Recently diagnosed - seeking advice

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johncc
New Member


Date Joined Jun 2017
Total Posts : 2
   Posted 7/17/2017 1:45 PM (GMT -6)   
Hello Everyone,
I'm 54 and was recently diagnosed in June after Artemis biopsy at Stanford with the following results:
6/20 cores (3+3) <5%, 10%, 70%, 25%, 20%, 20%
2/20 cores (3+4) 50%(10% pattern 4), 70% (30% pattern 4)

Prior to the biopsy, I had multiplanar, multisequence MRI of the pelvis, including diffusion, T2, and DCE that revealed an 11 mm lesion on the right posterolateral peripheral zone at the apex. This is the area of the (3+4).

My PSA's leading up to the MRI were:

01/31/2017 4.99
12/16/2016 5.77
10/24/2016 4.78
08/24/2016 4.13
03/14/2014 3.59

I don't have any symptoms and I'm in excellent health otherwise (although I've notice some recent weight loss possibly due to stress)

I met with the oncologist who did the biopsy and he recommended RALP, which is his area of practice. He has performed about 250 surgeries over the past 4 years (he assisted in about 150 surgeries the prior 2 years). Are 250 surgeries sufficient to develop the skills needed to perform the delicate nature of this kind of surgery? He wouldn't allow me to speak with any of his past RALP patients, citing privacy concerns. Is this typical? I read a paper from
a JH surgeon who said that he recommends that his potential patients speak with his former patients.

I'm meeting with a radiation oncologist in a few weeks to see if SBRT is a possible treatment. From what I've read, SBRT seems to have similar results as RALP without the inconvenience and complications of surgery, but with similar side effects effects. Is SBRT generally recommended for older patients or those with certain types of tumors?

Does anyone have recommendations for RALP surgeons in the Nor Cal area with more experience? I was initially leaning towards SBRT, but I'm not sure if SBRT is recommended for someone with my Dx and background.

How many surgeons should I speak with? The oncologist recommends that I have treatment within 3-6 months.

At times there are literally so many thoughts going through my head that it's overwhelming and other times I feel fortunate that this was detected early and that I'll be able to beat this beast.

I would appreciate any feedback or advice on my choice of treatment given my Dx and background.

Thanks.

Doire
Regular Member


Date Joined Mar 2017
Total Posts : 75
   Posted 7/17/2017 2:13 PM (GMT -6)   
Hi John

Sorry your here but there are great people here that will help out with advise and support. It seems to me so far your doing everything right, your doing your research, getting opinions etc. A good surgeon should have at least 500 solo surgeries their belt if not more ... I don't know standard practice regarding past patient opinions etc. I would imagine every doctor is different but can see the privacy thing coming into play also. Whatever decision you make be it surgery or radiation, you have to have trust in both the doctor and your choice so take your time and keep up the research. Your gleason 7 is very very curable.

Best wishes
Doire
Husband DX 02/08/17
Age 50 - 3 year old twins smile
PSA 09/15 4.1
PSA 01/17 5.6
DRE NEG, BX 4 Cores Positive of 12 Gleason 7 (3+4) (40%) - 02/17
RALP 04/03 .... 2 day Hosp stay
Cath removal 04/12 ... Continent! smile..... ED work in progress
Final Pathology PT3A EPE+,PNI +, negative margins (<3mm), SVI and nodes (5 taken) Gleason (3+4). 50% tumor
1st PSA 06.20.17 <0.01

samster
Veteran Member


Date Joined Oct 2011
Total Posts : 503
   Posted 7/17/2017 2:19 PM (GMT -6)   
You have time to figure out your best course of treatment. Regardless of which one you choose you want the Dr. that has a wealth of experience. Your question, "Are 250 surgeries sufficient..." The long and short answer is NO. You want someone who has done thousands... You have one bite at the apple so to speak, so you want the best you can afford.
Take care, stay in touch. This forum is a tremendous resource.
All the best.
Family history of PC
Father died on 2/16/200k about 16 years after being diagnosed. Courageous man.
PSA 3.04
Diagnosed at 54 October 2010
3/12 biopsies 5% 10% 15%
Gleason 3+4
open Surgery February 14th Cleveland Clinic February 14, 2011 Dr. Eric Kline
Negative margins/lymph nodes/seminal vessels/etc.
Continent
No ED issues
Non-detectable

Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 3818
   Posted 7/17/2017 2:32 PM (GMT -6)   
Hello John and welcome. Sorry you have to be here but we will help you get through this. Here are some of my thoughts on your questions:

1. You have time to make a decision so PLEASE take that time to get educated about our disease. One good place to start is the sticky thread at the top of our forum that is designed for new patients.

