Newbie

Hello All, so great to be here and meet all of you....NOT Recently diagnosed, just got MRI results today that it has leaked out the right side, so awesome. I've been lurking here for a few weeks and found some great info on doctors, procedures, options, etc. I will be scheduling 2nd opinion at UPENN with surgeon Dr. Lee (recommended here) and RO Dr. Bekelman (both at Penn Abramson). Then maybe another opinion at Fox Chase. My diagnosing dr. said he recommended surgery followed by radiation, and also said I would definitely need the radiation due to the leakage. So I will have to see what the others say. One thing I didn't ask him today when he gave me the latest crapty news was how quickly do I need to start radiation before it could spread further. Apparently I have to wait another 3 weeks to have surgery if I go that route. I feel like I should sit on the microwave right NOW to kill this unwanted invader. Any advice would be appreciated - especially from fellow leakers.

welcome,

agreed, not enough facts or data on you to possibly give any sensible advice.

if doctor is so certain you will need radiation immediately after surgery, sounds like surgery first may not make the best sense. you don't want to make a rush decision on so important a decision, a decision you alone will have to live the rest of your life with

good luck, and a clear head and mind

Guys, appreciate the responses. But what additional data would I need to determine correct treatment. I haven't committed to one yet. I will meet with both surgeon and RO and see what they say. Then maybe 1 more of each.

TA, thanks for the Horowitz recommendation.

Welcome W84 !!....waiting on your info-stats-numbers etc......your at the right place....David

There's a checkbox to click when you do a new thread to show the sig. Sometimes a change in signature can take awhile to show up.

Based on that info, I'd say you've got every chance for a cure and it's likely it's contained to the prostate bed. That the doctor is already mentioning RT, I'd suggest you get to a good RO and explore the possibility for doing SBRT - 5 treatments and you're done and they can target a wider area to get whatever the MRI showed.

This does put you on the lower risk side, so you've got plenty of time to make an informed decision. Don't let anyone rush you and try to avoid the panicked, "OMG get it out now!!!" PC is a slow growing cancer and a couple of months won't matter. In fact is best to just deal with the emotional kick in the head first - I've got cancer! Yes you do, but PC is treatable and you have tons of options. It won't be fun to go thought, there will be side effects, normal will change, but you'll be here for many, many decades to tell stories of your journey.

Hang in there and keep us updated on your progress,
Andrew

Thanks, that helps. They call your kind of cancer "favorable intermediate risk," which means that all the curative therapies that work for 'low risk" cancer will probably work well for you. You can easily take many months or even a year to decide.

Don't get too excited about the "leak" - whatever that is. MRIs are wrong about staging 40-50% of the time. Unless it's a significant bulge that your doctor would be able to feel anyway.

It's a good idea to get a second opinion on your biopsy slides from Epstein's lab at Johns Hopkins. It's the Gold Standard. It may cost you $250.

Eric Horwitz can do a type of brachytherapy called "high dose rate brachytherapy' as a monotherapy. It has excellent oncological results and potency preservation.

Philadelphia CyberKnife in Havertown PA has published some excellent results, also with excellent potency preservation:

/www.frontiersin.org/articles/10.3389/fonc.2014.00312/full

welcome, and we have a similar stage of disease. I recently completed my two HDR BT treatments and the procedure and post-op were a walk in the park. I echo the advice to slow down and become an expert at your choices. A matter of months will not change the state of your disease. My opinion is doctors are biased, not maliciously, rather they have studied their craft and feel it is the best. So we have to become our own advocates and to do that well we must learn a great deal. The main treatments have a similar statistical outcome. so the decision is around the difficulty of the procedure and post-op SEs in my opinion.

I was in shock, ignorant and believed the docs, at first. I had a terrific Urologist at Yale and was heading towards surgery without knowing about options. I went to the RO to check the box that I did it with no intent of using radiation. I had a story about horrible SEs from radiation, and I was wrong on that count.

I am not advocating for any one treatment, even though my treatment was amazingly simple. Rather I am advocating for you to become a student of PC and dedicate the next months to fully understanding your options. From that point of strength the right choice will become clear for you. There are also a number of threads in the past on regret and my take away from them is those who had severe regret also wish they had taken their time to study options.

I wish you well in your PC journey. Denis

I am picking up my slides this week and want to send them to JH. Do you know how long they will have them and if they send them back? I also have to take them with me to my appt with Dr. Lee. Also, trying to setup appt with Dr. Horowitz. Thanks all for the help.

Some smart guys have given you great advise. Best of luck with you decision and take you time.

Cajun Jeff