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Old 10-27-2012, 01:56 AM   #16
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Wink Re: A little concerned

I had a negative biopsy at PSA 16 and a single positive core at PSA 20 about 18 months later. A volume of 135cc masked something bad starting to form.

The bottom line is that the second biopsy showed up something that the DRE missed. Furthermore, the biopsy revealed something virulent (Gleason 3+5) that needed attention.

I didn't have much choice on treatment, so I opted for surgery and the biopsy on the organ removed indicated nothing on the margins or in the lymph nodes. My interpretation of events is that the biopsy picked up something before it spread.

 
Old 10-29-2012, 06:40 PM   #17
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Re: A little concerned

Well. I got my results back. I had a 12 core done. All six cores on the right side were 3+4 90% and two on the left were 3+4 at 15%
What does bilateral perineural invasion mean??

Dr talked to me about options. Basically two options

1. Surgery and removal

2. Radiation seed therapy I think it was

He suggested that having the surgery at my age 40 there were alot of risks as to ED and urinary incontinence. If it was him at my age he would prolly go with option 2. He still believed it was stage 2.

I have to get a referral from the navy medical to see this radiation seed dude. I haven't done a ton of research as yet. He seemed to think that the outlook for it was really good. Maybe a 10% chance of the cancer coming back

I guess I will be doing a bunch of reading over the next few days to formulate an opinion as to what is best for me.

Of course you all, "the experts" opinions are always welcome. I would love to hear them

Last edited by NavyChief; 10-29-2012 at 07:53 PM.

 
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Old 10-29-2012, 10:39 PM   #18
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Re: A little concerned

NavyChief,
Once again consider Proton. Non-invasive, high cure rate, and lowest rate of side effects.
Bob

 
Old 10-29-2012, 11:46 PM   #19
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Re: A little concerned

Hi NavyChief,

It wasn't what you (or I) were hoping for, but you have several options (not just two). Take a deep breath. First thing to do is get a second reading of your biopsy slides. It's amazing the differences I've seen from one lab to another. Epstein (at Johns Hopkins) and Bostwick are known for their expertise. Just ask your urologist to get a second opinion from one of them. It's pretty routine, but they won't do it unless you ask. Ask.

Your question was:
Quote:
What does bilateral perineural invasion mean??
This means that cancer was found near the neurovascular bundles on both sides of your prostate that innervate and supply blood to your penis. It means that nerve-sparing surgery would be difficult, if not impossible. It also is associated with more incontinence from surgery. Also, there is increased risk that it is not fully contained in your prostate. All of these mean that surgery is probably not a good option for you. I'm surprised your Uro even recommended it. But it's not all that surprising -- that's what Uros do. I look at his argument for surgery the other way around -- because you are young, you have more years to live with the side effects of treatment, so why not choose the one with the least side effects, cure rates being about the same?

I usually think an MRI at this point is a waste of time and money. However, with your small prostate and high cancer volume it might be prudent. Sometimes the cancer bulges out of the prostate and grows into the prostate bed (called "extracapsular extension"). If this has happened, digging the prostate out and getting it all surgically is almost impossible. They can see that on an MRI. On the other hand, if you're convinced that some kind of radiation is the way to go, they will probably do an MRI or CT anyway (for me, they did both and fused the images).

You would think that you could discuss all your options with one doctor. I wish! You will actually have to discuss each kind of treatment with a doctor who specializes in only that treatment. Pain in the *ss, right?(see below)

Your type of PC, if confirmed by a specialty lab, is known as "intermediate risk." NCCN cancer centers recommend IGRT/IMRT with or without brachytherapy (called a "boost")with or without hormone therapy started a couple of months before the radiation (called "neoadjuvant") and continued through the radiation and possibly 4-6 months after (called "adjuvant"). There are a lot of permutations in that last sentence. No one really knows which combination is the best. The more treatments you pile on, the better the chance of a permanent cure but the higher the incidence of side effects, especially ED. So you can "overkill" the cancer and end up impotent.

Another option is CyberKnife. In men with Intermediate Risk PC, it has a 91% cure rate after 5 years, and potency preservation is about 80%. Urinary and rectal symptoms are just irritative and transient. Concomitant or pretreatment hormone therapy does not improve the outcome, but only worsens the side effects.

