CT Scan Clear! Surgery It Is!

Good news! The CT scan was clear -- no signs of any more cancer anywhere in my head, neck, or chest. Aunt Linda, Jeanette, and I just met with Dr. Irish and Dr. O'Sullivan and they agree that surgery is the best option. It likely won't be scheduled until after Christmas.

The question then became whether to have the tongue surgery only or to also have a neck dissection (to remove the lmyph nodes on the left side). Although the CT scan was clear, there is about a 20% chance there could be cancer cells on a microscopic level. The neck surgery would leave a significant scar, result in permanent numbness in that area of the neck, and possible loss of feeling in part of my lip.

Although it was tempting to say yes to the neck option as an all-out assualt on the cancer, I've decided against it. The 80% odds of a cancer-free neck are very good, and even if cancer does turn up down the road (I'll have another CT scan three months after the surgery, and then check ups every months in the year following), I can have the neck surgery at that time and it will be equally as effective if I have it now.

This is all great news. No six weeks of radiation therapy. No missing Christmas. No loss of taste buds. Who knew three weeks of pain recovering from tongue surgery could sound so appealing?

Responsible Wish Fulfilment

It was a sunny, unseasonably warm November day here in Toronto, so my "little brother" Alfredo and I took the soccer ball to the park for a little one-on-one. Over post-game pizza (he trounced me 12 goals to 6) he had lots of questions about cancer and my treatment options (he's been following the blog -- hi, Alfredo!). After I attempted to explain all the complicated factors involved, he decided that what the world needs is a wish machine. However, if the greedy attempt to take advantage by wishing for, say, $1 million when they don't need it, the machine responds with "not approved." If you wish to cure cancer, it replies "approved" and carries out the wish.

An excellent idea, I say. Can someone get busy inventing such a device, please?

MRI FYI

Having not heard back from my case nurse, Margaret Tiberio, I reached her voice mail earlier this afternoon and left her a friendly reminder that I'm waiting to hear if I need an MRI. I've come home to find two messages from her on the machine, one to say that she would check with Dr. O'Sullivan on Monday (he's been out of town) and the second to say that she's reviewed the notes in my file and she's sure that what they've done is adequate; she doesn't recall when a CT head and neck scan and an MRI have both been performed on a patient. She said I should call Dr. Irish's office on Monday if I wish to dispute this.

I'm going to trust that she knows whereof she speaks, though I will certainly ask the good doctors about it at our big appointment on Wednesday, Nov. 29.

Easy Does It

An easy appointment today, but first, a joke, courtesy of my co-worker Heather (this could replace Aunt Linda's infamous duck joke):


A woman brought a very limp duck into a veterinary surgeon. As she lay her pet on the table, the vet pulled out his stethoscope and listened to the bird's chest. After a moment or two, the vet shook his head sadly and said,"I'm so sorry, your duck Cuddles has passed away."

The distressed owner wailed, "Are you sure?"

"Yes, I am sure. The duck is dead," he replied.

"How can you be so sure?" she protested. "I mean, you haven't done any testing on him or anything. He might just be in a coma or something. Isn't there something else you can do?"

The vet rolled his eyes, turned around and left the room and returned a few moments later with a black Labrador Retriever. As the duck's owner looked on in amazement, the dog stood on his hind legs, put his front paws on the examination table and sniffed the duck from top to bottom. He then looked at the vet with sad eyes and shook his head.

The vet patted the dog and took it out and returned a few moments later with a cat. The cat jumped up on the table and also sniffed delicately at the bird from head to foot. The cat sat back on its haunches, shook its head, meowed softly and strolled out of the room.

The vet looked at the woman and said, "I'm sorry, but as I had said, this is most definitely, 100% certifiably, a dead duck." Then the vet turned to his computer terminal, hit a few keys and produced a bill, which he handed to the woman.

The duck's owner, still in shock, took the bill."$150.00 !!!" she exclaimed. "$150.00 just to tell me my duck is dead???"

The vet shrugged, "I'm sorry. If you'd taken my word for it, the bill would have been $20.00, but with the Lab Report and the Cat Scan, it's now $150.00."


Today was my CT scan (changed from CAT scan in the mid 1990s according to my CT technician). Nothing exciting to report -- this diagnostic scan was basically the same as the CT planning scan (see Nov. 15 post) but without the mask (got another flashy robe, though). Dr. Irish and Dr. O'Sullivan will review the results with us on Nov. 29.

After the CT scan, Jeanette and I stopped by the Head and Neck clinic to inquire about getting an MRI. My case nurse will call us back tomorrow to let us know.

