Hi I'm new here and I've created this post for my husband Tony who was diagnosed with prostate cancer in Dec 2017. He has a 3+4 Gleason score and his PSA has been steady at 6.4 (as of last week). He had surgery scheduled in March 2018 but decided to postpone it to June to explore alternative treatments. We look into brachytherapy, but the lack of options in the event brachy fails (hubby is 57) got us to reconsider that choice. So now my husband is considering doing hormone therapy as the FIRST option to lower his PSA and shrink the tumor (which is contained within the capsule). It is a short-term solution but the rationale for it is to delay surgery as far back as possible (rather than completely avoiding it). We are not sure if that strategy is sound but given how slow the disease progresses and aggressive culture of fear that pushes men under the knife, my husband has doubt about undergoing robotic surgery so soon. Although by June 2018, it would be 6 months of having been diagnosed. FYI, this is not active surveillance as he's looking into hormone therapy I'm not sure how sound this approach is but we are definitely looking for guidance. We live in LA by the way and my husband insurance is with Kaiser.
Thanks for reading!
Jasmine
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anthonyq
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Sorry for all the typos; I'm not sure how to edit my original post to correct them. I also want to provide additional context. The hormone therapy would be to shrink the tumor and lower the PSA. I also forgot to mention that his MRI showed the tumor to be contained within the capsule. Last MRI was taken in February and his last PSA reading of 6.4 was taken last week. His PSA at the time of the diagnose was also 6.4.
I didn’t have surgery . Was not even a thought . If well contained I’d rid myself of it ASAP.. brutal decisions to be made, personally my opinion is do not hesitate . I’m also 57. Tell Tony don’t play with fire . Do everything you think will help .. but do it now... unless you’ve got some secret sauce, then let me in on it, otherwise APC will not just back down on its own .What stage is tony?
Hi Lulu700. Thanks for the advice. Tony has intermediate cancer with a Gleason of 3+4 (7 total). I'm not sure what you mean by stage because they don't use a staging grade at Kaiser but they have staged it as intermediate pc. I'm sorry to hear about your experience though. If you don't mind me asking what was your initial diagnosis and how far has it progressed? Also what does APC mean and what should I know about it.
Hey anthonyq, APC = advanced Prostate Cancer .... There are 4 stages.. it’s good it’s intermediate .. hopefully not advanced, Stage #4 which I was Gleason 4+4 . Stage #4 means that it’s metastisized. For me it shut down my kidnies by blocking urethra with pc tumo,RSO spread throughout pelvis bladder. Not a candidate for surgery.. RT and adt shrunk things down for 11/2 yrs had tubes out of kidnies and a foley.. I have had no visible signs and an undetectable Psa ever since 4months after RT. I liked being a man . At 53 I wasn’t ready to become a women .. but I’m still here.. I was given 50/50 chance of surviviving initial treatments.. I suffer all of the effects that we all do from no,T . You will,find the right path for him to do whatever it takes to live and love ... Peace to you both 🌵
This is Anthony's wife. Thanks for your kind words. I'm sorry to hear about your diagnose at such a relatively young age too. I hear about hormone-related symptoms, but my glad that the combination of RT and adt worked for you! I will you all the best, hang in there my friend!
Thank you, what’s done is done. You will choose the right path with a prostate cancer specialist advice. It s a bumpy road.. ...but treatments can extend life.. Enjoy each other and life itself..
I'm in LA as well. You have many great options here, only some of which may be available through Kaiser. As long as not more than half his biopsy cores had cancer in them, he is in a risk category they call "favorable intermediate risk." That means his prognosis and best treatments are pretty much the same as a low risk patient.
He has plenty of time to decide. Some active surveillance programs even accept favorable intermediate risk patients and just watch them for years. If he takes more than a year to decide, he should probably have an mp-MRI-targeted confirmation biopsy. Meanwhile he should definitely NOT use hormone therapy. It has never been shown to be beneficial in guys like him.
You are quite mistaken in your assessment of salvage options after radiation therapy. You can read about them in the link below. More importantly, with cure rates over 95% for his risk category, salvage should not even be a concern.
