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Posted 10/12/2016 1:57 AM (GMT 0)
I was diagnosed with PC after a biopsy on 8/12/16. 7 pos. of 12. GS of 6,7,7,9,7,7,7. The GS 9 is 5+4. I'm considering robotic surgery or Proton treatment. The surgeon we are considering is Dr. Brian Helfand at North Shore Glenbrook hospital in Glenview IL. The proton treatment we are looking at is Northwestern Proton Center in Warrenville, IL. Anybody have experience or knowledge of either? thanks much
Posted 10/12/2016 2:15 AM (GMT 0)
welcome to HW, sorry you need to be here.

What was your PSA? That might affect people's answers to your question.

As long as the PC is in the prostate bed, either treatment would work fine and would be possibly curative.

Others might know the docs you mention.
Hang in there,
Andrew
Posted 10/12/2016 2:39 AM (GMT 0)
You should get a second opinion on your biopsy slides from Epstein at Johns Hopkins particularly with the one gl9 core. Your urologist knows how to get that done after you fill out the request form you can download at the Johns Hopkins website. It makes a lot of difference if you are gl 9 vs. gl 7. Also an mpMRI would determine if the PCa has escaped and that also would dictate treatment. I don't believe proton therapy conveys any advantage over photon therapy and Side effects could be worse. I would look into that or others will opine. You could google proton vs photon radiation therapy for info . As mentioned, your PSA history is also important info as both the level and the trend are necesssry input. Best of luck with whatever you decide but choose very experienced practitioners!
Bob
Posted 10/12/2016 3:02 AM (GMT 0)
Your doing the right thing. Check out your treatment team. Important!! (I don't know either you mentioned).

And since I don't know them all I can do is to underscore the need for a second opinion on those slides. Your urologist may even know how to do it with a phone call from you to his office. If not....get him the paper work.

I'd want to know if there's a consensus on that 9
Posted 10/12/2016 3:17 AM (GMT 0)
Jerry, The GS 5+4 is the big concern. Surgery will be futile if there is any possibility of it escaping the prostate capsule. What I read and hear from forums and supports groups is often a suggested regimen of hormones (to shrink the prostate) and then radiation when dealing with a GS 9.

PB is still growing in popularity, although the statistics so far don't seem any better than other forms of radiation. Within radiation, there are some very different protocols with dramatically different schedules and dosages. Take some time to research, ask, question, share, and don't commit until you are reasonably confident in a choice of treatment.
Posted 10/12/2016 3:57 AM (GMT 0)
Is that proton monotherapy or IMRT with a proton boost to the prostate?

If you're near Chicago, also consider Arica Hirsch at Lutheran General - she treats high risk patients with an SBRT boost. Brian Moran treats patients with a brachytherapy boost.
Posted 10/12/2016 1:48 PM (GMT 0)
Thanks for the quick responses. My PSA is: 7/2/15:3.79, 11/26/15:4.73, 6/1/16:6.29. I did get a second opinion from John Hopkins which confirmed the GS scores, especially the GS 9. I also did a consult with Dr. Arica Hirsch. My concern on hormone therapy is that it is a 2 year regimen with significant side effects that may take a long time to reverse, if at all. I had a CT scan done in mid-Sept that came back clear and a bone scan last week that also came back clear. My staging is a T1c. Whatever treatment option we choose, my hope is that the nerve bundles can be saved as much as possible. Given the GS 9, is that too optimistic? or do I have to consider the very high probability that is not possible? Thanks again for the responses.
Posted 10/12/2016 2:10 PM (GMT 0)
You can't really speculate on what the surgeon might find. The G9 cells could be anywhere.

It's possible nerves could be spared.
It's just as possible to wake up and find them gone.

Andrew
Posted 10/12/2016 2:35 PM (GMT 0)
You are definitely high risk with all the G7 and G 9. Often this indicates that surgery will have to be followed with radiation. This effectively doubles, or more, your risks and side effects. Using radiation combining external beam with brachytherapy is generally preferred for better cancer control and less significant side effects. HDR brachytherapy and SBRT external beam should be a good combination. Also, in Chicago you have a world class permanent seeds brachytherapy specialist, Dr. Peter Moran. I would definitely get a consult with him.

