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Posted 6/1/2018 3:19 AM (GMT 0)
I received my BX results this afternoon, one day before my birthday.
Results are 9 out of 12 cores positive, 1 at G6 and 8 at G7. (details in signature)
Because of all the very helpful and valuable information I was able to read and learn from this forum I've immediately taken the following steps:

- requested my URO to forward the slides to Epstein at JH
- requested a Decipher test
- scheduled an mpMRI

My plan is to get the second opinion to see if there is anything upgraded or downgrade, get the Decipher score, get the mpMRI results back and then evaluate where I'm at and request an Oncology consult. The URO has said we will probably end up with RP being the best option based on the amount of involvement, but we have both agreed to not make any final decision until everything is done and we have as much information as we can possibly get in order to discuss and weigh any and all options.

I want to thank everyone who participates here for sharing their stories and their knowledge. Because of all I was able to learn through your sharing and information, I know that my results are nothing to fear and that I have a lot of good years ahead of me.

Thanks guys, you have made dealing with this much easier.

Dale
Posted 6/1/2018 3:36 AM (GMT 0)
Sounds like you will probably want to seek treatment. The second opinion and the additional tests and imaging won't change that -- but they might change the sort of treatment it makes sense to get. This is a good time to fill up your rollodex with doctors to talk with once the results are in. Be sure to include some radiation oncologists on your list -- preferably including some who do SBRT or brachytherapy.
Posted 6/1/2018 10:49 AM (GMT 0)
Wow, undecided -- you are so much better informed than I was at your stage. I'm curious that your URO said "RP being the best option based on the amount of involvement." I may be mistaken about this, but it seems to me that a large amount of involvement increases the probability that the cancer is not contained within the prostate gland, in which case RP might not be the best option. The additional tests you have planned will help resolve this.
Posted 6/1/2018 11:59 AM (GMT 0)
Hi, Undecided,

Welcome, and it does seem that you've started doing your homework.

Yes, you do have quite a bit of "involvement" with 9 of 12 cores being positive. That would, to me, indicate that some form of active treatment is in your near future. You do have the luxury of being able to take some time to decide.

I agree with the others, though, that you should now do the rest of your "first semester" homework and learn about the various modes of treatment. Remember that urologists are surgeons, so to them, surgery is usually the best option. Take the time to learn about the other modes of treatment, their efficacy and their side effects. At your age, you will be living with those side effects for many years, so choose wisely.

Also remember that any practitioner is only fully educated and able to advise you on those treatments that they actually offer. So, if you are going to speak with a radiation oncologist, speak with them about their specialty, not the other modes of radiation. They will not be up to date on the others, and may try to short-sell those to interest you in the treatment they can offer. Yes, they are doctors, but they also must be salesmen (and women) to keep their practices busy and the cash flowing.

Also remember, with your pathology, it is YOUR choice of treatment, not theirs.
Posted 6/1/2018 1:41 PM (GMT 0)

fiddlecanoe said...
Wow, undecided -- you are so much better informed than I was at your stage. I'm curious that your URO said "RP being the best option based on the amount of involvement." I may be mistaken about this, but it seems to me that a large amount of involvement increases the probability that the cancer is not contained within the prostate gland, in which case RP might not be the best option. The additional tests you have planned will help resolve this.


Exactly what I was thinking.

Congratulations on being well informed, that makes going in the right direction so much easier.
Posted 6/1/2018 1:49 PM (GMT 0)
Sorry for the Dx undecidedtx.
Similar to yours, I had a lot of %cancer (60-80%) in half of my cores. When I posted my stats , I got a great advise from one of the posters - he said - you have time - take many weeks to decide but don’t take many months to decide.
All th the best.
Posted 6/1/2018 3:43 PM (GMT 0)
I ended up having surgery but wonder what would have happened if I had a bone scan after diagnosis instead of after surgery. Ask why or why not a bone scan should be done. All my pre-tests gave no indication of swollen lymph glands and I had (& have) no physical symptoms.
Posted 6/1/2018 3:45 PM (GMT 0)
I’m so sorry to hear about your diagnosis but I am grateful you are sharing your story. My biopsy is coming up soon and I was just sitting here thinking I don’t have a clue what I need to do to prepare myself if bad news come. Your post really helped ease my mind and offers me some great advice. Thank you and I wish you the best going forward.
Posted 6/1/2018 4:33 PM (GMT 0)
Welcome to HW.

Keep doing your research and check into your radiation options especially SBRT.

Keep us updated on your progress.
Andrew
Posted 6/2/2018 2:06 PM (GMT 0)
You are moving along in the right direction. Look at all of the options.

Roger
Posted 6/2/2018 11:59 PM (GMT 0)

convertible68 said...
I’m so sorry to hear about your diagnosis but I am grateful you are sharing your story. My biopsy is coming up soon and I was just sitting here thinking I don’t have a clue what I need to do to prepare myself if bad news come. Your post really helped ease my mind and offers me some great advice. Thank you and I wish you the best going forward.

One of the biggest things I have learned from reading here and researching the disease and its treatments is that it is NOT a death sentence. If they renamed it from 'Prostate Cancer' to 'Prostate Disease' it would probably remove a lot of the fear and anxiety over finding out you have it.

Because of reading all the posts here, coupled with researching it, believe it or not my biggest fear was of getting the actual biopsy performed. I had heard horror stories from friends of how painful it was and how it would be something that you would never want to do a second time. I talked to my URO about it and told him of my anxiety. He described everything that would happen in detail and then prescribed me a single diazepam to help me relax. I found the biopsy to actually be very tolerable. I only felt a little bit of burn when the numbing agent was injected, similar to what you feel when the Dentist gives you novacain. Then it was just a slight pressure when he took the samples. The biopsy was over in less then 5 minutes.

Don't get hung up on the word 'cancer' and think of it as a treatable disease can be treated and cured.

I hope your biopsy goes well and that your report is a good one.
Posted 6/3/2018 12:47 AM (GMT 0)
Thanks to everyone who responded. To expand on my reasoning and approach a bit more:

I'm doing the mpMRI to assist in determining if it is localized or if it may have broken out and spread.
I've opted for the Decipher to help in determing the aggressivness and probability of recurrance
And I requested the 2nd opinion from Epstein to see of the pathology is correct or if it gets upgraded or downgraded.

I'm scheduled for the MRI on July 3rd and then will meet with my URO on July 5th. By this time I should have the 2nd opinion back from Epstein, the Decipher score, and as much information that I can possibly get on its grade, aggressiveness and whether it is localized or not. Once I have all this info, I will be setting appointments with Oncologists to present it for their review and their input as to possible treatment options from a non-surgical perspective.

I'm aware that radiation and ADT would be a possible treatment, and I'm also aware that if I go with radiation first I would most likely not be able to have surgery as a viable fallback. Conversely I am aware that if I do opt for RP I leave the door open for radiation if needed or required later.

Some of the non-health related things to factor in will be my insurance coverage and out of pocket expense, my Short Term Disabillity coverage and time periods for surgery vs. radiation, etc..

Lots of things to consider and review before I make any final decisioin. With the knowledge gained here I think I've got a good chance at arriving at the best decision for me.

Thanks again to everyone who has responded.
Posted 6/3/2018 12:54 AM (GMT 0)
I'd do another biopsy if I could.

Yes there were 2 massive (10 out of 10) but short episodes of pain.

The benefit was afterwards when my ejaculate (it looked like cheap catsup) was powerful like when I was a teenager.
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