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Posted 3/31/2014 11:29 PM (GMT 0)
kinda getting over the shock and numbness and getting down to research and my first few of what I am sure will be many questions are bubbling in my head.

Gleason 8, 4+4 with high levels in 10 of 12 cores , Last PSA in late February was 9.8. Dr is wanting me to do CT and bone scans before sitting down with him for more.

1. I understand why he wants to do the tests but I have read these tests wont really tell him a lot more if I only have micro-mets. Correct?

2. I have read that with A Gleason 8 with large scale involvement like mine usually rules surgery out. I have also read and seen those who did have surgery. Why and what would rule surgery out? Pro's and con's of surgery in that situation?

3. Does not worrying about ED make a difference in surgery as an option?

Semper Fi
Walt
Posted 4/1/2014 12:05 AM (GMT 0)
Hi walt,
Surgery is effective in about 50% of time with some one with your stats, probably lower with your high volume of cancer. The reason is that high volume tumors usually mean extra capsular extension into the prostate bed or some cancer cells have already escaped into the blood stream.
The bone and CT scan will most likely show nothing, but are a good idea for high risk PC and will give a baseline for the future.
A combination treatment of Brachy and IMRT along with a course of hormone therapy has proven successful for those with your stats,
Posted 4/1/2014 12:29 AM (GMT 0)
Hey Walt, some difficult questions, aren't they? You might want to peruse the Gleason 9 thread we have going, since it seems Gleason 8-10 all have kind of similar high risk characteristics. Some of the discussion and people's histories may be of interest to you.

With a PSA that low, it's unlikely you'll have mets yet. Those are what they're looking for with the scans, but you're right in that they aren't good at finding micro mets. They're looking to exclude detectable stuff that would make local therapies ineffective. You probably want to have the scans just to be sure. If, heaven forbid, you do have mets already then you don't want to waste time and effort and side effects on surgery or local radiation that won't be useful.

Are you going to have an MRI to look for extra risk factors, like extraprostatic extension, or neurovascular bundle involvement, or seminal vesicle involvement? Lymph nodes are pretty sketchy even with MRI unless they're significantly enlarged. Did your biopsy results say anything about perineural invasion? That's another risk factor for spreading of the cancer.

Surgery has actually had pretty good results in some recent studies even for high risk cases. In my case, those added risk factors kind of ruled it out, and they were only found through the additional tests.

ED apparently has roughly equal percentages after a few years between surgery and radiation. Surgery causes it right away, and it slowly gets better to some level. Radiation causes it later, slowly deteriorating to some level. Arguably, both methodologies keep improving, though radiation has been changing a lot in recent years with image guided 3D intensity modulated machines like the Varian Trilogy with RapidArc.

My uro said my risk factors meant he could do surgery but the chance of it being "curative" were not real good, and he would have to do a "wide excision" without, his words, luxury things like nerve sparing. He wasn't even making eye contact during this difficult discussion, and clearly not much in favor of surgery. (I'm pretty sure I wouldn't have helped his percentages). The likelihood of serious incontinence and immediate permanent ED also concerned me, mainly because of the low probability of it being curative. We discussed radiation, and I ended up going that way after a long talk with the radiation oncologist.

Again, a lot of that was based on concerning factors only seen on my 3T MRI.
Posted 4/1/2014 12:41 AM (GMT 0)
Why and what would rule surgery out?

there's a strong possibility your cancer is out of the capsule so surgery alone will not "cure" you. my stats were similar except I was a G7, 12-12 positive, PSA 6.8. I had a 60% chance that the cancer had escaped the capsule so we did a combination treatment that hit the prostate with almost a double dose of radiation and treated the lymph nodes and the prostate bed.

I have ED that is treatable with Cialis and I have never once been incontinent. with surgery + radiation you have a greater chance of SEs.

ed
Posted 4/1/2014 12:54 AM (GMT 0)

Redwing57 said...
Hey Walt, some difficult questions, aren't they? You might want to peruse the Gleason 9 thread we have going, since it seems Gleason 8-10 all have kind of similar high risk characteristics. Some of the discussion and people's histories may be of interest to you.

