12-Month Report

I saw my primary care doctor yesterday, or, one of them. This was a nice one, Dr. Saxena. As my selective neck dissection for metastatic squamous neck cancer with occult primary was last year, August 25 2009, we talked about year two. He is not the first to say "we consider you cancer-free," but it is always nice to hear. That said, I'm still going to have to continue following a regular regiment of examination and MRIs on into the foreseeable future.

Moving from the head and neck region apparently I have a hernia, so I'll be checking in with the hernia doctors in a couple of weeks. My "middle-aged" blood lipids ie. HDLs, LDLs, Cholesterol etc. are getting to the point of no longer being ignorable. I pleaded for a short reprieve as I'm in the very beginning stages of a, to date, successful fitness routine. My reprieve was granted. Last, but not least, I'm going to go ahead and give bupropion a try. "Happy pills" as my buddy Jeremy calls them. Giddy details to come, I hope.

Six Month Clean Bill of Health

Tonight, at 7:45 P.M., a doctor called with the result of last weeks MRI. I am scheduled to go have an in person visit every month for a physical examination, and go in every couple of months for an MRI.

This MRI is just about the six month mark since my surgery. The doctor said very succinctly "every thing looks fine, we'll see you in a couple of weeks at your next appointment." Fine, great.

I think it is a term of art, but from what I understand, to be cured of cancer is simply to be breathing and have no recurrence at the five-year mark. So, one-tenth of the way there. There are no guarantees, but I think the chance of recurrence is greatest in the beginning. For me, this first six months, or the first year, is when I'll be least surprised at a sign of recurrence, and most pleased to hear there is none.

Has My Cancer Disappered?

This 'disappearing tumor' idea has floated around the conversation here. My doctor mentioned it. Weird. It is the subject in an article in the NY Times. New evidence that, though rare, sometimes tumors just go away. Cancers Can Vanish Without Treatment, but How?
Or, http://tinyurl.com/yjvpp2t

Take Two Aspirin and call me ...

I had a referral to see a Radiation Oncologist at UCSF's Diller Cancer Center, Dr. Sue Yom. Here is a bit of her bio

Dr. Sue Yom is an expert in the radiation treatment and management of head, neck and lung cancers. In her research, she studies chemoradiation for these cancers as well as image-guided radiation therapy and ways to reduce toxicities using focused radiation techniques, emerging biological agents and radiation protectants.

Yom earned a medical degree and Ph.D. at the University of Pennsylvania and completed a residency in radiation oncology at the M.D. Anderson Cancer Center in Houston, Texas. She has received numerous awards recognizing her commitment to patient care and patient-oriented research. She is an assistant professor of radiation oncology at University of California, San Francisco

Dr. Yom was nice, I liked her.

As I've written earlier there are "major disagreements" among the major cancer institutions on treatment plans for my type of cancer and the way it presented itself, occult primary. To date every doctor I've spoken with and every report of my case has suggested the full monty Chemo-radiation concurrent treatment. Though, all are clear that the treatment plan will ultimately be something that the radiation oncologist, Dr. Yom, and I agree upon.

The UCSF Helen Diller Family Comprehensive Cancer Center is a new facility. In the proud tradition of college bound parents everywhere, U.S. News and World report ranked the Diller Center as a top ten cancer hospital. The most highly rated in California.

The M.D. Anderson center in Texas is the nations premier cancer center. This is where Dr. Yom received her training. Enough on the bona fides, I am fortunate to be in a time and place where I'll be receiving good care.

Dr. Yom talked dispassionately about the two options for me.

1. Radiation, on all glands and both sides of my neck - without chemotherapy
2. Nothing - check in every three months

We spoke of the differing opinions, and the viability of each as an option for me. She said the institutional policy at the Diller Center was Option 1, full radiation, and the institutional policy at the M.D. Anderson Center was Option 2, careful close observation. Her recommendation was Option 2, careful close observation. I would develop a close relationship with my surgeon, and have a careful examination every three months.

