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Wondering if this is the next phase of my journey

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Posted 1/31/2014 5:14 AM (GMT 0)
Last several PSA readings:
July 2012: 0.02
Sept 2012: 0.04
Feb 2013: 0.04
May 2013: 0.04
Sept 2013: 0.06
Late Nov 2013: 0.09

Saw my radiation oncologist, he believes this is a recurrence, and that the PCa has left the prostate bed and is somewhere else.

Saw my urological surgeon (who also my regular uro), and she is not yet impressed, and won't believe recurrence until it is 0.2 or more.

My T is typically low without supplementation - between 100 and 200, feel like crap. Have been supplementing (under uro's care) since a year after my radiation. Doc says she won't recommend it if my PSA goes above 0.1. However, after hearing about saturation, I am not convinced that being at 100-200 is any better than being at 500-600. My inclination is to either be completely suppressed, or get to normal levels (500). She assured me I would feel more like crap with a T below 20 than I do at 120. She did say that if I were to want to supplement once recurrence is confirmed, we would need to have a long talk before she would endorse that route.

Any thoughts on whether I am on the next phase of my journey, or is this deliberation super-premature?

I think if I go along with the standard approach (assuming it goes up to 0.2 or more), I would drop off the T supplementation within the next year, and then see my levels drop to the 100-200 range. I would probably sit there for a few years while the PSA slowly rises, and then when it gets above 1-2 range, start hormone therapy.

It is impossible for me not to think ahead (I am just that way), although I am not particularly depressed about all of this yet, and still hope for this to be a blip. Since I was given a 50% likelihood of recurrence after the SRT, I have always been suspicious that BCR was in my future.
Jeff
Posted 1/31/2014 5:52 AM (GMT 0)
It's still early in the game but it's a worrying trend. In you're place I'd wait for specific triggers and then act. Like you mention, at .1 I'll stop the supplementation and at X, I'll do some else. That kind of thinking might be worth it.

It's good to have a plan, you might be a little premature but you've got one medical for and one against. Have you seen a medical oncologist? Might be worth getting another opinion or two before deciding what to do or what your triggers will be. I don't think it's too early to be getting more information. Might be too soon to act.

Andrew
Posted 1/31/2014 6:24 AM (GMT 0)
I believe in what your RO said. After SRT, there should never, ever be any increases, no matter how small the rise. There is no "bounce" with SRT as there is with RT as a primary treatment.

You have early signs of having your second BCR occurance. It's still small, and needs watching carefully. This is what I have been doing since both my surgery and SRT failed. However, my PSA was at 80+, and still no signs of mets anywhere.

David
Posted 1/31/2014 5:21 PM (GMT 0)
Do you think standard protocol in your situation is hormone therapy when psa is 1-2? My husband is in a similar situation (not the low T, but the possible failed srt) except that his psa readings are already a little higher. One oncologist told us hormone therapy closer to 10. Is there a "standard" first line of hormone therapy?
Posted 1/31/2014 5:28 PM (GMT 0)
I agree it looks like another BCR. But no point rushing into HT. You can wait until your PSA gets to 5-10. I hope David is not advocating waiting and doing nothing despite a PSA into the 80's.

Mel

Posted 1/31/2014 6:00 PM (GMT 0)
Looks like BCR to this layperson, but the doubling time is just over 10 months, so that at least that part of the picture isn't too frightening. If the PSA kinetics are stable, you will hit 1.0 in a little over a year from now, and the 5.0 mark in early to mid 2016. Your next check should be in late February or early March, correct?
Anyway, I wish you well. I think Walsh said that there is no reason to rush into HT at the first sign of recurrence, but he also said it's best to get started before mets are detected.
Posted 1/31/2014 6:44 PM (GMT 0)
At this stage, once you start HT, do you ever go off? Or is it continuous until it doesn't work?
Posted 1/31/2014 6:58 PM (GMT 0)
Im_Patient,

Were your pelvic lymph nodes treated as part of your SRT? Can they be treated now, or was the dose there too high?

