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In a quandry about what to do next

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Posted 6/18/2013 6:37 PM (GMT 0)
Indications are that my cancer, thought to be easy to fix at the start - (PSA of 4.4, 3 of 12 cores positive, 2 at G6, one at 7 (3+4) - has not been "cured" by HDR brachytherapy. PSA never really went down much in the 1.5 years since treatment and now is up to 5.67

My urologist and radiation oncologist agree that there could be a prostate infection causing the PSA, but the uro doesn't think a month on antibiotics is a good thing due to killing the good bacteria in my system, while the RO says we should start there.

Uro believes the radiation may just not have worked and wants to do another biopsy, but RO says they chances of failed HRD are almost non-existent and thinks that's a bad choice.

I got in touch with the best cancer facility in the mountain west area and they believe that I should start on HT right away. They believe the chances of an infection causing the PSA are remote and surgery is not good after radiation treatment, so start HT. RO thinks we don't know for sure that the HDR failed yet, so it's too early to start HT. I certainly don't want the extra side effects.

Online suggestions have said to get better scanning to find out where the cancer is, and the C-11 Choline scan at the Mayo clinic in MN is the best thing to do next, but the cancer institute says regardless of where the cancer is I'll need to start HT. They also think the C-11 isn't enough better to make a difference beyond other PET scans.

Wow. So confusing. And I thought the original choice of treatment was hard. I could delay HT while I take of month of antibiotics to see if it's an infection, but if that's not likely, why wait? I could do more scans and the next biopsy to see where the cancer is, but with no good options beyond HT to fix it, wherever it is, . . . again, why wait?

Would love to hear your thoughts. I know none of you are giving medical advice, I'm just looking for opinions and ideas. I'm beginning to think I should just slow everything down, do the antibiotics and the biopsy and maybe the C-11 scan and then decide after getting these results, but I hate the idea that the cancer is still growing while I dither away time.

Thanks for your time and thoughts,
Greg.
Posted 6/18/2013 6:52 PM (GMT 0)
I'm really not an expert on this (or much else) so cannot advise you any better than your doctors are advising you.

I can tell you that I read your update and wish things were clearer and easier for you.

I think you're at that fork in the road where decisions get more and more complicated and the potential ramifications more serious. I wish you the best luck possible and the ability to rely on some bonafide expert level analysis to help you choose a path going forward.
Posted 6/18/2013 6:55 PM (GMT 0)
Sorry about the PSA. I would try the antibiotic and get a free PSA blood test and repeat PSA test. Then consider that in any decision. Good luck.
Posted 6/18/2013 6:56 PM (GMT 0)
All I can do is reiterate my earlier response to you that if it were me, I'd be approaching it methodically starting with the least intrusive approach. A PSA increase of 1.2 is below the Phoenix definition of biochemical failure (2 consecutive PSAs over 2.0 higher than nadir), so confirming a clinical failure at this point does not conform to the standard of care. After 15 months, it's quite possible you haven't reached nadir (I haven't yet reached nadir after over 2 years). Brachy is very irritating to prostate tissue, and it is very common for PSAs to bounce around. A thorough course of antibiotics can help rule out bacterial prostatitis. I'd be listening to an RO with experience in HDR who has experience in such things before I'd listen to a urologist who has no such experience. Although what your RO is saying sounds like great advice to me, it wouldn't be a bad idea to increase your confidence by getting a second opinion from another RO with HDR brachy experience (e.g., John Hayes at GammaWest or Jeff Demanes at UCLA) - but why would you take advice from someone who has no experience in such matters?

- Allen
Posted 6/18/2013 6:57 PM (GMT 0)
Syzygy51,

In the (hopefully, if your RO is correct) unlikely event that you've failed HDR, perhaps salvage surgery is an option as potential curative therapy, which HT of course is not. Most surgeons don't do it but their are a few who specialize in it (e.g. Dr. Eastham at MSK). Not sure if it is feasible after HDR failure however.

Good luck.
Posted 6/18/2013 7:03 PM (GMT 0)
I think the advice to consult an HDR brachy expert is a good one. I'd also consider seeing an oncologist that specializes in prostate cancer. I'm biased about my oncologist, Dr Lam here in the LA area, but there are other experts in the country. This is a dilemma you face, so please get the best opinion possible.

I wish you the best of luck on this.

Michael
Posted 6/18/2013 7:21 PM (GMT 0)
Great responses! Thanks very much. Each post is very worthwhile and I'm listening carefully. Just need to think it through.

I'd never heard about "Free PSA", so I Googled and found this:
http://prostate-cancer.org/what-every-doctor-who-treats-male-patients-should-know/
I also found a number of older threads on this site discussing fPSA. Interesting.

Good to have some new ideas to look at and some earlier ideas re-expressed. Makes sense to do the least invasive first as long as the cancer isn't moving too fast. 3.4 to 5.67 in 7 months seems a little fast to me, but the article above says that PSA that is bouncing around is more indicative of prostatitis than cancer.

Thanks again for the feedback and all the support here.
Greg.
Posted 6/18/2013 7:39 PM (GMT 0)
I think the other commenters are giving good advice. A second opinion from another RO with expertise in HDR brachy can help you understand your options better. While you are there you can talk about the salvage options that would be available should a recurrence be confirmed. Make it clear you are not assuming anything but simply trying to assemble options for dealing with eventualities. The information given to newly-diagnosed patients considering brachytherapy goes to some lengths to refute the impression that there are no salvage options when brachy fails. This might be an opportune time to discuss what those options are.