With a PSA that low, it's unlikely you'll have mets yet. Those are what they're looking for with the scans, but you're right in that they aren't good at finding micro mets. They're looking to exclude detectable stuff that would make local therapies ineffective. You probably want to have the scans just to be sure. If, heaven forbid, you do have mets already then you don't want to waste time and effort and side effects on surgery or local radiation that won't be useful.

Are you going to have an MRI to look for extra risk factors, like extraprostatic extension, or neurovascular bundle involvement, or seminal vesicle involvement? Lymph nodes are pretty sketchy even with MRI unless they're significantly enlarged. Did your biopsy results say anything about perineural invasion? That's another risk factor for spreading of the cancer.

Surgery has actually had pretty good results in some recent studies even for high risk cases. In my case, those added risk factors kind of ruled it out, and they were only found through the additional tests.

ED apparently has roughly equal percentages after a few years between surgery and radiation. Surgery causes it right away, and it slowly gets better to some level. Radiation causes it later, slowly deteriorating to some level. Arguably, both methodologies keep improving, though radiation has been changing a lot in recent years with image guided 3D intensity modulated machines like the Varian Trilogy with RapidArc.

My uro said my risk factors meant he could do surgery but the chance of it being "curative" were not real good, and he would have to do a "wide excision" without, his words, luxury things like nerve sparing. He wasn't even making eye contact during this difficult discussion, and clearly not much in favor of surgery. (I'm pretty sure I wouldn't have helped his percentages). The likelihood of serious incontinence and immediate permanent ED also concerned me, mainly because of the low probability of it being curative. We discussed radiation, and I ended up going that way after a long talk with the radiation oncologist.

Again, a lot of that was based on concerning factors only seen on my 3T MRI.

Thanks Redwing, I have started to read that post. Please feel free to reference any other threads that you feel would be of value.

I had to travel the day my biopsy report came back and I had asked the Dr to try and call me with results. That was a mistake, he pretty much rocked my world and I had trouble getting the details. I don't remember any mention of perineural invasion but I might have missed it. His nurse is going to follow up now that my brain is engaged again. I am also waiting for his office to schedule the tests and I believe an MRI is on his agenda. He wants these done before he sits down with me and DW to review and discuss. I am thinking that if surgery is even an option I would lean that way as it seems to keep the other options open for me.
Posted 4/1/2014 12:58 AM (GMT 0)

F8 said...
Why and what would rule surgery out?

there's a strong possibility your cancer is out of the capsule so surgery alone will not "cure" you. my stats were similar except I was a G7, 12-12 positive, PSA 6.8. I had a 60% chance that the cancer had escaped the capsule so we did a combination treatment that hit the prostate with almost a double dose of radiation and treated the lymph nodes and the prostate bed.

I have ED that is treatable with Cialis and I have never once been incontinent. with surgery + radiation you have a greater chance of SEs.

ed

Thanks Ed. That makes sense but I don't understand how they determine if the capsule has been breached? Same with lymph node involvement?
Posted 4/1/2014 1:00 AM (GMT 0)
Hi Walt,

Sorry you need to be here, but glad you found us. Lots of good info and support from the folks here.

I highly recommend you visit my links below for people newly diagnosed with PCa, particularly the first link.

PCa is a low moving cancer, so you don't have to rush into a treatment option. Do you homework and choose the best doctors you can find to maximize your changes of a great outcome.

-Gedman
Posted 4/1/2014 1:06 AM (GMT 0)

gedman said...
Hi Walt,

Sorry you need to be here, but glad you found us. Lots of good info and support from the folks here.

I highly recommend you visit my links below for people newly diagnosed with PCa, particularly the first link.

PCa is a low moving cancer, so you don't have to rush into a treatment option. Do you homework and choose the best doctors you can find to maximize your changes of a great outcome.

