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Posted 8/24/2017 8:14 PM (GMT 0)
I recently found out that my PSA levels are elevated so I may have PC. My father had PC and had surgery about 18 years ago. He was on a bag the rest of his life, so the whole surgery idea does not appeal to me.

I am going to update this thread with my experiences as I go through the various phases of this whole thing.

I am in the early stages right now. My PSA about a month ago was 4.9. Went to a urologist and had the test redone last week. It was 5.0. This urologist specializes in robotic PC surgery. He wants to do a biopsy right away (or course).

I have researched online all the different ways of dealing with PC and am most interested in HIFU. It is the most expensive treatment (and not covered by insurance, of course), but seems to be the most attractive alternative (depending on the outcome of future tests, of course).

I am in Southern California and had found Dr. Scionti in Sarasota FL and Dr. Pugach in Southern California. Both have good reviews and seem to be at the top of their fields. Since I am in SoCal, I have made an appt. with Dr. Pugach for the first week of September. I will go over my situation and see what the next step is (sounds like a MRI 3.0 and/or Biopsy).

This is a scary time for me, but I look at the advances in PC diagnosis and treatment and am encouraged that there are good options available, now I just have to start the whole process.
Posted 8/24/2017 8:27 PM (GMT 0)
Welcome to HW.

Don't get too far ahead. Get the biopsy first and find out what you're dealing with. HIFU isn't useful in all cases and if your case is advanced, you might need more agressive treatment.

Don't base your opinion off one case. Thousands have RP every year and many (most) have no major problems post surgery.

Andrew
Posted 8/24/2017 8:35 PM (GMT 0)
Hi Guido...greetings from another guy in Southern California. Thanks for joining us, although I really hope you're just "passing through" and you don't actually have PCa. Do keep us posted!
Posted 8/25/2017 3:40 AM (GMT 0)
Well, I'm here to document my journey. It would be nice not to have PC, but in the event I do, anything I can do to add more to peoples information is something I'm willing to do.
Posted 8/25/2017 9:18 PM (GMT 0)
Thanks for sharing your journey. Keep us posted. I am with you in the same boat. I am 42 years old with my PSA levels low for the last two years and sudden a major spike. (PSA 7.1 2017; .5 2016; .7 2015) I have an appointment with a Uro in 3 weeks.

I am hoping its inflammation/infection which many saying here because such a big jump. Of course reading online I am expecting the worst.

Thanks for sharing.
Posted 8/26/2017 2:14 AM (GMT 0)
Gerry,

Good luck on your appointment. I think the worst thing is the anticipation of not knowing for sure. Your imagination starts working overtime and just makes things worse.
Posted 8/26/2017 3:11 PM (GMT 0)
Guido, welcome, and we hope your stay is brief. As others have said, the rising PSA is indicative of "something" is happening down there. Whether we like it or not, biopsy is the only way to know for sure. Make sure, after the biopsy, to ask to have your slides sent to Johns Hopkins for second opinion.

Keep us posted on what is happening.
Posted 8/28/2017 3:14 AM (GMT 0)
Thanks, Halbert. I just read your thread. You have had quite the journey over the last few years. Glad you are cancer free at this point and fully recovered. smile

You mention a 2nd opinion from John's Hopkins. How do you go about getting that, and who do you contact?
Posted 8/28/2017 10:41 AM (GMT 0)
Guido, It's easy...you ask your doctor to send your slides to Johns Hopkins. Depending on your insurance, you may have to pay out of pocket for it..it's around $250 or so.

But, don't get ahead of yourself. Get the Biopsy and the first report first.
Posted 9/13/2017 5:16 AM (GMT 0)
So I get a MRI done on Monday and my biopsy is scheduled for October 18th. That's all the news for now on this front. Time will tell.......
Posted 9/13/2017 8:17 AM (GMT 0)
I am early in this journey and get the confusion, fear, and worry. Stick with what you know and try not to get too far ahead. I think the best practice is 3t MRI and if warranted fusion biopsy, where they use the MRI imagery to target suspect areas. Hang in there. Denis
Posted 9/13/2017 2:57 PM (GMT 0)
I caution you about falling in love with a treatment option before you know what you actually have. Particularly a treatment option that is much less effective than other options.

I share your disdain for surgery. So I didn't use surgery. I understand how ineffective HIFU is, so I didn't use it. Rather I chose a non-surgical effective treatment....radiation based therapy. More effective than HIFU at killing the cancer, non of the undesirable side effects of surgery that you want to avoid, got it all right here in Atlanta so no travel, and fully covered by insurance.

You don't yet know if you have cancer. And if you do, you don't know anything about it or what you will need to do about it. But I do suggest you do effective research on treatment options. To start, I suggest that you learn about one of the most effective non-surgical radiation therapies. Please see www.cetmc.com. This is the website of Dr. Jeffrey Demanes, the pioneer of High Dose Rate Brachytherapy (HDRBT). He has used it since 1981 and is the head of the department at the UCLA Medical Center. Whether you ever use HDRBT, this will give you great information about PCa and treatment options with focus on HDRBT.

I hope you don't have PCa. But if you do, I also hope you will be a calm and effective researcher of all the different treatment options before choosing. And to your advantage, surgery is absolutely not required to effectively treat PCa, neither is it the best way to treat PCa. You have many excellent non-surgical treatment options. However, HIFU so far has proved to be rather ineffective, and thus us not recommended. It can be used in more focal work to possibly clean up cancer left behind, but not for an initial treatment method.
Posted 9/13/2017 3:30 PM (GMT 0)
Welcome to this forum. You will find a group of well informed members interested in helping other prostate cancer patients.

You're just getting started, and as of now, all treatment options are open to you. More importantly, you don't even have a diagnosis yet. Don't get too far ahead of yourself. Start reading and learning, but keep your mind open.

I chose surgery. My story is linked in my signature below. However, there are a number of radiation therapies, and research is showing very good patient outcomes.

Looking forward to your journal. You should do fine. Good luck.
Posted 9/13/2017 3:51 PM (GMT 0)
Good luck Guido. A PSA at that level doesn't necessarily mean PC. My PSA was at 11. I had an MRI that showed a "suspicious lesion" so I had a "fusion biopsy." Results showed no cancer. Have to go back every six months for more tests. This is a great group with lots of guys who have gone through the same thing and have great advice. Let us know how things work out. Jack
Posted 9/13/2017 3:52 PM (GMT 0)
Since you have already researched HIFU I would have expected you came across data that was not favorable to that treatment option.
Of all the treatment options HIFU has the highest rate of reoccurrence and unlike other options the reoccurrance rate rises as time passes. The rate of reoccurrence should be dropping as time progresses.
Some European countries have discontinued its use due to unfavorable results.
Basically it sounds good, but the results are underwhelming and it is a treatment that unfortunately is not ready for prime time yet.
There are so many great radiologists and surgeons in the LA area that it would be foolish to travel to get an expensive treatment with a poor track record, not covered by insurance.
Go to the PCRI or The new prostate cancer info link web sites and do a search on HIFU.
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