor that there is apparently a better prognosis.

I expect you'll be offered chemo - if it's anything like mine, it's unpleasant for a time but has only caused me to have one day off work a week - but the treatments available are diverse, so wait until you know what's being offered and then ask for people's experiences.

You're right to be nervous, but life is for living and you have a pretty good chance of surviving.

This soon after surgery you're probably not feeling too good yet - but I was over it pretty quickly, and my bowel habits have returned almost to normal.

Good luck!

mogath
Posts: 14
Joined: Apr 2004

Thanks for you very informative reply!
I started out with some indegestion. I NEVER had it before and my stomach had been burning quite a bit. So the doctor gave me some Prevacid and told me to take that. If it doesn't go away, he'll go take a look. Well, that didn't work so he sent me to another doctor for a pandoscopy (scope of the stomach) During the initial consultation, he asked me if I had colon cancer in my family. My grandmother had it. My father also had lung cancer and I just found out a few months ago that my uncle, my father's brother has bladder cancer.
Anyway, upon hearing that it was in my family, he gave me a rectal exam and did the smear on that little card that turns blue when you have blood in your stool. So he ordered both a colonoscopy and a pandenoscopy. The colonoscopy revealed 3 polyps. 2 were benign. The large mass was also biopsied. The pieces they took were also benign, but after the surgery it was confirmed that there was a "carcinoid" tumor that had a malignant node in it. That was all taken out. As far as the scope of my stomach, that revealed that it was just a bit red, nothing too bad.
I will mention HNPCC to the doctor when I go to see him on Monday.
I was up and moving around the day of the surgery. I REALLY had to go to the bathroom and I simply could NOT pee in a bottle laying down. So I managed to get up and go later on that same day. So I came thru the surgery really well. My bowel habits returned to normal as well very quickly. I was really surprised and so were a lot of other people that I made such a nice recovery from the surgery. My stomach is still a little sore, but last week at this time I was still in the hospital.
Thanks again very much for your reply. It is very appreciated.

Regards,
Jeff

StacyGleaso's picture
StacyGleaso
Posts: 1246
Joined: Mar 2003

Hi Jeff,

I was 33 when I was diagnosed. Normally a very healthy female with no family history. No real reason to think this could happen to me. Regardless, it did. I was a stage 4, as it also reached my liver. Today, though, I am happy to report that I am fine, going on 3 yrs since originally diagnosed. I had chemo and radiation prior to my surgery, and more chemo afterwards. Absolutely no side effects from chemo, and was fortunate enough to never miss a day of work from it either.

There are a lot of people here with wonderful success stories, so don't be discouraged by your diagnosis. You can e-mail people through this web site if you don't want to post a message, or want more information directly from anyone. Best advice I can give is to stay positive, you can get through this.

Keep us posted,

Stacy

mogath
Posts: 14
Joined: Apr 2004

Sorry to hear that it reached your liver, but MAN THATS GREAT that you've been fine for 3 yrs!! Thats fantastic!!! I am in the right place for support I guess. Hehehhe!! I was kind of flattened when they told me it was cancer, but I feel good and I am keeping a good attitude. They'll zap me up with what they have to do and then I'll be set! I am just so glad to hear of your good fortune. Thanks very much for sharing your encouragement!

Regards,
Jeff

jsabol's picture
jsabol
Posts: 1156
Joined: Dec 2003

Hi Jeff,
Sorry to hear that you will now be a member of our semi-colon club, but welcome. I had my baseline colonoscopy in Nov 03, 1 small (1 cm) polyp that was positive. Hemicolectomy in Dec, 4 nights in the hospital and good healing. The biopsy found 1 microscopically positive node (which hadn't shown up on CT scan)....so, off to chemo I've gone. My surgeon said she was glad they found one node, since it was my ticket to chemo and the chance to "blast any errant cells". On good days, I agree with her.
My weekly chemo is 5FU and leucovorin, 6 weeks on and 1 week off, which, by and large, I'm tolerating well. My main side effects are occasional diarhhea, skin problems, like sensitive, splitting finger tips and lips, but I'm back at my 4 day a week job, with a week off between my courses of chemo. I had an access port inserted after the first 6 weeks of chemo, since my viens got really sensitive after the infusions. I love not having to get stuck every week.
Hope this helps. I was really nervous about the chemo, but I'm halfway through and hanging in there. You will get through this, even if the shock takes time to wear off. Hang in there, Judy