Other than surgery, the best treatment options for him are SBRT and HDR brachy monotherapy. The pioneer of SBRT for prostate cancer is Chris King at UCLA. Albert Chang at UCLA or Mitchell Kamrava at Cedars-Sinai can do HDR bracytherapy. Both therapies boast high cure rates and low toxicity. They both have very high rates of potency preservation (70-80%) and there is no loss of penis size, climacturia, or Peyronie's. Count on loss of ejaculate, however. Urinary and rectal side effects are typically mild and transient. Incontinence is almost unheard of.
A patient I spoke to from LA said Kaiser offers HDR brachy in the Bay Area, and was allowing him to be treated there. Dr Castanos at Kaiser LA was starting to offer SBRT to some patients, but I cannot vouch for his expertise. Another option is to enroll in a different insurance plan at the next open enrollment.
Thanks for the thorough response. My husband will be responding back to your post sometime today. Unfortunately, both of his biopsy cores have cancer in them but the distribution is uneven (some have more cancer than others) if that makes any sense.
In the meantime, I'm curious to know why hormone treatment is not a good option. This strategy doing hormone first to push back on having surgery was outlined by Dr. Scholz in one of his books. He's a top prostate cancer expert. I'm definitely not challenging what you are saying, but I'm curious to know why. My husband is leaning on that approach to avoid surgery at least delay it as long as possible. Normally the general consensus for those undergoing surgery is as follows: surgery, if cancer comes back: radiation, and if all fails, hormone treatment (on a macro-level). However, Scholz's approach seems to support the following: Hormone treatments (to push back surgery and shrink tumor), if PSA rises, then surgery, then radiation... Sort of the inverse of option 1.... So I'm curious to understand why you wouldn't recommend that option?
Thanks so much for your insight! It's wonderful to have found this community. We are very grateful for any advice and support we can get during this challenging time.
He certainly had more than two biopsy cores taken - usually 12. Only two had cancer. That would put him in the "favorable intermediate risk" category.
Scholz is a medical oncologist. He is in the business of treating men with incurable, advanced prostate cancer, and I suspect he is very good at it. He is definitely NOT any kind of an expert at treating men with LOCALIZED prostate cancer (although I'm sure he has many opinions and does a lot of self-promotion). I prefer to learn from real experts, and I advise that you do as well. It makes sense to me that Scholz would push ADT - it is his mainstay treatment for men with advanced prostate cancer.
ADT has a lot of unpleasant side effects. If one has to take it, one does. But if one doesn't have to, why in the world would anyone do it? There is no data to suggest that ADT has ANY benefit as an adjuvant treatment in men who have favorable risk prostate cancer.
In a retrospective study by Castle et al. where intermediate risk men were divided into favorable or unfavorable intermediate risk, favorable risk patients had no discernable benefit from the addition of ADT. Similarly, Edelman et al. found that ADT combined beneficially with RT only in intermediate risk patients with GS 4+3, more than 50% positive cores, or multiple intermediate risk factors.
Another retrospective study by Keane et al. confirming that finding was presented at the recent Genitourinary Conference. They analyzed the oncological outcomes of 2,668 intermediate risk men (71% favorable, 29% unfavorable) treated between 1997 and 2013 with dose-escalated RT and with and without adjuvant ADT (median 4 months). After a median follow-up of 7.8 years, they found that adding ADT did not make a difference to prostate cancer-specific mortality in those men categorized as favorable intermediate risk.
Pre-surgery ADT has only been explored in high-risk patients. I don't think it occurred to anyone that favorable risk patients would actually WANT to take it - it's something most of us would like to avoid if possible.
Hi Tall_Allen, this is Anthony_q. I really appreciate your response. I'm also very fortunate that my wife took the initiative to set-up my account and started the ball rolling in this forum (thanks baby).
