Colonoscopy yesterday - tumour found

[Thetoad]

Yes, very good advice. You are certainly not alone and will find this site very informative and sympathetic. My tumor was found with a CT scan and I was in theatre almost immediately as there was a complete blockage with about 4 litres of backed up stuff, with the resultant swelling and also a small perforation well away from the tumor. Why I am going into this detail, is because all seems ok 27 months later even though it was a major scare at the time. It's amazing what a good surgeon can achieve! So, very best wishes! Keep us posted...

[Jachut]

I waited over two weeks to see my surgeon - primarily because I was also referred to a general surgeon who I did go to see - and I decided quick smart that I wanted a colorectal surgeon. I couldnt get in to see the CR surgeon for two weeks after that. After that I had a week's wait to see the radiation oncologist (saw the oncologist in between) and a three and a half week wait to begin radiation - so it was six weeks for me until treatment started. It was HORRIBLE. I felt so so much better when treatment started and that would be my words of wisdom to anyone, hang in there, the initial anxiety is just truly awful but it does subside and you do get to a point where you've accepted it and are not sick with anxiety all the time. And my ultimate advice would be stay off google. None of those awful stats apply to YOU. The information may well be old. Many people that get CRC are older and die of other causes inside that five year window anyway. Just don't read it. I spent my time reading about life with a stoma - that I could control and come to terms with, and believe it or not, I googled wigs endlessly thinking I would lose my hair. I could also control how I dealt with that. It was actually comforting to focus on those things. I just didnt read ANYthing about rectal cancer, I relied totally on my team for information there (which is not in general like me, but the stuff on the net scared me senseless).

By the way, despite that long wait for treatment, nothing spread, I had a total response to radiation and I'm NED five and a half years later. So don't panic too much about a day here or there.

[Celeste51]

Firstly, yes...i understand about Superbowl Sunday and the fact that a lot of you weren't on here. I live in Toronto so got the full experience of Superbowl, although I am British. I live here now.
I have already got some good advice from you all and thank you so very much. It seems like the Colorectal surgeon is the way to go. The doctor who did the endoscopy recommended this general surgeon as apparently he is the best at laprascopic surgery (not sure if I spelt that right).
I do have some valium as I suffer from anxiety anyway, so have upped my dose from 2 to 3 a day.
I have an appointment with my G.P for Wednesday morning and will ask her about the General Surgeon or the Colorectal Surgeon and also other things.
I haven't had a CAT scan yet.
I have my husband coming with me and he is doing all the taking of notes, etc. Obviously he is in a state too, but keeping it together really well.
I am going to keep off other forums.
So good to have you all here in my corner.
I will try and respond to individual posts later when I have a bit more time.
Bless you all.

[Andrea1976]

PLEASE look if there is a large cancer center near your area. It DOES make a big difference. I finally went with the advise on this forum. And feel that I am in great hands!!! Please don't settle with your GI recommendations. Do your homework and look around. Good luck!!! I know you are scared. Try to take it day by day...

[O Stoma Mia]

I had a colonoscopy yesterday and a fairly large tumour was discovered and I am reeling.
I am being referred to a general surgeon and will have an appointment in 3 weeks.
Please help me not be so scared.

In the next three weeks, there are a few things you can do that can have an impact on your treatment plan and future prognosis. If you start working on these things, then you will begin to have an action plan in place, which, in turn, will help reduce your anxiety level.

1. Ask for a written copy of your colonoscopy report so that you can have it as reference, especially the part on the pathology report of the biopsy.
2. Find out exactly where the large tumor is located, because it makes a difference.
3. Ask what they are going to do about X-rays, CT scans or MRI's to check for possible spread to the liver or lungs.
4. Ask if they have enough information to establish a tentative TNM Staging level for you, and if so, what it is.
5. Try to find a board certified colorectal surgeon in your area in case you need surgery for cancer. This is important, especially if the large tumour is in the rectal area. (also, are you in Canada, and do they have a board certification registry there like they do in the US?)
6. Look into the suggestion already given about getting a prescription for Cimetidine (Tagamet) before surgery. Try to talk to surgeon about getting permission to do this because it might help prevent further spread of cancer.
7. Also, make sure that you get a good set of blood tests done before they start any treatment. You will need to have a set of baseline values for the major lab tests, including the CEA tumor marker, so that they can tell later on whether or not you are improving.
8. Read the prior post below so that over the next couple of weeks you can tell which of the four primary diagnosis groups (RC:MØ), (RC:M+), (CC:MØ), (CC:M+ ) you fall into with your initial diagnosis:
   http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=53422&p=422956#p422956
9. Also, when you get enough information together, you can create and update a signature so that others here can know where things stand from week to week
   How to add/edit your signature:
   http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52681&p=414489#p421597
   
