HealingWell
Search Close Search
☰

Recently Diagnosed with PC and looking for feedback

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 5/10/2018 3:54 PM (GMT 0)
This is my first post but I have spent many hours reading thru the posts and attached information and studies. I have read Dr. Walsh's book based on a recommendation found in one of the threads. The book was extremely helpful in increasing my knowledge of PC. I have included my background information in my signature below as I saw many of you have done. I live in the Atlanta area and have had a good experience with my local urologist. He spent 3 hours with me after diagnosis reviewing my options and his recommendation was surgery given my age and G7 results. He recommended me to a local surgeon (600 robotic surgeries) but also encouraged me to get a second opinion. I just returned from my second opinion with Johns Hopkins after meeting with Dr Burnett (3,000 open surgeries) and Dr Song (Radiation Oncologist). I have sent my slides to Dr Epstein but have not yet received the results. I also plan to meet with Dr Allaf at JH to discuss Robotic surgery option. Dr. Burnett said I would be an excellent candidate for either the open or robotic surgery, he obviously was partial to the open surgery given that is his expertise. Dr. Song said I would be an excellent candidate for brachy and that was his recommendation. I am also interested in looking into SBRT. I plan to also visit Emory for a second opinion given the proximity and to get another opinion on radiation. I have tried to complete my due diligence without rushing into a decision but at some point I will need to pick a path forward. I am posting this note (hopefully not to long winded) to tap into the knowledge and experience of the many posters on this forum. I would greatly appreciate any feedback that you would be willing to share on my specific case, the doctors I have mentioned and Johns Hopkins or Emory as a choice for care. Thanks in advance for your time and support
Posted 5/10/2018 4:25 PM (GMT 0)
Welcome to this forum, and the club no one voluntarily wants to join.

Your first post tells me you're doing everything you should be doing so far. I like that you asked for a second opinion on your biopsy. Talking to a few surgeons is also good. Statistics show that outcomes are about the same whether you have open or robotic surgery, assuming your surgeon is experienced.

Learning about radiation therapy is recommended. I know that SBRT is becoming more popular, and may be the treatment of choice in the future.

From what I know, your biopsy puts you in the low side of intermediate risk. All treatment options are available to you. Plus you have time to make a decision.

There are knowledgeable people on this forum, so feel free to ask questions. Good luck to you.
Posted 5/10/2018 4:29 PM (GMT 0)
Welcome to HW.

I wish more folks would follow your example of research and level-headedness when confronted with this thing.

All your options are on the table. Possibly even AS. I've become a fan of SBRT and wish I'd had that as a choice.

Hang in there and keep us updated on your progress,
Andrew
Posted 5/10/2018 7:35 PM (GMT 0)
Sorry about your diagnosis and you have to join us here. But I have to say you're doing really well in checking out all your options and getting the second opinion from JHU! I guess the only thing I might add is that I probably wouldn't rule out AS just yet. If for some reason the second opinion comes back as a G6, you'd be an ideal AS candidate. (Not that you can count on it.) But even if it doesn't...well, with one G7 core I think AS is still part of the conversation, particularly if there's a low % of #4 cells in the positive core.

Keep doing your due diligence and I hope we can be of help as you navigate through this. Good luck to you!
Posted 5/10/2018 11:05 PM (GMT 0)
Thanks for the initial feedback! I did get the pathology report from Epstein today and he made no changes to the initial pathology report showing one positive core at 80% with Gleason 7 (3+4). However he did add some additional detail about the one positive core. He said that 10% was Gleason 4. I don't know if the % of cells that are gleason 4 is a major factor in the spectrum of Gleason 7 (3+4) outcomes. Anyone with knowledge or experience with this factor?
Posted 5/10/2018 11:20 PM (GMT 0)
MJ, welcome to our club, and it sounds like you're on a good start to figuring out what to do. Gleason 3+4 is considered low-intermediate risk, which means that cure is in your vocabulary. You can google search for the MSK (memorial sloan kettering) prostate cancer nomogram--put in your data, and it will give you the probabilities. That being said, us 3+4's have every probability (>90%) of being once and done when it comes to treatment.

