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#194965 - 08/10/17 04:02 PM Greetings and Salutations...  
Joined: Aug 2017
Posts: 21
DeepSeaDan Offline
"OCF Canuck"
DeepSeaDan  Offline
"OCF Canuck"
Member

Joined: Aug 2017
Posts: 21
Ontario
My name is Dan, though being a lifelong Diver, most call me DiverDan or DeepSeaDan ( I say call me anything but late for dinner! ). After a bit of clicking about, I found this Foundation, and it looked like an excellent resource, thus here I am. I reside in Ontario, and will likely ask for treatment at St. Margaret's in Toronto.
So...saw an E.N.T. 2 days ago, after having Ultrasound & CAT Scan imaging done. It only took the Doctor about :10 before he announced that I had Cancer. He took a 3-sample biopsy right then, and stated: "If this test comes back negative, I will immediately re-biopsy you, as I'm certain this lesion is cancerous ( says he sees about 1 patient a month with such a presentation ). His high degree of certainty has me leaning away from a second opinion - is that wise?
His pronouncement of my condition has, unsurprisingly, put me on the high-speed emotional roller-coaster. Lots of tears, self-pity, anger, self-recrimination ( I second-guessed my occasional problems with swallowing as being something else, and I trusted Google to send me to an opinion that suggested I wait a month before seeing my Doctor about a lump on my neck ). My best friend is battling Multiple Myeloma, and he was my first call. I am blessed with a strong, loving and caring wife. I have 2 adult children, and I dread talking to them about this more than anything. My Daughter in particular, as we are very close, and she is always worried I will contract cancer as a result of my career in Firefighting.
My test results should be back in about 10-12, very agonizing days ( is this not the single greatest source of stress & anxiety - this waiting?! ). I jumped the gun a bit by signing on here now, but the Doctor's certainty has sold me on my plight.
Like many, I suppose, I look at the immediate future as a time to "prepare for battle." Just righting those words lift's my spirits. I pan to wage total war on this enemy and surrender is not an option. Life is good, I have many people who count on me, and if it's a fight this pesky little virus ( Doctor is 85%-90% certain the tumour is viral in it's origin ) wants, then he/she is gonna get one, and then some!
Happy to entertain any suggestions, ideas etc. from the good folks here - all is very much appreciated.
Happiness & hope to all.

Warm Regards,
DeepSeaDan


Stage 3 HPV-16 Tonsilar Tumour with extension to 1 lymph node
Currently prepping for Treatment, which is starting Sept. 5th
#194966 - 08/10/17 11:57 PM Re: Greetings and Salutations... [Re: DeepSeaDan]  
Joined: Feb 2017
Posts: 66
sooner Offline
Supporting Member (50+ posts)
sooner  Offline
Supporting Member (50+ posts)

Joined: Feb 2017
Posts: 66
I am sorry you may be joining this "club" of which no one wants to be a member. Until you have a diagnosis, don't be consumed with the possibilities. Having said that I will admit that the minute I saw the enlarged node on my husbands neck I knew we were in for a battle I just did not know it would be BOT. The really good news is that even though the treatment is brutal, at least there is an effective treatment for many HNC patients. My husband is through treatment and has been able to return to work, he is talking again and looking forward to fun events with family and friends. So, don't despair no matter what the outcome of your testing, you can have good times again.


Wife to DP. DX SCC BOT 1/31/17
First treatment 2/27/2017 Cisplatin 3 times and IMRT
Last treatment 4/18/2017
Clear PET 7/13/2017
PEG removed 8/4/2017
#194967 - 08/10/17 11:59 PM Re: Greetings and Salutations... [Re: DeepSeaDan]  
Joined: Jun 2007
Posts: 9,716
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,716
PA
Welcome to OCF, Dan!!! Im very sorry you may have a need to join our family. I really hope the doc is wrong and your biopsy is negative. Im very glad to see your doc is being so proactive. We dont always see patients who have docs like that. Even so, you still should seek out a second opinion. If the doc sees one patient a month who appears similar to you, that isnt very many. My ENT sees several OC patients/survivors every single day. Im sure the doc is trying to be helpful by telling you about their "hunch" but only thru a biopsy can they know for certain exactly what the sore is. I dont know of anyone who can tell by looking. They can guess but they really dont know for certain until the biopsy comes back with the pathologists report. Of course, the medical pros are speaking from years of experience seeing similar sores and they have years of medical schooling behind their "educated guesses". But they still depend on the pathologist to examine the biopsy sample under a microscope then write their findings down. Around here we have a few sayings... "Its just a spot until the biopsy says its not." Ive had several scares where I really was convinced I was having a recurrence (again) when it turned out to be nothing serious. Many many others here have gone thru the same thing too. Im hoping you will be another person who has "just a spot" that is nothing serious. If it would be cancerous then you are in the very best place to get info and support to help you get thru whatever you have ahead of you.

