Newly diagnosed - looking for insight

Hey Walton
Sorry you had to find us, we are a helpful bunch of people that have been through what you are going through. Getting the news is one heck of a shock, not what you ever want to hear. My advice is to get educated by looking through this forum and reading two book, one from Patrick Walsh and the other from Peter Scardini. I see that you have "probable extracapsular extension". That's more serious than what I had to do deal with. Give it 24 hours, you will have several responses from folks that have already gone through what you are facing.

We are here to support you, feel free to lean on us

Pat

Hi Walton,

Welcome to the ugly world of prostate cancer :-(

If you haven't already done so, you will want to read the sticky "Newly Diagnosed with PC? Read this first.". It will explain a lot of the unfamiliar terminology. I also highly recommend you get a second reading on the biopsy slides from Bostwick or Epstein.

Assuming your bone scan is negative, and with your relatively low PSA, it probably will be...

Your stage T3a and your two intermediate risk features (Gleason score 4+3 and PSA>10) puts you squarely in the high risk category. I think it is highly controversial to have surgery when you know the cancer is outside of the capsule. Surgery can only remove cancer within the capsule, and salvage radiation after surgery compounds its side effects. Radiation, on the other hand, treats an area outside of the capsule, so it seems to me that you have a better hope of getting it all, and with fewer side effects, with one set of radiation treatments.

The man to talk to is Dr. Zelefsky at MSK. I'm pretty sure he would recommend IMRT to the prostate and prostate bed with a brachy boost to the prostate. The brachy boost is instrumental in killing off the high volume of cancer in the prostate. He may want to start you with a couple of months of ADT and run it for 6 months during and after.

If you want another perspective, talk to Dr. Allan Katz in Flushing. He's successfully treated many high risk men like yourself with SBRT in just 5 short treatments (and without ADT).

Whatever you choose, you owe it to yourself to investigate the alternatives before deciding. This can be a life-changing event, one that you don't want to rush into.

I completely agree with TallAllen's view of your situation.
Some form of radiation seems more appropriate from what your are stating.
You are in the right place to gain great knowledge. I am T3a -7 years out of surgery. Possibly looking at salvage radiation -last PSA was still very low- .04-Gleason 3+4=7
Welcome

Welcome to HW, sorry you need to be here.

Allen's got some good recommendations for you. You need a second opinion and really need to talk to an RO. I went with radiation over surgery in small part because I wanted them to get a suspected area just outside the capsule at the same and not have to do surgery and radiation. Worked for me, your mileage will vary.

It's a huge shock to the system to learn you've got PC so while you're dealing with all the physical things, be sure to tend to the emotional and spiritual side of this. There are a lot of changes and major decisions heading your way and they're going to come fast.

Hang in there and keep us updated.
Andrew

Thanks for the welcome and the thoughtful advice. I had an almost normal day with my family and haven't thought too much about things. Will arrange the bone scan and speak with my doc tomorrow. We still haven't talked through it yet as he called while he was off for the holiday. I will get a second opinion once I have a handle on what the current plan is and why surgery is the first (only?) step given my stats.

Seems there are no good options - just have to find the least destructive path forward and prepare to weather the storm.

I'll check back when I know more - thanks again.

Post Edited (Walton) : 9/1/2014 7:41:46 PM (GMT-6)

Walton- I'm confused as to where you are- in your original post - now edited- you mentioned MSK. If you can use UCSF, the man to see is Mack Roach III. If you are stage T3a, surgery followed by radiation increases side effects, and is probably not your best option. You can probably get by with HDR brachy monotherapy by driving to see Alvaro Martinez at 21st Century Oncology in Detroit (Cleveland Clinic doesn't offer that). Another option is SBRT, but you might have to come to UCLA for that. All this assumes a clear bone scan.

- Allen

Thanks for the quick replies -

I am currently in Arkansas on a project and being seen in Dallas.

I reached out to UCSF on their website last week, but have gotten no response - I'll follow up with a call to Dr. Roach.

The problem with radiation treatment first is that surgery cannot be done after---I was told that at 52, and healthy, surgery was the best option.