mogath
Posts: 14
Joined: Apr 2004

Thanks for the encouraging words. It really helps!I found that very amusing about being in the "semi-colon" club. Hehehh!! Thats cool! My surgeon has discussed my case with the oncologist and he may do one of those "hep traps". I think thats what it's called. I am glad to hear that you're hanging in there. You're right, I will get thru this. If life was easy, it'd be too boring. Heheheh!! Thanks very much for your support and the welcome to the club! Heheh!! Take care and God bless...

Regards,
Jeff

kerry's picture
kerry
Posts: 1317
Joined: Jan 2003

Hi Jeff,

So sorry about your diagnosis, but I will have to agree with all the others, you have come to the right place. You'll find lots of support and information here. Just ask! We've all been through just about everything, we talk about everything and let each other vent our anger about this awful disease.

I was diagnosed 15 months ago. A colonoscopy found a large mass also in my cecum, and 2 nodes involved. No spread to other organs, thank goodness. I had my colonoscopy one day and had surgery the next. Began chemo approx. one month after surgery. I was on 5FU, Leukovorin and Camptosar for 6 months with varying degrees of side effects. You will find everyone responds to the treatment differently. My treatment was called "adjuvant" treatment, mainly an added insurance policy to kill any microscopic cells that might be roaming. I am feeling fine now and regaining my strength and believe me, I'm enjoying every day to its fullest.

You will be OK. You will some difficult days and you will have some good days. Keep us posted and we'll help you get through it. Also, you might want to read some of the personal web pages for colon cancer patients. They are informative and personalize us more.

Best of luck to you Jeff. You will be in our prayers.

Kerry

mogath
Posts: 14
Joined: Apr 2004

Thanks so much for the encouraging words. It really does help. I have been and will be enjoying every day to the fullest. Just a shame that it takes something like this to happen, but I consider what has happened to me to be a blessing. It has changed my life in ways I never thought. Hearing all the successful things that are going on is really encouraging. Thanks very much and I will also be holding you in my prayers as well. ALL of you!! Thanks again.

Regards,
Jeff

spongebob's picture
spongebob
Posts: 2600
Joined: Apr 2003

Ahoy, Jeff -

Welcome to the "Semi-colons"... you know, most clubs and fraternities have an initiation ritual - go on a midnight panty raid, run naked through the halftime festivities of a football game, get a tattooo, etc. We have a little bit tougher right of initiation as that scar running up your stomach will attest to. The good thing is that you're hanging with people who have all been there and we're alive to tell the tale. We're all here for you anytime you want to vent, ask, or tell. Glad to know you found us by way of the TV ads. I personally think this is a great place for info and cyber buddies.

Hang tough - you'll do great.

Best regards

- SpongBob

Sheepy's picture
Sheepy
Posts: 48
Joined: Nov 2003

SpongBob?
Too much rum?
Shippy

spongebob's picture
spongebob
Posts: 2600
Joined: Apr 2003

"Shippy" (now who else is sounding like they've had a nip or two here??)

Seriously, though, I must ask you - can there ever be too much rum, mate?

Cheers!

- SpunjBob (I'm not drunk - that's the Dutch spelling)

mogath
Posts: 14
Joined: Apr 2004

Heheheh, I laughed pretty good when I read this. It hurt a little as that scar is still a little tender, but it was funny. Hahah!! Thanks very much for the reply. To you and ALL that have replied. It means so much to see that there are real success stories out there. Thanks again and I'll be keeping in touch with all of you.