This is an incredible, and completely unexpected recommendation. It took me several minutes after I walked out of her office toward the 38-Geary muni bus (The 38 being an ordeal in and of itself) that this was good, really good. I smiled and realized that this was fantastic.

My burden is having a choice, Dr. Yom acknowledges the viability of having radiation therapy. Radiation therapy is commonly recommended and non-controversial. She said "radiation therapy is not that bad."

My situation is that if I choose, I can call the good folks at the Diller Cancer center and say "sign me up for that painful, damaging, couple of months of daily radiation treatment." Nobody would bat an eye and I would be scheduled for my first appointment. If I don't call, they will see me in a couple of months for an examination.

It is complex. The bogey-man is some future occurrence of a primary tumor. If it does reoccur I'll need more, and more difficult, treatment. The possibility of a future recurrence is very worthy of a bunch of anxiety-inducing speculation. It is all speculation. The chances of a reoccurring primary tumor following either treatment option are low(this is the most critical fact).

The chance of recurrence with Option 1, careful close observation, is low. The chance of recurrence with Option 2, full radiation, is lower. There are lots of quality of life issues with taking radiation like loss of salivary function, loss of taste, tooth loss, gum damage, etc. Another more complex issue with taking radiation is that if there is a post-radiation recurrence, it diminishes in some way the ability to do additional radiation treatment. Oncologist do not do radiation after radiation and so on. Dr. Tsai, my surgeon, described it as "you only have one shot". The other side of the coin is that with no radiation treatment, there is some evidence that a recurrence might be a type that is more difficult to treat.

To try and clarify these factors consider the following.

No Treatment

• No radiation damage
• Low chance of recurrence
• Consistent, careful, and regular follow up examination every three months
• Future cancer may be a more difficult type

Full Radiation Treatment

• Radiation damage, loss of teeth, loss of taste, loss salivary function, speech problems
  
• Low chance of recurrence, lower than no treatment
• Regular followups, probably not as much as no treatment
• Future cancer treatment might be compromised by having had radiation
  

So, these are the two options I have. My radiation oncologist has recommended no treatment and she is aware of and prepared to follow the full treatment option if I decide that is what I want.

Treatment plan guidelines

Turns out my treatment plan is guided by a national organization, and its recommendations, the National Comprehensive Cancer Network NCCN. They publish guidelines and flowcharts and algorithms to guide staging and treatment suggestions for a wide variety of cancer patients.

From their NCCN Clinical Practice Guidelines in Oncology. Head and Neck Cancers V.1.2009

Occult Primary Cancer

When patients present with metastatic tumor in a neck node and no primary site can be identified after appropriate investigation, the tumor is defined as an “occult” or unknown primary cancer; this is an uncommon disease, accounting for about 5% of patients presenting to referral centers.
....
NCCN member institutions have major disagreements about the management of patients with poorly differentiated or nonkeratinizing squamous cell, anaplastic cancer of unknown primary site, or other uncommon histologies. Some members believe such patients should be managed with comprehensive neck dissection (levels I-V), whereas others believe the following options can be used (all the following are category 3): (1) chemoradiation; (2) primary RT; or (3) induction chemotherapy followed by chemoradiation.

The meaning of "Category 3" is that there is not any consensus that this is the best option.

The opinion of my radiologist, Dr. Susan Yom, is going to carry much weight in determining which treatment plan I take up. Of course, I have input too. I'll meet with her on September 15th for our initial examination of each other.

Pathology Report

After my surgery on August 25th, the tissue was sent to a pathology laboratory for analysis. I received a copy of the pathology report. All of the following gaffes and typos are the responsibility of your faithful transcriptionist. If the following looks eye-glazing, the executive summary is that in this surgery they only found cancer in the "The One Big Lump" in my neck. The location of the primary source tumor remains a mystery.