The good news is that you have some time to determine your course, and get comfortable with it. Surgery is an option, as are pretty much any of the radiation treatments. The question comes down to two things: what is reasonably available to you and what side effect risk profile are you comfortable with?

I'm a surgery guy, and I've had an excellent outcome: I hit 'trifecta' (cancer free/no continence issues/no ED) within 6 weeks. Other guys aren't so fortunate. Other guys have had great outcomes from the various radiation therapies. The important thing (my opinion) is to find the best, most experienced, most accessible to you, experts, and go there. When you land with "your guy", you'll walk out of the consultation knowing you've found him or her. It really does work that way.

Keep digging, keep asking questions, and the answers will come.
Posted 5/11/2018 12:06 AM (GMT 0)
MJ...read the post titled "newly diagnosed at 58," which is not too much further down. In it, Tall Allen (a very knowledgeable poster here) said something exactly about 10% G4 cells being more apt for AS. If he's not along soon to respond to this, I recommend that you pose the question to him directly.
Posted 5/11/2018 1:27 AM (GMT 0)
(Taking baton from Michael) Yes, with that small an amount of Gleason pattern 4, many institutions (NCCN, but not Johns Hopkins) would consider active surveillance to be an appropriate option for you. If that is something you want to try, an mpMRI-targeted biopsy within a year will give you confidence in that choice, and it would also be a good idea to get a genomic test (Oncotype Dx, Prolaris, or Decipher).

The only urologist I know by reputation in Atlanta is Martin Sanda at Emory. I know that someone on HW had SBRT in Atlanta, possibly at Piedmont Hospital. JNF had HDR brachytherapy (also an excellent choice) at Total Cancer at Preston Ridge in Alpharetta. I will pass the baton to him, so he can fill you in on Atlanta doctors.
Posted 5/11/2018 2:23 AM (GMT 0)
Thanks Halbert, Michael and Tall Allen for your feedback. My Decipher score was .55 = average risk. Martin Sanda is who I plan to see at Emory, understand he is an expert in robotic surgery but do not have information on number of surgeries, etc. I think Emory may have SBRT option that I will ask about during my visit.
Posted 5/11/2018 10:06 AM (GMT 0)
MJ

My urologist is Lewis Kriteman at Georgia Urology. He has offices in Roswell and Cumming. I had my quarterly checkup and PSA with him yesterday. Also as TA reported the radiation oncologists that I used are the best in the area using HDRBT.

With your risk level, I think surgery would be over-treatment due to the expected side effects. Brachytherapy mono-therapy would cover a larger area and be very effective without the worry and damage from cutting. I had HDRBT more than seven years ago and have no negative treatment side effects.

Let me know if you would like to talk and I can also get you contact information. I assisted another member get in to see the radiation oncologists in just a week. They had a great visit this week and will begin treatment in July.

Jack
Posted 5/11/2018 12:04 PM (GMT 0)
Jack - what is the forum protocol for setting up a personal conversation? - MJ
Posted 5/11/2018 12:42 PM (GMT 0)
MJ, the best way for you to communicate with Jack is probably to email him first via the little envelope under his name on the left. Then you can go on from there re future emails, phone calls, etc as the two of you determine.

Jim
Posted 5/11/2018 1:12 PM (GMT 0)
MJ

Click my user name and you will see my personal email. Please send me a note and we can get together.

Jack
Posted 5/11/2018 3:45 PM (GMT 0)
Jack - I just sent you a personal email, look forward to talking with you - MJ
Posted 5/11/2018 5:54 PM (GMT 0)
As you no doubt learned....Song is a man of few words but I believe him to be a great RO. He called my brother-in-laws cancer much better than the surgeons there did (not sayin' the surgeons are not good...just sayin')....and treated him once the surgeons got through with him.

If I ever need radiation....he'll be my guy. (I last consulted with him in Feb). I think he knows his stuff.

