Wednesday, May 10, 2017

More Than Just A Number

I was expecting to get my new PSA number sometime during the day yesterday, but it didn't come in until after 10:00 PM last night. Don't they know I've been asleep for two hours by then? So I had the privilege of seeing it to start my day today. It's up, from .06 to .35.

This is still a very low number, not even into whole numbers yet. If you take the number by itself, it's great. But it's a big increase from where it was. Proportionally, it's more than five times what it was before. That's cause for concern.

My oncologist says that, at this point, it's more about the trend than the actual number. One rise does not equal a trend. But two would. The last time this happened, when Lupron alone started failing me last August, my oncologist wanted to wait a month and test again, to see if it's just random fluctuation, due to the fact that I still have my prostate gland continuing to produce the PSA protein. The hope was that the number would go back down, and we could stay the course for a while longer. But if you were following along at that time, you know what happened.

After a month, my PSA rose a second time, by a larger margin. That's when a new bone scan and MRI were ordered, and when metastasis to my spine and ribs were found. That's when I officially became Stage 4. At that point, we added Xtandi, which pushed my PSA down to the insanely low levels I've been enjoying since.

So I expect that my oncologist will want to do the same this time. Wait for a month, and test again. If the number goes back down, we're still good. If not, we've got a big problem.

My oncologist said when we started that he didn't know how much "mileage" (his word) I'd get out of Xtandi. But I certainly expected to get more than a few months. I've only been on it since the end of September. If this is more than random fluctuation, Xtandi was only effective in keeping my cancer under control for seven months. Less time than I got out of Lupron. This can be a pattern with very aggressive cancers. Each treatment gives you less time. My doctor calls it "burning through" treatments.

One thing I've heard from fellow patients, their caregivers, and from friends is the PSA is just a number. I shouldn't be bound by it, or defined by it. I shouldn't even think about it. Just live my life. Here's the problem with that for me. I understand that there are cases where the PSA number seems to bear no relationship to the progression of a patient's cancer, or in how they feel. But that's never been true for me. For me, the PSA has always been a very reliable indicator of the state of my cancer. When my PSA has been rising, my cancer has been advancing. When it's gone down, my cancer was shrinking. So I can't disregard that number. It's impossible.

I'm not one who stresses about each PSA test. I was fine yesterday. I'm just shaken up by the news today. But though I was wasn't worried, I did have a feeling. I've learned to trust my feelings in this process. They've rarely been wrong. And when my feelings have been wrong, it's been because they were overly optimistic.

I can think of one possible reason the number went up. When my PSA crashed to such low levels, I was on a full dose of the cannabis oil suppositories. For the past month or so, I've been on a lower, "maintenance" dose. I can't help but wonder if my cancer started growing again the moment I went to a lower dose. I'll ask about that tomorrow. It's the only variation that's taken place in my treatment that might explain it. So, assuming my doctor wants to wait a month and retest, if my PSA rises again, I think I'll try to go back to a full dose and see what happens. It's just a matter of paying for it. It's not cheap, and insurance doesn't cover it.

I'm trying not to blow this result out of proportion. Hopefully, it will go back down in a month and everything will be fine for a while. But I'm prepared for the opposite result, and for what it means. I won't go there in this post, other than to say that it feels to me like confirmation that the shorter prognosis I received back in September, when I wrote Life Expectancy, was correct.

This is probably completely unrelated and coincidental, but my left shoulder has been bothering me lately. It hurts when I move it in certain ways. I can't do upper body exercises when I work out. I can't sleep on that side because it hurts too much. It hurts to drive. For those who don't know my history, when I was first diagnosed, an MRI showed a suspicious spot on my left upper arm bone. It was later determined by several experts not to be cancer. It was thought to be some kind of benign tendonitis thing. But cancer couldn't be completely ruled out.

The telltale image from that MRI of my left shoulder

Now it hurts all the time. So I'm gonna say to my oncologist when I see him tomorrow, "You know this shoulder that you thought might have cancer, and decided it didn't? Well, it really hurts now." I wonder if the combination of pain in the shoulder that was the cause of so much concern a year ago happening right at the same time as a rise in my PSA will be enough for him to order a new MRI of that area to see what's going on. Or maybe, when I describe the symptoms, he'll think it confirms his tendonitis conclusion, and refer me to the right doctor for that. We'll see.

I was going to tell you about my last visit, when I got my blood draw and saw both a dental hygenist and my nutritionist, but it doesn't seem to fit in this post. I had a really good joke to add to that part too. But I don't feel much like joking today.

So much for my first birthday wish. It wasn't for a low PSA number, if you remember. The number is still low. My wish was that it would go down or stay the same. Instead, it went up by a factor of more than five.

I'm glad I get to see my therapist this afternoon. That will help a lot. I'm glad I have friends who I can talk to. And I'm so blessed to know that you're reading this right now. Your love and support makes this journey much easier.

It's easy for a prostate cancer patient to feel captive to that PSA number. No matter what the state of our cancer is, whether we've had surgery and our cancer is considered "undetectable" or we're Stage 4 like me, we're still subject to that test at regular intervals for the rest of our lives. And every time, we fear that number will rise. Don't tell me it's just a number. It's been too reliable in showing whether my cancer is advancing or retreating. I just hope this time is an exception. #waroncancer


  1. I have some folks in my circles that need to hear "don't tell me it's just a number". I don't walk in your shoes, but I do know the feeling of a rising PSA. I'm not sure what your doc will say but I like your thinking around increasing the oil. Here if you need me, my brother.

  2. Let's hope that PSA number is just a bump in the road.

  3. Indeed. My PSA has been rising slowly for the last year, .2, .5, .7. Even other PCa patients scoff, saying "Hah. That's a low number, why do you care? I wish mine was that low!". Sigh...

    It IS the trend, not the value; I feel your concern. Though you are a good deal further down the road, for what it's worth I understand to a more-than-average degree.

    Your run on Xtandi sounds pretty typical from what I've heard; though let's hope it keeps going for you! Have you done Zytiga yet? It's the other major 2nd line hormonal. Or chemo?

    1. Thanks for your comment, Jerry. No, I haven't done Zytiga, nor do I think I will, do to the fact that it requires Prednisone along with it. I won't do chemo either, for personal reasons.