Joining this family is a bit like picking your parents. You can't; it doesn't work that way. So here I am, like it or not.

I just spent over an hour struggling to write some semblance of a new, comprehendable, signature in less than 500 characters. It's 493, so don't bother counting unless you are really bored!

Things have moved along. Yesterday, in Vancouver, I became radioactive for the F-FDG PET/CT scan. Later we met with the surgeon who plans a partial glossectomy and removal of some throat bits. I also signed up for a blue light procedure that is supposed to allow the surgeon to see the margins when cutting. Anybody had this?

Yes my dr pioneered it at Pmh he also teaches it to international fellows. It is meant to cutdown the chances of recurrence. Good luck!

Thanks Cheryl. My surgery will be in Vanc. With luck I won't need chem. or rads. I asked about whether I am HPV+ or not, but they got on another subject. I will keep asking. It was a very rushed day with the PET at 11:00 AM, then the surgeon's interview at 2:30PM. A couple funny things transpired. We had to walk about 2 blocks from the PET building to the surgeon's carrying the CD of the scan. The surgeon didn't open it. He told me straight out that I had cancer spots and he was going to operate. No real team consultation, only an oncologist who said she will be at the table to do the blue light thing. Our impression was that the PET/CT was for use later and my diagnosis and treatment were decided by Vanc. and Prince George based on my biopsy, MRI, and CT scans done previously. More info: it is SCC and the MO said I am T1N0M0 to T2N0M0 at this time.

Hi Carpe:
Welcome to the next forum in your journey.

I'm a little worried that you mention there was no "real team consultation" on your case. It sounds like the surgeon is calling all the shots and even the oncologist is only along for the ride in providing the blue light service.

Do you know if this is the usual method used at this hospital in Vanc where one discipline over-rules the others or am I mis-understanding what you wrote?

As for the surgeon not even opening your scan results, I think it possible that the surgeon might have reviewed your scan if he had some time to prepare. But, you bringing it with you gave him no prep time. If he was very busy that day maybe he couldn't take the time to review it in your presence. If that is the case I'm hoping he at least reviews it later to better inform his knowledge of your case. If he never reviews it, then I would really be worried.

Please understand I am not trying to scare you by writing this, there are just a couple of things about what has gone on that somehow don't sit well after reading it. Maybe you need to ask some more questions. Maybe I'm the one who is reading this all wrong. I hope others jump in here and give their thoughts. We have some very informed Canuck members whom I'm hoping will comment.

Take care Carpe, we will get through this forum soon enough and move on into Post Treatment. I am so looking forward to the return of taste in food. I would kill right now for a cheeseburger and fries that I could actually taste.

Tony

The ENT will get a copy of PET report usually that day or the next, in my experiences, and if the hospital is associated with the place of the diagnostic scan, they can look at it in their system. I brought scans in myself from other hospitals, doctors, being I switched locations several times, some who looked at the scan briefly, in my presence, stating he will look further, and another that went to another area, not the exam room, to look at it where it may be set up for that purpose, but it takes time, experience, training to look at them unlike a CT which is more straight forward, and the diagnostic center has to write out the report with the findings, and their interpretation.

I had CT, MRI, FNAB, and a full body PET/CT was still ordered. This is to show any other involvement to distant areas, chest, locations outside the area previously scanned, and each are good for highlighting certain areas, and the PET can detect tumors as small as 5mm. I had one that was 3x7mm, which may not be detected by CT or MRI, which usually detects above 1cm.

I heard of the blue fluorescence, staining, being used during surgery.

I recall your tumor being on the back of your tongue, but could see or reach it. Not sure if this is the oral tongue or base of tongue. HPV-16 is 90% of the time in the oropharynx, tonsil, base of tongue. With a biopsy they can always test for that, and usually doesn't change treatment plans, outside of clinical trials, but being they are doing surgery first, it doesn't sound like oropharynx cancer, which usually involves Chemoradiation, it sounds like the oral tongue.

Good luck with everything.

Here in Canada we actually have electronic medical records. There are three ways of getting results. One on paper - which eventually finds its way there. Two, via phone - the dr. can call in for a preliminary. Three electronically. You can bet your dr. knew the score before you walked in. (I had my first CT at 11am - my family dr. had the written results by two that same day). All he or she had to do was pick up the phone or check his computer. It is the ENT/surgical oncologist who will be doing the blue light procedure. Often here you will have a dr. who runs point on everything. And frankly if you have non HPV related tongue cancer the first line of treatment is your ENT/Surgical oncologist - who will perform the surgery. Once that is done and pathology is back, he or she will send you on to rads and chemo. They may not have sat down and discussed what is going on in front of you... but they do consult between each other. There is a standard type of treatment for this particular cancer (oral tongue) so it sounds like you are on track. Technically the CT is meant to show the dr where to cut (and if there are mets), however with the blue light - the ct is merely a guideline since they will be seeing the cancer in real time.
My dr operated on my husband's cousin 20 for an unusual thyroid cancer. He looked at the ct and based on it said he would be removing her thyroid and 70 lymphnodes in the neck. He went in two weeks later and ended up removing 160, 90 were positive for cancer. The blue light really does make a difference.

good luck!!!

