August 9, 2017 — On the Back Burner

I’m overdue posting my latest news, but I’ve been away on vacation, then was occupied with re-entry tasks after returning.

On July 31st Claire and I drove two and a half hours down to Albany from our Adirondacks camp in Jay, boarded a train in Albany and headed into Manhattan. Our destination was Memorial Sloan-Kettering, where I had a long-standing appointment with my endocrinologist, Dr. Stephanie Fish.

Once our vacation plans had fallen into place, I’d tried to postpone the appointment so we wouldn’t have to travel so far. But when I learned that Dr. Fish’s next open appointment slot was in February — you heard it right, FEBRUARY — I cooked up our elaborate travel plan.

I’d had ultrasound testing at the time of my appointment with Dr. Boyle in June, and had gone to the new MSKCC satellite facility in Middletown, NJ for a blood draw just before we left for the North Country. So, this appointment was to hear Dr. Fish’s recommendation on whether or not surgery is called for, to remove the suspicious nodules in my thyroid bed and the lymph nodes on the left side of my neck that have yielded a positive biopsy for thyroid cancer.

Turns out, the answer is neither yes nor no, but “not yet.”

Dr. Fish observed that my thyroglobulin had gone from 1.0 ng/mL in June of 2016 to 5.7 in January, 2017. My latest July 21 blood work had it at 5.2, slightly lower. My June 5 ultrasounds showed no significant growth of the lymph nodes in my neck. The suspicious nodules in my thyroid bed are unchanged in size (these are the ones that could not be successfully biopsied with a needle because they’re too deep). Both my surgeon, Dr. Jay Boyle, and Dr. Fish concur that it's acceptable to continue the watch-and-wait.

Dr. Fish said they’d be willing to proceed with the lymph-node and nodule-removal surgery now if that’s something I want, but I told her I’m content to wait on that. She said she had been expecting — based on the January results — a steady climb in the thyroglobulin level, indicating rapidly advancing disease, but it does seem to have stalled for now.

I asked her what I could expect as far as how long the watch-and-wait strategy will continue, and she predicted I’ll probably need surgery within 2-5 years, depending on what happens to the thyroglobulin numbers. She said her greatest concern is the nodules, because - if they are indeed cancerous - they’re located in a place where, if they did start to grow, they could invade other structures in my neck, such as the larynx and esophagus. The lymph nodes on my neck, on the other hand, are close to the surface and would be less likely to impact other structures.

This whole experience is sort of like being stalked by a vicious sloth. We can see him coming, but there’s no particular hurry to get out of the way.

Bottom line: watch-and-wait continues. Surgery is on the back burner. Follow-up blood work and ultrasounds are scheduled for 6 months from now.

If I wasn’t such a veteran at receiving this sort of news,  I’d probably be consumed by anxiety. But I’ve been living with cancer for so long now, it’s not a new thought. Just more of the same.

After a dinner out with my sister-in-law Ramona in Manhattan, Claire and I bade each other farewell for the next week. I boarded an Amtrak train back to Albany, and she a NJ Transit train to our home on the Jersey Shore (she’d run out of vacation days and had to get back to work). I spent the next week getting our house ready for putting it out for rental on AirBnB: a new experiment for us.

June 5, 2017 — Keep Waiting, Keep Watching

I've just returned from Memorial Sloan-Kettering's satellite facility in Basking Ridge, New Jersey. I had a routine ultrasound followed by a consultation with my surgeon, Dr. Jay Boyle. Routine, yes, but - since I'd had a biopsy of a lymph node on the left side of my neck several months ago that revealed recurrent papillary thyroid cancer - I knew this would be a discussion about treatment options. They're also pretty certain that several small nodules that have been detected in my thyroid bed (where the thyroid used to be) are also cancerous, but those are too inaccessible for a needle biopsy.

I also knew that, because Dr. Boyle saw no need to move my appointment up after news of the biopsy results came in, this is a relatively slow-moving situation.

Bottom line is, we decided to continue watchful waiting for now. I'd told the nurse that was my preference, based on what I knew, and she told Dr. Boyle of my wishes before he came into the room. He's agreeable with that. He said that, as far as he's concerned, we could go either way. He did say that, if we decided on surgery, he'd recommend removing a whole lot of lymph nodes as well as the nodules in the thyroid bed, because it's not easy to keep going back in there and remove a lymph node here, a lymph node there. With each new surgery, there's more potential for damage to the tissues of the neck area. He said that, based on the location of the nodules, surgery would present about a 10% chance of permanent damage to the nerve that controls the vocal cords. I speak for a living, so permanent hoarseness and weakness of voice is not something I'd consider lightly.

