Coming Into Focus

I mentioned in the previous post that I forwarded my diagnostic reports (CT and biopsy) to Big Sister and that she forwarded them to colleagues in the cancer center where she works. Specifically, to a medical oncologist (chemotherapy doctor), an ENT/head and neck surgeon and a pathologist. They were very kind to review my records and give Big Sister and me their remote diagnosis and expected treatment plan if I were their patient.

The medical oncologist said:

Generally should have complete staging exam by surgeon (check the uvula and bx). This sounds like stage 2-3 disease based on the neck node we would use chemo/xrt and only operate on the neck if surgeon felt necessary.

"XRT" refers to "external radiation therapy." That means normal radiation therapy with beams from outside the body as opposed to less common treatments where radioactive materials are injected or inserted into the body.

The ENT surgeon said the following:

Your notes were very informative.

It appears your brother has squamous cell carcinoma of the right base of tongue. From the CT report it appears the parapharyngeal space lymph node contain metastasis, which is a basin of lymph nodes high in the neck, not normally dissected in neck dissection. I think he has a stage IVa.

Bottom Line – Treatment should be concurrent radiation therapy and chemotherapy with cisplatinum and 5FU. His radiation should be done with IMRT and he should receive between 3 to 5 doses of cisplatinum and 5FU during the radiation. Surgery has no role here, including robotic surgery which has not shown any benefit in cure or quality of life. This is my bias, but the data supports this as well. He has an excellent chance of cure. Michael Douglas, the actor, had a cancer similar to this and had the same treatment in L.A. He is making movies again.

He can call my cell phone.

My first reaction was that "Stage IV" and "metastasis" are not usually found in the same diagnosis as "excellent chance of cure." But I've commented before that I'm from an older time when those words typically meant a death sentence. That's an indication of progress over the past 50 years: that even advanced cancer can be "cured". Nice to hear.

As for the lingo:

• metastasis: from Greek meaning "to remove, to change". In cancer it refers to cancer cells that migrate from the original site to a different site in the body and establish themselves there as separate tumors. It's a Bad Thing. The remote tumors are referred to using the shorthand term "mets".
• cisplatin: a chemotherapy drug approved in 1978. It contains platinum - like all chemotherapy drugs it's a poison. It works by binding to the DNA of dividing cells and either preventing cell division or introducing DNA damage that, when accumulated, will cause the cell to kill itself ("apoptose"). The side effects of chemotherapy are due to the fact that it acts in this way on *all* rapidly dividing cells, which include the cells lining the entire length of the GI tract (mouth to anus).
• 5FU: also called flurouracil. Another chemotherapy drug. 5FU interferes with the synthesis of new DNA bases in cells. Rapidly dividing cells need to synthesize a lot of DNA in order to divide (they need to duplicate their DNA as part of replication). 5FU starves them of raw materials for DNA, so the cells die. Also a systemic toxin that effects all rapidly dividing cells in the body but has the most impact on cancer cells.
• IMRT: Intensity-Modulated Radiation Therapy. A form of radiation therapy in which 3D imaging is used to model the tumor and surrounding critical structures and then sculpt the radiation pattern fairly precisely to deliver radiation only where desired. This "modern" technique can result in much less damage to surrounding structures.
  Wikipedia says:
  

  Radiation therapy works by damaging the DNA of cancerous cells... Cancer cells are generally less differentiated and more stem cell-like; they reproduce more than most healthy differentiated cells, and have a diminished ability to repair sub-lethal damage. Single-strand DNA damage is then passed on through cell division; damage to the cancer cells' DNA accumulates, causing them to die or reproduce more slowly.

• "not normally dissected" means that a node like Lumpy the Lymph Node would not normally be removed surgically. The radiation and chemo will (hopefully) shrink it.

Big Sister followed up this diagnostic and treatment information with specifics about what treatment might look like. She expected that I would have 5-8 weeks of radiation with concurrent chemotherapy, then continued chemotherapy for several months after that. She had this to say:

I know all of this sounds scary – but you have around an 80%+ chance of cure with the treatment plan outlined for you. You will have one very rough year – with the first 6 months when both radiation and chemotherapy will be impacting you physiologically - being very exhausting and challenging. The worst time period will be the last few weeks of radiation and the two or three weeks after radiation is done, and then you will begin to recover some of your mojo. After that - you will start to mend and heal, but it takes at least one full year after treatment ends to start to feel like yourself again. To expect otherwise is not reasonable.

That was scary at first. But we talked a lot more and I started to adjust to it. Big Sister told me a lot of strategies to help endure the treatment, so I have tools and advice readily available.

Thousands and thousands of people have done this before me and survived.

The pathologist replied a bit later with this:

Sorry that your brother is dealing with this. I saw the path report from the tongue biopsy, but didn't see the one from the neck FNA. There is reference to it in the ENT report and it sounds like it was atypical with necrosis and atypical squamous cells - certainly suspicious in this setting. I think getting second opinions is always a good idea. The slides from both the tongue mass and the FNA could be reviewed at another institution with a good reputation. If I can be of any assistance I would be happy to talk with you or your brother.

A little more to be concerned about there with unclear but suspicious information about Lumpy the Lymph Node. But from what I've read even with spread in the neck it is still considered highly treatable (I'll write about confirmation bias in a later post - mine is currently very active).

It was so helpful to get these diagnostic interpretations from cancer practitioners. It gave us a baseline with which to compare diagnoses and treatment plans that I receive from local doctors.

I forgot to mention in yesterday's post that as soon as we got the pathology I started researching doctors at Dana Farber and then called to make an appointment. I have an appointment for a multi-disciplinary team consultation with a medical oncologist, radiation oncologist and surgeon on June 4.