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Posted 4/23/2018 7:54 PM (GMT 0)
I have an excellent gastroenterologist because he's thorough and cares. During my recent colonoscopy, he observed a prostate nodule and suggested I get it checked out. So I did via a prostate biopsy. Recent physical exam (week before colonoscopy) came back with a PSA of only 2.4, so I'm thinking the nodule has to benign.

I wasn't so fortunate. I was diagnosed with G 3+4, type T2a, so I am currently assessing my options, and my online research led me here. My urologist had a Decipher test done, and it came back with a "low risk" assessment, meaning if I have a RP done, there's a 95% confidence level of a good long term outcome. If nothing else, it also means I'm right on the cusp between AS an treatment, but I firmly believe my "4" score dictates treatment and that's what I'm trying to decide upon. I also have enough time to come to a fully informed final decision regarding treatment. Since I'm only 65, I figure I should try to plan on another 20 or so years post treatment.

So far, I've consulted with my urologist who recommends a RP since it leaves me with a "Plan B" if there's ever a recurrence, and with a well-regarded oncologist regarding radiation treatment. He told me Brachy is not advised due to the location of my cancer cells, but I am wondering if that's because he doesn't do Brachy (it's difficult for me not to be cynical when dealing with the medical-industrial complex). So he also advises against Cyberknife, but says I'm a candidate for either IMRT or IGRT, and upon my mentioning of Proton treatment, suggested that I could investigate that as well.

My next consult is with a surgeon who is allegedly highly proficient performing RP with the DaVinci equipment. I'll likely round out my research by taking a trip to consult with a Proton Therapy treatment center and then try to figure it all out from there. As I read from a post here, and had previously concluded from my own research thus far, the ultimate treatment outcomes seem to be based on the skill of the doctors and each form of treatment has its own set of adverse potential side effects and related issues. My hat's off to everyone who's already been through this ordeal and is happy with their choices.

I'm very grateful to have found a place where I can benefit from the knowledge and experience of others that have traveled down the path I am now embarking on.
Posted 4/23/2018 8:29 PM (GMT 0)
I think you should consult with at least one more radiation oncologist - maybe one who actually does SBRT (CyberKnife is one "brand" of SBRT). I cannot imagine why you would be a candidate for IMRT or IGRT and NOT SBRT - except maybe if he does not have the equipment to deliver SBRT. The research shows that SBRT has even better efficacy than IGRT/IMRT, with less side effects and greater convenience. The problem with all the radiation treatments is that unless you are talking with a practitioner of that specific mode of treatment, you will not get the full and objective discussion you need.

Think of it this way, it is sort of like asking a Hyundai mechanic to advise on a subtle problem with the electronic frammistan of your Bentley. They may know something about it, but there is no reason for them to be fully informed and proficient at it.

Whichever way you decide to go, remember that time is on your side. You can take months to learn and decide which treatment is right for you, without affecting your ultimate outcome due to the wait.
Posted 4/23/2018 8:30 PM (GMT 0)
Welcome, Boosted!

You seem to have an excellent attitude - I wish everyone had your attitude of taking his time and remaining skeptical about what you hear from one specialist about specialties he has no knowledge of.

Of course all treatments have a high probability of curing you. it sounds like you are seeking experienced surgeons. As far as radiation, I think SBRT and either kind of brachytherapy are your best bets. IMRT and protons are unnecessarily protracted, expensive and have no better outcomes or toxicity. If you only had one or two positive cores, focal therapy, which is experimental and expensive, may be looked at as a way of prolonging active surveillance.

There are salvage treatments available after every primary therapy, but with 90+% cure rates, that would be a minor concern anyway.

It's always a good idea to get a second opinion on the biopsy from Epstein.

If you tell us where you're located, we may be able to suggest doctors.
Posted 4/23/2018 8:45 PM (GMT 0)
Welcome to HW, sorry you need to be here.

If I were in your place, I'd be looking into SBRT. It's been proving to be effective and low on the side effects.

But any of the choices will be curative and the choice confusing. Find a good RO to talk to and get a second opinion or two.

Keep us updated on your progress.
Andrew
Posted 4/23/2018 9:03 PM (GMT 0)
Sorry about your diagnosis, but glad you found us. And I had to chuckle since the subject of your post probably describes the way that 90% of us found HealingWell. (But I'd have to say that you sound much calmer than most of us when we get here!)