I am not sure I share your urologist's concern for your 'good' bacteria. That is a valid concern, to be sure, but ADT represents a much more significant risk to health and quality of life. I'd do the antibiotics while I am waiting to see if the PSA went up or down.

As for the advanced scans, that'd be up to you. The most likely result would be that the scans reveal a void in your wallet where a couple of thousand bucks used to be, but your insurance might pick up the bill and there is an outside chance that the scan will show something interesting and if that happens the money would be well spent.
Posted 6/18/2013 8:03 PM (GMT 0)
Greg,
Sorry about your recent news. I am a surgery guy so I can't help you, just wanted to let you know I am thinking about you and hope they can give some encouraging news in the coming weeks.

Bill from Florida cool
Posted 6/18/2013 9:42 PM (GMT 0)
Can't offer any technical advice, but wish you the best. I hope it's an infection.
Posted 6/18/2013 10:09 PM (GMT 0)
Not all simplistic stuff and don't we love conflicting opinions even from 'experts'? Maybe Tall Allen could expound on the CTC test (circulating tumor cells blood test), depending upon the number value measured it might be correlated to defining PCa outside the gland, via comparative numerical type data, they have parameters and values expressed (that I don't know anything about at this point). This test is not used to much as of yet, but some have used it and it can be useful towards comparing for disease progression/escalations. Might cost $600-1,000 range, insurance might cover it too.
Posted 6/18/2013 10:47 PM (GMT 0)

zufus said...
Not all simplistic stuff and don't we love conflicting opinions even from 'experts'? Maybe Tall Allen could expound on the CTC test (circulating tumor cells blood test), depending upon the number value measured it might be correlated to defining PCa outside the gland, via comparative numerical type data, they have parameters and values expressed (that I don't know anything about at this point). This test is not used to much as of yet, but some have used it and it can be useful towards comparing for disease progression/escalations. Might cost $600-1,000 range, insurance might cover it too.

Funny you mention the CTC. I just read an articial on that.

http://www.cedars-sinai.edu/about-Us/News/News-Releases-2013/New-diagnostic-technology-may-lead-to-individualized-treatments-for-prostate-cancer-.aspx

Posted 6/19/2013 12:59 AM (GMT 0)
I would do the antibiotic stuff, while consulting with a higher level oncologist, and see what your PSA does after a month or so.

david
Posted 6/19/2013 1:44 AM (GMT 0)
After rethinking....I would do the antibiotic and take a NSAID, Aleeve 440 mg twice daily for 3 weeks then get another PSA. This is certainly less risky than another biopsy or hormone therapy.

Thanks
paul
Posted 6/19/2013 4:35 AM (GMT 0)
Greg,
I hate it when "experts" give their patients conflicting information..I guess that I would have a meeting with the RO and find out if he has seen numbers like yours before. With your low volume and low "G" original stats, my uneducated opinion is that your treatment hasn't failed. Like Paul and most members have recommended have your RO give you an antibiotic and at the same time verify that in his opinion and experience the PSA swings are not unusual..
Who do you trust? Your RO or "horse doctor" that's worried about killing your "good" bacteia? Bracy according to Walsh can be a roller coaster on psa #s..
If your RO is experienced, I'd trust him more than a Dr that did not consult with the other before getting you "hot & bothered" All the best to you!
Bill

idea
Posted 6/19/2013 12:04 PM (GMT 0)
Greg, I'm with Tall Allen on his input - recognizing that none of us here are medical professionals. I would head straight to an RO with significant experience in HDR Brachy - as TA mentioned Jeffrey DeManes is the top of my list in that modality.

Best to you.
Posted 6/19/2013 12:39 PM (GMT 0)
Greg, my opinion, for what it's worth, is to do the antibiotic while you are watching the PSA, as Peter said. I would also trust the RO's advice a lot more than a URO. Lastly, as others have said, get a second opinion form an RO heavily experienced in HDR. From what I have read, HDR failure is highly unlikely, particularly with your numbers.

Robert
Posted 6/19/2013 4:40 PM (GMT 0)
Hearty thanks to all of your for your thoughts and support. I think I've decided on the following:

1. Go ahead with the antibiotic. Least invasive and might work. Re-test PSA in a month.

2. Go see the cancer team in Salt Lake and get opinions and info, including the bone scan they propose. See what the outcome is, but I won't decide to move forward with HT or other therapy until we know more about what's going on, including the results of the antibiotics.

3. Set an appointment next week to also see an HDR specialist to get more data.

4. Possibly to go MN for the Choline-11 scan - depends somewhat I what I find from bone scan, etc.

Not sure yet about the biopsy. The cancer center says it won't hurt to do but they don't think I'll get much from it.

I'll post again once I know more to let you know what we find.

I really appreciate all the feedback.

Greg.
Posted 6/21/2013 2:30 PM (GMT 0)
Hi Greg,
Only just caught up with your thread.
So pleased to hear you are trying the anti'b route first. Fingers crossed it will be all you need. See 'signature', at Jeff's 2 year test his PSA had jumped up. The Brachy consultant felt it was extremely likely to be an infection "very common post Brachy" were his words.
Continued best to you and let us know how you get on.
Susan
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