[cancer] What the oncologist has said, coming off of chemo

We met with the oncologist prior to the twelfth infusion session, as we do. Blood chemistry showed white cell count still holding, but my neutrophil count is rather down. This is a precursor to a white cell crash, and if we were having a thirteenth session, it would probably have been postponed to allow me to recover somewhat. Nonetheless, the general consensus is that immune system has held up remarkably well.

We went through the series of prepared questions, which the oncologist seemed impressed with. Roughly in order, here’s what we’ve learned.

I will have quarterly CT scans as followup until I’ve been clear for a year. Then we will switch to semiannual scans, which will run up to the balance of five years, assuming there are no further metastases or other oncological events in the mean time. The first CT scan is scheduled for Friday, 7/16, along with bloodwork, with an oncology consultation for 7/19 to discuss the results.

PET scans will not be indicated unless spots are found on any round of CT scans, so I don’t foresee a return to nuclear medicine as part of the basic followup process.

With respect to the scanning process, I have elected to retain my chest port for at least a year. This means monthly visits to the infusion center to have the needle set and the port flushed. Where possible, I will time these to CT scans and bloodwork to minimize my trips to the clinic. As the port has sunk and tilted, it is possible that eventually the port will become physically inaccessible, though no one seems too concerned about this.

I will be returning to my colorectal surgeon for my colon followups, unless they elect to refer me elsewhere. I have written to ask for an appointment in early August. I expect these to be annual, as before, unless something unusual is discovered in the process.

My permission to resume ordinary physical activities, as well as travel, is “as tolerated.” This is what I expected to hear. Within two weeks I can stop considering myself immunocompromised, and within four weeks I can stop considering my bodily emissions (sweat, saliva, urine, feces, ejaculate, etc.) cytotoxic except for situations where pregnancy might be possible. (Which is to say, none in my case.) For those purpose, I am considered cytotoxic or three months.

Also within four weeks my bleeding risk tapers off, so I can return to the dentist and seek out my tattoo.

The peripheral neuropathy may continue to get worse, and could take up to two years to resolve. The oncologist doesn’t think it’s likely to be permanent in my case, but that is a possibility.

When I asked about my behaviors and self-monitoring going forward, given that the cancers have been largely invisible to me, her response was “exercise more, eat healthy.” I can get behind this.

There were a couple of parts of the conversation that were a little more difficult for me.

One, my CEA levels have gone sharply up in the last six months, tripling from their historical baseline since 2008. I am still within the normal range. CEA is loosely correlated with tumor growth, but not reliably so. In my case, my CEA levels stayed low through the entire primary cancer, which is an indicator that it’s not useful for inferring tumor growth in my system. As my colorectal surgeon said at the time, for some people it’s naturally low (me), for some people it’s naturally elevated, and for some people it’s correlated with tumor development. The oncologist is not concerned about the elevated levels, since it is still within norms. I find the trend line concerning, but am perfectly willing to believe this is a chemo artefact, especially given our prior experiences with the documented unreliability of the test for me personally.

The other part that has given me a lot of mental pause and emotional difficulty is the oncologist’s statement that in my situation there’s about a 40% chance of metastasis recurring. If I stay clean, this declines to 10% over the next three years, and somewhere lower than that but non-zero after five years, which is my baseline risk going forward. Let’s just say I wouldn’t bet money on 60% odds of success in the normal course of events.

I have to say that the prospect of the mental, emotional, lifestyle and financial costs of going through another round of deeper, harsher chemo is deeply challenging to me. As I do with everything, I will process this and work my around it, or through it, as needed. But I’ve really been struggling with this bit. As keeps being pointed out to me, 40% chance of recurrence is 60% chance of staying clean, which only improves with time. But the very idea of doing this again fills me with such pain and horror.

In connection with this, the oncologist said they didn’t think the age of onset indicated any unusual aggressiveness on the part of my cancer. She was a more vague about the meaning of a metastasis in a cancer which had been staged (incorrectly in retrospect) at Stage I.

So, basically, good news tinged with some fear and worry. And I know from statistics. Cancer is all about statistics — as a doctor friend who has much the same cancer history I do said, “Oncology is voodoo medicine.” It’s guesswork, statistics and idiosyncratic response. We’ll only know we didn’t succeed if we lose. I feel a bit like I have a shotgun duct-taped to my forehead, to misquote William Gibson. But that’s life, and I have to run with it.

13 thoughts on “[cancer] What the oncologist has said, coming off of chemo

  1. Krys Taylor says:

    You made it through quite the gauntlet there. Let’s hope that this is the end of this period of your life, and that you live inside the 60% side of that equation. You deserve to enjoy things for a while.
    *hug* Always thinking good thoughts for you.

  2. Amy Thomson says:

    Well, Jay, I’d say your worries are justified and logical, as mine were. Even nearly 18 years post-cancer, I still find myself worrying about it.

    Basically, you’ve been shot at and it missed. This experience only sharpened my appetite for life. My advice is to treat every wonderful thing that happens from here on out as gravy. I’d tell you to try not to worry, but that’s like not thinking of a blue elephant. More important is to be mindful, and catch and divert your mind from obsessional worrying.

    Edd, Katie, and I are all hugely happy that you’re over this thing. Happy Father’s day to you and The Child. May it all be gravy from here on out.

  3. Bryan Schmidt says:

    Jay:

    I’ll keep praying for you. I can totally understand the fear and worry, but I hope with exercise a solid diet and time you can get those good results, reduce those percentages and move on. If anyone can beat this, it’s you. You strength and spirit amaze me.

  4. Sydney says:

    “But that’s life, and I have to run with it.” For this moment, that’s your real truth. Grab it and go. Best wishes.

  5. Cora says:

    I’ll be keeping my fingers crossed that you’re among the 60%.

  6. Tora Glunt says:

    I am a cancer surviver lung tumor so far 2 yrs and still in remission I keep busy gardening rotatilling mowing lawn and spinning wool I usaully am in motion constantly and love it I deal with a back injury and have to be carefull when bending but I deal with each problem one at a TIME.

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