You're onto a great start at learning your options. I would just recommend two things: 1) getting the second opinion on your biopsy slides from Epstein at Johns Hopkins and 2) making sure you talk to a radiation oncologist that specializes in SBRT and other that specializes in brachytherapy, particularly HDR brachy for the best info on those treatments. (And ask them about back-ups...)

BTW, although I'm no doctor I can't see why the location of your cancer affects your eligibility for either CyberKnife (SBRT) or brachytherapy. I had a doctor tell me I wasn't eligible for brachy because my cancer was in both lobes of the prostate--that was incorrect and I actually did (successfully) have brachy.

Good luck to you and I hope we can help.
Posted 4/23/2018 9:49 PM (GMT 0)
Thanks for the responses. I know I've found a helpful resource!

Okay, my interest is piqued, how does one go about arranging for "Epstein" to examine and provide a second opinion on the pathology report? Seems like a worthwhile thing to do. Is the concern that initial readings under estimate the cancer, or that they potentially over estimate?
Posted 4/23/2018 10:08 PM (GMT 0)

Boosted said...
Thanks for the responses. I know I've found a helpful resource!

Is the concern that initial readings under estimate the cancer, or that they potentially over estimate?

Forrest Gump: You never know what you are going to get
Posted 4/23/2018 10:27 PM (GMT 0)

Boosted said...
Thanks for the responses. I know I've found a helpful resource!

Okay, my interest is piqued, how does one go about arranging for "Epstein" to examine and provide a second opinion on the pathology report? Seems like a worthwhile thing to do. Is the concern that initial readings under estimate the cancer, or that they potentially over estimate?

A little more than half the time the results are confirmed by having a 2nd, expert opinion look at them...but nearly half the time they come back slightly different. A little more than half of the time that they come back different they are higher (unfavorable), and a little less than half the time that they come back different they are lower (favorable). That might sound a little confusing; restating while rounding off:
*50% same
*25% higher
*25% lower

Here's the link: pathology.jhu.edu/department/services/secondopinion.cfm

Have it sent through your doctor...they are used to handling the samples. And don't worry, it's no insult to them.
Posted 4/23/2018 10:30 PM (GMT 0)
Here's a link to a recent article about AS in 3+4 cases.

Link: /prostatecancerinfolink.net/2018/04/19/active-surveillance-in-men-with-gleason-3-4-7-prostate-cancer-at-diagnosis/

In summary, if you have most other case characteristics favorable, cases like your might eventually have to move to a deferred treatment more frequently than a 3+3 case, but the cancer risk is really not different.
Posted 4/23/2018 10:42 PM (GMT 0)
Hi Boosted—my husband is in the process of researching treatment options so your post is of interest.

He was originally diagnosed with 3+3=6 and we were hoping for active surveillance. We opted for second opinion from Epstein at Johns Hopkins, to make sure the Dx was accurate. My husband picked up his slides from his urologist and mailed them himself (not sure if Kaiser would have helped us with that, don’t think so). We got the results in less than two weeks.

The results upgraded him to 3+4=7 with perineural invasion in two cores (which may or may not even matter, some say). But regardless, we no longer felt comfortable with AS.

We also had a 3T MRI done. It shows a high liklihood of extension beyond the capsule, which upgrades his Dx to unfavorable intermediate. He had high percentages of positive tissue in 6 of 12 cores.

We have met with urologist, brachytherapy RO, and have appointment with SBRT guy this week. Trying to make best treatment decision for his scenario.

We are personally glad that we had imaging done, as well as Epstein opinion. Some say MRI is not necessary, which it may not be for everyone, but each piece of new info changed things for my husband considerably.

Best of luck and I’ll be interested in seeing what you decide!
Posted 4/24/2018 12:28 AM (GMT 0)
Boosted...This is a great forum with sound advice already given. The excellent cure rates and low side effects of SBRT treatment seemed like the best fit for me. IMRT would have required 42 treatments instead of five for SBRT. Since insurance reimbursement is based on the number of fractions delivered the skepticism in me makes me wonder if it plays a roll for some Dr.’s.
Posted 4/24/2018 1:56 PM (GMT 0)
Its clear from my info below what path I recently took. I would never try and sell any treatment just because it was right for me. People choose different treatments for different reasons and urologists wirth their salt give you options for ylu to decide because there are potentially positive outcomes no matter what treatment you choose.

