Tuesday, June 4, 2013


Wonderful Wife and I spent the afternoon at Dana Farber Cancer Institute meeting with a multi-disciplinary oncology team. We met with a medical oncologist I'll refer to as Doctor Chemo, a radiation oncologist I'll refer to as Doctor Rad, and an ENT/head & neck surgeon I'll refer to as Doctor Cutter. They are practitioners in Dana Farber's Head and Neck Cancer Treatment Center. We met several other members of the treatment team as well.

We had to wait a while beyond our appointment time for the team to see us. But that was fine. We realized that we would also get the same attention they were currently giving to some other patient, and we wouldn't want them to rush with us. Other families we saw in the exam area looked very grim and we realize we have much more hope for successful treatment than many other patients.

Wonderful Wife and I were actually in pretty high spirits. We'll assume that I'm in that HPV+ 80% survival rate category until someone tells us otherwise. We feel lucky to be in that category.

Then the team arrived, along with a nurse practitioner and a medical student. A lot of people in a small room! They gathered a bit of history and asked some symptom questions. I informed that them I'm fairly savvy about cancer so they can answer with jargon if they wish. They thought it was pretty funny that I had given names to Lumpy the Lymph Node and Pappy the Papilloma.

Doctor Cutter took the lead and performed a thorough physical exam of my tongue, mouth and neck. They had me stick my tongue out and move it in various directions. They remarked positively that obviously the tumor had not affected mobility yet, which they later remarked was an indication that it had not infiltrated the tongue muscle significantly.

Each of them manipulated Lumpy the Lymph Node, with Doctor Cutter doing so pretty aggressively. It doesn't hurt so that was fine. They all remarked that it was completely mobile. I asked what it means when a lymph node is fixed. They told me it means the node has broken its encapsulation and has become bonded to the surrounding tissue, which is presumably a Bad Thing.

Doctor Cutter tried several techniques to see Pappy: by gripping my tongue with gauze and pulling on it; by using a tongue depressor; and by pushing down on the back of my tongue with his gloved finger. He couldn't see Pappy via any of those techniques. Pappy is hiding way back there.

Then Doctor Rad inserted a slender tubular video camera through my nose and down my throat until they could see Pappy. They discussed it a bit and had me perform various actions like puffing up my cheeks with air, swallowing, etc. so that they could see different structures. I asked if I could see and the moved the cart so I could see the monitor.

The first thing I saw was what looked like a deep groove in the back of my tongue. I asked if the groove was normal and they all replied, "No." It turns out Pappy is shaped like an inverted U, with the legs of the U looking like parallel ridges running down the sides of the base of my tongue. The tumor is also slightly lighter colored, with some parts almost white. It wasn't as bumpy as images I had looked up online but it did have some obvious bumps. Nor did it have the cauliflower appearance that the "papilloma" name refers to.

If you do an image search for oropharyngeal papilloma you'll find lots of gross pictures of mouth cancers, but I can't find any that show the same site as mine. That's interesting because mine is in a very typical site for the HPV+ variety. Most of the pictures I found I would guess are due to smoking or chewing tobacco.

I wish I would have used my phone to take a photo of the monitor but I didn't think of it at the time.

After the exam the team left the room to discuss my case, telling us they would return individually to discuss proposed treatment.

They were gone quite a while. Then Doctor Chemo joined us again and described their diagnosis and plan.

She started by saying the assumption going forward was that the initial pathology was correct: HPV+ squamous cell carcinoma.

Here are my notes from the meeting with Doctor Chemo:

They will obtain the biopsy samples and redo the pathology to confirm. This is routine for them.

The tongue tumor is staged T3 and the node is staged N2b (two nodes, 3.5cm and 1.5cm). Overall stage is 4 (she didn't give a letter). [See the TNM staging system]

I will have a whole body PET scan on Thursday to check for mets and as a baseline to compare with another PET scan 3 months post-treatment.

No surgery. It would leave me with too much deformity.

I would have 6-7 weeks of multi-beam focused radiation.

I would have three rounds of cisplatin (no dose yet). 1st cycle at start of radiation. 2nd cycle three weeks later and 3rd cycle three weeks after that - approximately at the end of radiation.

I would not have a port, all three chemo cycles will be administered via my arm.

Radiation is 5 days/week.

I will receive fluids with the cisplatin and fluids again the next day each time to minimize kidney damage.

I am to notify them immediately of any fever during treatment.

She mentioned I might read about cetuximab as an alternative to cisplatin. It is investigative and not standard of care at this time.

If the redone pathology comes back HPV-negative for some reason, I have a worse prognosis. If that it the case it sounds like they will recommend sequential induction therapy. That would be a round of chemo alone first (including 5FU, she didn't say what else), followed by a chemo/radiation combination. It is not investigational, it is apparently first-line for that indication, but there is also a related trial ongoing.

If the PET scan comes back with remote metastases, I believe Doctor Chemo said "that would not be treatable." I can't remember her exact words. Her statement took me aback so much I didn't even think to write it down.

They have Tumor Board every Wednesday and my case will be discussed next week.

If I have toxicities or excessive side effects they will adjust dose or take other action to mitigate.

A while later we met with Doctor Rad. Here are my notes from that meeting:

I will have a CT scan soon for radiation planning, as well as have a mask made for head positioning during therapy.

The first two weeks I'll feel pretty normal.

The second two weeks I'll start to have a sore throat and fatigue and start to lose taste.

The remainder will be more difficult.

One month after treatment ends I should feel better but it will be a year until completely normal.

Taste and saliva will come back slowly but won't be the same. My food preferences may change: some tastes I used to like I won't and some I didn't used to like I might. [Big Sister also told me I may have mouth dryness issues and may no longer like dry foods.]

She recommended a book called "Life on the Line" by a chef who had tongue cancer. The last part of the book is about recovery of his taste after therapy.

I signed the consent form for treatment acknowledging the possible side effects and risks of both chemo and radiation.

It takes about 2-3 weeks to complete the planning, get the second pathology results, etc.

She usually does planning CTs on Monday but we'll be gone Monday. She will try to get us in this week instead.

Finally we met with the Program Nurse, who told us Dana Farber has all the services we might need: social workers, dietitians, speech therapists, etc. They even have free housing if we were from out of town.

The doctors ordered a baseline blood draw, which I had taken before we left.

Wonderful Wife and I both liked the team and trust them. Since this is very similar to the treatment plan proposed by Big Sister's colleagues we'll just move forward at Dana Farber. I also ran this treatment plan past Big Sister and she saw nothing she disagreed with.

I'll most likely cancel the appointment I have for another consultation at a different hospital on June 17.

We received no surprises, which is good news from our point of view. However, there are still two things that could kick me out of the HPV+, 80% survival rate bucket in which we've been assuming I reside:

  • A PET scan that shows remote metastasis
  • A second pathology examination that conflicts with the initial HPV+ conclusion

So we're not quite there yet.

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