-Gedman

Thanks gedman. I have already started on some of those.
Posted 4/1/2014 1:08 AM (GMT 0)

John T said...
Hi walt,
Surgery is effective in about 50% of time with some one with your stats, probably lower with your high volume of cancer. The reason is that high volume tumors usually mean extra capsular extension into the prostate bed or some cancer cells have already escaped into the blood stream.
The bone and CT scan will most likely show nothing, but are a good idea for high risk PC and will give a baseline for the future.
A combination treatment of Brachy and IMRT along with a course of hormone therapy has proven successful for those with your stats,

Thanks John T.
Posted 4/1/2014 2:14 AM (GMT 0)
Thanks Ed. That makes sense but I don't understand how they determine if the capsule has been breached? Same with lymph node involvement?

it's just a number's game. you have a high volume of cancer on both sides of the prostate and a PSA of 10. i'll bet if you were to run your numbers you'd have at least a 60% chance of your cancer being out of the capsule so the questions becomes "why remove the prostate if you'll need radiation anyway"?

the prostate is the target for most of the radiation. what were your positive core percentages? if you have high numbers there that also indicates the cancer is closer to jumping ship.

ed
Posted 4/1/2014 2:17 AM (GMT 0)
also, I don't agree with "take your time" especially in this case. your cancer is either out or close to being out but you don't want it to get away from you. I think time is of the essence here. good luck.

ed
Posted 4/1/2014 2:25 AM (GMT 0)

F8 said...
Thanks Ed. That makes sense but I don't understand how they determine if the capsule has been breached? Same with lymph node involvement?

it's just a number's game. you have a high volume of cancer on both sides of the prostate and a PSA of 10. i'll bet if you were to run your numbers you'd have at least a 60% chance of your cancer being out of the capsule so the questions becomes "why remove the prostate if you'll need radiation anyway"?

the prostate is the target for most of the radiation. what were your positive core percentages? if you have high numbers there that also indicates the cancer is closer to jumping ship.

ed

I don't recall the Dr giving me the positive core percentages. That is one of my follow up questions to his office. I expect to hear that tomorrow. I could have just missed them when he called, for some reason I think the percentages are high. I do not intend to delay a decision, I think I understand that I likely have an aggressive cancer to deal with but want my decision to be as fact based as possible. Thanks
Posted 4/1/2014 3:53 AM (GMT 0)
Not to throw more at you, but I ran my numbers and had a 36% chance of it being contained…. and it was. this is where the MRI will help or hurt re odds put out by nomagrams. If not familiar with them , let us know and we can direct you there. MSk has good ones.
Posted 4/1/2014 4:14 AM (GMT 0)
Dow,

A few thoughts on questions 2 and 3.

JohnT quoted you some stats that surgery is effective for men with high-risk prostate cancer about 50% of the time. He didn't mention that external beam radiation and brachytherapy when done as single mode therapy have similarly lackluster results. For high risk cancer the best results are obtained with multi-mode treatments -- combinations of several treatments in a single treatment plan that obtains results better than any of the treatments deployed individually.

He suggested brachy + external beam + ADT (hormone therapy) as a good combination for treating high risk disease. And it is. But recent research suggests that a similar combination of, say, surgery + external beam + ADT can achieve similar results in terms of disease control, but at the cost of rather more unfortunate side effects.

In most cases the increased side effects are enough to eliminate multi-modal therapies that include surgery but there are cases where surgery is particularly desirable (obstructive urinary problems with the prostate that will not be addressed by radiation) or where radiation is undesirable (existing bowel problems that radiation would exacerbate or an unusual sensitivity to radiation damage) and in those cases excellent cancer control is still available with a combination of surgery and ADT.

In my case, I wound up with a surgery-based multi-mode treatment because I was not diagnosed as high-risk until after I had received surgery (I was upgraded on my post-op pathology report.)