Regards,
Jeff

ron50's picture
ron50
Posts: 1261
Joined: Nov 2001

Hi Jeff, Good Luck with the treatment ,I'm sure you will be ok. I had a mass in the descending colon ,stage three with 6 nodes positive, they removed 14 inches of my colon and hit me with 48 sessions of 5FU and levamisol over a year,next jan will be the end of my seventh year and so far no signs of recurrance as a matter of fact my surgeon has told me that if it hasn't come back in five years that the tumour will not return or metastasize ,I just have to watch out for any new ones(polyps).. Good luck and keep on fighting,Ron.

2bhealed's picture
2bhealed
Posts: 2084
Joined: Dec 2001

You said a tattoo? I thought you said nose ring!! Man and I got my nose pierced for nuttin? Sheesh.

Lisa Rose's picture
Lisa Rose
Posts: 589
Joined: Mar 2003

Hi Jeff,

I was the big winner for positive lymph nodes , 10 in total. I had my surgery March 20,2002 so far everything is going fine. I know the days are difficult now, but they will get better.

Happy Easter!
Lisa

nbalantac
Posts: 29
Joined: Nov 2002

Hi Jeff,

Welcome aboard!. As you can see from the reply so far, you came to the right place and you are at the right place. I am an avid reader on this site and I should post more often. I was in the middle of my surgery exactly two years ago today (2:50pm PST) to remove about 14 inches of my colon after diagnosis of Stage III with 2 lymp nodes but later found out that it is only a scar tissue (non-cancerous). At the present, happy to share that I am considered cancer-free according to my trusted colorectatal surgeon. Am back to playing some of my favorite sports like tennis and soccer!.
Looking back now, like most of our friends here positive attitude and self talk helped me went through. Working in the Lab as a scientist and familiar with the known mechanism of action of the drugs that was prescribed helped me to prepared of whats to come. Each of us is unique so the side effects varies tremendously. I experienced fatigue, nausea, and loss of apetite during my treatment which are some of the known and common side effects of chemotherapy drugs and radiation regimen. Fortunately, there are available prescriptions available to combat nausea and your onc will have info. I took a lot ensure food supplements and continued to take my Multivitamins (my doctor left it up to me). Walking around a lot around the house without overdoing it increase and or maintain blood circulation seemed to helped me not feel tired all the time. And even though I completely lost my apetite, I kept eating anway, I needed to keep feeding my healthy cells to fight them bad ones!. To date, I have completely regain my apetite and enjoy one on the things that I love to do, eat!.
Again, the key for me was preparation and knowing that this too shall pass away.

Take care and again, welcome aboard!,
Noel

Lisa Rose's picture
Lisa Rose
Posts: 589
Joined: Mar 2003

Hi ron50,

Good to hear from you again. Even better to know that everything is still going great!!!

Happy Easter,
Lisa

grandma047's picture
grandma047
Posts: 381
Joined: Feb 2004

Hi Jeff, I am kinda new here too. The people here are great!!! I had colon cancer diagnosed in July, 2003. Stage II, no lymph nodes, no spread. No further tratments. I had a recurrence in Jan. 2004. I just finished 28 radiation treatments & 6 weeks of continuous 5FU through a port. I really didn't have bad side effects. The last two weeks have been the worse. I've had diarehea really bad and my skin burnt really bad. I've also been very tired. They have meds for all the side effects though. I will have surgery in 4-6 weeks to have colon resection again and the doctor says a permanent colostomy. I know hindsight is 20-20, but I wish that I had some treatment the first time, maybe I wouldn't be dealing with this. It would be a good thing to have sometype of treatment. That's just my opinion. Be sure and get a second opinion if they don't want to do any treatments. Good luck and I'm sure that everyone here will be a big help to you, as they have to me. If I can answer any questions, feel free and ask. . I'll say a prayer for you.