The Dentist Weighs In

This afternoon Jeanette and I met with Dr. Linda Lee (what? no connection to Ireland?) in the Oral Medicine and Pathology department at Princess Margaret Hospital. We were expecting a simple examination and review of the teeth-cleaning procedures to counteract the radiation side effects. We got that, plus much more.

Dr. Lee gave us a comprehensive week-by-week breakdown of what to expect from the radiation treatment. Here it is, in a nutshell:

Week 1:

• skin in treatment area turns red.

Week 2:

• loss of facial hair in treatment area,
• open sores form in mouth,
• sore throat,
• taste is altered or lost,
• salivary gland is damaged resulting in thickened saliva,
• eating becomes difficult (meet with nutritionist to review caloric intake options).

Week 3:

• mouth and throat pain at its worst (painkillers subscribed to help with sleeping and eating),
• fatigue.

Week 4:

• mouth and throat pain plateaus (eating becomes slightly easier from developed coping strategies),
• fatigue.

Weeks 5 & 6:

• mouth and throat pain still plateaued,
• fatigue.

Weeks following treatment:

• pain and fatigue start to fade,
• taste begins to return.

Permanent side effects:

• some facial hair loss,
• right-side salivary gland damaged.

This last point is significant. In addition to requiring daily (5 minute) fluoride treatments for the rest of my life, the decrease in saliva would make breaking down food more difficult -- this means more chewing and always having a drink when eating chocolate. Also, the gums on my lower right side will lose some of their ability to heal -- I'll need to avoid ever having those teeth extracted or else risk serious infection.

As Dr. Lee pointed out, these side effects are particularly significant in a patient my age, who will potentially have to live with them for decades to come. She also pointed out that radiation treatment cannot be repeated -- it's a one-shot deal. All this to say that radiation is not an option to be entered into lightly.

She was encouraged that surgery hadn't yet been ruled out. Since a treatment decision hasn't yet been made, she kindly decided not to create the $200.00 fluoride treatment moulds today. Once I've decided which route to go, I'll return for the moulds, either for use as fluoride trays or as a guide for re-aligning my bite if they need to cut my jaw druing surgery (Dr. Irish indicated this wouldn't be necessary).

Finally, Dr. Lee recommended that we ask Dr. Irish why I haven't been booked for an MRI. She said it provides the best imaging of the tongue for spotting any further cancer.

Tomorrow afternoon it's back to PMH for my diagnostic CT scan. I'll ask about any package deals with the MRI while I'm there.

Who Was that Masked Man?

Aunt Linda picked Jeanette and I up bright and early this morning for another visit to Princess Margaret Hospital. Today's missions: 1) the surgical consultation, and 2) the CT planning and creation of the immobilization mask in preparation for the radiation treatment.

1) The Surgical Consultation

The surgical consultation was with Dr. Jonathan Irish, Chief of Surgical Oncology at PMH:

But first I was examined by an associate of Dr. Irish's. I'm proud to say I survived this round of nasal-endoscope insertion without dizziness, though the administering doctor's lack of bedside manner provided its own level of discomfort.

Then we met Dr. Irish, who was much more pleasant and took the time to carefully review the surgical options with us. I wasn't entirely surprised when he recommended surgery over radiation treatment (he is chief of surgery, after all), albeit a simpler surgery than what was anticipated by Dr. O'Sullivan.

Dr. Irish is confident the at-risk area of the tongue can be removed without it needing to be rebuilt. After three or four weeks of healing, I would likely retain full use of my tongue, though there could be mild impact on my speech. Ideally he would like to have performed this surgery while the tumour was still in place; with it gone, determining the remaining area to excise is difficult to do as precisely. During the same surgery, he would likely stage my neck, but he wants to review the CT scan (which is still booked for Nov. 21) before deciding anything.

So, I'm back to square one: snip it or zap it? I'm still leaning towards radiation treatment for its reliability in eradicating the cancer, but the shorter recovery time of the surgery is tempting. In any case, I now have an appointment on Wednesday, Nov. 29 to meet with both Dr. Irish and Dr. O'Sullivan at the same time to review the CT scan and discuss the options. Hopefully that meeting will produce some definitive info for one treatment over the other.

2) CT Planning and Immobilization Mask

In the meantime, we're moving ahead with preparations for the radiation therapy. Today was the creation of the immobilization mask, used to ensure I'll always be in the same position when on the treatment table:


Not for the claustrophobic, the mask was made by placing a wet mesh of material over my face that quickly stiffened:

The technicians rubbed it with damp towles to make sure it snugly conformed to the contours of my face and neck. Once the mask was hard enough, they removed it and we went off to our appointment with Dr. Irish.