Now I have to clear-up some basic information there were 21 biopsy cores taken and the results as written of the report were:
R-base (3+4), Involving 1 of 2 Cores & 5% of Tissue Submitted Gleason's Score 7
R-mid (3+3), Involving 1 of 3 Core & <5% of Tissue Submitted Gleason's Score 6
R-apex (3+3), Involving 1 of 4 Cores & <5% of Tissue Submitted Gleason's Score 6
L-base (3+3), Involving 1 of 3 Cores &<5% of Tissue Submitted Gleason's Score 6
L-mid (3+4), Involving 3 of 4 Cores & 15% of Tissue Submitted Gleason's Score 7
L-apex (3+4), Involving 4 of 5 Cores & 40% of Tissue Submitted Gleason's Score 7
They found cancer cores in each sample taken, although mostly low amounts the L-apex was almost 50%. I'm T-2b, with a Gleason Score 3+4 (7). Classified as Intermediate and the MIR showed the cancer is well within the capsule (MIR taken in Feb 2018). The last PSA test was about 10 days ago and it came back as 6.4, which is the same as the one done Jan 22, 2018. I was diagnosed with cancer back on Dec 12, 2017 (results from biopsy).
Since diagnosed, I've went vegan and lost about 20lbs. I read a couple of books on prostate cancer: Prostate Health in 90 Days without drugs or surgery, Larry Clapp, Ph.D., J.D. and the Invasion of the Prostate Snatchers by Ralph H. Blum (a prostate survivor) and Mark Scholz, MD. Both books were very informative, but to me the collaboration between Mr. Blum and Dr. Scholz was a little more enjoyable and seem more nestled in facts. I also went to a conference (by LAX) March of this year sponsored by the Prostate Cancer Research Institute. I was told every speaker were top Doctors in their area of prostate cancer. I don't know if they were or not, but the room was packed and the speakers were on top of their game to me.
I had the chance to meet Dr. Mark Scholz at the conference (he was one of the co sponsor's the other sponsor was Dr, Mark Moyad - the MC a very articulate speaker). I've not read Dr. Scholz's book at that time, but I was advised to get his book by a prostate survivor before I knew about the conference.
I've read the articles you referenced in your email and they dated from 2012 to I believe 2014. The information was very informative. You wonder why someone would want to take ADT when they are low risk or even intermediate? My understanding is that it doesn't make sense for men categorized as low risk to take it. However, since the ADT suppose to block or lower the production of testosterone it can hold the cancer at bay but not without side effect and not indefinitely. Some of the side effects (collateral damages) are:
Hot flashes, emotionally sensitive (tearing-up over small things), lost of libido, growing breast and reduction in penis size
All the side effects are temporary except the breast enlargement and the reduction in penis size. The breast can be augmented during the treatment if the patient does weight lifting. My understanding is that the treatment can be for 6 to 13 months. Once it's stop testosterone levels can start elevating again. However, there have been some patients that have been able to maintain a decent level of testosterone once off the treatment while maintaining a low PSA level.
In my case, I'm thinking about using it for 4 to 6 months, have my PSA checked every 40 days to see if it goes down and have another MIR about 70 to 80 days into the treatment.
I'd like to buy more time, learn a little more about my options but not at the risk of compromising my health, and it seem diet and perhaps ADT might help in this regards.
You don't need to buy more time. You probably think that based on what you've heard about other cancers. Note the Morini study mentioned in the article below - men who waited a year before surgery had no worse outcomes than men who were treated sooner:
It seems a shame to castrate yourself unnecessarily, and strongly advise that you wait at least a few months before doing so. Perhaps when your emotional temperature comes down, you'll be able to make a more thoughtful decision.
The testosterone lowering effect does not end when the last shot wears off - it will probably last 6-12 months afterwards at least to some degree. Gynecomastia is NOT prevented by lifting weights - many bodybuilders get it. I have no idea why you would get PSAs every 40 days or get another MRI while castrate - it sounds like a recipe for anxiety and I have no idea what you can possibly learn from that.
As for Scholz's dog and pony show - I think they're a lot of fun. I've been a few times, and while the talks they give are a bit too dumbed down for me, I enjoy meeting fellow patients.
I suggested to your wife some of the top practitioners in the LA area. It really won't take you long to set up appointments and meet with all of them. You will learn a lot - much more than by attending any events. At the end of the process, which could not take more than a couple of months, you will be ready to assess what is important to you and how each treatment matches what you feel is important. The only impediment is your HMO which will probably not pay for the consults. There will not be any major "breakthroughs" in the next few months that we don't already know about.
Hi Tall Allen it's Anthony_q. Thank you again for your valuable insight.