I asked him where in the body thyroid cancer usually metastasizes to, and he said the lungs and the bones are the most common. In either of those cases, though, he said it's usually treatable with either further radioactive iodine treatments or beam radiation.

The ultrasound showed no change in the size of the thyroid-bed nodules, nor of the couple of abnormal lymph nodes they've been watching, but it did show a new, very small lymph node in the same area that also looks abnormal. The doctor said he could only barely feel any of those lymph nodes as he palpated my neck.

The other doctor who's involved with this decision is my MSKCC endocrinologist, Dr. Stephanie Fish. Dr. Boyle tried unsuccessfully to get Dr. Fish on the phone to find out why, exactly, she'd ordered the biopsy - because he said that, in his experience, when a doctor orders a lymph node biopsy, it's generally because surgery is a likely outcome (if it turns out there's a malignancy, of course). When I reminded him of my non-Hodgkin lymphoma history, he said that could explain it - there would be a need to determine which of my two kinds of cancer was causing the swelling in the lymph nodes. Different cancer, different treatment protocol. (We now know, of course, it’s the thyroid cancer that’s recurred, not the lymphoma.)

I see Dr. Fish on July 31st. They drew blood today that will provide her with thyroglobulin numbers and other crucial information she needs, prior to that appointment.

It's kind of nerve-wracking to wait all that time, and a little frustrating that the two doctors weren't on the same page prior to my arrival today. Dr. Boyle said he will talk to her, though, and I'm sure he'll call if there's any change.

I'm OK with this outcome. I'd rather not face another surgery at this time, if if can be avoided. With years of watchful waiting for my NHL behind me, I'm comfortable with the "don't shoot till you see the whites of their eyes" approach. Sure, I'll continue to live with uncertainty, but what else is new?

Today's appointment confirms for me how important it is to be go into such meetings well-informed, and to speak up about my own preferences as a patient. Some treatment decisions are less than clear-cut, clinically speaking, which leaves significant room for patient preference to be taken into consideration.

Next appointment with Dr. Boyle is in 6 months. As I've said, I see Dr. Fish in just under 2 months.

February 9, 2017 — Confirming What We Already Knew

Three days ago I made the trip to Memorial Sloan-Kettering in Manhattan for a repeat of the biopsy that didn’t work out so well. That was actually two biopsies: one of some lymph nodes in the left side of my neck that have become enlarged, and the other of some small nodules that have developed in my thyroid bed (the area where the thyroid used to be).

I evidently misunderstood what the nurse told me in an earlier phone conversation. Turns out, the lymph-node biopsy was successful after all, yielding enough tissue for analysis. The problem was with the nodes-in-the-thyroid-bed biopsy. This is the one they wanted me to come in to repeat, this time to Manhattan rather than to Basking Ridge.

That didn’t happen, though. The interventional radiologist in New York did an ultrasound of my neck, and after looking at the results she concluded it was too difficult, even risky, to biopsy the nodules. They’re located very deep inside the neck, and they’re surrounded by so many blood vessels that there would be the risk of internal bleeding that could be hard to control. Her largest needle is barely long enough to reach that spot, she explained, and the longer the needle, the harder it is to control its tip precisely. She promised I’d be hearing soon about the results of the lymph node biopsy, once the other doctors have had a chance to confer.

Yesterday, I got a phone call from my endocrinologist, Dr. Stephanie Fish, who ordered the biopsies. She confirmed that there is papillary thyroid cancer in the lymph nodes, the same type that had showed up in nodules on my thyroid gland five years ago.

This is further confirmation of what we already knew — or had at least surmised. Dr. Jay Boyle, the surgeon who removed my thyroid, told me back in July that the nodules were almost certainly a recurrence of thyroid cancer.

But there’s still no particular hurry to do anything about it. The protocol continues to be “watch and wait.” Dr. Fish told me that Dr. Boyle sees no reason to move up the date of my next scheduled appointment with him, which is in June.

I’m OK with this. It’s taken me some years as a cancer survivor to wrap my mind around the concept, but “watch and wait” is not a matter of ignoring the issue. In certain circumstances, it’s a treatment modality in itself.

To paraphrase ol’John Milton, they also heal who only stand and wait.