Not caring about ED takes away about 1/3 of the objections to surgery for high-risk men. The rest is mostly worries about incontinence. That is the side effect that blind-sides a lot of guys. most guys have experienced ED on some occasion and have a fairly good idea how much it would bother them. But they are so busy worrying about the ED that they don't really think that much about incontinence. It's been a long time since they wore diapers and they don't really expect it will happen to them until it does.
Posted 4/1/2014 12:30 PM (GMT 0)
Peter, your thoughts are well articulated and appreciated. As I contemplate the range of treatment options in front of me, I have noted the partisanship each option seems to have. It certainly makes the decisions harder. I have also noted the side effects which make every option a little distasteful. The incontinence would bother me a lot more than the ED. I have always spent a lot of time lifting iron in the gym and have been around a lot of steroid users as a consequence. That has also exposed me to the effects of excess estrogen and androgen deprivation. Not something I would like and really pondering how long I could tolerate it.

Semper Fi
Walt
Posted 4/1/2014 12:33 PM (GMT 0)

logoslidat said...
Not to throw more at you, but I ran my numbers and had a 36% chance of it being contained…. and it was. this is where the MRI will help or hurt re odds put out by nomagrams. If not familiar with them , let us know and we can direct you there. MSk has good ones.

I am not familiar with the ones you reference. I do know what nomagrams are. Direction is appreciated.
Posted 4/1/2014 12:55 PM (GMT 0)
Walt, I too am high risk. I chose surgery as initial treatment against mainstream thought. My decision was based on the premise that some nasties had already escaped. Surgery gave me the option of radiation as a secondary treatment whereas vice versa is really not a viable option. I also had urinary problems which would probably only get worse with radiation and incontinence was my major concern(so far unfounded). I have decided that "cure" is not my goal, quality of life is. When you make your decision, and you will, it be the right decision for you. Don't look back, just get the knowledge together to make your next decision. Best of luck and stay active here, it really helps!
Cheers, Doug
Posted 4/1/2014 1:15 PM (GMT 0)
Dow, Sorry you have to be here, but welcome. Lots of good info on this forum. Your stats are similar to mine. Been trying to make a decision since Christmas. Check all the options and talk at as many docs as possible. Having a Medical Oncologist on board is a plus in the decision making.

Carl
Posted 4/1/2014 2:42 PM (GMT 0)
Walt,

I have always found ADT to be the most flavorful ingredient in the big ol' 5hit sandwich that is prostate cancer. So I feel you. But, as you look at your options with high-risk disease you will find hormone therapy as hard to avoid as Spam in a Monty Pyton skit. Part of the reason I initially chose surgery was that, with my very, very large prostate, the radiation and brachy doctors all wanted to put me on ADT for six months to shrink the gland to a more manageable side before they would zap me. My surgeon was the doctor who would treat me without castrating me first so I signed on the dotted line. Then my post-op pathology report made me high-risk and suddenly ADT was back on the menu. I. Was. Not. Happy. about. That.

But I am making my way through it. I am 21 months into a 24 month sentence. My ADT treatment ends in 15 weeks, 2 days and about 4 hours: two years to the minute since I got my first Lupron injection. I have hated every minute of it. But I have a bad attitude and in reality it is doable. It increases my odds of being cured. And the wonderful thing about being cured is that I won't need to do ADT ever again.
Posted 4/1/2014 4:03 PM (GMT 0)

PeterDisAbelard. said...
Walt,

I have always found ADT to be the most flavorful ingredient in the big ol' 5hit sandwich that is prostate cancer. So I feel you. But, as you look at your options with high-risk disease you will find hormone therapy as hard to avoid as Spam in a Monty Pyton skit. Part of the reason I initially chose surgery was that, with my very, very large prostate, the radiation and brachy doctors all wanted to put me on ADT for six months to shrink the gland to a more manageable side before they would zap me. My surgeon was the doctor who would treat me without castrating me first so I signed on the dotted line. Then my post-op pathology report made me high-risk and suddenly ADT was back on the menu. I. Was. Not. Happy. about. That.