My personal feelings have been influenced by the results I've seen in the only two I know that have been treated for PCa - the one that was treated with the seeds is still suffering terribly from the side effects and using a catheter more than a year after treatment, just so he can take a leak. The surgery went well for the other.

I know the examples above don't apply directly to my situation, but it is where my thinking started. I'd also like to hear about radiation therapy being the best option from a doctor that was not selling it. As mentioned in other threads here - the hammer sees everything as a nail. My current doc is an accomplished surgeon. I respect his experience but also question his bias. This is where I thought that the Cleveland Clinic might be the right source - highly respected and in the business of giving second opinions hopefully looking at all of the available options.

I need to get the best info on my specific condition with the least amount of bias.

Again, thanks for hearing me and helping.

Post Edited (Walton) : 9/7/2014 11:00:57 PM (GMT-6)

I really anguished over my treatment options (rather publicly here) so I do know how tough the decision you're facing is. I do think it's great that you are seeking out other opinions and I encourage you to ask for it from the top notch doctors.

To follow up on a few of your points...if you're concerned about getting a bias-free opinion I recommend that you consult with an oncologist that specializes in prostate cancer. That was the eye opener for me. Dr Lam (Prostate Oncology Specialists in Marina del Rey) spent close to two hours with me on my initial consultation staging my condition and reviewing my treatment options. If you can find your own Dr Lam (or consult with either him or his colleagues--perhaps over the phone) I believe you would find that extremely helpful.

As to the having surgery first so you have radiation as a fall back, I agree with Redwing that you then have the SEs of two treatments. In my case, surgery had a decent chance of not working--so I chose to cut to the chase and make radiation (in my case HDR brachy) as my primary treatment.

Re the SEs, I'm very sorry to hear about what your friend that had seeds is going through. It does tell you what a roll of the dice this whole thing is. But in general, brachy and external beam radiation have SEs that are no worse than surgery and, many say, might even be somewhat better. I'm only one data point, but I currently have no SEs from my HDR brachy combined with IMRT. (That said, it's only been 18 months so it's still relatively early. And we're also fortunate to have some surgery guys here that have re-covered very quickly--particularly those with rock star surgeons.)

I hope this doesn't come off like a "don't have the surgery post." Surgery may be very valid for you. But based on the points you raised in your last post, I did want to raise an alternative way of looking at your options.

Good luck...I was in your shoes just about two years ago.

Walton said...
Checking back in -

I have spoken to my doc and am more comfortable, he was thorough and answered all of my questions but still want at least a 2nd opinion if not a third. He is convinced that surgery is the right path.

I'm considering using the 2nd opinion service that the Cleveland Clinic offers called "My Consult". They are supposed to be one of the leaders in the field. Anyone used this service or one of their urologists/oncologists?

I am also considering the SF Bay area as I have family there - leads would be greatly appreciated.

Still waiting on the bone scan results - bad news there will be a game changer.

Thanks,

I have no opinions in your particular case but I think the opinions of your physician should carry some weigh. A second opinion from another qualified physician is an excellent idea going forward.

However, to provide a counter point, here is a peer-review article on the benefit of surgery for high risk prostate cancer cases:

www.ncbi.nlm.nih.gov/pubmed/23702565

Good luck and best wishes.

Hi Walt,
Since time is at a premium for you, it might be helpful for you to refer to a little list I did of treatment times:

2. Finding the right doctor

I think the shortest treatment time for you would be SBRT, but there are only a few ROs in the US doing it on high risk cases like yours. That would include Dr. Katz in Flushing, NY, Dr. King in L.A., and Dr. Mantz (I think)in Ft. Myers, FL. Those would take about 2 weeks, including fiducial placement, imaging, and 5 treatments every other day. There is no down time afterwards (I went to the gym after each treatment).

Walton
A SF Bay Area surgeon, Richard K. Long in Fremont Ca., did my DiVinci. I couldn't be happier. I would be happy to give you more info. if wanted. Email me at [email protected] if you want more.

I also agree with Tall Allen's post on 8/31. I just thought I'd jump in with my recommendation for another opinion IF you were interested in a SF Bay Area guy. I wish you the best. This is a tough time for you but just do as much research as you can before you make your decision.