Its a very personal choice as far as I can see once you have informed yourself and it has a lot to do with age, personality, circumstances and health. There are always risks and uncertainty with any treatment. For me, the big questions were what risks am I willing to take and what uncertainties do I want to try and elimnate?
Posted 4/24/2018 3:45 PM (GMT 0)
I am not sure what the doctor meant by brachytherapy is not advised due to the location of your cancer cells. That doesn't make any sense to me but what do I know?
Posted 4/24/2018 5:25 PM (GMT 0)

Tall Allen said...

It's always a good idea to get a second opinion on the biopsy from Epstein.

If you tell us where you're located, we may be able to suggest doctors.

I like the idea of an expert second opinion on the biopsy. Do you have contact information for "Epstein" (not familiar with this person)?

I'm located in the Atlanta area. Plenty of doctors to choose among; just knowing the "right" ones would really help me out. Specifically, I would appreciate recommendations for Atlanta area doctors that specialize in Brachy, Cyberknife, and Laparoscopic RP surgery. Anyone have some suggestions?
Posted 4/24/2018 5:37 PM (GMT 0)
A little internet research suggests "Epstein" refers to Jonathan Epstein at John Hopkins. Can anyone share the approximate cost of having a second pathology study done? Thanks.
Posted 4/24/2018 5:58 PM (GMT 0)
Boosted, you had some good advice here.

I am 65 and was diagnosed this past February after a routine visit's DRE showed something was up. My PSA was 4.47. Biopsy found G6 (3+3) and G7 (4+3). I did my research and elected the surgical approach. I am in Montana and was looking for a place that does LOTS of these so I sent my slides to Cleveland Clinic for a 2nd opinion, which matched the first, and went there for a consultation and to meet a surgeon that was recommended by my urologist here.

I had RALP surgery in Cleveland on March 14. Pathology report afterwards was good, no spread, and the G7 was downgraded to a 3+4.

Except for an inguinal hernia diagnosis at week 5, I have been doing pretty well. I am a serious runner and started walking at week 4, just a mile or two, on an indoor track. Last Sunday my "diaper" was filled with blood after the walk. I called the local urologist who suggested that I'd over done it and broken a "scab" off the new connection between the urethra and the bladder and it should clear up in a couple of hours. It did. I am on rest for 4-5 days.

As for the decision about which treatment route to take, it is going to be highly individualized. Regardless of the path you take, you will get support on this forum. The only piece of advice I'd give is to not look back and go through any "buyer's remorse" afterwards.
Posted 4/24/2018 6:37 PM (GMT 0)

Boosted said...
A little internet research suggests "Epstein" refers to Jonathan Epstein at John Hopkins. Can anyone share the approximate cost of having a second pathology study done? Thanks.

pathology.jhu.edu/department/services/secondOpinion.cfm

Cost appears to be $250; I suggest that you find out if insurance might cover (part of) this.
Posted 4/24/2018 6:42 PM (GMT 0)
Here's the link for Epstein (it's in the sticky for the newly diagnosed too);

pathology.jhu.edu/department/services/secondopinion.cfm

The last I heard they were charging $250.

For urologists in Atlanta, see:

/www.healingwell.com/community/default.aspx?f=35&m=4006162

For SBRT, WellStar Kennestone Hospital offers CyberKnife. I can't recall the name of the radiation oncologist that someone on HW recommended. JNF can fill you in on brachytherapists in Atlanta.
Posted 4/25/2018 9:39 PM (GMT 0)

Tall Allen said...
(it's in the sticky for the newly diagnosed too)

I'm embarrassed to admit I didn't bother to read the sticky threads (great info BTW!) before piping right into the discussion forum. Long story short, I texted my urologist and told am I wanted a second opinion on my slides done by Epstein at Hopkins. He said no problem, they usually will get second opinions from either Hopkins or Mayo. So the second opinion is now underway.

But my question, which I didn't ask him, was why had he not suggested getting a second opinion to me? I guess I didn't know the option was available on pathology slides, so I didn't know to ask. But he knew and should have asked me if I wanted a second opinion. I've already gotten value from being here and for that I am grateful.