   

[Celeste51]

Just want to thank you all for your support. Haven't figured out how to thank people individually yet, but I was sent a list of colorectal surgeons here in Toronto. Don't seem to be able to thank that person either. Need to find my way around this site when I am less stressed out.
Here is an update though. The General Surgeon who I wasn't supposed to be able to have an appointment with for 3 weeks has made an appointment for me for tomorrow afternoon - all moving very fast, head is spinning.
I will ask him about colorectal surgeon being a better option and hope he will tell me the truth.
The only thing I can say is that the doctor who did the colonoscopy on Friday and found the tumour said that this surgeon does many of these removals a day and is far better than most. I guess seeing as this is Canada and therefore paid by from Medicare an not a privately paid operation there is less reason to lie.
Anyway, will keep you updated and thanks again for being here for me. x

[Celeste51]

Thank you for all this advice.
I think I might have to copy and past it all and then pass it on to my husband as he is the one collating the data. My head is too all over the place to do anything like that right now.
It means so much to me to be supported like this.

[O Stoma Mia]

Colon Cancer Companion (Canada)
http://coloncancercanada.ca/wp-content/uploads/CCC_FULL_PDF_REV.pdf

[dianetavegia]

Why three weeks?
During this 'time of waiting', you should have a CT or PET scan because the surgeon will want that prior to surgery. My tumor was found on Jan. 2nd and removed on Jan. 7th.

I'm sorry for the bad news. It's been over 7 years for me with one recurrence 4 years ago.

I'd certainly ask for those tests which will check for spread and get the ball rolling.

Diane

[Celeste51]

I saw the surgeon yesterday. He is arranging for a CT scan and is going to do another colonoscopy on the 22nd Feb to put dye into the tumour. The surgery is scheduled for the 2nd March. He is doing this lapascopically (not sure how you spell it) he said in 99% of cases this is successful and much less stressful on the body. He thinks if all goes well I will only be in hospital for a couple of days. He will be removing part of the colon and reattaching it.
This morning I went to my own GP who did a lot of blood tests which she is forwarding to the surgeon.
I feel like I am on a runaway train right now but thankfully my husband is taking control of all this data that is being hurled at me and keeping on top of everything.
The hospital where I will have the procedure done is the first totally digital hospital in the whole of North America and is supposedly excellent - go Toronto!
Right now I am going to have a Valium and just try not to fret so much. I have to trust that I am in good hands. This surgeon is certainly very confident which is good.
Thanks everyone for being here for me.

[O Stoma Mia]

If you're in Canada, I think you can get a free printed copy of My Colon Cancer Companion patient journal just by asking for it. The link is here:

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

[Celeste51]

Thanks everyone.

[Delinda2]

Welcome to the group that no one wants to join. So glad that things are moving forward faster than originally thought. I can't Add much to the excellent advice you've already received, so I'll simply add my support and positive energy. Even though my journey began almost 2 years ago, I'm sort of where you are because a few days ago I was diagnosed with a new primary cancer. I'm still in shock - once was not enough??!! It's in a different part of the colon but my onc said it's a new one & better than having the original one spread. So, here I am, a 2 year vet, back to trying to educate myself & waiting for more tests and surgical consult. Take care & keep us informed. You won't always feel this way, I promise. Visit here often, it helps. XXOXO, Delinda

[Nik Colon]

about getting a prescription for Cimetidine (Tagamet) before surgery. Try to talk to surgeon about getting permission to do this because it might help prevent further spread of cancer.

I have seen this med mentioned many times on here, BUTT there are many interactions and things you have to avoid if using this which should be noted.

[rp1954]

about getting a prescription for Cimetidine (Tagamet) before surgery. Try to talk to surgeon about getting permission to do this because it might help prevent further spread of cancer.

I have seen this med mentioned many times on here, BUTT there are many interactions and things you have to avoid if using this which should be noted.

Potential interactions with Avastin or FORFIRI most commonly limit cimetidine, way after colon surgery. Presurgical cimetidine, and some of those Life Extension supplements, are the best chance colon patients that would otherwise recur, not to recur. I daresay cimetidine has made a crucial difference in even helping to stop stage IV spread too.

It is a good idea to to get some doctor's agreement about the cimetidine specific to (y)our case. Nowadays, if we have to choose between cimetidine and a med or a disagreeing, simply uninformed dr, that med or dr loses.