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#174385 11-22-2013 12:58 PM
Joined: Nov 2013
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"OCF Canuck"
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"OCF Canuck"
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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.


Ja 2013 tongue, red sore spot, r/r edge + white strip underneath, no pain
Al Bx on spot, strip, and vocal cords, lab rep benign
Oc 24 Surgeon follow-up, larger Bx req'd
Oc 25 Bx bits to Vanc. Cancer lab
No 14 MD said more ca investig'n req'd
No 19 Prince George CC, MRI & CT
No 20 PGCC Oncol says cancer
De 2 Vancouver Cancer Centre, PET/CT
De 31 VGH partial glossX + ex spot on vocal cords
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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



Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Joined: Oct 2013
Posts: 559
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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



Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

Joined: Nov 2013
Posts: 33
"OCF Canuck"
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"OCF Canuck"
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Joined: Nov 2013
Posts: 33
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.


Ja 2013 tongue, red sore spot, r/r edge + white strip underneath, no pain
Al Bx on spot, strip, and vocal cords, lab rep benign
Oc 24 Surgeon follow-up, larger Bx req'd
Oc 25 Bx bits to Vanc. Cancer lab
No 14 MD said more ca investig'n req'd
No 19 Prince George CC, MRI & CT
No 20 PGCC Oncol says cancer
De 2 Vancouver Cancer Centre, PET/CT
De 31 VGH partial glossX + ex spot on vocal cords
Joined: Nov 2013
Posts: 33
"OCF Canuck"
Contributing Member (25+ posts)
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"OCF Canuck"
Contributing Member (25+ posts)

Joined: Nov 2013
Posts: 33
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?


Ja 2013 tongue, red sore spot, r/r edge + white strip underneath, no pain
Al Bx on spot, strip, and vocal cords, lab rep benign
Oc 24 Surgeon follow-up, larger Bx req'd
Oc 25 Bx bits to Vanc. Cancer lab
No 14 MD said more ca investig'n req'd
No 19 Prince George CC, MRI & CT
No 20 PGCC Oncol says cancer
De 2 Vancouver Cancer Centre, PET/CT
De 31 VGH partial glossX + ex spot on vocal cords
Joined: Jan 2013
Posts: 1,291
Likes: 1
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[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


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Joined: Sep 2012
Posts: 381
"OCF Canuck"
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"OCF Canuck"
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Joined: Sep 2012
Posts: 381
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!


Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
Joined: Jul 2012
Posts: 3,267
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Good luck with everything.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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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.

Last edited by n74tg; 11-23-2013 07:18 AM.

Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
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Posts: 5,260
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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.

Last edited by Cheryld; 11-23-2013 07:38 AM.

Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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