Another option is HDR brachytherapy. It has about the same cure rate and side effect profile as CyberKnife after 8 years. It is often given along with IGRT/IMRT but the outcome is just as good and fewer side effects if given as a monotherapy. Like CyberKnife, it works just as well without hormone therapy. Depending where you are, it may be hard to find someone who offers it as a monotherapy.

LDR brachytherapy (seeds) may sometimes be given as a monotherapy for intermediate risk disease. More often, it's given as a boost to the IGRT/IMRT. They might use higher dose rate radioisotopes like Cesium-131 rather than I125 or Pd103. Results vary widely according to who does it, with UWSeattle, MDAnderson and MSW having the best results. Potency preservation not as good as HDR generally.

Protons may be given as a boost to IMRT for intermediate risk PC. Published results are about the same as IMRT with possibly worse sexual side effects.

With all forms of radiation, it is important to deliver enough to the prostate and a small margin outside of it, but to leave the bladder, rectum, and penile bulb unaffected. The effectiveness of IGRT/IMRT and protons are improved, but sexual side-effects are increased by hormone pre-treatment. The effectiveness of CyberKnife and HDR brachy are not improved by hormone pre-treatment. IMRT and protons have the longest track record. Brachy and protons seem to have the steepest learning curves.

That should get you started. I wish I could recommend a single Radiation Oncologist who can give you an unbiased view of all the options. Lacking that, what I did was talk to specialists in each of those. For some reason, they all wanted to give me the DRE finger

- Allen

 
Old 11-03-2012, 02:29 PM   #20
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Re: A little concerned

Well. It looks like they are sending me to MD Anderson down in Houston. I am waiting for a date for an appointment.

I am hoping that being at a place like that, that they will throw a few options at me to think about.

 
Old 11-03-2012, 10:17 PM   #21
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Re: A little concerned

NavyChief,
MDAnderson has one of the leading most modern Proton Centers. You are in luck.
Bob

 
Old 11-14-2012, 09:20 AM   #22
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Re: A little concerned

Wow. That's a great, informative post. (The tallallen post)

Last edited by chris134711; 11-14-2012 at 09:33 AM. Reason: add member name to clarify post

 
Old 11-14-2012, 11:15 AM   #23
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Re: A little concerned

Just got injected for the bone scan this afternoon. I met with a dr yesterday. He is a surgeon. He mentioned that they all have the same cure rates. Basically it comes down to this, side effects. He did mention that the radiation side effects start showing themselves later on from the residual effects of the radiation over time. Does that sound right? Is proton therapy really like the magic bullet or is it all pretty much the same?

I am meeting with the radiation drs later today hopefully. Just to get the sales pitch from that used car salesman.

 
Old 11-14-2012, 01:13 PM   #24
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Re: A little concerned

NavyChief,
Talk to everyone but make sure you talk to someone at the Proton Center. Side effects from surgery are immediate and significant for many people while Proton has fewer side effects than other radiation therapies. I had surgery at PSA 3.95 and Gleason 7 and I was told not to worry as it was "early days" but unfortunately I had positive margins and the surgery failed to get all the cancer. It's almost 3 years since I finished my Proton salvage and I have no noticeable side effects from it. After my experiences I do lean towards some kind of radiation therapy as opposed to surgery because it covers the margins and to me seems to be a better way to proceed.
Bob

 
Old 11-14-2012, 01:28 PM   #25
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Re: A little concerned

LOL@used car salesman. Everyone has to believe their therapy is the best, I guess.

