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Second opinion on BX from JH - some good news, some bad news

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Posted 7/20/2015 7:33 PM (GMT 0)
We got the report from Dr Epstein today. He mostly concurred with the report from the Cleveland Clinic, but below are the differences.

Right apex
CC - adenocarcinoma, G7(3+4), 2 of 2 cores, 60%, 40%
Epstein - concurred, but noted that 20% was at grade 4

Target (still not exactly sure what part of the prostate this came from, but we think it is of the mid left lateral peripheral zone identified thru the MRI)
CC - adenocarcinoma, G7(3+4), 2 of 2 cores, 20%, 10%
Epstein - G6(3+3)

Left base & left mid
CC - benign
Epstein - high grade PIN

It was great to get the downgrade on the "target" from G7 to G6, but not so great to get the PIN involvement. Walsh's book doesn't say much about PIN, but we understand that those cells are most likely in a precancerous state.

We are meeting with the urologist (surgeon) on Wednesday. We are looking for RO recommendations at CC or nearby.

TIA

Suz
Posted 7/20/2015 7:56 PM (GMT 0)
Hey Suz-
That's great news! I really don't see any bad news there. (ignore the PIN - it's not important). He has less higher grade cancer than you thought. Only 2 cores of GS 3+4! That even opens up the option of focal therapy, if you decide you want that.

As for ROs at Cleveland Clinic, you can make appointments with Kevin Stephans for SBRT, and with Jay Ciezki for LDR brachytherapy. For HDR brachy, I recommend you go to Detroit and talk to Alvaro Martinez. Unfortunately, there's no such thing as a "general all-purpose RO." They each have their specialties and are not especially well-informed outside of their specialties, so you have to make a few appointments. Fortunately, with that improved Dx especially, you have time for that.

- Allen
Posted 7/20/2015 8:11 PM (GMT 0)
suz, that is overall a good report. The downgrade in particular. He's still very much in the running for a complete cure, no matter what direction you choose to go. And, as TA said, you've bought some time with the downgrade to really make a thoughtful and informed choice.
Posted 7/20/2015 8:13 PM (GMT 0)
Good news.

Keep us updated.
Andrew
Posted 7/20/2015 8:31 PM (GMT 0)
Suz, Great news! Now you have some time to figure everything out. Keep us updated and all the best to both of you!
Posted 7/20/2015 8:36 PM (GMT 0)
Suz,
Changes most likely will have little to no impact on which course of treatment you decide on. It looks to me that you have all options available to you. Good luck with your treatment decision.

Regards,
Kris
Posted 7/20/2015 8:56 PM (GMT 0)
PIN is normally considered insignificant if cancer is noted elsewhere in the prostate.
Posted 7/20/2015 9:21 PM (GMT 0)
Thanks for all the reassuring words regarding the PIN DX. I have not yet seen the report from JH. Steve read it to me over the phone, so hope I've got all the details right.

Allen - thx for the recommendations to Ciezki & Stephans. We plan to talk to them both. Another name we got was Rahul Tendulkar. Steve seems very interested in the SBRT. Can you direct us to some information on that? I've done some google searches, but the results are all over the place and I want prostate specific info.

TIA
Posted 7/20/2015 9:55 PM (GMT 0)
I would second Steve's interest in SBRT.

I did mine as a G9 at UCLA by Dr Chris King on 10-20-2014 with no adverse side effects. so a a G6/G7 Steve should be in good hands at Cleveland Clinic.

5 fractions SBRT beats the heck out of 7 weeks IMRT
Posted 7/21/2015 12:41 AM (GMT 0)
Suz-
Click on the link in my signature. That's the longest running single-institution study.

- Allen
Posted 7/21/2015 1:35 AM (GMT 0)
Allen - I read the study and sounds like Steve is a great candidate for SBRT. I also dug a little deeper and found the Katz and Kang QOL and Toxicity study that was published on 10/28/14 and that sounded encouraging, too.

Here's a general question we have. Is it SOP to have a bone scan and CT scan after a PCa DX? Is that the best way to determine that the cancer is confined to the prostate?

Suz
Posted 7/21/2015 1:58 AM (GMT 0)
I think I found the answer to my question re the bone and CT scan in the "new to PC" sticky. Looks like the AUA only recommends these additional tests when PSA is above 20.

I was pretty sure I read about this some place but just could not remember where.
Posted 7/21/2015 4:58 AM (GMT 0)
Good sleuthing job, suz! Things like bone scans only cause problems in men with your husband's Dx. They will often "light up" with things like arthritis or childhood bone breaks and cause all kinds of unnecessary delay and worry. With a GS3+4, they are pretty sure it's contained, and because the radiation treats a margin outside of the capsule too, there is rarely a problem. As you see, the "cure rates" are over 90%.

Dr. Katz is excellent if you feel like taking a 2-week vacation in NYC (although I think getting it done locally by an experienced RO is equally good). If you want to ask him questions, sign on to cyberknife.com prostate cancer forum. He often shows up there and is wonderful about answering questions.

- Allen
Posted 7/21/2015 10:04 AM (GMT 0)
I think a lot of Uro's (mine did) have patients do a contrast full body CAT scan and a bone scan regardless of gleason score, even tho it likely won't show anything. Why? Because it falls in the category of what's "expected". I remember the conversation with the nurse who gave me the dx news. I asked "what's next?" And next was a bone scan and cat scan. I also remember a number of people, when I told them of the dx, the first thing they asked was, "when is your bone scan?", with the clear indication that if I didn't have one, then my doc wasn't doing his job.

