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Posted 1/18/2018 12:43 PM (GMT 0)
Current age: 50
PSA History:

6/14 - 4.26
2/15 - 4.54
9/15 - 4.24
1/16 - 7.06
8/16 - 5.05
9/17 - 5.55

2015 first biopsy found HGPIN
2015 second MRI fusion biopsy found PIRADS 3 suspicious lesion, no cancer
2016 MRI fusion biopsy found PIRADS 3 Suspicious lesion, no cancer

Free PSA has gone down from 10% in 2014 to 7% in 2017.

I like my urologist but I'm beginning to think I need a second opinion. I feel like there is something going on but that there's something he's missing. He recently did a Rezum procedure (last September after the PSA test) to open up my "enlarged" prostate (only 30cc) and now I am unable to ejaculate 4 months post procedure. This was NOT supposed to be a complication of this procedure and when I mentioned it to him he said it's not something he's seen from this procedure before and said to monitor it for six months. He's already told me he wouldn't do another biopsy unless my PSA goes above 10. I was fine with this plan until this "messy" procedure and his clumsy explanation of the results. Now I wonder if maybe he's been missing something important or not being thorough enough. I'm interested to hear other men's opinions. Am I over-reacting or would you suggest I pursue a second opinion?

Thanks!
Todd
Posted 1/18/2018 1:05 PM (GMT 0)
I would get a second opinion, it took 8 biopsies to find my cancer and until my psa went over 10 my urologist would always tell me he was confident if I did have cancer it was confined to my prostate but once my psa went over 10 he said he could not say that. I'm not trying to scare you just that if you do have cancer finding it early is the key. I just took my 4th year (since surgery) psa and it was undetectable. Theres a book by Patrick Walsh (John Hopkins) "guide to surviving prostate cancer" that breaks everything down. Again I'm not trying to scary you-you very well may not have cancer. In this book theres a analogy that most cancers grow like a weed on your lawn but prostate cancer grows like small clovers and that is why it can be hard to find. Good luck Todd don't assume you have cancer but staying on top of it is the smart thing to do as long as you have the right doctor.
Posted 1/18/2018 1:07 PM (GMT 0)
I think it is absolutely critical to have full confidence in your Uro. I shifted early on and what a relief. Denis
Posted 1/18/2018 1:27 PM (GMT 0)
Todd - I'm no expert here, since my cancer was detected at first biopsy, but your experience would shake me up. I'd second the motion to get a second opinion, specifically from a uro who does care for a lot of prostate cancer patients. A consistently high PSA (especially for your age and prostate size) with no cancer found would make me suspicious. If the PSA was elevated due to prostatitis or infection, it would vary up and down, usually by large increments. If your uro has accurately sized your prostate at 30 cc, the PSA level is above the norm for that size gland. Adding on top of that the fact that your free PSA is low and has dropped makes me even more suspicious.

Remember, I am NOT a medical professional of any sort - just another patient. That said, though, I would suggest that you consult another uro who sees a lot of prostate cancer patients and discuss your history, PSA data, biopsy results, etc. Maybe ask the new uro if they think a template-mapping biopsy makes sense for you. (This is a biopsy done under general sedation where they take many more samples from literally the entire prostate gland to see if there is cancer hiding where the typical trans-rectal biopsy tools can't reach.)

It sounds like a lot to go through, but with your statistics, you need to know for sure what is going on. Don't worry about treatments yet, as you don't know if you have cancer or just some very unusual statistics. You need to keep looking to prove what's what, because your PSA history could be trying to tell you something that the uro is missing.
Posted 1/18/2018 1:59 PM (GMT 0)
Hi Todd - you may like ur urologist but you are already having doubts early in the game so no matter what happens you will always be wondering n 2nd guessing yourself. Find the best urologist in your area and pay him a visit. I only had 1 consultation with my 1st urologist then switched to the mayo. Wish you the best


