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

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.

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.

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

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.

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))

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.

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 )

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

Thanks Tom, wilco...

DSD

Welcome friend! (Waving to you from Virginia and calling you late to dinner! Bahahaha sorry I couldn't resist! ⚜⚜⚜
Dear DeepSeaDan,

Initially, the waiting is the hardest part of this journey. My family took me to the beach for vacation. I reluctantly agreed and I was in a fog the entire time. I layed in bed a lot and it was during that week that I joined OCF. I spent most of my time reading posts and my favorite was: "I wish I would've known."

Then the phone call came and I knew my life would never be the same. I had cancer. Telling my sons was so hard but I made light of it and reassured them I was going to fine I think I even said "I got this!" Internally I wasn't sure but knew I had to remain steadfast as I didn't want to worry them. I was strong in front of my children and family. Heck, they really believe I'm some kind of a warrior. 😳

Behind closed doors I was scared out of my mind and I really felt alone. But when you come in here you are not alone. Everyone reaches out to you, no one makes you feel bad about asking questions or expressing your feelings. This may sound odd but it gave me great comfort joining this group. I wasn't alone anymore and with people just like me. 😉

Hey Tink222, thank you for sharing your story.

Well, things are progressing for me. My cancer has been confirmed through biopsy, but I'm still waiting to see if it's HPV/P16 in origin. That is one of two things that keep me awake at night ( used Larazapam last night & it got me through the night without interruption ). The other worry I have is the existence of three small nodules in my right lungs, and a 3-4" mass in my liver. These anomalies were found during a thoracic Cat Scan that I requested be done. I was told I am Stage 3, due to the cancer spreading to a regional lymph node in my neck; now I'm concerned the cancer has spread to my lung and liver. My medical specialists have given me other reasons for the existence of these anomalies in my organs, and I'm trying to remain optimistic that the MRI on my liver that I'm scheduled for will prove that mass to be something benign. They said they would monitor the lung nodules on an ongoing basis, but no specific / immediate investigation of those anomalies is scheduled.
So...my E.N.T. has referred me to an Oral Surgeon at Princess Margaret Hospital in Toronto. That day I will meet all the wonderful folks who will do their best to treat my ills. In the meantime, it's "hurry up & wait" once again...

Warm Regards,
DSD

DSD, I'm sorry about your diagnosis. It's for the best that you have a referral to PMH. When my husband was diagnosed, we were told by the ENT at Mount Sinai Hospital that the provincial government had set a timeline of six weeks for the patient to get in to see the oncologist. So, it's likely that you will have to wait a bit but it's standard. My husband never had surgery, so I can't speak to that. However, there are a few things you can set up if you are waiting.

The only department at PMH which gave me a lot of frustration was the pharmacy. There's a wait of at least an hour from the time you bring them the prescription to when you can pick up the meds. It may seem like nothing on paper, but when you are not feeling your best, having to wait for an hour can be quite difficult. I have found that most of the meds my husband eventually ended up having to take were available from Shoppers. However, since they don't keep a lot of meds in stock, you will have to expect to pick up your meds the next day. I have a very good relationship with the pharmacists at my local Shoppers and they gave me a tremendous amount of support. So, that's maybe one thing you can consider. You may want to go in and talk to your pharmacist and let them know what is happening and make sure they will keep track for you. They will talk to the doctors at PMH and the doctors at PMH will talk to the pharmacists at Shoppers. That's important to know. If you are a senior, a lot of the meds will be covered by OHIP (the only exception is narcotics/pain meds). I was surprised to find that even the anti-coagulation injection which cost over a thousand dollars a month was covered. Another thing is to find out if you have a Shoppers Home Health near you. They carry a lot of stuff such as non-stick dressing, etc. which you can't find in a regular Shoppers.

There is parking at PMH across the street. It used to cost $20.- the daily maximum. However, if you get in before 9 a.m., then the daily maximum would be $13. I used to get the first appointment as much as I could and we would be out by 10 a.m. (We also beat the traffic that way.)

If you live outside the GTA, you can find out from the oncologist if you can stay at the Lodge. You only need to pay for the food but there is no nursing care and you will have to be able to give yourself the meds. The hotels around the hospital also have "medical rates." The last time I inquired, it was $130 or thereabouts a night. Some people I know would travel down the day before, stay at a hotel for a night, go in the morning for their appointment and then go home. 'Medical rates" have to be signed off by the hospital but they have a department of social workers that do that. Look up the PMH website, there's a lot of useful and practical information on it.