To me there is a chance of castration in some form or fashion with all of the treatments. What I understand about the difference with the pills is that your libido is temporarily out of commission, and with a little help from Viagra will make a comes back a few months after treatments stops. Growing breast is a tremendous concern, but if I can augment it with breast prevention pills, the next challenge would then be hot flashes and sensitivity management. However, if the pill's power to hold the cancer at bay is just a figment of my imagination, I'll than have to through plan C out with the baby and the bath water; concentrate then on the pros and cons of Brachtherapy with a combination of Beam radiation, surgery and the new plan C - partial Cryotherapy. I'll always keep diet, exercise and alternative healing as a good measure approach. Something that might help with reducing the anxiety.
It seems one should only go for the surgery if they know for certain if the cancer is contained within the capsule. Which seem to me is also a crap shot.
I wonder if you heard about Combidex and nano biology? It seems the only way to be certain if the cancer haven't spread outside of the capsule is to be at low risk or fly to the Netherlands where it is the only place in the world that offers nano biological testing to see if prostate cancer has breached the capsule.
Since I don't know if the cancer spread the only option I have during my fact finding mission is to check my PSA and do an MIR at certain intervals. If 40 days is to soon for the PSA and 60 to 70 days is to soon for an MIR, I hope within the next 40 to 60 days I'll have whatever treatment I've decided to have by then.
The problem is that once I've convinced myself which option to choose, I'll likely have to wait another 6 to 8 weeks for the doctor to schedule the treatment. Than I'll be going on a year since I've been diagnosed. Someone told me the long wait have more to do with preparing the robotic machine, and seed instruments, but that seem very odd to me.
I have no idea how you came up with the notion that you are a good candidate for any kind of castration. I guess you didn't read the link I provided.
As for Combidex - I seriously doubt anything would show up with a PSA and Gleason score as low as yours. You have the wrong idea about the speed of progression, but again, if you don't look at the data I provided, there's little I can say.
It sounds like your mind is made up and you are closed to further input. I wish you much luck with whatever path you choose.
This is Anthonyq's wife here...Would you then recommend Brachy?
As a sidebar item, my husband hasn't made up his mind and is certainly not closed to further input. I'm not sure why you're thinking that, but I thought I'd clarify this for you.
As someone recently diagnosed, we are trying to learn as much as possible and most importantly ask questions that will help him make a level-headed decision.
I have gathered a wealth of information. I'm also very fortunate to work at a public policy think tank in Santa Monica (RAND) where some of the most respected researchers have shared their insight and studies and even their personal experiences dealing with this disease. The general consensus is surgery so we're not ruling that option out.
We are not ruling any options out at this juncture, but merely asking questions to clarify some of the things we've heard or were confused about. The more I'm we learning about the castration approach the more we believe that this may not be the right approach and your previous answers had a lot to do with that so I'm not sure why you'd say that but we thank you for your input and any added insight you're willing to share.
I thought that because his response indicated he had had not read or absorbed any of the relevant articles I supplied that might have altered his thinking. He seemed to be committed to castration - you sound less sure.
I think brachy is an excellent choice. There are two different kinds - high dose rate (HDR - temporary implants) and low dose rate (LDR-seeds). In the hands of very experienced experts, both are very good. Unfortunately, there aren't a lot of very experienced experts. LDR brachy is very limited in its reach, so for unfavorable risk patients, it is usually supplemented with external beam radiation. HDR brachy, on the other hand, can treat areas outside of the prostate capsule, and can be given as a monotherapy. It is given along with external beam radiation primarily in high risk cases (although even there, the monotherapy has worked well in clinical trials). SBRT is given as a monotherapy.
As for ADJUVANT ADT with those therapies... There is a prostate size limitation of about 40 cc for LDR brachy. Beyond that, too many seeds are required for adequate coverage, and because they are left inside and generate significant X-rays for a few months, the toxicity to the urethra, bladder and rectum would be too high. So sometimes men with large prostates are put on ADT for several months to shrink the prostate first. For HDR brachy and SBRT, there are no prostate size limitations, and evidence so far has been that adjuvant ADT does not improve their outcomes, although it is sometimes given in high risk cases as extra insurance.