Larry
Posted 1/18/2018 3:01 PM (GMT 0)
Todd,
In your own words, "messy procedure, clumsy explanation, not doing another biopsy until PSA is above 10". Whats he waiting for? Better question is what are you waiting for? Find yourself another URO and get another biopsy done as the posts above have suggested. If you are that uncomfortable with this URO, change. And don't wait.
Best of luck
Posted 1/18/2018 3:13 PM (GMT 0)
Thanks so much for your input guys. I am going to call for a second opinion this afternoon. I was trusting this uro until this last procedure and I was not happy with his lack of knowledge. I recently had a friend diagnosed with PCa with much less alarming numbers than mine and it made me question the lack of aggressiveness of this uro. As unpleasant as biopsies are I would rather know than not know. I'm not jumping to any conclusions. I've been dealing with elevated PSA for five years and I'm not easily alarmed.....but I do want to be proactive in my own health/healing. I appreciate the help and advice. You've all helped a great deal.

Todd
Posted 1/18/2018 3:15 PM (GMT 0)
I guess you are concerned by the low free PSA and the borderline PSA density. Although your PSA is not too high and more or less stable along the years, these derivative parameters may suggest a low risk disease. It is important your degree of confidence in the quality of your mpMRIs since they do not indicate anything significant.
It does not hurt to have a second opinion. If you plan to be aggresive in the case of a low risk cancer diagnostic maybe you need a template biopsy with many cores. But if you would be happy with AS you should consider that the tests your urologist has been prescribing are somewhat similar to an AS "treatment" even though you have not been diagnosed. It is a pity he does not want to follow the same course in the future. Because, in any case, I would not wait to have a PSA>10. Nobody should do that except when prostatitis is clearly apparent. Your situation is now a bit confusing but you do not have any reason to be very worry.
Posted 1/18/2018 3:57 PM (GMT 0)
Todd,
I am far from expert here, but I agree with all above, especially what Paxton said. To paraphrase, a wise man once said "seek (a second opinion)and you will find"
Take care, keep us posted.
Wings aka Dan in cloudy So cal
Posted 1/18/2018 4:07 PM (GMT 0)
It's really not that I'm worried as much as I am frustrated. I'm fine with an AS approach as long as I think we are actually surveilling something. Not only has he stated that he won't do another biopsy if the PSA is under 10 I had to ask for my last PSA test a year after the previous one. I'm not sure how he plans on keeping tabs on the PSA if he won't order the test without me asking for it. Again, after my appointment last week he didn't order my PSA for this summer. I would have had to ask him to order it. Very frustrating. I shouldn't need to ask for my own tests. I think once a year is a fair interval between PSA tests at this stage..
Posted 1/18/2018 8:16 PM (GMT 0)
I can suggest an alternative approach. There is a genetic test called Confirm MDx that can give you assurance that your negative biopsies are true. You may be able to get it for free because the manufacturer is trying to build their database:

/www.healingwell.com/community/default.aspx?f=35&m=3967754

I'm unclear about just what it is that you want to get a second opinion about. You've had 3 negative biopsies. You can confirm that the cores were indeed negative wit Epstein at Johns Hopkins, but it's doubtful that they would upgrade.

Although your prostate is not enlarged in its outer dimensions, it is obviously pressing inward and causing blockage (possibly, BPH was noted on your biopsy report).That will elevate your PSA (which is not specific to PC). You might see if Proscar or Avodart brings down your PSA. It should reduce the PSA caused by your BPH. But if the Rezum procedure was successful in getting rid of your urinary retention, you can just live with the PSA in the knowledge that it stems from benign causes.

I don't know about the Rezum procedure, but sometimes such things cause scar tissue that block the seminal vesicles and cause retrograde ejaculation (alpha blockers can cause this too). While the lack of full disclosure about possible SEs from the procedure is certainly a problem, I don't think his advice to wait and watch is bad advice.
Posted 1/18/2018 8:46 PM (GMT 0)

Tall Allen said...
I don't think his advice to wait and watch is bad advice.


But would you wait till PSA>10? If genetic testing confirms the negative biopsies, what should Todd be watching for?
Posted 1/19/2018 4:27 AM (GMT 0)
Saipan Paradise-

If Confirm MDX confirms the negative biopsies, that means he has a reasonable benign explanation for his PSA. I don't think he needs another biopsy at all if that's the case, and really, there is nothing to watch for. He had his highest PSA after his Rezum treatment, which explains his sharp increase recorded in January. Ignoring the treatment-related PSA, his PSA has the steady creep characteristic of BPH. If he likes, he can take some Avodart to see if his PSA goes down after a few months on it, which would be diagnostic for BPH. But if he is still peeing OK, I don't think he really needs it.

