Well that went just as I expected it would:
- No explanation as to why my PSA is where it’s at and why it’s doing what it’s doing (yo-yo readings).
- No willingness to state with any certainty whether I’ll experience biochemical recurrence (BCR) at some point in the future.
- No meaningful discussion of next steps until we know what we’re dealing with.
- Retest PSA in December.
So we go back into the wait, retest, and wait some more mode for the foreseeable future. I guess that’s okay, but I’m a pretty binary guy, so it really would be nice to know that, yes, the cancer is coming back or, no, it’s not. At least then you can work to come to terms with the answer even if it’s the one no one wants to hear.
We did talk some about using other imaging mechanisms to see if they can pick up on any micro-metastases if the December results are worse than where we’re at now. We also talked a little about salvage radiation therapy, hormone therapy, and the timing of each but, again, nothing that I didn’t already know from my own research.
We also discussed the recent papers that indicated BCR at 0.03 ng/ml and, while he was interested, he pretty much stuck to the standard 0.2 ng/ml definition of BCR and would be using it in the decision-making process.
I did mention that I’m in no rush to start anything (i.e., salvage treatments) until we know exactly what we’re dealing with, and that quality of life is high on my priority list if and when we get to that point.
So that’s that. No real surprises. No real revelations. Just keep on keepin’ on.
On that happy note, remember that September is Prostate Cancer Awareness month. (Hard to believe it’s only a week away! My time flies when you’re having fun…)
Dan's Journey through Prostate Cancer 
More waiting… I’m sorry you didn’t get anything really out of the meeting. FWIW, which isn’t much, I think it’s noise in the supposedly more sensitive test. I certainly wouldn’t start down any treatment path until things are undeniably clear. Hang in there. I think you’re NED.
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Thanks, Jim. I agree. The doctor was unwilling to say it’s back, and we did talk about noise in the test as a possible explanation for the difference in results. Hell, when you’re trying to measure one-one-hundredth of a nanogram per milliliter, there’s bound to be some variation. Not going to get all worked up about it at this point. Been there, done that.
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Hey Dan, I now where you’re coming from. I did a PET scan from my neck to my knees recently that showed the cancer hasn’t spread outside of the prostate. The oncologist then put me on a low dose of Procur 50MG and said that he felt my PSA would get to 0.X in a month. End of the month very hopeful and it went from 3.7 3.5 which IS the first time it has gone down other than after the radiation when it went from 7.8 to 3.5. Now he said a couple more months of Procur and hopefully it will be gone. I feel more anxious because every treatment he tells me I should be right and I’m not. Side effects are minimal but he said of he put me on 3 times the dose I probably would not be able to work because of the side effects and up until now the only time I’ve had off is for treatments. I’m still super fatigued and the oncologist doesn’t believe it is the prostate, although I’ve heard a lot of contradictory reports from other patients (is that what we’re called?). I’m having a colonoscopy next week to see if I have any other problems in my bowel that could be causing the fatigue and other stomach problems I’m having. The oncologist said it is very rare for people to have more than one cancer, but my grandmother (who may have just had pancreatic cancer, lost a kidney, some liver, her bowel, her spleen and pretty much every organ she could spare. I was too young and wasn’t given the detail of whether she actually just had the one cancer or not. I know that if your cancer spreads they still call it the cancer you were first diagnosed with, but the PET scan only looked for prostate cancer cells and would not identify any other form of cancer.
Don’t you love statistics? I knew I was a one per-center. Every time the oncologist says, I think we should do this, it works for 90% of patients, Pareto says there has to be the balance of the other people and so far that is always me.
Let’s hang in there. I’m adding things to my bucket list and I think the biggest thing is to always have something to look forward to. My grandmother lived 20 years after her colostomy and they were a lot less sophisticated back then She died when she felt she was no longer needed and had nothing left that she wanted to do. I’ve still got so much I want to do.
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Hi Luigi,
Thanks for sharing your story. I’m sorry that you’re having to deal with all these uncertainties but, as I’ve learned over the last 6 years, it seems that that’s the norm with prostate cancer rather than the exception. Infuriatingly frustrating, isn’t it?
I had to chuckle at your comment about Pareto. Brought back lots of manufacturing memories. Like you, however, I tend to think that I’m going to land in that 10% as well, and I’m generally a pretty optimistic person. But there’s just something in my gut this time around telling me to expect the worse.
One of the things that concerns me about possibly moving into the world of advanced prostate cancer is the side effects of the various treatments. I read account after account, and it seems that the side effects of treatment are worse than any actual symptoms of disease. Perhaps I’m wrong. Still, it has certainly strengthened the quality of life versus quantity of life debate in my pea-sized brain.
Count me in for hanging in there together. But no bungee jumping on my bucket list! 🙂
All the best,
Dan
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