Here are questions to ask at interviews with specialists in those therapies:
Hi Tall Allen, I read your post that was sent 14 days ago again and I'm not sure if you're recommending SBRT and HDR Brachytherapy monotherapy used as a combination treatment? It seems like the side effects are the least threatening and the cure rate is as good as any out there. I'm just not sure if you're referring to them as joint or independent treatments
I chose Brachytherapy after a huge amount of research via the computer. My diagnosis was intermediate, all contained in the prostate and Gleason was 3+4. I certainly did not like the possibility of being incontinent and the other POSSIBLE unwanted side effects, so I chose the Brachytherapy as the way to go for me. Everyone is different and what is good for one guy might result in poor results for someone else. My Brachytherapy procedure was the LDR and the procedure took place in year 2010 in the Chicagoland area. Now, coming up on age 82, my PSA is 0.14, that is zero point fourteen. At my age, I really had NO concern about radiation and what it may do to sexual arousal and performance. Do your research by getting the histories of other guys who have had the various procedures. I never attempt to “sell” the radioactive seeds but I am totally happy with the choice I made. Just had a digit check of the prostate yesterday and the doc indicated my old prostate feels just fine. Good luck.
Thanks for the kind words Blasterbob. I have heard great things about brachytherapy and I'm happy to hear you've had success with that method. If hubby was older he'd seriously consider it but we are concerned about recurrence 10 years down the line at 67 when he may be too weak for surgery... We are considering all options at this time. Thanks again, and God bless.
Hi Blasterbob, this is Anthonyq, since my wife responds a lot under my name I think it might help to let you know who's now responding. I also have to apologize for my late response. I had a lot going on at work, family and just getting my mind around this disease. It's a tough predicament, not only due to the risk of becoming impotent and of course death, but it progression is slow. Therefor, one have sometime to do homework, but no one knows for sure how much time one have before the capsule is breached. It's like playing hangman with time. In any event, I'd like to thank you for your response 11 days ago (time has never flew by so fast since I've been diagnosed) and I'd like to know what's the purpose of the "digit check"?
I've been wondering what's the side effect living with a prostate that has been radiated? The radiation can run it's course, the brachytherapy procedure can be a success, but the prostate is no longer functioning. It than becomes literally an organ in your body just taking up space. It know longer has a purpose. Does the "digit check" monitors the non-functioning prostate for some kind of carcinogenic residue?
Anthonyq, the “digit”check is merely the process of the doctor putting on a rubber glove, placing an ample,supply of lube, usually on his index finger and inserting up the rectum. There he will feel the prostate to see if there are any bumps on it and if it may indicate if there are any inconsistencies on it. Might be just a bit uncomfortable but no pain, only some embarrassment. Hope this procedure works out well for you.
Anthony, I neglected to mention about the lack of prostate function. As probably already indicated, I had Brachytherapy exactly eight years ago and have NEVER missed the advantage of still possessing that gland. I suppose this is due to the fact that I will hit 82 years of age later this year. My libido went down to Zero when I received the initial prostate cancer diagnosis and it has never returned. Oh well, at my age, sex is no longer of much significance and the guys under age 80 can “have at it” as far as I am now concerned. Not meaning to make light of that. Good luck!!!
I have read about the approach of shots first then next treatment to lowere the psa first.
My husband at age 52 just almost 10 years ago had his first diagnosis, he had agressive PC and was treated at the Cancer center of America with a machine called the Clypso and 80 seeds of radation for three months. Then two years of lupron shots. He was cancer free almost 10 years Then now we just had a diagnosies of a recurrance. It shows it is only in the prostrate after several MRI's and scans. HIs first time our local diagnosies Dr wanted to do a radicail surgery so we sought out a second option at the Cancer center, they showed us statistics with my husbands agressive PC that surgery vs radation was only a 1% difference in survival rate of five years or more so !% was not enough for my husband to go through the surgery. I will say though we have been not able to have a life of husband and wife union since then but his urigolist now says he will find a way after we get through this bout of Cancer. I told him I think that ship has sailed. lol After you survive this "Cancer" thing, so many more things become like a child again that we really have been ok with it. We will get the results back today on his last MRI which was a guided fusion planning scan so they can Map out where they will do the biospy. So I have no idea what treatment plan they will suggest, I know his first time was aggressive so I imagine this is too. My daughter lives in LA and has crohn's she swears by Ceder's, but Tall Guy gave you some great suggestions. We may very well move that way someday because two of our daughters will be living there, one already lives there and another wants to go to college at UCLA. You are on the best site ofr help/ Best og look and nice meeting fellow wife's of this beast.