GROSS DESCRIPTION

1. Part A labeled 'Level 1 left neck dissection" consists of a single unoriented neck dissection specimen(3.5 grams, 6.0 x 4.0 x 3.5 cm). shows homogeneous tan-pink parenchyma without solid lesions. There is a single 3.0 x 3.0 x 2.0 cm firm lymph node with consolidated tan-pink heterogeneous parenchyma suspicious of tumor. Additional unremarkable 0.5-1.5 lymph nodes are identified, all of which are submitted. Sections are submitted as follows:


• Cassette A1: Submandibular gland. representative cross-sections.
• Cassette A2: Consolidation 3 cm lymph node. representative cross-section
• Cassette A3-A6: One lymph node per cassette. each bisected.
• Cassette A7-A8: Remaining adipose-lymphoid tissue. intact.




2. Part B labeled "level 2 and 3 left neck dissection" consists of a neck dissection specimen (20 grams 8.0 x 5.0 x 2.5 cm) oriented with a single suture marking level 1 and a double suture marking level 2. The specimen is divided into levels 1 and 2 using the areas designated by the sutures. Multiple 0.3-2.0 cm lymph nodes are identified and the specimen is entirely submitted as follows:




• Level 1
  • Cassette B1: Two lymph nodes. each bisected.
  • Cassettes B2-B7: Remaining adipose/lymphoid tissue. intact.


• Level 2
  • Cassettes B8-B11: One lymph node per cassette. each bisected.
  • Cassette B12: Fourl lymph nodes intact.
  • Cassettes B11-B19: Remaining fibroadipose/lymphoid tissue.

FINAL ANATOMIC DIAGNOSIS

1. METASTATIC MODERATELY-POORLY DIFFERENTIATED SQUAMOUS CELL CARCINOMA IN ONE OF FIVE LYMPH NODES (1/5); SEE COMMENT
   -SUBMANDIBULAR GLAND WITH NO SIGNIFICANT PATHOLOGIC ABNORMALITY (LEFT NECK, LEVEL 1. DISSECTION)


2. -NO TUMOR IN THREE LEVEL 1 LYMPH NODES (0/3)
   -NO TUMOR IN EIGHTEEN LEVEL 2 LYMPH NOES (0/18).(LEFT NECK, LEVELS 1 AND 2. DISSECTION)

COMMENT: A SINGLE LEVEL 1 LYMPH NODE (3 CM) IS IDENTIFIED, WHICH IS ALMOST ENTIRELY REPLACED BY METASTATIC SQUAMOUS CELL CARCINOMA. NO EVIDENCE OF EXTRANODAL EXTENSION IS IDENTIFIED.

Update: The Diagnosis

It has been a very quiet, low-key, and restorative week since I came out of surgery eight days ago. Today I got on my bike and ran some errands and put in a good five miles of ridin' in the heat and humidity. It felt very good, and normal, and human.

Yesterday I went to the hospital and had the big menacing metal staples removed from my neck. Twenty-one of them came out absolutely painlessly, one put up a fight....but it really wasn't bad. I feel freed and presentable without the metal.

In addition to having the staples removed, I was expecting to hear the laboratory results for all the surgically removed tissue. It came back as sort of a mixed bag. I am disappointed my trusted ENT doctor of these last several weeks, Dr. Tsai, has moved to another hospital for a four month assignment. I heard the results, and discussed their meaning with a fresh faced new doctor I'd never met...on his first day. I am so pleased I had the good doctor Tsai who instilled trust in me with her concern and competence. She was in charge through it all, up until yesterday when I discussed the results. I guess it worked out for the good, she actually did everything.

The golf ball sized thing they removed from my neck was cancerous. I already knew that from the earlier Fine Needle Aspiration procedure. None of the other twenty-three surrounding lymph node removed came back as cancerous. None of the other material or gland had any cancerous cells. Another good result is that the one cancerous lymph node was very self contained and encapsulated. Just one little golf ball sized balloon of cancer cells, which are now outside of my body.

The troubling news remains, the original tumor which spread its cancerous cells to this lymph node remains unidentified. It may no longer exist. Sometimes a bodies immune system attacks and absorbs small cancerous tumors. So the possibility exists that every cancerous cell in my body was removed during the surgery, which is a wonderful thing to consider. However, no one can know for certain.