- Allen
Posted 2/1/2014 2:32 AM (GMT 0)
Melg, I was throwing that PSA 1-2 out there for feedback, don't really know what level would be right to start HT. Maybe others will weigh in on HT. My understanding it there are various methods, some stay on until you are castrate-resistant, others modulate between T and no T, etc.

Galileo, my next PSA test is in a few weeks, because doc wants a T/PSA test before giving me the Testopel in March. Testopel is scheduled at this point, but will be called off if the PSA is 0.1 or higher. If I am at recurrence, with a 6-10 month doubling time, I might see 0.1 then.

I know some will say that I should hold off on the testopel, but I'll follow my uro's advice. My point of view is that I am not convinced that a T level of 500 is any worse than 150.
Posted 2/1/2014 3:43 AM (GMT 0)
I did ask an oncologist about testosterone levels because my husband had not been tested. I asked if it would help to lower it to a smaller amount. His answer was the same thing you are noting that basically it's sort of all or nothing. Lowering it to "sort of low" levels doesn't do anything. You need to lower it all the way for impact. So the opposite is probably true. If you are raising it to moderate levels, it's probably no different than leaving as is.
Posted 2/1/2014 4:51 AM (GMT 0)
Thanks for the data point, melg
Allen, they irradiated the prostate bed only - there was no evidence they needed to do anything else. I believe there was PCa there (even though they believed I was negative margins) since my PSA dropped so significantly.
Are you suggesting they treat pelvic lymph nodes now? That seems like a stretch to me, but if it were a chance at a cure it would be interesting.
Posted 2/1/2014 8:08 AM (GMT 0)
Im-Patient

Maybe. It's worth discussing with your docs at any case. Lately, I've been reading a lot about irradiating the entire pelvic lymph node area. Like everywhere else, dose escalation seems important for success. Patel at UT San Antonio has pushed it as high as 54 Gy with IMRT with few SEs. 45 Gy seems to be enough for suspected LNI, especially when there may have been some "overspray" from your SRT treatment. When LNI has been proven by lymphadenectomy or advanced imaging, they may want to bump that up to 50 Gy.

I discussed this recently with my favorite RO. He thinks that there are often micromets in multiple pelvic lymph nodes that are too small to show up in a C11 PET or a USPIO MRI. His feeling is that with the incredible precision of IGRT these days, why not treat the entire pelvic area in high risk cases rather than treat just isolated nodes, since it can probably be done without hurting the bowel tissue? In his new protocol, he will be using SBRT (5 treatments of 5 Gy each, biologically equivalent to 46 Gy with IMRT) to target that area. Sunnybrook is starting a similar clinical trial. The use of SBRT for this is very new and has only been done a handful of times with no long-term data. It offers the opportunity to escalate the biologically effective dose without increasing toxicity (hopefully). Results may be improved by 2 months of neoadjuvant ADT before treatment.

Another option is to wait for PSA to rise above 2 and look for mets with one of the advanced imaging techniques, and treat those only if there are 5 or fewer. My RO argues that if he can keep the SEs to the bowel low, there may be benefit and little risk to treating all of them.

Something to think about.

- Allen
Posted 2/2/2014 3:52 AM (GMT 0)
I might bring this up to my RO - he is a real smart cookie.
I'm curious if the insurance would buy in - or if they would need evidence of LNI first.
Posted 2/2/2014 4:59 AM (GMT 0)
Allen, it is not clear to me but I think that the study you pointed me to just compared those like me, who got a shot only to the prostate bed, versus those that were irradiated to the whole pelvic lymph node region. I am not convinced this indicates that you would be able to irradiate that region after having had the full 80 Gy dosage to the prostate bed. Am I reading it incorrectly?
Posted 2/2/2014 5:57 AM (GMT 0)
You are reading it correctly. There have been several trials with whole pelvic RT during initial treatment of high risk men that seems to add to its effectiveness. Even this is controversial. To my knowledge there has never been a trial where they went back afterwards (either after initial RT or SRT) and treated the pelvic nodes as salvage. You would be breaking new ground, and I'm sure your insurance would balk. I'm just sort of thinking out loud and out of the box about options I would consider exploring with my RO if I were in your situation.