As to Proton, there is no magic and it is actually declining as most insurance and Medicare rarely reimburse for it. It is far more expensive than photon and has shown no advantage either for cancer control or side effects compared to the current photon methods. Ffifteen years ago before IMRT/IGRT/SBRT proton showed some advantage in lower toxicity, but that just isn't the case today.

As to HT (ADT actually, androgen deprivation therapy), I would certainly consider at least intermittent therapy. Perhaps 9-12 months then monitor the PSA. If no rise, then you would be OK. If it starts rising then you would go back on and/or look at additional therapies. The side effects are survivable, just inconvenient. The use can make a tremendous difference with high risk as you have absolutely no way of knowing whether some G7 or G9 has already set up shop outside the surgical or radiation area. Plus, if you choose radiation, the ADT weakens the PCa so the radiation is more effective. I was on ADT for 42 months and it took about 6 months for the side effects to reverse.
Posted 10/12/2016 2:56 PM (GMT 0)

Jerry58 said...
...My concern on hormone therapy is that it is a 2 year regimen with significant side effects that may take a long time to reverse, if at all. ....

Most likely any practitioner you chose is going to want you on ADT. I hated being on Lupron but it was absolutely the correct path for me and greatly enhances my odds of keeping the beast under control.
Posted 10/12/2016 3:04 PM (GMT 0)
I second the recommendation on Dr. Brian Moran. I did not have my procedure done by him, but did talk to him on a consultation. I was very impressed with him. He even gave me his home phone number and spoke with me from home. A Yooper had his procedure done by him with excellent results.
Posted 10/12/2016 3:05 PM (GMT 0)
Hi, Jerry, and welcome to the club none of us wanted to join. You've gotten a world of excellent advice already, and since I'm new here too, there isn't much specific treatment advice I can add.

I can say, though, that in my opinion there is a great difference between the area hospitals (I'm in the near-northwest suburbs of Chicago). Examples:

1. I am now in preparation for SBRT monotherapy with Dr. Arica Hirsch at Lutheran General Hospital in Park Ridge. She is simply wonderful. I have several concurrent sets of issues that make my relatively low-risk PC a more difficult case to treat. Dr. Hirsch has consistently gone above and beyond the call of duty to help me to find other resources (doctors to consult, etc.) and to make me feel that she not only will treat the disease, but also the entire patient.

2. Yesterday evening I attended an UsTOO prostate cancer support group meeting at Glenbrook. The group is primarily comprised of older patients, most seemingly treated some years ago and now dealing with salvage treatments for recurrence. Most (all?) were treated at Glenbrook. Is there a common theme among them? (Admittedly a small and biased sample, but all were treated there and all seem to have recurrences. The era in which they were treated might explain part of it.)

3. The presentation yesterday was about "The Newest Advances in Radiation Therapy for Prostate Cancer." Sadly, the presenter (a radiation oncologist at Glenbrook for 20+ years) was, IMHO, far behind in the current state and developments in RT for PC. At Glenbrook, their shining new accomplishment is that they can now shorten their radiation protocol from 50 daily visits to 36. The presenter actually stated that SBRT ". . . shows promise, but it is still experimental and there is NO data to prove effectiveness in PC." Where has he been for the past 10 years?

I don't mean to speak negatively about Glenbrook, per se, but I do not think a patient who uses the internet should just go there and ask what they can do. I feel that we, as newly diagnosed patients, should do a LOT of our own research. I would suggest strongly that you research the different treatments available for your particular pathology, choose a couple that interest you, and then consult with the best possible practitioners of those therapies. I cannot say which treatments would be best for you, but whichever ones you think would be good, you owe it to yourself to speak with the experts in those therapies, rather than just asking at the community hospital to see what they have to offer. Most of the community hospitals do not have the newest equipment, thus they will continue to offer possibly outdated therapies to new patients. These may work well, but there may be others that will work just as well with fewer or less serious side effects, shorter treatment durations, etc.

