Extensive Bone Metastasis

Thank you!

Great reply JM99. 

As for the PSA testing. If I had the power, I would mandate it be started when a male turns 40, every 2 years until 50, then annually from then on to 70. This is really the only early warning we males get that the prostate is not happy. Many times it simply proves to be prostatitus. But, other times, PCa. The Governments are saving money by not providing the testing, but at the expense of many lives. By the time they do test, the PSA is off the scale. It is also about men's health education. Males (or their partners) MUST insist on them getting the test done early enough to form a 'normal' base line. Then with annual testing, the PCa, if you have it, only has a 12 month start on you. 

Thank you! Very encouraging. I keep very close records of his PSA and the velocity of change. Over the past 2 years he had his PSA checked every 12 weeks to confirm the effectiveness of the various treatments. Although the PSA is low relatively speaking the rate of change began to increase so we went to 8 weeks and the last was over 4 weeks: from 3.8 to 6. That's also when we had the most recent bone scan. The PSA seems so low compared to so many others yet the cancer is extensive. So confusing. It is great to know he may be able to try XTANDI again although the side effects have been very impactful. Thanks for the information.

Teresa,

My urologist was speaking about a "low" PSA score and aggressive PCa. on my last visit. He said he had a patient with 2.4 PSA (my base figure) But a scary history that was ignored...The guy had a steady doubling up rise in PSA over the 12 month period, and then the later ramping up in the next 12 months sounded the warning bells...A biopsy resulted in Gleason 9. Original doctor did not understand the velocity relevance and focused on the PSA number. Only when it went to 2.4 the guy was sent to my urologist for answers...By now, the PCa had a 2 year aggressive head start on treatment. Apparently, some types of PCa develop very little PCA. But, in most cases, it is the velocity that gives the main clue.

I can sympathise with you regarding treatment. My sister has had a terrible 12 months on chemo. The side effects were so bad, she stopped it after a heart attack and several other 'side' effects. Hopefully, the advice from JM99 will help.

Your point on the doubling of the PSA is spot on.

A rise from say 0.04 to 0.08 is more worrisome that a rise from say 13 to 15.

But many people, doctors included, are stuck with an old mindset that looks at the norminal number and not the rate of change.

teresa - That's good that you're tracking PSA.  Remember that the whole PSA controversy a while back was ONLY about a PSA for screening - not about a PSA for a PC patient tracking treatment success.  So don't let anyone discourage you.

It's also important to track PSA Doubling Time or PSADT.  (PSA velocity is more for a screening PSA).  You can calculate the PSADT online - there are lots of simple calculators you can use. 

What was your husband's Gleason Score?  Higher Gleason Scores have a tendency to make less PSA.  It sounds backwards, but it's true.  That's why tracking PSADT helps, and understanding your PSA in context of your scans also help.  The goal is to understand your own personal PSA.  I used to write the PSA on my husband's bone scan report. It helped me to correlate things.

What state do you live in?

Thanks for the affirmation. His sisters think I'm overreacting and kept saying "but his PSA is low" and I just keep trying to explain what I've read about velocity. I track the numbers on a spreadsheet and graph after every blood test. In some ways it helps me cope by researching and asking the doctor good questions. Prostate cancer is complex and seems to come in about 25 variations from what I've read.

You're doing good.  You cannot judge everything with an isolated PSA alone.  You need to correlate the PSA with imaging, PSADT, and treatment starting and stopping (treatment response).  For me - if I took more PSA's, it helped me to look at the overall picture, and not have a huge reaction to 1 PSA alone.  It was a constant judgment call.

Hi Jan, I saw where you sent me a post, that has since 'gone'? Anyway, I did see it and referenced the site and saw your paper. Very interesting site with good information. When I signed up, it took me to "many" tick-box-info sites.

The sooner the US Government raise the grading for PSA testing to B the better. Though, as you say, this could take a few more years yet.

It gets me so angry to see many guys in serious trouble because either no having a PSA test done due to their ignorance, or that of the doctors active discouregment (as per the grading B) or flat out refusal.

Most males are not too good at going to the doctors. Well guys, That little gland that sits next to your dearest possesion can kill you unless you keep monitoring your PSA.

Jan, on that link you provided, one of the further links to the double side hand out would not work for me. Maybe a Australia linkage issue. Anyway, you should check it. 

Geoff

 

Hi. We are in Texas. My husbands Gleason was 7. I'll look at the PSADT tools. Thank you!

Results:

ResultsDoubling Time = 2.75 month

Doubling Time = 0.23 years

Velocity = 0.01 ng/ml/month

Rereading your post makes me think the whole debate on PSA is irrelevant to your husband. Rising,doubling or trippling is academic.

If a scan shows its gone to the skeleton then hormone therapy or similar is indicated.

 

Agree Barney,

I had written another post, only to scrub it, thinking exactly the same. The message from JM99 seems to be most helpful. This later PSA return is, as already mentioned, an indication of how the treatment is going.

From looking in this and other forums, other people in a similar situation keep rotating treatments and trying new ones so that the pain from the bone metastases are controlled, and hopefully, reduced in size.

Thanks Barney, Geoff, &JM99,

We head out for the first chemo treatment this morning. I'm armed with good questions. If any of you know others with bone metastasis please have them reach out. We understand it's not the best scenario, but I'm trying to gather as much information as possible to understand what he will be facing. Thanks again!

Good luck Teresa. Make sure you/the medical staff monitor the chemo progress. Some things I learn from my sisters chemo cycle debacle:

Make sure the first chemo sessions are monitored closely, as heart problems can develop very very quickly. This is especially with the second or third dose. Sort of like the body is waiting for the poison.

1/2 strength chemo administered slower over a greater frequency seems to have less stress on the body while achieving the same outcome.

Hopefully, your husband will tolerate the chemo ok. There may come a time when he should stop, as the quality of life as he knew it will be immeasurably affected, and there is no going back with some of the outcomes.

Geoff

I agree in the main with you when you say the PSA indicates how treatment is going.

But I feel there is an exception.

Say a patient has other medical issues going on, totally separate from prostate cancer, then it is highly probable that the PSA may be influenced by those medical matters quite separately from how the prostate cancer is progressing or regressing.

Best of luck to your husband. Let us know what treatment is offered, that is, what meds and what duration.

It is crucial also to understand what are the costs and benefits of any treatment. And what are the risks of delaying chemotherapy?

From Teresa's comments, I read it as the prostate is still there after receiving radiation and radiation seeds. My thoughts were the prostate has not been removed and parts of it not nuked will still be producing some PSA. But, I fully agree, the prostate, could be very unwell for any number of reasons causing the rise in PSA. These comments on the Cancerorg...

If the cancer has spread outside the prostate, the actual PSA level is often not as important as whether it changes, and how quickly it changes. The PSA level itself does not predict whether or not a man will have symptoms or how long he will live. Many men have very high PSA levels and feel just fine. Other men can have low PSA levels and still have symptoms.