2. You should get a second (expert) opinion on your biopsy pathology. Many of us recommend Dr. Epstein at JHU.

3. It's natural that your diagnosing doc would recommend RALP since that's what he does. Many options are likely to cure you including LDR Brachy, HDR Brachy and SBRT. I did LDR Brachy with outstanding results but if I was choosing today I might choose SBRT which I think is more state of the art. I recommend you visit with doctors in each of those specialties.

3. 250 surgeries over 4 years makes this guy pretty much a rookie. I would personally choose someone with more experience if surgery was my choice.

4. If someone told you that the SBRT side effects and the surgical side effects are likely to be the same that is bad info. SBRT is likely to give you a much better chance of avoiding incontinence and ED.

5. I understand that you are reeling a bit now but that's natural. Take a deep breath and take your time - you WILL reach a good conclusion.

Take care and let us help where we can.

Jim
Forum Moderator-Prostate Cancer. Age 62 (71 now), G 3 + 4 = 7, T1C, PSA 4.2, 2/16 cancerous, 27cc. Brachytherapy 12/9/08. 73 Iodine-125 seeds. Everything continues to function normally. PSA: 6 mo: 1.4, 1 yr: 1.0, 2 yr: .8, 3 yr: .5, 4/5 yr: .2, 6-9 yr: 1. My docs are "delighted"! My journey:
http://www.healingwell.com/community/default.aspx?f=35&m=1305643&g=1305643#m1

InTheShop
Veteran Member


Date Joined Jan 2012
Total Posts : 7403
   Posted 7/17/2017 4:04 PM (GMT -6)   
Welcome to HW, sorry you need to be here.

Kick in the head, isn't it?

Jim's post is a great summary of things to consider.

Good news, those numbers are treatable. You have time to make an informed decision. SBRT is a great option. Stanford and UCSF are likely two of the best places in Nor Cal for treatment.

Bad news, choosing a treatment plan will drive you crazy. There are tons of options and it's not always a clear cut choice between them.

Ask all the questions you have,
we're here most days,
Andrew
I'll be in the shop.
Age 57, 52 at DX
PSA:
4.2 10/11, 1.9 6/12, 1.2 12/12, 1.0 5/13, .6 11/13,
.7 5/14, .5 10/14, .5 4/15, .3 10/15, .3 4/16, .4 10/16, .4 5/17
G 3+4
Stage T1C
2 out of 14 cores positive
Treatment IGRT - 2/2012
My latest blog post

island time
Veteran Member


Date Joined Dec 2014
Total Posts : 1115
   Posted 7/17/2017 4:34 PM (GMT -6)   
I don't trust your doctor. If he wanted his patients to talk....they'd talk. When a doctor doesn't want to reveal information about himself, the reason given is invariably reasonable sounding.

That's one of the ways Proton therapy used to get so big, so fast. they had the patients who wanted to participate...volunteer to go onto a contact list....so new comers could speak with treated patients.

Post Edited (island time) : 7/17/2017 4:52:25 PM (GMT-6)


Dogdays
Regular Member


Date Joined Jan 2017
Total Posts : 47
   Posted 7/17/2017 10:01 PM (GMT -6)   
Hi John,
Sorry you're here. But here is where you get a lot of support and good people who are fighting the same battle. The suggestions made by Tudpock18 are right on target. Its one of the most confusing projects you'll probably ever undertake in your life. But you'll get throught it. Take some time. Research. Ask questions. Do your homework. You want to be sure of your choice. As others have said, thousands or more procedures would be a good number to consider a doctor proficient. And if he doesnt want to let you speak to his patients, theres a reason. Dump him. Be your own advocate. Its your life. Its your fight. Get the best for yourself. Take a deep breath and take the time you need to make a decision. At GS7, you have an excellent chance fighting this.
My first post on here was "GS9 and overwhelmed". I was much more able to breathe once I made my treatment decision and stuck to it.
Good luck brother
Dennis
Age at Dx. 63
PSA 1/08 1.4, 12/16 12.17, 4/17 3.8, 7/17 1.05
GS 9 (4+5)
CT Scan and bone scan 1/17 both negative
2/2/17 prostate MRI.
2/27/17 pelvic bone biopsy done. No mets
3/7/17 Started HT. Degarelix, 4/17 lupron (1-2 years)
7/7/17 Brachy (Zelefsky MSK) + fiducial markers
8/17 scheduled for SHARP (cyberknife) at MSK

Post Edited (Dogdays) : 7/17/2017 10:05:06 PM (GMT-6)


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4107
   Posted 7/17/2017 10:49 PM (GMT -6)   
Hi John,
Cancer in the apex has a higher chance of surgical positive margins. 50% of all positive margins occur in the apex. Any radiation will treat the margins more effectively than surgery,
Given your age, surgery would also be a good option as side effect recovery are better for younger men.
As everyone has suggested, see multiple doctors before making a decision.