Thanks for that information, Kim. I'm glad to hear that the recurrence of PC was localized. Seeds radiation might be an option for my husband. How is your husband doing right now and what are his PSA and Gleason score? Also, you mentioned he was initially diagnosed with aggressive PC and was treated with Calypso how does that differ from other seed radiation treatments? Thanks and good luck to the both of you!
We dont have his granding for this time yet, his psa is still low 2.8 taken at the cancer hospital although our local dr said 3.5, but he had under a one for a long time, but in just over a year it doubled, thats a recurence sign. He doesn't have his gleason score yet, he will be getting his bisopy soon. My husbands psa has never been very high nor his Testrone level it is always very low, but for some reason his was agressive last time, i think the younger you are the more agressive it can be. I am no expert, just looking for support like all of us. HIs was to advanced for the other seeds, Im not sure of the name difference in treatments, but you can bet someone on here that reads this will know their stuff and maybe they can know the difference.
Thanks, Kim. I'm sure someone can provide additional guidance if not, I'll create a new post. Hope all goes well with your husband's results. Stay strong!
Waiting and choosing carefully are good strategies. With organ-confined disease, a stable PSA, and intermediate risk cancer there is no rush at all. As others have mentioned surveillance can be employed for years in many cases.
All of the treatments, all of the options, have significant, generally life-changing effects. The treatments are not particularly effective, so delaying them both improves quality of life and doesn't significantly increase risks.
Right now he and you are probably still somewhat in shock from the diagnosis. I know that for months after my biopsy results, my first waking thought every morning was "I have cancer." True, but not helpful. That eventually passed; it was 7 years ago.
In 6 months you'll both have a chance to learn, begin to come to terms with living with cancer. You'll be in a much better place to make major decisions. Take whatever time you need; don't let yourself get bullied into something you'll later regret.
Thanks FCoffey. You are right. Thus far we postponed Robotic Surgery which was scheduled for April 2018 because we want to learn as much as possible about this insidious disease. On the other hand, while PC is slow to progress, we can't help but think that we are also running a risk by waiting too long and that his cancer could break outside the capsule.
His MRI taken in February 2018, showed the cancer was well contained within the capsule, but we're now in May and we're still very much undecided. Our decision really hinges between brachytherapy and robotic surgery. It's a tough choice, but one that my husband will have to make for himself. Again, thanks for your kind words.
If it helps, my Gleason and initial PSA were the same as you describe. It took 10 years for the cancer to escape the capsule. Your experience will certainly be different, but the time scale where you need to worry about delay is years, not months. Several of my doctors advised to wait at least 6 months after my diagnosis to make decisions, and I found that advice very helpful. Once the shock wears off and you are part way down the n-step path of shock, fear, denial, bargaining, etc. you will be in a much better place to make such important decisions.
Hi FCoffey, this is AnthonyQ (not my wife). Did you monitor your prostate cancer for 10 years, with the same scores I have now? How often did you check your PSA and Gleason during that time? What procedure did you have and why, or are you still not having any procedure done?
Thanks, John! This forum is definitely a lifeline and great source of support, and I'm thankful to everyone for their wealth of knowledge experts like Tall Allen and everyday folks who know firsthand what's it like to go through this. My husband diagnose has been very demoralizing, but this forum has decreased our sense of isolation and we're very thankful for that.
I was diagnosed with Gleason 8, 5 of 12 cores and scans indicated no spread outside the prostate. I was steered toward radiation treatments after being told I was a poor candidate for convention RP surgery after previous TURP surgery. I opted for HIFU instead. It was out of pocket and not cheap but I've had no quality of life issues resulting from it. I was treated by a HIFU surgeon in San Francisco area. Here's some info:
Indeed it is a shock! Thanks for your kind words WSOPeddie. I agree with you re: quality of life issues. I hope all goes well for you!
