Posted By: Carpe Diem New rider on the bus. - 11-22-2013 07:58 PM
Hi, this is my first post. This whole subject is new to me. In the spring of 2013 I had a couple spots biopsied. The local lab said they were benign, so I enjoyed a summer of good sleep and denial.

At my October follow up visit, my biopsy surgeon looked at me seriously. Then he said if it were his tongue, he would not wait until spring to get it checked, as was my choice. The next day he cut some larger chunks out.

I was also sent to the new Cancer Clinic in Prince George this week. They are not saying "pre-cancer anymore. Now I wait.
Posted By: donfoo Re: New rider on the bus. - 11-22-2013 08:34 PM
From your description it seems the doctors feel you have cancer. So sorry if that is the case. If you post a bit more about the diagnosis that would help us all here to better understand and offer better responses.

Meanwhile, waiting is very hard. The not knowing and being in the dark is unsettling at best, terrifying at worst.

Just what did the folks in PG offer you in terms of what is going on? Since the biopsy was done last month they must have the test reports back.

Hang in there and keep in touch here. Don

Posted By: n74tg Re: New rider on the bus. - 11-22-2013 10:58 PM
Hi Carp:
Welcome to the family. It's a big one, with lots of members who share your situation. You will get all the answers you need here.

It sounds like you are waiting on biopsy results. Perhaps the one thing you don't want to be doing right now is wondering/worrying over whether they are positive for cancer or negative. I know it's hard to do ,but try to go on and live your life to the fullest extent possible. Don't sit at home and fret over it. The answers will come in due time and then you will plan your next steps.

If you get your hopes up that you don't have cancer, then the results come back positive, you've set yourself up for a downer and maybe some depression. One good friend here of the forum, username Bart has a phrase for it; don't attach to outcomes. To me it just means, wait and see, if I have cancer then I'll move on to the next part of the treatment journey. If not, then I won't. But either way, I'm not going to sit here and worry.

It has helped me sleep much better at night, and I was positive for cancer.

Again, welcome, stay in touch, we will help you through this journey.

Tony

Posted By: Carpe Diem Re: New rider on the bus. - 11-22-2013 11:03 PM
Hi Don. Thanks for the comments; you are thinking straight. The last biopsy was Oct.25 and the small town local lab apparently said OK. I guess my MD wasn't satisfied with that answer, in light of having had the same answer in the spring. I gather he pushed to get the samples to the proper cancer screening people. That is why he called on Nov. 14 to say things were going to accelerate. I saw the oncologists in PG on Wed. Nov.20. They only had my CT and MRI, done the previous day, so probably didn't want to say too much. PET on Dec 2/2013.
Posted By: Carpe Diem Re: New rider on the bus. - 11-22-2013 11:15 PM
Thanks for your advice Tony. The expression "s#%t happens" gets used lots in my business. Also Murphy's Law kicks in often; that b@st@rd shows up frequently. I'm selfemployed, so I hope to be too busy to worry about this.

I'm 59 and I've noticed many in this age range on people's posts. Perhaps it's just a function of demographics and the bell curve. I forget my university Sociology lessons. Any demographers here know which year is the largest baby boomer cohort?
Posted By: donfoo Re: New rider on the bus. - 11-23-2013 12:25 AM
[quote] I saw the oncologists in PG on Wed. Nov.20. They only had my CT and MRI, done the previous day, so probably didn't want to say too much. PET on Dec 2/2013. [/quote]
Are you leaving out parts? Did they take another biopsy on the 19th when you had the CT and MRI? If not then you still do not have nor will you have even after the PET of a confirmed cancer as the ONLY certain way is via a biopsy and you do not mention getting another done or at least I am reading this all wrong. Don
Posted By: tina77 Re: New rider on the bus. - 11-23-2013 01:34 PM
Welcome, from another Canuck. Waiting is the worst, although my ENT said it was cancer and the biopsy would just confirm (but had to be done), so I was stuck in waiting mode for confirmation of what we already knew, then waiting for booking the surgery.

The good news is there is still some hope that it might not be cancer, and if it is, it looks like it might have been caught early, which is a really good thing. My tumor (I called him Tom - it's easier to hate something with a name, lol) was very fast growing and in the 8 weeks from when the ENT first saw me, to when I had the surgery, it had grown from 3 cm to 5.