Nick2017
Regular Member


Date Joined Jun 2017
Total Posts : 32
   Posted 7/18/2017 6:03 AM (GMT -6)   
Hello John,

I'm 64, a 4+3, and will be getting surgery tomorrow. My two cents are, a surgeon that has done about 250 is a beginner. Here in Chicago I researched the top two and both have done around 4000. I also wanted to go with the most prestigious teaching hospitals. I went through two months of exploring all options before deciding on surgery, but what you''ll find here is that every guy's case is unique.

If I were you, I would concentrate on men your own age with the same Gleason score. To me that would be logical and find out what they chose. You can also private message them and have a phone call, I found that useful.

When I considered brachy, the uro who owned the clinic said he would provide me a couple of email addresses of satisfied patients and they never got back to me. I believe HIPPA precludes doctors from giving out a list of names.

You're quite young to have gotten this and your time horizon of longevity will factor in to which treatment to consider.

Best of luck,

Nick
Age 64, married 34 years, Diagnosed 5/11/17, Gleason 4+3, T1c, PSA 3.5, PC found in 2 cores at 20%. Scheduling surgery by early August 2017.

Paxton
Veteran Member


Date Joined Aug 2016
Total Posts : 746
   Posted 7/18/2017 7:01 AM (GMT -6)   
Hi, John. Sorry we have to welcome you here, but we're glad you found us. This site is a wealth of well-balanced information (some of the other sites heavily favor surgery or radiation -- we have a lot of both).

You're a bit younger than I, so I won't try to tell you which treatment makes sense to me. I will just reiterate that with your pathology, you have time to learn and decide which treatment makes the most sense for you, personally. Finding out what other men with similar diagnoses may help, but they are not you. You have your own life to plan, and your treatment choice may impact what your future life will be like.

I do advise you, as tudpock did, to learn about all the various treatment modalities that are appropriate to your pathology and medical/life situation. Learn about their success rates with your G score, and about their side effects. I found that I felt more comfortable choosing based upon the expected side effects of those treatments that had high success rates for my diagnosis. After all, those side effects are what will affect our future lives, so be careful when you choose.

Also be aware that urologists are trained as surgeons, so they are likely to promote surgery as the best treatment. They may know the "names" of the various radiation treatments, but they are highly unlikely to be well versed in the success rates and side effects of the various non-surgical treatments. In order to learn about any of these (non-surgical treatments) you really have to meet with a doc who specializes in the specific treatment to learn the full story. My uro could tell me all about surgery and a lot about conventional IMRT radiation, but he was gracious enough to refer me to a specialist to learn about CyberKnife (SBRT). I ultimate met with two CyberKnife specialists and chose the one I felt most comfortable working with. This is the level of detail you will probably need to get, and the folks here can help you through the thought process.

You'll do fine - you just aren't confident enough yet to realize it.
Age 68 at Dx
PSA history: 2000-2012 0.9-1.2; 06/2012 started T replacement
2013-2015 3.0-3.3 (new normal); 11/2015 4.6; 05/2016 5.7
Biopsy: 12-core biopsy 07/2016; 3 cores G3+3, 5% or less; 1 core 3+4, 15%; 1 core HGPIN; 2% of gland involved. Summary G3+4.
CyberKnife SBRT with Dr. Hirsch; start 11/15/16, finish 11/23

John_TX
Veteran Member


Date Joined Jan 2015
Total Posts : 709
   Posted 7/18/2017 7:36 AM (GMT -6)   
My MD Anderson surgeon has performed over 2,000 RALP procedures - he usually does two a day. I also asked if he hands off the console to a resident for opening and closing. Nope - he's at the controls for the entire surgery. He's highly skilled and I've had practically zero continence issues.
DX - 1-13-2015 (age 66) -- PSA 4.02 (9-16-2014) to 4.38 (12-5-2014)
RALP on March 2, 2015
G6 to G7(3+4) to G7(4+3)
Stage pT3aN1
06/2017 PSA < 0.1
7/31/2015 HT - six month's injection of Lupron
ART 11/2015, 33 sessions

johncc
New Member


Date Joined Jun 2017
Total Posts : 2
   Posted 7/18/2017 10:05 AM (GMT -6)   
Thanks everyone for all your words of wisdom and encouragement! It really means a lot to me knowing that I've got this board to help me make this decision.

As I mentioned, I have an appointment with an RO, Dr. Buyyounouski, who was referred by the urologist. I just looked him on the web and it doesn't look like he specializes in SBRT. According to Stanford's website there are two RO's who specialize in prostate SBRT, Dr. Hancock and Dr. Zaky. Hancock looks to be the more experienced of the two so I'm going to change my appointment to Hancock.

I'm also planning to schedule a consultation with an SBRT RO at UCSF. If anyone has any recommendations for or experience at UCSF, please let me know.

Thanks again!
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