I've been recommended to have simultaneous radiation and chemotherapy. I'll meet with the Oncology folks next week and find out more about quantity, duration, scheduled, and all of those details. Nothing will happen for several weeks, just some time to allow my incision to heal.

I wish to express my gratitude to all of the many many wonderful people who have expressed their love to me, and have volunteered their time to help take care of me. Your efforts are a big part of my cure, so please know that I love you, and even more importantly I need you.

Have you ever bought a new 78rpm, 45rpm, 33 1/3 LP, CD, or download and just been swept away for listen after listen after listen? Pippi gave me a recording of The Avett Brothers doing a live set at the Newport Folk festival. I'm into about my tenth listen. I know it is cliché the solace one takes listening to bad love songs after a big break-up. Well, add to the list the intimacy and connection one feels postoperatively listening to bluegrassy punk-infused folk music. Who knew.

I wanna have pride
like my mother has,
And not like the kind in the bible that turns you bad.
I wanna have friends
that I can trust
That love me for the man I've become and not the man that I was

A Perfect Space, The Avett Brothers

Thank you so much Pippi. Listening to your music was a salve that soothed my battered psyche through the many slow days and hours of convalescence.

The .mp3 file recording of them at the Newport Folk festival is here

Surgery details

Today I went in for my Pre-Op appointments. It is a routine, I did the same things a few weeks ago when I had my tongue biopsy and tonsils removed. I sat with a nurse anesthesiologist and talked about the anesthesia and what I need to do to prepare, ie. shower and don't eat or drink.

Then, I sat with the surgery scheduling nurse. She was pleasant, and told me all of my questions were good ones, but I would need to speak to the surgeon to get answers for them. And, that I would get to talk to the surgeons right before surgery, before the anesthesia kicks in. I told her some of the questions would be better answered ahead of time (so I could make this post, for instance.) She agreed, and called the surgeons office and asked if I could have a little time with them.

I was told to go to the blood lab and have some blood test done and then go speak to the ENT doctors. So I did. The blood work was quick and easy and then off to the ENT department. They were jam packed. I told the front desk person about not having an appointment but needing to speak to the surgeons for a few minutes. She told me to wait.

Close to two hours passed, and around 12:30 Dr. Tsai came and got me. She apologized for having me wait so long. I saw her come out and call in at least five patients in the two hours I was waiting, she was booking. And Dr. Huoh wasn't in today, so she was it. As it was 12:30 I rightly assumed that she was seeing me during her lunch hour. To top it all off, she was very pleasant, very thorough, and gave me every opportunity to ask any questions I had. She is a high quality resident. I'm not sure exactly what it means but she said she is going from the VA over to UCSF hospital next week. So, she may be finishing up and going on to a staff slot somewhere else. I'm happy I've had her these last couple of weeks.

The 411:

The surgery is set for 11:00, but might go early. Last time it was set for 11:00 and it started at 12:30. So, take that for what it is worth. It is scheduled for five hours. 11:00 A.M. to 4:00 P.M.

After surgery I'll be in ICU, and can have visitors there as soon as they finish up. I'll probably stay in the ICU with an assisted-breathing machine until things are stabilized. After I'm breathing on my own, I'll be transferred to a hospital room. So Tuesday afternoon go to the ICU. And Wednesday and then on go to the information desk and they'll tell you where I am.

The ICU info is:

Building 200, 3rd floor
Room 3A-122
415-221-4810
(They gave me a couple of extentions)
X4373
x3521
X5048

Here is the Visitors Information Page. I think you can come anytime though.

Wish me luck

I (heart) the US Postal Service

I'm shocked to see a letter from the Palo Alto VA Medical Center in today's mail with the written results of my PET/CT scan two days ago. I love the US Postal Service and first class mail. A $20.00 overnight Fed/Ex would have arrived Monday, and then since I would not have been home they would have left a note to 'try again' and ultimately I'd get the thing mid-next week.