If you need CCAC (Community Care Access) support after surgery, at PMH there is a CCAC office and they will take of the application and liaise with your local CCAC.

You will ilikely find that your family doctor can give you a lot of support. The oncologists take care of cancer treatment, but you may experience other discomforts after surgery and you may not have an appointment to go in a see your oncologist for a month. That's when your family doctor can help. So, please may sure you keep him/her in the loop and make sure he has copies of pathology reports, etc.

I know it's going to be hard waiting to see the surgeon and it's scary. My husband was diagnosed as Stage 4, so I've been there. What you may want to do now is to do whatever you enjoy the most so you can pass the time with some pleasure. Go and eat all the food you enjoy as treatment may mean taste changes or your ability to swallow may be temporarily compromised. Doing what you like to do sure beats sitting at home and agonizing about what may or may not happen, if you know what I mean.

If you have questions, please do ask. A lot of members here have had surgery, they will probably be able to answer your questions about that. You are welcome to PM me or you can post on the board and I will be looking out for your posts.

Hey GMCraft,

Thank you so much for all that information. My initial consultation is this Tuesday. I'm about :45 from PMH in reasonable traffic ( does that exist anymore?! ). I'd prefer to come home as much as possible, though fighting traffic may sway my enthusiasm. I've been told my treatment will likely be 5 days/week, for 6-7 weeks, being primarily radiation, with 4 or 5 bouts of chemo tossed in for good measure. I suspect that will change if they need to biopsy whatever is in my liver. I'll report back here post-visit with all the news that's fit to print.

Thanks again for helping me.

Regards,
DSD

We drove almost 3 hours for treatment but still loved that we could sleep at home most of the time and be with our support system here.

Hello again,

Had my initial consult with my RTO, Dr. John Waldron, and the news was pretty good, all things considered:

> My case wasn't "too far advanced / was detected fairly early"
> The mass in my liver is a benign Hemangioma, and of no consequence
> The nodes ( 3 ), in my right lung, were very small ( too small to biopsy ), were not immediately an issue, and would be reassessed in 3 months.
> My oral cancer is P16 positive
> I may be a candidate / have the option of, having RT only, to try & minimize local toxicity, and the Tx. schedule might be reduced to 6 weeks instead of 7, by having more "double-dose" days.
> At this point, it appears I will be receiving RT to my left side only, sparing the right side any direct exposure to RT.

Dr. Waldron told me of a study ( NRG-HN002, which had "just closed" ) he was involved with, designed to compare the efficacy of RT only vs. RT/Chemo traditional therapy ( http://www.uhn.ca/PrincessMargaret/...ments/ConneXions_2015_issue2_volume6.pdf ). Thus I have a big decision to make in the near future, after all consultation is complete, regarding my receiving RT / Chemotherapy, or RT only. Any thoughts on this issue? It is certainly keeping me up at night! I have still to consult with my Medical Oncologist on this issue. The idea of reducing local toxicity is very attractive, though the fear of "not getting it all" weighs heavy on me.

> My dental exam went well, with no need for extraction(s).
> My hearing was examined.

I'm back tomorrow for mask fitting, with the hope of beginning treatment in the first week of September.

We are leaning towards staying at "The Lodge" ( a local, HCN-sponsored housing facility for cancer patients ), as our commute times thus far have averaged 3.5 - 4 hours daily.

Regards,
Dan

Dan.

Just a fact for you to keep in mind. John had bullae on his lungs (air sacs) which alarmed the RO but John was a diver too and when I brought that up, the MO thought it was a reasonable assumption.

If you are getting double doses on a day, you will need several hours of rest time in between doses, you can rest in the Radiation Care Centre. The Lodge is a good idea, and a shuttle will take you to the hospital for treatment and back. They also used to pay the cab fares if you he shuttle is not available, but I don't know if they still do that. The chemo is largely a radiation sensitizer. John only got two doses of the three, because he developed deep veined thrombosis. The MO said it would not make any difference to the outcome. Some members on this forum also didn't get the third dose for various reasons. That will be a factor you may want to consider when making your decision. The chemo also can wipe out the stray cancer cells. Do talk to your MO about that.

Thank you gmcraft!