I was that one percent that surgery was not even considered . Due to my severely critical urological near death condition. They told me if I was ten years older that they would not do what they did to me because chances were that I wouldn’t survive.it. So if 1 out of 100 urologist was in my shape they never would do,surgery on that person. My prostate exploded with pc tumors. No point to surgery.. Do,you understand what I’m saying.. ? In my case it was not an option.... I also think that 99% of urologist are jackasses & surgeons that’s how they make the big bucks. My top surgeon urologist told me on my first meeting “ Well , I’m not goin to make any money off of you. “ We couldn’t believe that he said that.. I had to,wait for him to get back from spring break with his kids before I could get my biopsy..I didn’t make it ended up in ICU... after me the AzUrological institute told me that they’ve changed their policy to get super aggressive advanced guys biopsied right away.. It was close to mal practice in my eyes.. I’m not sure what your point was about the 99% .. If I went by drs. Stats then I would be dead now.. Personal experience will teach you more than Urologist will.. Good luck with your heath...
If it helps, I'm going through this too. I'm a Gleason of 8 of 10. 3=5, but the rest are 4=3. No bone spread, thank the lord. When you have the high number in front, it gets a bit scary. They're removing mine on the 29th of this month. I sent you a private message with my email. I'll give you my number via email if you want to talk. I saw the numbers and the 3+4s are a good thing. It's when the higher number is in front that causes concern apparently. I told my doc, "yeah, but my numbers had a 3+5, which is better than a 5+3, right"? He said, that's very true, but the rest of your numbers were 4+3.... My doc has a way of spoiling a good time...lol.
“You gotta be kidding me” was the thought that came to my mind when I first got the news too. Now it seems time is flying by. Not that time wasn’t going slow before, but it just seems that it has accelerated since the diagnose. I guess this is where “kind of fun” kicks in which is due to the anxiety of weighing what’s at risk and the responsibility of trying to figure out the best method/procedure. I suspect the doctors can’t say one way or another which method to choose due to the possibility of being sued, so they give us a mountain of information to weigh through and that’s why a forum like this one is so valuable.
If I’m understanding you correctly you’ve been diagnosed around the March/April period, 49 years old and going for the surgery which is scheduled for 29th of this month. I’m curious to know why you’re going with surgery? I suspect you also considered brachytherapy, beam radiation, monotherapy (combination of seeds and external beam radiation) too? Do you know the size of your prostate? Mine is 45cc. This is kind of too large for low dose brachytherapy, but not for high dose brachytherapy.
I was diagnosed in December 2017 and was scheduled for surgery in Apr 2018. Since then I canceled the surgery and opted for the brachytherapy. I’m insured with Kaiser and the initial BrackyT., doctor advised to also have beam radiation. This was due to one of my cores at 40%. However, there was another doctor that would do the brachytherapy without the addition of external beam radiation. I was scheduled for June to just have the brachytherapy. I canceled that because I’ve learned that hormones treatment can keep cancer at bay for years, but there comes a risk with that one too, and my surgeon advised and so have TallAllen that hormone treatment is more for patients with aggressive PC.
The information is too much, so I’ve created a spreadsheet with the methods I’ve learned of and the risk associated with them. Now I’m preparing to have a consultation with my doctors on the following monotherapy:
1. Use Adjuvant ADT (hormones) to shrink the prostate, administer prior to the other methods
2. Low dose Brachytherapy
3. Stereotactic Body Radiation Therapy (SBRT) Imaging High Dose Precision Targeting - External Beam Radiation.
It’s a lot of mumble jumble, but I feel if I’m not actively engaging then there is a higher probability that I won't like the outcome. It’s all a risk anyway. In my humble opinion trying to get a better understanding of the odds is moving more towards a positive solution than away from one
I'm new to this site and after reading all the posts, was wondering what you ultimately decided to do. I was Diagnosed as a Gleason 3+3 but about 50-80% in 6 of the 13 cores. I took about a year to research the various treatments and get consultations. I too have experienced the anxiety felt when that "C"-word is mentioned and also explored testing in the meantime to gain some reassurance that I didn't have an aggressive form of P-ca. In the end, because of the low amount of side effects and the effectiveness data, I chose SBRT. Wishing you all the best in your journey.
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My doc has a way of spoiling a good time...lol. 
Advanced prostate cancer and Low Hb.
Advanced prostate cancer:- After Chemo, Bicalutamide also stopped working. What could be our next step?
Advanced Prostate Cancer to bone and liver
My brother has advanced Prostate Cancer