So, fast appointments, always best.

Good luck!
Posted By: PaulB Re: New rider on the bus. - 11-23-2013 01:36 PM
Good luck with everything.
Posted By: n74tg Re: New rider on the bus. - 11-23-2013 02:13 PM
Wow, giving your tumor a name, easier to hate someone with a name, what a novel idea. Now, who is worthy of being named after my tumor? Who would I wish that much grief on?

I can think of a certain person responsible for getting a lot of people's health insurance cancelled recently, but seems that would likely be a violation of our no politics on the forum policy. I could also just name him after that 535 member group of lawmakers who passed that legislation, also likely a policy violation.

My ex-wife, no I don't hate her at all. Ex-girlfriend, no don't hate her either. That worthless, spineless boss of mine who set me up for failure resulting in unfair termination from a good job ... we're getting close ... No, we've arrived ... Everyone meet Gary, my tumor.

Okay, Carp I have to write something important to you now so this post isn't completely hijacking your thread.

I spent a lovely 1985 winter working for the oil industry (Schlumberger)in Grande Prairie, AB, just across the border. We came into BC quite regularly, over to Revelstoke once and up the Alaska highway quite frequently, once almost all the way to the NW Territory. I've been to PG several times. What I remember most about Canadian winters is they give a new meaning to the word COLD. I've seen -65 C with no wind (and yes I had to work outdoors in that temp).

PG isn't a very big town. So, I'm kind of wondering about the expertise at the cancer center there. If memory serves you called it a new cancer center, so are they just getting their operation started?

The reason I ask is on this forum using Comprehensive Cancer Centers (CCC) is what gets pushed hard and recommended for everyone due to the nature of this type of cancer. What do you know about this cancer center in PG and it's doctors?

I'm certainly not trying to throw more on your plate to worry about, but if you turn out not to be satisfied with this place, what are your other options? Does Canada's medical system give you any other options?

take care, Tony

P.S. Christine, please be lenient.
Posted By: Cheryld Re: New rider on the bus. - 11-23-2013 02:36 PM
Hey carp... I'm a bit younger... And sadly there is a varying age range on oral tongue cancer we have members here who are and were in their teens at the time of dx. (You will find a lot of base of tongue cancers - different cause - usually HPV related - Are in their late 30's to 60's) If caught early and treated quickly it's curable. You have a top notch cancer canter in Vancouver, I would recommend seeking treatment there even if it's far for you... If your treatment facility doesn't have a pet then you need to be where you have the most options available to you. I'm Canadian - from the other side of the country. And all hospitals are not created equal. When I got my initial diagnosis they wanted to refer me within our local network - we have three hospitals that are considered a health partner group. One of them is considered a cancer center - I was pushed by a friend to seek treatment at Pmh in Toronto - which is the top cancer center in canada - and I'm really glad I did. A friend didn't and I could see the difference in care immediately with the way her treatment unfolded - not all cancer centers are created the same. A top cancer center will have clinical trials access to new technology, drugs and procedures - they are cutting edge. It sounds like your ENT is on the ball - which is great -hopefully your biopsy is negative. Beware my tumor was hidden under the surface of the tongue so the first biopsy I had came back negative, welcome.
Posted By: Tom O'Sullivan Re: New rider on the bus. - 11-23-2013 02:39 PM
Tina, could you change the name of a tumor to something else. LOL. Tom.
Posted By: Carpe Diem Re: New rider on the bus. - 11-23-2013 07:06 PM
Sorry Don if I am confusing you. I have changed my profile a bit. I had biopsies at two spots in the spring of 2013. Then in late October 2013, I had a larger biopsy on the upper spot.

At this point, the Vancouver Cancer Centre has had the October biopsy for about two weeks. I am unsure as to where the actual sample is.