But I am making my way through it. I am 21 months into a 24 month sentence. My ADT treatment ends in 15 weeks, 2 days and about 4 hours: two years to the minute since I got my first Lupron injection. I have hated every minute of it. But I have a bad attitude and in reality it is doable. It increases my odds of being cured. And the wonderful thing about being cured is that I won't need to do ADT ever again.

Peter:
I will be shoulder to shoulder with you in the distaste if it comes to ADT. My Dr. just called me to clear up some of my biopsy questions. 1. all 10 cores had a 95% involvement 2. there was PNI involvement. 3. He believes my Pca is still contained and if CT and bone scan are favorable recommends surgery at earliest opportunity (a little after mid May). I have added the additional info to my signature.

My Dr. is not only a Urologist he is also an Oncologist. His group also has Radiation Oncologists. My wife is an executive and a nurse with Texas Health Resources and they have excellent facilities here and this group of Dr's is excellent. I am pretty comfortable with my Dr. and facilities. He has over a 1000 surgeries on the DaVinci and his outcomes are excellent. I am leaning strongly to surgery as my primary treatment if indications are no spread and keeping radiation and ADT as a backup.

Semper Fi.
Walt
Posted 4/1/2014 4:33 PM (GMT 0)
Walt,
Before I chose surgery as an option I would run all the available nomograms, MSK and Hopkins. I would also get a multi parametric MRI as this will give you more useful information then a CT and bone scan. If the MRI shows nerve involvement, extra capsular extension or tumors in the Apex region, surgery would be a poor choice. With the combination of nomograms and MP-MRI you should have enough information to make an informed, risk based decision.
Posted 4/1/2014 5:12 PM (GMT 0)
Walt, if I was you I would press my doctor as to WHY he feels your cancer is "still contained". With your stats, the odds are greater than 50-50 that the cancer is not organ confined and that you have extra capsular extension. Having radiation as a back up plan is only good if the surgery misses something and the cancer is still contained...otherwise you will just be piling on the SE's.

Your current doctor may be terrific but I would still highly recommend you consult another source who is experienced as a prostate oncologist and not necessarily vested in surgery as a first choice.

Jim
Posted 4/1/2014 5:26 PM (GMT 0)
Walt -- I think your doctor's "optimism" flies in the face of reality. sorry to be so blunt but I think he's dead wrong.

ed
Posted 4/1/2014 5:42 PM (GMT 0)
Walt,

I gotta go with JohnT on this one. You'd be foolish to select surgery as your primary treatment just to try to avoid the hormones. In your risk category the chances are better than even money that after surgery the surgeon will take one look at your post-op path report and will immediately put you on hormones and set you up with one of the radiation guys in his group to zap your prostate bed.

You really ought to talk to a couple more doctors before you commit. If you can find one that does High Dose Rate brachytherapy that'd be a good one to start with.
Posted 4/1/2014 5:50 PM (GMT 0)
Google MSK[ memorial sloan kettering} nomograms and follow the links for the appropriate one , for you.. Since your surgeon is ,in fact, a urological oncologist I feel you will be fine with her/him. Unless of course you feel a 2nd opinion is warranted. Be advised, there is no such thing as a pca oncologists in accepted medical vernacular. There are Urological oncologists that specialize in pca, tho they are usually more into research. Urological surgeons/ oncologists tend to be hands on{versed in penile, bladder cancer, etc} and those at top medical centers also will partner up with those who specialize in Pca as these centers have both. University of Washington in SEA, does. Their Pca specialist is considered to be in the top 3 in the country. I can never remember her name , as it is " different" You are for sure, on the right trail in your pursuit of the enemy. I respectfully disagree with Peterd and Johnt on the surgery option.., unless the MRI shows very suspicious reasons for escaped cancer. In that case I would agree with their assessment.
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