With your pathology, as the others have suggested, time may not be on your side. You've come to the right place to quickly learn what to look for and how to find it.

We'll be here for you.
Posted 10/12/2016 5:06 PM (GMT 0)
Hi Jerry...sorry to hear about your diagnosis. You've already got some good comments that I would mostly echo--the G9 is the problematic part of your diagnosis (FYI, I'm a G9 as well) and it makes surgery less likely to be curative. In my case, it looked like there was about a 50% chance that I would need radiation following surgery, so I cut to the chase and started with radiation. (In my case that was IMRT and HDR brachy, coupled with HT.) So far so good.

Good luck to you and let us know how we can help. There's a good group of guys (and some women) here.
Posted 10/12/2016 8:54 PM (GMT 0)
Hi Jerry, welcome and sorry you have to be here, especially with a high risks diagnosis. I would echo Michael T that the G9 is a problem. You may end up going on HT and having radiation anyway. All treatments have side effects, some short lived, some longer but in the end you have to decide on a treatment plan you can live with. I am sure you are doing as much treatment research you can right now. Doesn't hurt to have as many consultations as you can handle to get to the decision point. I wish you luck with your decision and treatment journey. Keep us posted. Take care. -JR
Posted 10/17/2016 2:43 AM (GMT 0)
Thanks much to all the responses. They have been very helpful in terms of pointing me in a variety of directions. the options are very complicated and doesn't appear to be any "magic bullet". I am still weighing the benefits of surgery vs. radiation therapy. I also met with Dr. Arica Hirsch, who was great in educating us and gave us all the time we needed to ask our questions. We also had a consult with Dr. Chang at Northwestern Proton clinic in Warrenville, Ill. Proton treatment option HT with lower side effects is appealing but precludes surgery as does any radiation therapy. With clean CT scan, PSA lower than 10, and clean bone scan, it seems the cancer may still be encapsulated so I am leaning to surgery. However, if the doctor tells me radiation after surgery is still recommended, that may impact my decision.
Posted 10/17/2016 9:17 AM (GMT 0)
I have come to believe that surgery is inferior for a GS9 diagnosis. To understand why, read the following article:

For very high-risk (GS9-10) patients, EBRT + BT is superior to surgery or EBRT only

As you can see, combination therapy with external beam radiation and brachytherapy and hormone therapy had the best outcomes. 10-yr biochemical recurrence rates were:
84 percent for RP (even though more than half had adjuvant/salvage radiation)
40 percent for EBRT
30 percent for EBRT + BT
Of course, there is higher risk of urinary side effects with the multiple treatments, but the cure rates have proven to be the highest.

I assume Arica Hirsch is offering IMRT with an SBRT boost in her clinical trial. I think it is a good one. The downside is that it's new and unproven as yet. The upside is that it may have a low rate of side effects. Proton therapy has no better outcomes or side effects than any other kind of radiation. Did you talk to Brian Moran? he can deliver the combination therapy that seems to be the most effective.

With surgery, they cannot know in advance what can be spared - that's a decision they make when they get inside - hopefully with a pathologist standing by to look at frozen sections. They also cannot tell you if you will need radiation until after pathology review and probably some PSAs. The poor rates of surgical cancer control for your type of PC (PSA<10 and GS≥8) were echoed in another large recent study, where the 10-yr biochemical recurrence was 64%; and 42% had salvage therapy.

Long-term Cancer Control Outcomes in Patients with Clinically High-risk Prostate Cancer Treated with Robot-assisted Radical Prostatectomy: Results from a Multi-institutional Study of 1100 Patients
Posted 10/17/2016 12:35 PM (GMT 0)
Jerry and Tall Allen - Since I'm also a patient of Dr. Hirsch, I keep a lookout for what she has going on. Her clinical trial (NCT01985828) indicates that ". . . High risk patients will be treated with CyberKnife SBRT boost followed by IMRT." The study will accept patients with Gleason scores 2-10, having PSA less than or equal to 50 ng/ml, etc, so it looks like Jerry could qualify, if he is interested.

I imagine that Dr. Hirsch mentioned this trial to you, Jerry.
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