Your case sounds run of the mill for cure

good luck to ya
Posted 5/11/2018 7:17 PM (GMT 0)
So if you decide surgery, go with the guy who has done the most. Doesn't really matter whether its robotic or open. I would take 3000 open surgeon vs the 600 robotic...
Good luck to you!
Posted 5/11/2018 7:18 PM (GMT 0)
Thanks Island Time! Good to hear from someone that has actual experience with Dr. Song. I did find him to be as you mentioned but was still impressed with what he did say.
Posted 5/11/2018 7:22 PM (GMT 0)
Samster - thanks for the incite. I see you had open surgery. What were your thoughts on picking open versus robotic? Or did you pick the open because of your confidence in the doctor?
Posted 5/11/2018 8:17 PM (GMT 0)
MJ
Welcome and sorry you have to be here. All the best in the difficult process of making the Treatment choice , it’s not easy. you mention you are T1c , I think the only accurate way one can stage PC is after surgery and looking at the pathology so don’t give too much importance to your cancer stage.

20cc prostrate is on the smaller side so from physics point of view it’s easier for PCa to get past the capsule as compared to if it were 100cc ( although it would matter where the lesion(s) is located.

Also, just logically thinking , normally larger prostrate would mean larger PSA - even under normal condition (without PCa) - so I’m concerned that you have a relatively higher PSA for a smaller sized prostrate that has PCa ie biopsy may have missed some spots.

I’m not ringing fire alarms but would ask you run it through some more diligence as you make the decision.
Posted 5/11/2018 10:24 PM (GMT 0)
MJ,
I think most would agree that IF you opt for surgery you want the most experienced. I was originally scheduled with a Dr. at the Cleveland Clinic for Robotic. As I was leaving his office I asked how many he had done. He said, "several hundred." I then met with the head of the department, and asked the same question. He said, "over 3,000." I wanted a surgeon who would be "unflappable" in the OR.
I did the all the research and opted for surgery. It was the right call for me. I have had outstanding results. Others have chosen other treatment plans and have achieved the same outcome. Do what is best for you. Check out every treatment plan that is available before you make your decision. Good luck.
Samster
Posted 5/12/2018 12:16 AM (GMT 0)
Welcome MJ.
Posted 5/15/2018 7:16 PM (GMT 0)
EJC61 - I see you are part of the Emory AS program. I have my initial visit to Emory next week and was wondering if you have a recommendation on who to see during my visit? I am currently scheduled to see Dr Martin Sanda and one of the RO’s yet to be determined. - regards MJ
Posted 5/15/2018 9:15 PM (GMT 0)
I've seen Dr. Sanda a few times last year. I like him. I have a followup with him in late June actually. Data driven as you might expect. He's very focused. My regular uro recommended him. The RO that Dr. Sanda brought in to consult and educate was Dr. Bruce Hershatter.
I take it we're the same age.
Posted 5/17/2018 1:53 PM (GMT 0)
I fully agree with samster that you want someone who has lots of experience doing these. While I really like my urologist, when I was diagnosed I looked up where the best places for RALP were and chose Cleveland Clinic. The uro concurred as that is where she did her training and referred me to a doctor with lots of experience. I flew back for the 2nd opinion on the biopsy and met Dr. Haber. I liked him right off and when I asked how many he'd done, he didn't know the number but said that he does 3-4 per day, 4 days per week, and has been doing this for many years. A quick math calculation told me that there was little if anything that would come up that he'd not encountered before.

While I know many people who have had their RALP here in Billings, MT with good results, I didn't want to end up regretting not going to Cleveland should anything come up after surgery. Plus, why not? I am retired and it was a chance to visit Cleveland and take in that city.
Posted 5/19/2018 8:06 AM (GMT 0)
EJC61 - thanks for the feedback on Sanda. Hershatter is one of two options for RO that I will see during my visit. Yes, looks like we are the same age. Regards MJ
✚ New Topic ✚ Reply
12