The written report of the PET/CT scan was clean. Nothing much other then the lymph nodes in questions.

They noted that there was a very slight increased metabolic activity in my right tonsil. The report notes the irony of this, since the tonsillectomy was on the left tonsil. Post surgical sites often have high metabolic activity that can lead to false postitives on PET/CT scans.

Basically the PET/CT came back clean....it even notes that I don't have any arterial sclerosis, which is good. Here is the summary in all its glory.

There is a hypermetabolic soft tissue density in the left submandibular area anterior but distinct from the submandibular gland with clear fat plane separation and abutting the left masseteric fascia without invasion. It measures 2.0 x 2.4 cm on slice 235 and 2.6 cm craniocaudally with maximum SUV of 9.2.

Superolateral to this lesion there is a 5 mm level one lymph nodes with no FDG uptake. Subcentimeter non-FDG-avid lymph nodes are also seen at the left level 5 and the bilateral level 2 stations. Normal FDG uptake is seen in the oropharynx.

There is mild asymmetry in FDG uptake between the right and left tonsils, greater on the right, which is of uncertain significance given history of left tonsillectomy?

.....

Impressions:

1. Hypermetabolic left submandibular nodal metastase seen.
2. Non definite scintigraphic signs of primary malignancy. Asymmetric increased uptake in the right tonsillar region versus left is of uncertain significance.

There you have it, the high zoot machine confirms what you can see if you look at me closely and I cock my head a certain way.

The Hospital Location and Contacts

I have received a little reminder card from the hospital where I am getting surgery. It has some directions and contact information. I am re-posting it here.

SFVA Medical Center
4150 Clement Street
San Francisco, CA. 94212

Phone (415) 221-4180
web: http://www.sf.med.va.gov/
hours Monday - Friday 8:00 A.M. - 4:30 P.M.

How to find us:
From the East Bay - West I-80 to Bay Bridge take Golden Gate Bridge/N 101, then Fell exit. Turn right on Stanyan then left on Geary Blvd. Right on 42nd Ave to Clement.

From North Bay - S 101 to Golden Gate Bridge take 19th/GG Park, turn right on Geary, turn right on 42nd Ave to Clement.

From South Bay - N.280, exit Junipero Serra. Left on Sloat, Right on Great Highway which merges to Point Lobos. LEft on 42nd Ave to Clement.

More Evidence, But Still Not Enough

My new general practitioner is Dr. Zheng. It is disconcerting because the last few weeks I've been interaction with the ENT docs, primarily Dr. Tsai. Upon first meeting Dr. Tsai I was put off because she has really big really white eyes that sort of bubble out, and she looks ceaselessly and directly into my eyes. I got over it real quick and realized that I like how thorough and patient she is.

Now, my new GP Dr. Zheng is going to be my point of contact guiding me through this process and though she may be a great person for the job, I've yet to perceive her as a partner in my care, and more of a new person in the parade of people seeing me.

Dr. Zheng called and spoke with me on the phone today. My lung/abdomen/groin CT came back and it showed 8mm nodules near my lung (I forgot if she said one or more then one.) This can mean a bunch of things, and does not specifically point to one thing or another. It is just something to throw into the mix. Lung scarring can come from many things ie. exertion or bronchitis etc. I've injured my lungs with exertion and I've had bronchitis. It could be lung scarring It could be some benign nodules. It could be cancerous tumors.

I asked her a hypothetical, if this was the lone symptom in a patient such as myself and the patient was otherwise asymptomatic, what would the treatment be? She was hesitant to answer but I pressed. Observe it over time for changes, or do a lung biopsy, and probably ask an oncologist because she wouldn't be making the decision on her own. Honest enough.

The upcoming PET/CT scan will not prove or disprove anything about the small lung nodule. It can show other active cancerous growths.

So two more diagnostics to go, a PET/CT on Thursday August 20th, and a neck dissection surgery on Tuesday August 25th.

I'd like to invite any or all of you dear readers to visit me in hospital on the days following my Tuesday August 25th surgery. I may not be able to speak, but gazing lovingly at you would be fun. I'll be there either one night or two depending.