Love and prayers,Judy H(grandma047)

livin
Posts: 319
Joined: Jan 2003

Sorry to hear but you are now in good hands here. The Semi Colons are the best. They are here 24 hours a day and always willing to answer your questions no matter what. This is a support Group. I too were like you I usually just read the threads but if I need help they are always here. I became a member really in 2001 when I was dx with stage 3 2 pos. nodes after a bout with Breast Cancer. Please keep a Positve frame of mind no matter how rough things may get. You can beat this. We are all living proof here. Livin

kangatoo's picture
kangatoo
Posts: 2115
Joined: Feb 2004

Hiya Jeff from "down under"
Great to hear yu doin well after surgery mate--I was very similar except mine was on the left side(decending)--bout 1/3 colon removed----aww hell--maybe yu might like to read my profile mate.

Please excuse my ozzie lingo--took a while 4 some of the guys here to understand me slang.
I am guessing the onc. might want yu on some chemo to clean up any "rodent" cells lingerin.
I did 6 months of 5fu/Luc and as yu will find out here there are lots of regimes and side effects vary considerably.Let us all know what the onc. has in store--yu will get heaps of info and support mate!
Sure--is hard not to be worried and nervious but am sure you will rec. the best of care.

Hey guys---just thought--yu all wanna compare scar/wounds?
I'm gunna measure mine tonight just to biuld up some ammunition--he he!

Hey Jeff--all our best mate--kanga n Jen

KrisS
Posts: 232
Joined: Apr 2003

Hi Jeff- sorry you have had occasion to come here, but the people here are great. It is good to hear that surgery went well. Surgery to remove everything that they can is one of the biggest parts of treatment. As for chemotherapy, there are lots of medications that can lessen or eliminate the side effects of chemotherapy.

You say you have a carcinoid tumor. Most of us here including me have adenocarcinomas which are a bit different, so the concerns and treatment recommendations that your oncologist may discuss with you might differ from those most of us have recieved. I haven't had a chance to check if there is also a board on CSN for people with carcinoid tumors, but you might want to check, since carcinoid tumors can occur in other locations other than the colon. If your oncologist recommends chemotherapy, I believe 5- FU is used. Most of us have plenty of experience with this drug. There may be some other drugs that they mix in also for your particular tumor however. I have had 5-FU, as well as oxaliplatin, and CPT 11. I worked regularly through most all of it, with quite tolerable side effects. Here is hoping that your treatment goes smoothly and sucessfully.

Hang in there, and keep up the good spirits.

Best wishes,

Kris

mogath
Posts: 14
Joined: Apr 2004

I don't know that I'm sorry to be here or not. Sorry I got the disease, but not sorry I have been in contact with so many good people.
My oncologist told me that when they biopsied my tumor, it had properties of both carcinoid and adenocarcinoma. So what I have to do now is go to Roswell Cancer Institute with my CT scan and my slides and then I have to give urine and blood samples so they can see what they're dealing with. If carcinoid, no treatment because none is effective, but he told be that because it moves SO slow, none is really needed other than surgery. If carcinoma, then some I will assume they will treat with chemo. If combo of both, then chemo. So I have decided to put this in God's hands and whatever will be will be.
I am trying to stay positive as I have been told a LOT of the fight is in the mind. Mine seems pretty strong though at times I do talk to myself. I suppose it's a good sign that I'm not answering back, well, at least out LOUD anyway. Heheheh!! Thanks very much for the reply. Stay strong and stay well. God bless.

Regards,
Jeff

isletcell's picture
isletcell
Posts: 70
Joined: Mar 2004

Hi Jeff! Check out the carcinoid cancer foundation web site. This is an extremely rare cancer. if you follow my web page links it will tell you to find the worlds leading specialists.
You can contact me directly if you need names or want more info.

Good luck,
Jen

sprink71
Posts: 2
Joined: Apr 2004

I just finished Chemo & Rad. for rectal cancer. The C & R was the hardest experience of my life, but now that it is over I feel and look great. The C & R was worth the assurance that I did everything I could to prevent spread. If it comes back, I will then have the surgery. I think you are so wise to get other survivers opinion because I didn't and went into C & R without enough knowledge.I will pray that you will bounce back quickly.

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