Best wishes with your biopsy!!!!! I know the waiting stinks!!! With your positive attitude, that will help you get thru whatever the results will be. Please keep us posted how you make out.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
#194969 - 08/11/17 12:57 AM Re: Greetings and Salutations... [Re: DeepSeaDan]  
Joined: Aug 2017
Posts: 21
DeepSeaDan Offline
"OCF Canuck"
DeepSeaDan  Offline
"OCF Canuck"
Member

Joined: Aug 2017
Posts: 21
Ontario
Thank you so much for your responses. I reckon I'll wait to see what this biopsy says before pursuing a second opinion. Should I need to find another opinion, can you advise me on how best to find an excellent...E.N.T.? Or should I see another type of Oral Cancer specialist? My G.P. referred me to the current fellow, and he is local to me. Should I look to a big urban center like Toronto? If I do, what resources are there to assist one in finding the right Doctor?

Thanks again!

Best,
Dan


Stage 3 HPV-16 Tonsilar Tumour with extension to 1 lymph node
Currently prepping for Treatment, which is starting Sept. 5th
#194971 - 08/11/17 01:45 PM Re: Greetings and Salutations... [Re: DeepSeaDan]  
Joined: Jun 2007
Posts: 9,716
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,716
PA
Being in Canada, your medical system works differently than ours in the US. Here we have whats called Comprehensive Cancer Centers (CCC's). Those facilities are the biggest and best cancer treatment facilities. The physicians are top notch as the CCCs attract and retain only the brightest doctors and staff. Theres also studies proving patients treated at CCC's have better outcomes with less recurrences. Look for an ENT who specializes in treating oral cancer patients. You do not want to end up with the type of ENT who mainly puts tubes in childrens ears or rarely deals with OC.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
#194972 - 08/11/17 02:09 PM Re: Greetings and Salutations... [Re: DeepSeaDan]  
Joined: Feb 2015
Posts: 14
tlc356 Offline
Member
tlc356  Offline
Member

Joined: Feb 2015
Posts: 14
East Coast
Oh yes I strongly suggest that you want to go to a place that specializes cancer and has lots of oral cancer experience. A quick search leads to: http://www.uhn.ca/PrincessMargaret/...axillofacial_Prosthetics/Pages/team.aspx

I'm sure there are more that you'll quickly find. Would you take your deep sea regulator to a less experienced shop for even, lets say, calibration? Tom (my diving days are behind me but I'll bet your's are not))


SCC stage 1 Nov. '03, SCC stage 2 (clear mrg, no rad, no chemo) RND, Feb. '15

TLC356
#194973 - 08/11/17 03:09 PM Re: Greetings and Salutations... [Re: DeepSeaDan]  
Joined: Oct 2012
Posts: 864
gmcraft Offline
"OCF Canuck"
gmcraft  Offline
"OCF Canuck"
"Above & Beyond" Member (500+ posts)

Joined: Oct 2012
Posts: 864
Toronto, Canada
Princess Margaret Hospital in Toronto is a CCC. It is the best in Canada. It's also part of the University Health Network so patients have access to other specialists if the need should arise.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
#194974 - 08/11/17 05:01 PM Re: Greetings and Salutations... [Re: DeepSeaDan]  
Joined: Aug 2017
Posts: 21
DeepSeaDan Offline
"OCF Canuck"
DeepSeaDan  Offline
"OCF Canuck"
Member

Joined: Aug 2017
Posts: 21
Ontario
Princess Margaret it is then - thank you gmcraft.
So, about this 2nd opinion idea, here's my ponderance - if I have a sizeable lump in my neck, how can it not be Cancer? And likely Stage 3 at that. I have a lesion/anomaly in my throat, in relative proximity to the lump area of my neck. Are there other reasons/conditions that are benign that could present like this?

Thank you...

DSD
( DeepSeaDan )


Stage 3 HPV-16 Tonsilar Tumour with extension to 1 lymph node
Currently prepping for Treatment, which is starting Sept. 5th
#194977 - 08/11/17 10:33 PM Re: Greetings and Salutations... [Re: DeepSeaDan]  
Joined: Feb 2015
Posts: 14
tlc356 Offline
Member
tlc356  Offline
Member

Joined: Feb 2015
Posts: 14
East Coast
Don't worry about things too much until you have facts, the plan and your gut reaction to what you hear from and the people you meet at P M Hospital. Good luck. Tom


SCC stage 1 Nov. '03, SCC stage 2 (clear mrg, no rad, no chemo) RND, Feb. '15

TLC356
#194982 - 08/13/17 05:22 PM Re: Greetings and Salutations... [Re: tlc356]  
Joined: Aug 2017
Posts: 21
DeepSeaDan Offline
"OCF Canuck"
DeepSeaDan  Offline
"OCF Canuck"
Member

Joined: Aug 2017
Posts: 21
Ontario
Thanks Tom, wilco...

DSD


Stage 3 HPV-16 Tonsilar Tumour with extension to 1 lymph node
Currently prepping for Treatment, which is starting Sept. 5th
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