Day +659: He was showing them contingencies…

9/19/12: I had my consultation with Dr. Tufaro at Johns Hopkins today and liked him very much. He examined my mouth and throat (the dreaded through the nose scope again) and palpated my neck in addition to looking at the cutaneous (i.e. skin) GvHD on my back. He was considerate and apologetic for any discomfort he caused during my exam and told me I’m a great patient. He also pulled up all of my test reports (MRI, PET, CT, and biopsy) on the computer and printed copies for me without my having to ask. He showed me the MRI images and discussed the results. He treated me with courtesy and respect and as an intelligent adult.

He was very encouraging about my prognosis based on what he saw. First the bad news – involvement in lymph nodes on both sides of my neck is fairly certain as indicated in the original PET scan two weeks ago. However, he said this is quite common in base of tongue cancer because the tongue has so much lymphatic material; it is specifically designed to move debris and toxins to the lymph nodes to be handled. The “hot” spots on the nodes are also small. The base of tongue tumor is very small and does not cross the center line – it is on the left side. This means it is a good candidate for TORS (TransOral Robotic Surgery). The tumor is HPV 16+ (human papilloma virus type 16 positive) which, according to several studies, has a five times higher survival rate than HPV negative oropharyngeal cancer. The usual treatment is radiation and chemotherapy. The advantage to surgical removal of the primary tumor would be that the cancer could be treated with less radiation.

The doctor is concerned about chemotherapy for me because I’ve had so much already with the bone marrow transplant. He’s also worried about the potential effects of radiation and chemotherapy on my graft-versus-host disease and wants to confer with another GvHD expert before making his recommendations to Dr. Gourin and the multidisciplinary team. He said he’d get this done before my meeting with them on Friday.

He said that the treatments are very unpleasant but the long term prognosis for survival and quality of life make them worthwhile. A lot of the probable side effects, particularly from radiation, sound similar to what I’ve already experienced with the transplant – dry mouth, taste buds not working properly, and mucositis. In addition, because of the lymph node treatment, I’d also have a stiff neck. These effects should pretty much correct themselves with time and therapy, much as they’ve done with the BMT, although yet again I’ll probably have a new and different “normal” when all is said and done.

I guess I didn’t get a lot of new information today (except the HPV+ factor) – I’ll know more on Friday – but I did feel encouraged that all is not hopeless. I had a good rapport with the doctor and I liked his positive but honest attitude. I liked it that he said, “It won’t be fun but I think this problem can be fixable.”

As for my quest for pre-treatment poundage, I dined on crab soup, pot roast, and peanut butter pie for lunch on the way to my appointment and escargot, lobster, baked potato, and hazelnut mousse pie for dinner later this evening. At least this part of the preparation is fun :-).

p.s. We had a great time visiting our friend last weekend! See Gallery 2 for the action shots, ha ha.


  1. I like that it is fixable too. In the mean time, eat up!!! Don’t even look at calories or quantity. Just eat! Anything you want!!! Cheers! 🙂

  2. Karen,
    I love your pre-treatment diet! Your never-say-quit attitude is a real inspiration.

  3. yum karen eat anywhere I know? I heard from chrissy and she said she has seen you a couple of times and said good things. this will be a
    piece of ……cake? so sorry you have to do it twice.

  4. All in all sounds like a good visit with some positive news, I wish the road was less bumpy, but I’m encouraged in what was said today. So glad you sought another consultation, you always have to be an advocate for yourself, and that he can add his knowledge to tomorrow’s conversation.

    Wishing you the best 🙂
    Deb and Mike

  5. So very encouraging it’s a big part of successful treatment to trust and be comfortable with your doctor good luck

  6. Harry Chapin, The Rock

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