The other option is to wait until your PSA rises above 2 and check for enlarged pelvic nodes with an MRI, which insurance will probably cover. Out-of-pocket options include detection with C11 PET, USPIO MRI or FACBC PET. They could then treat suspicious nodes and some in the area with SBRT.

- Allen
Posted 2/2/2014 1:01 PM (GMT 0)
My docs are aggressive with intermediate and high risk PCa. They are not the "wait and see" and treat sequentially type. They advocate getting ahead of the cancer rather than continually playing catch up.

They believe the cancer is usually worse than the biopsy or pathology indicates. They also like adjuvant treatments, like Myers, saying that it is better to hit it from multiple directions simultaneously. They believe they get longer and more durable remissions by this methodology. They sound more in line with your ro than with your uro.

I second the motion that it appears to be a good time to get a very good med onc on the team. This stuff doesn't get better on its own and you are a young guy.
Posted 2/27/2014 7:33 PM (GMT 0)
Last several PSA readings:
July 2012: 0.02
Sept 2012: 0.04
Feb 2013: 0.04
May 2013: 0.04
Sept 2013: 0.06
Late Nov 2013: 0.09
Last week (mid Feb 2014): 0.07

I'm breathing a bit of a sigh of relief after higher-than-usual PSA anxiety.
I know there might still be a trend here, but at least the doubling time is longer, at best the high mark or two are blips that are statistically insignificant.
It enables me to be able to get my next dose of testopel without a long conversation with my uro.
Jeff
Posted 2/27/2014 7:50 PM (GMT 0)
Jeff, I'm glad the Feb results came back to your liking. Sounds like all is well to me!

Jim
Posted 2/27/2014 9:00 PM (GMT 0)
Jeff,
Congrats on your PSA. Go celebrate!

Bill from Florida cool
Posted 2/28/2014 1:41 PM (GMT 0)
I've posted frequently but think it may be time to get some other opinions than my surgeon's.
I am age 70, stage pt3b after RP with SVI,pos margin, and EPE , gl 7 at margin gl9 in prostrate and presumably SVs. 2 month post op psi was .1, 5month was .2.
My surgeon has not recommended further treatment yet. I suspect he is waiting to see next reading May 1st. Since I had SVI, he said that HT before SRT would be next as RT alone is not effective according to studies.
As an aside, I took androgel for low T for ten years before being DXed with PCa and my T level was in 700s. I don't know what my T level is now.
What is the trigger for additional treatment different any?
Bob
Posted 2/28/2014 1:43 PM (GMT 0)
Last sentence should have read " if any" not "different".
Bob
Posted 3/2/2014 4:53 AM (GMT 0)
Thanks, guys
I don't tend to be an overt worrier but this last test was harder than most.

Bob, my T levels tend to be low (just measured at 134, at 5 months after testopel), and of course I was not supplementing while I had SRT. I had no non-natural HT during SRT, but my rad onc mentioned that because my T is unusually low, that likely helped the success of the SRT. If you opt for SRT, although adjuvant HT is supposed to help, you might get some help just by avoiding supplementing during the SRT.

It sounds like you would be a good candidate for SRT, but they usually like to wait if they can to make sure all of your incontinence symptoms are well behind you before you start.

Per my signature, you can see I started SRT at about 0.4 PSA, although I decided at 0.3.
Posted 3/2/2014 2:09 PM (GMT 0)
I stopped T supplementation when I was Dx'd . I had ten nodes removed all negative with my RP. Protocol for RT per Johns Hopkins is two successive PSA readings of .2. But with SVI, studies have shown that RT is of no benefit unless ADT is implemented first. I don't know why this is the case but outcome data say it is. My prostatr had already been shrunk down to 33g by finasteride and I suspect that my T level is in the 200 range which it was before using androgel. So if my next PSA reading is .2 or higher I guess I'll be on the Lupron train for three months before starting SRT. I have no incontinence problems bye the way.
Bob
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