Post I/O Surveillance

[sfdad]

Hi everyone,

My pre-surgery thread is here (http://www.tc-cancer.com/forum/showthread.php?t=9683). I'll reprint the summary from my signature:

2009-05-10: Discovered hard lump on right testicle
2009-05-11: Ultrasound confirms mass
2009-05-13: Pre-surgery, blood markers normal
2009-05-13: Right I/O
2009-05-18: Embryonal carcinoma, confined to testis
2009-05-21: CT scan
2009-05-26: CT scan negative; awaiting consultation with urologist

Since then I've had one chest x-ray (negative). Throughout the whole experience my blood markers (LDH/HCG/AFP) have remained normal.

I wanted to record my decision on treatment, as well as some of the important stuff I gathered during my research. I'm being treated at Kaiser Permanente here in the San Francisco Bay Area. I visited Dr. Craig Nichols in Portland for a consultation, and exchanged email with another physician at Stanford. Like many of you, I've also spent countless hours browsing the web.

Surveillance was the first recommendation from Dr. Nichols; his distant second recommendation was chemo. Kaiser strongly recommended surveillance but also mentioned RPLND (seemingly skipping chemo and going straight to the surgery).

I decided to go with surveillance. These are the reasons:


First and foremost, that's what all my doctors recommended.
Dr. Nichols said that the I/O was about 80% likely to have cured me, and that in case of recurrence, chemo tends to be extremely effective for my particular type of cancer.
Dr. Nichols also noted that even in more serious cases (pathology showing LVI), the recommended treatment would be the same. So even if I wanted to be more aggressive about treatment and act as if I were staged further, they'd still want to wait and see rather than begin active treatment.
There didn't seem to be any advantage to chemo or surgery without evidence of remaining cancer, as long as I was willing to adhere strictly to surveillance. Survival rates aren't appreciably different for early chemo vs. chemo done soon after discovery of recurrence.
Dr. Nichols emphasized that chemo is to be avoided if possible, both because it's unpleasant and because it potentially has lasting side effects. It's an obvious point to make, but he makes it anyway just in case patients don't understand.
Recurrence is typically prompt (most within first two years after I/O, average time 4 months). So even if I were the type of personality to get lazy about surveillance, it's likely we'd have discovered a recurrence before I got around to slacking off.

All in all, my story is (so far) pretty straightforward. I didn't want to disappear from the forums without at least an occasional progress report, so this is where I am as of today.

[Fed]

It's great to hear that you have settled on a course of action (and rationally devised, to boot). Great job on having the consultation with Dr. Nichols, and thanks for providing an outline of your thought-process. All the best!

[Itsadeepbluesea]

Sounds like your taking good steps towards recovery best of luck to you and keep us posted.

[sfdad]

All the best!

Thanks, Fed. Two more things I forgot to mention from my consultation with Dr. Nichols.

First, the first-year surveillance schedule he recommends is physical exams every six weeks, with blood work each time, and alternating chest X-rays and CT scans (in other words, CT every 12 weeks, X-ray every 12 weeks, but staggering the two). After the first year the frequency of surveillance gradually declines. He said this schedule takes into account the risk from needlessly frequent radiation scans. Reading between the lines, I was happy to infer that the magnitude of the two risks (extra radiation vs. late-detected metastasis) were both in the same ballpark, because that helped put in perspective the extent of the threat I'm facing. In other words, yes, it's a serious threat, but not so bad that we're willing to bathe you in radiation for years because of it.

Second, Dr. Nichols said something surprisingly inspiring to me toward the end of our meeting, and I wanted to share it with the rest of you, because it almost certainly applies to you, too. He advised me to continue to lead a healthy lifestyle by maintaining my weight, continuing to exercise, and eating well. After all we'd just discussed, I assumed he meant that I should be preparing my body for imminent chemotherapy. I asked him to confirm that's what he meant.

He did say that chemotherapy carried an associated risk of metabolic syndrome afterwards (i.e., I might develop adult-onset diabetes), and for that reason that it helps to have weight, diet, and exercise under control. But the main reason for his advice was simply that I needed to prepare for living a long life. Some people in our situation develop an "I'm going to die anyway, so why bother" attitude toward many of their health choices, and those decisions can catch up with them years later when they're surprised to find that their TC didn't kill them after all. So he wanted to make sure I understood exactly which morbidity threats I was facing; specifically, not the one that I came to see him about.

This was such a nice way to sum up the sometimes frightening, often guardedly optimistic advice I'd been getting in the prior weeks. I am formally under doctor's orders to live a long, healthy life.

[Scott]

I am formally under doctor's orders to live a long, healthy life.Excellent! I hope you'll follow that instruction carefully!

[MRMRSU]

What a great prescription! I'm certain you are relieved that you've made a decision. Best wishes on your surveillance.