And I'm making progress; I now have an appointment with a brachy RO specialist for a consult, and am still seeking a local SBRT guru to consult with as well. The quest for knowledge continues . . .
Posted 4/26/2018 12:24 AM (GMT 0)
You'll find that there are a lot of things they might not tell you if you don't ask. For questions to ask, see the links in the subsection titled "The Interview":

/pcnrv.blogspot.com/2017/12/finding-right-doctor.html

I should have mentioned that I am not a fan of RCOG for cases like yours. They treat everyone with a cannon, even when a flyswatter would do.
Posted 4/26/2018 12:45 AM (GMT 0)

Boosted said...

So far, I've consulted with my urologist who recommends a RP since it leaves me with a "Plan B" if there's ever a recurrence, and with a well-regarded oncologist regarding radiation treatment. He told me Brachy is not advised due to the location of my cancer cells, but I am wondering if that's because he doesn't do Brachy (it's difficult for me not to be cynical when dealing with the medical-industrial complex).

There are two totally different types of brachytherapy, and don't rely on an oncologist to know much about either. High Dose brachy does not have the prostate size limitations of Low Dose (seeds) brachy. You need to consult with practitioners of each.

The "Plan B" statement is a typical talking point of urologists trying to steer men towards surgery. In fact, there are several "Plan B's" should there be a failure with primary radiation, which is not common.
Posted 4/26/2018 12:49 AM (GMT 0)
Let me add a belated welcome to our club. You're already starting on the path of learning, which is vital. I already see you've encountered one of the great semi-truths of this disease: That surgery is better because you have a fall back if it fails.

Let's look at the statement:

1. As a low-intermediate risk patient, why are they suggesting you'll even NEED second-line treatment? Your odds of CURE with primary treatment is incredibly high--like >90%.

2. This suggests that there is NO second-line treatment available after primary radiation. Simply not true. There are salvage methods available for every primary treatment.

3. Mostly true is the statement that second line surgery after radiation is not usually recommended. The internal damage done by radiation DOES make surgery after radiation very difficult--not impossible, but difficult.

Most of us have heard that speech--usually given by a urologist--who is a surgeon by training.

Fact is, ANY of the first line treatments are likely to cure you. The question is about availability, time constraints, and side effects. That's where the research comes in. How far are you able to travel for treatment? How much time can you take off from work (if you're not retired)? How much down time are you willing to tolerate? How much risk are you willing to take related to side effects such as incontinence and ED? What will your insurance cover? These are all questions to be answered--and the answer is very personal. Honestly, all any of us can do is share what we did, and why we did it, and how it's turned out.

I did surgery, going on 3 1/2 years ago, and I'm doing great. No significant side effects, cancer free, and life is good.
Posted 4/26/2018 9:49 AM (GMT 0)
Hi Boosted, we have a similar state of disease. I would encourage you to deeply study all the options. I was set on having surgery and when I learned about HDR BT I choose that. I would suggest you have lots of time to decide. I waited almost 5 months and saw numerous doctors. My second opinion pathology upgraded one core to 3+4.

I would encourage you to evaluate the stress of each procedure, each recovery period and potential side effects. They all have the same cure rate. For me, the ease of two HDRBT sessions, back playing golf the next day after each session and only minor temporary urinary urgency (a week or so) tipped the scales for me to choose HDR-BT. I am not suggesting this is right for you, only you can make that decision but please study them all.

If you have questions ask here and then write them down for your next doc visit. Be well Denis
Posted 4/26/2018 3:50 PM (GMT 0)
As Denis says, It is good to base your treatment decision on the side effects and stress the treatment will create (both physical and emotional). You plan to live a long life, and in doing so, you will have to live with the side effects of treatment. The treatment having the most tolerable side effects, assuming that the cure rates are similar, may become the most attractive to you.
Posted 4/26/2018 5:39 PM (GMT 0)

Paxton said...
The treatment having the most tolerable side effects, assuming that the cure rates are similar, may become the most attractive to you.

Good advise, long with finding a highly skilled physician. Do explore SBRT. The process is non-invasive, the results are quite impressive, and it has a well established track record.

Good luck!
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