Troubled....

[cajun1949]

It's been 15 years post op for me. Back in '08 my PSA on 02/07/08 was 0.04.... Six months later 08/11/08 was 0.10, and so forth to ... My present PSA on 11/08/16 is 0.41.... I go back on 03/08/17 for another PSA and will find out results week later on the 15th.. I'm not looking forward to this visit. I've been having lower back pain and feeling tired for some months now. My Doctor did mention salvage radiation few years ago. I'm not sure if I'm going to have it or just watch and wait. My kids have been pushing for me to have the treatments. I am very hesitant to have them done. I lost my younger brother year and half ago from brain cancer. He also had prostate cancer and was doing so well.

Being retired, I would go stay with him and his wife in Atlanta for 2 to 3 weeks at a time, come home for a week to take care of business then go right back. It was a beautiful bonding time. I also watched as he took the radiation and how he suffered through all the pain, just to die in 6 months. Verdict is still out on me taking radiation.

The pump {AUS800) and pee keeping me dry, my kids, and grandchildren and family are the only things keeping me happy these days.

[Roger2Dodger]

Seems to me your PSA hasn't moved that much. I don't know your age, you indicated Grandchildren, so you are an elder person. Your back pain could be related to something else.

My advice get your PSA on March, and cool it. I personally don't think you should be worried at all. I would think twice getting more treatments. You hsvr done just fine for 15 years.

[cajun1949 in reply to Roger2Dodger]

Thanks Roger2Doger for your reply... Oh I'm 67...

But having grandchildren doesn't make you old. I was a grandpa at 45.....

[AlanMeyer Moderator]

Cajun1949,

I think Roger2Dodger is right that it is unlikely that your back pain is due to the cancer - unless you've got that relatively rare kind of prostate cancer that produces very little PSA. Furthermore, your PSA has gone up by a factor of 4 in eight years. If it progresses at the same rate, it will reach .82 at age 75, 3.3 at age 83, 13.2 at age 91, and start to become significant at 53 at age 99.

However, having said that, I'll also say that cancer mutates as it grows and it can become more aggressive over time. If you live another 20 years, it could possibly be a danger to you.

So what should you do? I can think of three possible approaches:

1) Watch and wait.

If you do that, you need to have a plan for how to watch (how often to get PSA tests) and for what you are waiting for. For example, your plan might be to get salvage radiation if the PSA goes above 1.0, or to get ADT if the PSA goes above 10, or get light hormone therapy (see option 3 below) if the PSA goes above 1.0, or whatever. You don't have to stick to the plan. If the PSA goes up to 9.0 in one month you don't want to wait for 10.0 to get started on treatment. And if it takes ten years to reach 1.0 you might decide to do nothing until it reaches at least 2.0. But if you have a plan, you at least have some ideas about how to look and what you're looking for.

2) Get salvage radiation.

If you think you'll ever want salvage radiation, the best time to get it is sooner rather than later. The longer you wait, the less likely it is to work. Incidentally, although the radiation does produce side effects, probably including finishing off any potency you still have left after the surgery, it should not involve any serious pain. You may possibly get painful hemorrhoids and you may get sunburn like effects on the skin, but those are easily treatable will probably go away in a few weeks after the end of treatment. I also had trouble urinating after radiation and had to take Flomax for several months, but it wasn't a terrible problem and you may not have that at all since you don't have a prostate to swell up and clamp off your urine flow. If you get radiation, you want someone good to do it. Just like with surgery, you don't want a screw up with x-rays.

3) Start some hormone therapy.

You could try something very light - maybe Avodart alone, or maybe something like 50 mg of Casodex (a single pill) per day, or maybe an estradiol/estrogen patch. It might be all you need to hold down the cancer for years more without producing the hot flushes and loss of energy of the Lupron/Zoladex/Eligard type drugs. I suspect your libido could take a hit from some of those drugs, but not the big whack that Lupron produces.

In order to choose any of those approaches, including choosing watchful waiting, I think you should consult an expert, i.e., a medical oncologist with a specialty in prostate cancer - not a urologist and not an oncologist who treats all 300 kinds of cancer and doesn't keep up to date specifically on prostate cancer. If you haven't got a person like this already and can't find somebody close by, I recommend checking out the National Cancer Institute list of Designated Cancer Centers. See:

cancer.gov/research/nci-rol....

My final thought is that, whatever happens, I don't think you're likely to die of prostate cancer. But you want a plan to make the odds in your favor as high as possible.

I hope that helps rather than just confusing everything for you.

Good luck.

Alan

[cpcohen]

Alan's thinking is solid.

There's one thing he left out:

. . . If you have external-beam radiation, what will be irradiated?

With a PSA of 0.4, I think that metastases (if they exist) will be too small to find with normal bone scans.

So the radiation will probably be directed to the "prostate bed" -- that is, it'll be used as a shotgun. If the PSA is coming from cells there, it'll be effective. If it's coming from cells elsewhere (metastases), it'll be useless.