On Nov 19 in Prince George, I had the CT and MRI (no biopsy). On Nov. 20th I met the oncologist at the PG Cancer Centre. He set up a PET scan in Vancouver for Dec 2,2013.
Posted By: donfoo Re: New rider on the bus. - 11-23-2013 07:50 PM
Thanks. So you have a solid diagnosis and now you are in the process of establishing your treatment options and they want to do more scans the get more details before finalizing your treatment. That is how it seems to me. Hang in there, the wait is a drag but take comfort that you are getting lots of eyes and brains on you case and will end up with the best treatment options. Don
Posted By: Carpe Diem Re: New rider on the bus. - 11-23-2013 07:57 PM
Thanks to tina77, PaulB, n74tg, Cheryld, and Tom O'Sullivan for replying. I have to get outside working as winter is advancing.

The Prince George(PG)Cancer Centre was brand new in November of 2012. It was built to serve the northern part of the Province of BC, and Yukon Territory. It has all new equipment. Google "How big is BC" for some comparison graphics. I live midway between PG and the Pacific Coast in a town of about 5000. PG has about 70,000. The Cancer Centre is adjacent to the hospital which is a teaching hospital attached to the University of Northern BC in PG.

The PET/CT scanner, however, is located in Vancouver BC. PG is a 4 1/2 hour drive each way for me. Vancouver then, is about 10 hours drive south of PG. So, my road time to Vancouver is almost 15 hours, or 1 1/2 hours on a droning turboprop Dash8 aircraft. We get used to waiting for things in this part of North America. The BC people further north of me have things even worse, not to mention folks in the Yukon and Alaska.

n74tg, as for options outside the Canadian medical system, I know they exist, if you can pay. Domestically there are huge legal battles whenever someone tries to start a private clinic outside the gov't system. As a Poli-Sci major, I will leave it there. In order to say more, I would have to know much more about how the Cdn system works. A better understanding of the US, and several other nations' systems, would also be helpful for any informed discussion.

I hope this makes my geographical situation more relevent to the timelines I posted. Thanks again everone.
Posted By: n74tg Re: New rider on the bus. - 11-24-2013 09:57 AM
Hello Carp:

Yes, the other thing I remember about working in Canada, was everything was a long, long drive away. Grande Prairie to Revelstoke was like a 12 hour drive.

Ain't life grande.
Posted By: ChristineB Re: New rider on the bus. - 11-24-2013 01:29 PM
Ive been reading this over the past couple days and have not posted yet. I was unsure of your diagnosis so didnt comment. If I am understanding your posts, currently you have not yet diagnosed with OC. After a couple more tests you are expecting to get your diagnosis. Is this correct?

Let me at least say welcome to OCF. If you are diagnosed with OC then Im certain we will be able to assist you. Until that time, live it up and try to stay busy. Waiting is the worst!

Good luck!
Posted By: tina77 Re: New rider on the bus. - 11-27-2013 12:57 PM
[quote=Tom O'Sullivan]Tina, could you change the name of a tumor to something else. LOL. Tom. [/quote]

Sorry Tom - the name fit "Tom the tumor" - for some reason it had to be a man, and it had no "r" or "s" involved, lol!
Posted By: Cheryld Re: New rider on the bus. - 11-27-2013 05:57 PM
Tina too funnny!!!!

Tom I appreciate the distance.. I'm Canadian... I totally get it. I am however blessed enough to be close to Toronto and Princess Margaret Hospital. If you ever do decide to get treatment in Vanc - be aware that there is likely a hope lodge you can stay at during your treatment - most people spend 5 days a week there and head home on weekends though I think you could just stay the whole time if need be. Don't let distance be a determining factor - your survival is more important. And damn you must be COLD!!!! Brrrr... hugs.
Posted By: Carpe Diem Re: New rider on the bus. - 12-04-2013 03:19 AM
Thanks to all who have responded to my introduction. Please do not add anymore to this as I am going to start a thread over on Currently in Treatment.

Carpe Diem
Posted By: Carpe Diem Re: New rider on the bus. - 01-09-2014 06:32 PM
Greetings to the newbies here. I am sorry you are here, if you indeed have OC, but on the other hand this is probably the best place to get info from people who truly know what they are talking about.

I am bumping this to the top to let folks know my future posts will be on "Currently in Treatment." I hope to be able to contribute by making suggestions about some of the more mundane issues newbies face, such as approaching the board, food, surgery logistics etc. Good luck.
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