If he does not get the Confirm MDx test, he still has 3 negative biopsies, and I think he should take "no PC" for an answer. Then if his PSA gets high (above 10), he can think about whether he wants a template mapping biopsy for his peace of mind, or whether 3 biopsies is enough. There is less than a 1% chance that all 3 biopsies (2 of which were mpMRI-targeted) missed anything significant.
Posted 1/19/2018 11:29 AM (GMT 0)
Just to clarify. My last PSA was done a week before the Rezum procedure.The highest PSA was drawn during a regular series of blood tests in 2016 that I didn’t realize would include a PSA test so I had sex the night before which could account for part of that 7 spike.

I think I’m questioning my doc’s competence as much as his judgment. If he damaged my seminal vesicles during a procedure with a record of 100% restoration of sexual function how accurate can I trust those biopsies to be? Also, he missed the target for the prostate nerve block causing extreme pain during that procedure. It’s been touted as a mostly pain free procedure.

I have an appointment for next week to go over my past results with a different urologist. I’ll mention the test you suggested. If he concurs with my last doc on his findings I’m happy to continue to keep a watchful eye on this. I have no reason to question the pathology reports or the PIRADS classification of the lesions found on MRI.
Posted 1/19/2018 5:45 PM (GMT 0)

ToddOhio said...
It’s been touted as a mostly pain free procedure.

Hello Todd,

Nothing really to add to your questions about your situation but as another guy in Ohio (Cleveland) I wanted to say "hello". Also I assume in your quote above that you were talking about the biopsy as being referred to by the doctor as "most pain free". The urologist told me that it was possible that I might experience a mild sense of pressure during the biopsy but assured me that no pain blocking/numbing was required. I have now been through allot in PCa treatments including having a 14" needle inserted in my upper butt muscle and threaded through my pelvis to sample a lymph node located near my small intestine/rectum. I have to say, out of everything I've been through so far, the absolute worst pain I have ever experienced was that freaking prostate biopsy. Every one of 12/13 needle hits hurt a bunch. When it was finally done, my shirt was soaked through with sweat and the nurse had me sit with her for twenty minutes afterwards because she was afraid that I was going to pass out. Any urologist who says it is painless must have never had one himself.
Posted 1/19/2018 6:26 PM (GMT 0)
Hi Schoolpsych! I'm in Cleveland here too! I'm sorry, I should have clarified.....the painful procedure I was speaking of was my Rezum procedure. Strangely enough I never experience much more than a mild discomfort from my biopsies. I guess I was lucky in that regard. I felt the pressure of the needle going it to get each sample but very little pain. With the Rezum procedure where they core out your prostate with steam I was climbing the walls in pain. Even the nurse who was watching me felt bad for me. Sorry you had such a bad experience. I'm not sure what the difference was.....maybe a poorly done nerve block for the Rezum and not for the biopsies? It seems this prostate business is far from a perfect science.

Todd
Posted 1/19/2018 11:15 PM (GMT 0)

Todd said...
If he damaged my seminal vesicles during a procedure with a record of 100% restoration of sexual function how accurate can I trust those biopsies to be?

I don't really see how one has anything to do with the other. Shame on him for missing the nerve on the periprostatic nerve block - like everything, it takes practice. But the biopsy was not read by him - it was read by a pathologist. Usually, a pathologist who deems the cores to be negative is right, although a prostate biopsy specialist, like those in Epstein's lab, may be able to provide extra info (e.g., the presence of hyperplasia).
Posted 7/15/2018 11:28 PM (GMT 0)
Can you please tell us your review of the Rezum procedure? Did it work for you? Considering the same.
Thank you
Posted 7/15/2018 11:50 PM (GMT 0)
Max, I would not count on an answer, since this member has not signed on since April.

You might want to start your own thread, perhaps another member has experience with the Rezum procedure.
Posted 7/15/2018 11:55 PM (GMT 0)
thanks i will
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