We returned an hour later when the mask was dry, and I took another turn on the table for the planning CT scan. With me buckled in place, the technicians used tape and markers on the mask to map out the areas where the radiation will be administered. They also gave me a tiny dot of a tattoo (I asked for a unicorn, but they only do dots) on my chest for future laser-guided positioning. Using an IV, they pumped me full of contrast dye, and then ran the CT scan over the target areas.

It was all finished in a matter of minutes, and while the pressure of the mask was a little intense, I was really quite comfortable.

Next up: back to PMH on the afternoon of Nov. 20 for a dental consultation. Until then, I leave with you this glamour shot of me in my hospital robe (I believe this was after they told me "Sir, you didn't have to remove your pants."):

Snip It or Zap It

Lots of information learned today, so let's get to it:

Jeanette, aunt Linda, and I met with radiation oncologist Dr. Brian O'Sullivan this morning. Although he was running late, he spent no less than 45 minutes with us examining me, reviewing the pathology report, explaining the treatment options, and answering our questions. We were all impressed with him -- and I'm not easily impressed by anyone who sticks a long nasal-endoscope up my nose and into my throat.


Once my dizziness had passed from that little adventure, Dr. O'Sullivan explained that his main concern was that the thickness of the tumour (6 mm) represented an "unacceptable risk" of the cancer traveling to the lymph nodes of my neck. Therefore, he insists that I undergo treatment both on my tongue and on my neck. It turns out, I have two treatment options: surgical or radiation.

The surgical option involves two procedures: 1) removing a chunk of the right side of my tongue and reconstructing it using tissue from my wrist, and 2) "staging" my neck, which means removing tissue most at risk of developing the cancer. According to Dr. O'Sullivan, the surgical route is less reliable than radiation therapy, and may in fact still require radiation therapy if the cancer reappears. The only side effect of the surgery would be a scar on my neck and possibly a small scar on my lower lip; I would not lose any speech capability.

The radiation option involves several minutes of radiation a day, 5 days a week for 6 weeks (7 weeks if they find anything in my neck). Based on the information Dr. O'Sullivan has on my condition so far, he says the likelihood of success for this therapy is over 90%. Side effects during treatment would likely include burning pain in mouth, tongue, and throat ("like razorblades" some patients report -- yikes!), loss of function of my salivary gland on the right side of my mouth (the resulting increase in acidity means a higher risk of tooth decay), complete loss of taste, and loss of my facial hair. Only the facial-hair loss would be permanent, all other side effects would fade in the weeks and months after treatment ends.

Despite the heavy side effects of the radiation therapy, it's hard to resist that 90% success rate, and I'm currently leaning toward that option. Nevertheless, Dr. O'Sullivan has set up a surgical consult for me with Dr. Irish (do I detect a theme here?) on November 15 to learn more about that option. I'll have about two weeks to make a decision about treatment as I undergo various tests (see below) to learn more (they also took some blood today for testing).

We also received several pamphlets full of information -- I'll post anything relevant here once I've reviewed them. In the meantime, here is a schedule of what's happening over the next two weeks:

• Wednesday, November 15 -- Immobilization mask and Planning CT scan (for radiation therapy); surgical consult with Dr. Irish
• Monday, November 20 -- Dental consult (see side effect of radiation therapy above); radiation therapy review with Dr. O'Sullivan before treatment starts
• Tuesday, November 21 -- CT scan of head, neck, and chest

That's it for today. A great big thank you to Jeanette and aunt Linda for providing moral support and extra ears and brains during today's appointment!

A Pointed Appointment

I just received a call from the good folks at Princess Margaret Hospital. It seems I had an appointment for today but was not notified about it -- hey, if there are to be mistakes, let's hope they are all this minor. Fortunately, they've rescheduled me for tomorrow morning at 9:30. It sounds like it will be an initial consultation ("It shouldn't take long," PMH-caller said). I'll be seeing radiation oncologist Dr. Brian O'Sullivan:



I've been advised that it's always helpful to have along some extra pairs of ears in these situations, so I've asked my aunt Linda to accompany Jeanette and I to the appointment; she has kindly agreed and even offered to drive us.

It will be a relief to finally get some more information on what to expect in the coming weeks.

More tomorrow.

No new information, but I wanted to thank everyone for all the supportive e-mails and phone calls. It's so encouraging to be reminded that Jeanette and I have such a caring community of family and friends out there. You rock, people!