. Charles

[Hidden]

"Your kids" are pushing for SRT? What do they know? Have they devoted many hundreds of hours to studying the medical pros and cons of salvage radiation? Have they plugged your "numbers" into the MSK SRT nomogram at

mskcc.org/nomograms/prostat... ?

SRT is some serious stuff. It's not something we do "because we have PC and our back hurts". Chiropractor? Sure ... but the first questions s/he should ask are "Have you ever been diagnosed with PC" and "What's your PSA?" I had two entire teams of major cancer research center oncologists insisting that I undergo SRT. They wanted to blast my prostate fossa/bed with a nuclear SRT shotgun IN CASE it found the source of my rising PSA. I had a novel idea: find the damned source FIRST and THEN treat it. (Sheesh! What a concept! The Mayo Clinic's Dr. Eugene Kwon does that for a living and calls it whac-a-mole.)

I bought a cheap laptop and dedicated it just to performing, organizing, transporting, and showing my simple copy-and-paste SRT research to those teams. I read and summarized >300 published SRT studies, including the very studies one team cited, into >100 HIGHLY condensed pages of notes proving them wrong IN MY CASE and in my opinion. I wound up with 21 medical reasons in my column, zero in theirs. My decision has since been validated by three nationally renowned radiation oncologists/radiologists at the Mayo Clinic and Seattle's Fred Hutch.

I have no medical training. Much of what I see in those studies goes in one ear, turns south, and is expelled within a day. But I get enough from the plain English parts to make sense of most of them, and it's amazing how many times I find studies even these fine oncologists have not seen (just as I'm finding with chemobrain). I even found one important typographical error the medical journal peer-review process had missed, which further made my case. It wasn't my brilliance; it was my confusion and its relevance to my case that uncovered the error. The longer I scratched my head, the more I realized the problem was theirs, not mine.

So now I've hinted at three places to start.

• A chiropractor, if your oncologists can assure her she won't snap any bones.

• SRT, IF:

1. The MSK SRT nomogram offers an acceptable chance of benefit (it gave me two thumbs down).

2. Your PSA is between 0.2 and 1.0, preferably <0.5. Beyond about 1.0, our SRT window of opportunity closes rapidly.

3. High tech scans such as c-11 choline, etc. cannot find any mets anywhere outside your old prostate bed.

4. You want to gamble your health on the presumption these rad oncs just love to make ... that your cancer is in the old prostate bed.

5. Lower abdomen CTs show no reason to suspect your internal organ layout precludes SRT. Mine clearly and irrefutably showed that SRT would do me zero good and vast harm because my bowel and bladder were jumbled together near the old fossa and my lymph node field was inaccessible to SRT. Why is that relevant to the next guy? Because it's not an unusual problem.

• Whac-a-mole, if:

1. Your PSA is too high for SRT.

2. #5 above.

3. Scans CAN find mets outside the prostate bed. That is possible by about PSA > 2 or so, much more likely at 10 or 20 (my scans were negative at PSA = 25, and they found a few specs (lymph nodes) at 35.

4. You are willing to gamble on bypassing SRT in the hopes of finding a tumor or two easily treated in an hour with a knife, a pinpoint radiation beam, or a laser, followed by years of remission. It happen often, but there are no guarantees.

I'm guessing that if you have a bone met you can feel, a high-tech scan such as a c-11 choline PET/CT (there are valid competitors) can find it. I can't imagine blindly accepting even the guaranteed SEs, let alone the less likely but still common SEs, of 35 SRT blasts to my guts before trying one, simple, nothing-to-lose-everything-to-gain scan with reasonable hopes of finding out what's actually going on in my body before treating it. The biggest risk of the scan is dozing off. It's boring and silent, but if you doze off and move, it will blur the images. They watched my breathing very closely, and constantly told me to wake up when their trained eyes and ears implied I was about to nod off.

Doesn't that beat the HELL out of trying obnoxious drugs, all of which WILL have some SEs? Not always, come to think of it. If a 28-day dose of ADT relieves the pain (you might ask for Firmagon, because Lupron's 400% T surge could REALLY hurt), you identified the problem (a met outside the soft-tissue fossa) and avoided a (possibly lengthy) trip to a scan center.

HOWEVER ... I just looked more closely at your PSA history. Your PSA DT looks a lot like 4 years. Lessee ... 0.4 X 2 X 2 X 2 X 2 X 2 X 2 puts your PSA at all of 25 in 6 doubling periods ... 24 years. Virtually nobody feels PC at a PSA of 25, and you'll be ... what? ... a hunnerd years old? I'd consult a chiropractor to see if s/he can find a problem, start conditioning your core (no, NOT situps or crunches), and start getting some serious whole-body exercise. That's highly likely to boost your energy dramatically, and if done right (consult a physical therapist or family gym trainer) will likely fix that back right up. Our backs are SUPPOSED to hurt if we neglect them. Unless yesterday's PSA was BIG, that's what I'd do.