I'm neutral on the topic. Yes, it cost some money, and it came up negative, but it does provide that ever elusive bit of peace of mind. And it showed a hiatus hernia and early arthritis in my shoulders and left knee...that I already suspected.
Posted 7/21/2015 10:44 AM (GMT 0)
Suz, as you have already heard from the others, the diagnosis now looks pretty good. Personally, I think you should starting thinking "cure" and "happy life". I agree with Allen re the scans, they are certainly not required with your husband's stats.

I think SBRT would be a great choice but would still encourage you to consider LDR and HDR Brachy so that you have done your due diligence. If I recall my geography correctly, you are 5-6 hours from Chicago. One of the world's premier LDR Brachytherapists is there - Dr. Brian Moran at the Chicago Prostate Center. Several of our members have been treated by him with outstanding results. You might want to at least check out his web site and/or do a phone consult with him.

Jim
Posted 7/21/2015 1:01 PM (GMT 0)
Thx for the input re the scans. I think they will probably go ahead with the bone and CT scan as a precautionary measure. Steve's had an unintended weightloss over the last year from around 165 to 152. -- he's 6'1", BMI around 20, which is still considered "healthy", but the drop has been concerning, even before the PCa DX.

It would be great to pursue seeing Dr Katz or Dr Moran, but we are still on private insurance, so will most likely have restrictions about going "out of network". Our health plan pretty much forces us to use the Clinic and won't cover services or stays at University Hospitals main campus (although they will cover some of the UH suburban satellites). I would gladly take out a new mortgage on house we just paid off but I don't think Steve would go for it.

I will definitely be checking out the Cyber Knife and Dr Moran's website, just to keep learning all we can about this hideous disease.

Also wanted to mention that Steve tried to get in touch with Dr Epstein today to get his recommendation for a treatment plan. The good doctor is on a well-earned vacation this week. His secretary, Jackie, is going to have Dr Netto get in touch with us.

Suz
Posted 7/21/2015 3:33 PM (GMT 0)
Re going out of network, I have a higher rate of co-insurance and a separate deductible when going out of network, but there was also a max out-of-pocket on costs regardless of whether I was in- or out-of-network. If you have something similar your max OOP may not be any different. Might be worth checking your plan...
Posted 7/21/2015 5:49 PM (GMT 0)
Good thought, Michael_T! I think my out of pocket for non-network is something like $5,000. That is definitely something to keep in mind. I'm thinking we'd have to get pre-approval for going out of state, but I'm sure it's been done before. Thank you for pointing out the obvious.

Since we've been on this PCa journey, I feel like I have tunnel vision. I'm definitely not focused on work (luckily, I'm pretty good at my job so no one has noticed - lol) but I wore the same clothes to the office two days in a row and my female coworkers definitely noticed that! I'm so thankful for this forum and knowing you guys have got my back!

Suz
Posted 7/21/2015 6:08 PM (GMT 0)
And it's OK if you wear the same clothes every time you come here. :-)
Posted 7/21/2015 6:11 PM (GMT 0)
I did that at work in January when my husband was first diagnosed, too! Have finally gotten my concentration back, but have to check in here several times during the day. Luckily, I'm pretty good at my job, too and no one checks on my Internet usage! :-)
Posted 7/21/2015 6:19 PM (GMT 0)
LOL - good one, Allen.

BTW - waiting to hear back from Kevin Stephans' office. He'll be on vacation the next two weeks and this week's schedule is already double booked. July seems to be a particularly bad time to find out you've got cancer -- not that there is ever a good time....

Suz
Posted 7/21/2015 6:22 PM (GMT 0)
No worries - there's nothing in the Dx that makes it a rush. When you get an appointment, shoot me an email if you want some interview questions for him.

- Allen
Posted 7/22/2015 4:20 AM (GMT 0)
Suz,

You have many options, and the time to consider and evaluate all of them.

In my case, my doctors at Johns Hopkins have mentioned cryotherapy and focal laser ablation, should my cancer ever progress. Several of my friends have done proton beam therapy. Others have gone to Europe and done HIFU. All are satisfied.

I was told five years ago that they could "see" cancer on my slides. But, today, there has been NO progession. So...take your time, read and ask incessantly, and make your own carefully considered decisions. Good luck.
Posted 7/22/2015 1:14 PM (GMT 0)
Hi SueCAll - good to hear from another wife who struggled when her hubs got the DX. It gives me hope to know that 6 months out you're able to focus on other things besides PCa.

Allen - looks like we won't see Stephans until the week of Aug 17th. I will get in touch with you closer to that time. In the meantime, do you have an opinion re whether SBRT is delivered via CyberKnife or Calypso?

ASAdvo - thx for the reassurance on taking our time. I'm curious regarding any steps you are taking to keep the cancer indolent, ie, dietary changes.
Posted 7/22/2015 5:22 PM (GMT 0)
Calypso is not a delivery method, it's a tracking system. When stimulated, they emit a radiofrequency signal that can detect the precise location of the prostate. It can be used with any radiation delivery system, I think. It's an alternative to gold fiducials, which are detected by cone beam CT and/or stereoscopic X-rays. I think either image tracking device is about equally good. The important thing is that intra-fractional tracking be used, because with the extreme hypofractionation of SBRT (unlike IMRT), even a small difference can have consequences.

Accuray's CyberKnife is a delivery system for SBRT. It has a "robot" that very precisely moves around the patient and shoots X-rays from each location after alignment with the tracking system. There are several other delivery systems (e.g., Varian's Truebeam with RapidArc) that can be used to deliver SBRT.

Each RO and treatment center will have their preferred tracking system and delivery system, so unless you want to change treatment centers, that's not a patient choice.

- Allen
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