Thanks to Tony, PaulB and Cheryld. Cheryl I agree that my PET/CT could have been electronically sent to the surgeon as we were walking out the door.

As for the next topic, Cheryl, you may have to help me here so I don't get banned. My 59 years of experience with our socialized Canadian system is that you get in line, wait, be glad for your spot in line, wait, see the doctor, wait, see the specialist, wait, then get treated. I sense from our American friends here that they can go to another doctor for a second opinion. I presume they have to pay to do that. Now I know nothing about the American system, but here, in BC at least, we never pay at a doctor's office. We have a "Care Card" which is issued by the provincial government, which owns the hospitals, ambulances, equipment, and pays the salaries of everyone: surgeons, nurses, MDs, lab and Xray techs, clerks, janitors, ambulance attendants, etc. Partly our taxes pay for this; many unionized workers have payroll deductions and/or matching plans, and selfemployed folks like me are directly billed every three months. Nothing is free here, the costs are just more opaque. One rarely, at least here in the bush, hears of someone going for a second opinion. Maybe we just don't have the disposable income. This could, of course, go way off topic to Americans being able to income tax deduct their mortgages, a bone of contention in Canada. Let's not open that can of worms.

So I suppose that there might have been consultation among the two oncologists in Prince George and the surgeon and MO in Vancouver. The way our system is set up, these people can all be linked as if the whole province is one big hospital. Does this make sense?

PaulB, the PET/CT did not go below my waist.

In the spring I had a red sore spot on the top R/H edge of my tongue adjacent to my wisdom teeth (still have all four). There was also a white strip directly below that, on the underside. I also had a white spot above my vocal cords. The surgeon biopsied the red spot and the white spot.

In October the red spot and part of the white strip under my tongue were removed, sort of connecting the areas.

Now in November at PGCC they photographed a white spot on some flaps that I assume are above the vocal cords. If they are the vocal cords, then I am happy to only have one spot down my throat.

Now to further thicken the plot, VCC used some blue "vinegar" dye in my mouth and tell me that I have something developing on the front L/H underside of my tongue about an inch back from the tip.

There, I had to write this in hope of keeping track of all these things for me. Sorry if it's brain damage for you folks. Thanks for reading.

Hey there... I'm Canadian so yes I agree with what you've said re how our system works. Let me share a trick with you.. Push. You can most certainly ask for a second opinion, there are ways of jumping the system to move faster I've done it myself and done the same for my father in law,
If you want to see someone else then find the name of a dr. (Someone tops in their field - when my father in law was diagnosed in sept/Oct with esophageal cancer I told the referring dr I didn't want him treated locally. I found out the type of dr. he was going to be referred to and looked up the top thoracic cardiologist in Toronto. I asked my family dr. For a referral to her (she is affiliated with PMH here) I called her office gave them a heads up, and my dr sent the referral - she booked him in within a week and set him up for his ct the next day. Because of this he has gone through treatment and is two weeks out of rads already - they moved crazy fast because rather than being referred to the hospital /cancer center we were referred to a specific dr. (Minimal wait time - it's a bit like a back door) Plus I made a bit of a pain of myself by calling ahead to make sure they were organized getting him set up for things.
Make phone calls, ask to be put on waiting lists, and ask your dr. for a second opinion at a top hospital to a specific dr. (Most drs will refer only within their group of associates. If you request someone else specifically - this will get you to where you want to be - most people don't realize what you have access to.
I did the same thing with my dr. When I was diagnosed. Being proactive makes a big difference in your care. Also remember to be polite, instead if being demanding explain you're worried and just want to ... Get in as soon as possible - make sure you're making the right decision etc...
Most people simply do what their drs tell them without asking questions - knowledge is power. Hugs

Carpe, I agree with Cheryl. As a fellow Canuck, I did the same things. I saw initially a dentist, then a maxofacial surgeon, then 2 ENT's and did my research, ending up with the 2nd ENT "the guy" as my surgeon. Everyone I spoke to said he is the best, and he is. To his credit, the first ENT had also given me my surgeon's name, so I didn't run into the issue of referrals to colleagues. I think most doctors really do just want people to have the best care.

As Canadians, we have a reputation for being nice and accommodating, which is great for most things, but assuming you are in the best hands is not one of them. You may be, but put the time in to figure it out. Canadians spend more time shopping for winter tires than the right doctor, lol!