I don't agree with your urologist's assessment that they all have equal cure rates for intermediate risk PC. (They do for low risk PC). Most treatments use a measure called Biochemical Recurrence-Free Survival (bRFS) to give an indication of what the cure rate is. It tells you what % of men do not have an increase in PSA after a given period of time. For intermediate risk men, here are some comparative results at the best institutions (they are 5-yr bRFS rates unless otherwise noted):
Surgery - 77% (Dr. Hernandez et al. at Johns Hopkins)
Proton - 65% (Dr. Slater et al. at Loma Linda - among men with PSA 10-20)
SBRT - 93% (Dr. Katz et al. at 8 institutions)
SBRT - 99% (Dr. Meier et al. at 21 institutions, 3 year)
HDR brachy (monotherapy) - 94% (Dr. Rogers at GammaWest)
LDR brachy (monotherapy) - 97% ( Dr. Taira et al at UWSeattle)
IMRT (81 Gy) - 78% (Dr. Zelefsky et al at MSK, 8 years)
IMRT (86 Gy) - 86% (Dr. Spratt et al at MSK, 7 years)
Adding hormone therapy or a Brachytherapy boost may improve outcomes, but adding risk of additional side effects.

The reason that radiation generally has better cure rates than surgery for intermediate and high risk disease is because the radiation reaches into the prostate bed where cancer cells may have already migrated.

The side-effect profile of each therapy is different. With surgery, the risk of incontinence is high. A recent Duke U. study found 90% had some incontinence after 1 year. Only 37% of men have potency preserved even with nerve sparing, 13% without nerve sparing. Other common side effects of surgery include penile shrinkage, climacturia (urination at orgasm) and stress incontinence.

The various types of radiation have somewhat different side effects, but in general, urinary and rectal symptoms are mild and transient, reflecting irritation from the radiation. There is a transient peak acute effect soon after therapy, which may include getting up a few times at night to pee, some burning and maybe some diarrhea. All can be medicated if bothersome. The symptoms may recur a year or more later. Such late effects are generally transient as well. It's rare to experience any late effects after a couple of years.

In terms of potency preservation, here are the results I've found reported:
HDR brachy (Dr. Demanes) - 82%
CyberKnife (Dr. Katz) - 78%
IMRT w/o ADT (at MSK) - 65%
IMRT w/ADT (at MSK) - 46%
Seeds (at UWSeattle) - 56%
For protons, they don't report a comparable number, but only note that sexual dysfunction scores doubled after therapy.

- Allen

 
Old 11-14-2012, 02:27 PM   #26
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Re: A little concerned

It's basically come down to minimizing side effects for me. I would much rather have the crap out of me to tell you the truth but, at 40 I am not exactly ready to carry around a wet noodle if you hear what I am saying.

 
Old 11-14-2012, 02:55 PM   #27
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Re: A little concerned

My radiation damage was fully done at approximately 2 years after finishing 47 external radiation treatments. But then you live with the damage for life.

 
Old 11-14-2012, 03:46 PM   #28
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Re: A little concerned

Quote:
Originally Posted by chris134711 View Post
My radiation damage was fully done at approximately 2 years after finishing 47 external radiation treatments. But then you live with the damage for life.
So 2 years after all your treatment the residual radiation caused. What are you trying to say?

 
Old 11-14-2012, 04:02 PM   #29
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Re: A little concerned

Say for example Chief that I remember being able to get an erection after the 2 months of external radiation treatments. A few weeks later I could no longer get an erection. The penile sensitivity got less and less over the months. I have daily diarrhea for 9 years also from the radiation. So I mean that the diarrhea was a minor problem during radiation but it continued to get worse for 2 years. I went from a couple of Imodium over the counter to 6 Lomotil prescription tablets daily. What else? My testosterone never came back after the Lupron shots to stop testosterone production. That one happened right away. Those are my big problems. Think Hiroshima and how people got sick years later from the radiation from the atomic bomb.

 
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Old 11-15-2012, 05:27 PM   #30
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Re: A little concerned

Ok, that pretty much helps me live with my descision.

I had a bone scan yesterday and today I had a ENDORECTAL MRI.
Let me just go ahead and say, if they offer this without knocking you out, go ahead and just ask for death. That was what I figure being raped by a Clydesdale would feel like. It's funny now but, it was far from funny at the time.

I would love to hear from a person or two that has the surgery. That is where I am leaning toward now.

In the end my descision comes down to 3 things

1) get this cancer gone. All of them do that
2) not have it come back. That's subjective I think
3) actually be able to continue to operate.

I realize that #3 is typically gone after surgery but does come back more often than not she with some help
From what I have been reading about radiation is that the residual effects of it take it away over time.

I may be completely off base here with that one. I am far from an expert. Lol.

 
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