Searching for the primary source

The phrase metastasized means the cancerous lymph nodes swollen on my neck has spread from somewhere else. The reason for the surgery yesterday was to try and find the primary source. The two surgeons Drs. Tsai and Huoh are both ENTs.

The terms are metastasized, and an unknown primary, and carcinoma, and the big visible lymph nodes whose biopsy showed the actual shape of the cancer cells. Put it all together and it is:
Metastatic poorly differentiated carcinoma with occult primary.
(cancer which has spread to the lymph nodes and we don't know where it came from)

In the surgery, to try and identify the primary, the doctors wanted to do three things.

1. Remove my left tonsil and send it to the lab for inspection.
2. Take a sample from my tongue (a one millimeter dissection.)
3. Just look all around my throat, esophagus, windpipe, and nasal cavities for anything unusual or suspect.
   

They did not see anything obvious, so now we wait for the tongue tissue and the tonsils to get checked out in the lab.

The two old school typical candidates for this stuff are older drinkers and smokers. Lately there has been an upswing in folks with HPV, who are younger, contracting neck and throat cancers. I have never been a regular smoker, and hard though it may be for some to believe I'm not much of a drinker. I'm going to ask for an HPV test at my next appointment.

How does one deal with news of this sort? Got me. I liked my friend Greg's suggestion to imagine an image of the disease being conquered. Then keep on visualizing that image. It gets conquered, it gets conquered, it gets conquered. Seems like a good koan.

Surgery

Today I had surgery to remove my left tonsil and to look around my throat.

I was given a general anesthesia, primarily propofol, the stuff that did in Michael Jackson I think it was about two hours, though my whole day was about twelve house.

My doctors and I now have more information, but no firm answers. I'm zapped. I didn't have caffeine for about twenty hours, which is a mistake I am going to avoid repeating.

After some rest and recuperation I expect I'll flush out more fully all the sights and sounds and results of my day in the operating room.

My Cancer

I have cancer.

The above is a sentence, a whole paragraph, a book, a school of research, a life altering three little words. Two weeks ago I saw a doctor, last week the labs came back positive, tomorrow I am having surgery. "I have cancer" is kind of a procrastination-buster, things happen and people move. From up above in space looking down everything looks about the same, just one small additional lump, but the feelings I have, the expressions of caring, love, and support others say to me. All this invisible yet very dense psychic energy is shifting around and being exchanged. Things are in fact very different.

My biggest immediate need is complex and thorough health-care. For this need, I am immensely grateful that I am eligible for health-care benefit due to my years in the U.S.Navy. I spent eight years attached to the Navy, and for most of that time I was a deep-sea diver. All veterans are able to apply for VA health-care benefits, not all veterans receive benefits. I applied, and was accepted. My category is poverty. Having health-care has considerably reduced my anxiety. I've have gone from a passive observer of the national debate on Universal Health-Care to a sympathetic supporter of all folks having health-care available when needs arise. I cannot begin to think how much more difficult this week, or this next year might have been if my immediate needs were both needing to get treatment for cancer and needing to find out somehow, someway to get the aforementioned treatment. What stress at exactly the wrong time in persons life.

So, I have a cancer that has spread to a lymph node in my neck. Tomorrow the good Ear, Nose, and Throat team of doctors Wang and Tsai are going to go in through my mouth and look around as much as possible. Taking biopsies, taking out tonsils, and looking for anything suspicious. If they find out the primary source from which the cancer spread to the lymph node, that will be very good. We will then treat cancer of the (whatever they find) and its cancerous child the lymph node. Short of identifying the primary source we will just treat a cancerous lymph node itself and hope whatever spread it in the first place doesn't keep on spreading.

How much should I write? Should I publicly dissemination medical details of my life? Will the exercise make me feel better. Will it inform concerned readers and lessen their own anxieties. Perhaps, and that is my motivation. If I should fail to accomplish these, I'll take solace in knowing my motives were spot on.