Hi folks! New member here trying to get up to speed. So glad that you all exist! Just got my biopsy results back-gleason 3+4 left, 3+3 right; 11 of 12 cores involved; psa of 14. This doesn't seem to correspond with any of the posts I've read here and would like some feedback. Seems like good bad news/bad news.
I live in the middle of nowhere So. Utah and have been driving 3+ hrs to St. George to a Urologist (Whiting) I'm not crazy about, who says surgery. Will be returning soon for bone and ct scans. I have good connections in Albuquerque and Phoenix, less so Portland and SLC. How important is it to use a major cancer center and which of these would be best? Have a consult set up in 2 weeks in Alb., my best option, with a second surgeon, Dr. Davis.
This site seems to skew a bit in the radiation direction; looks to me like I need to get this sucker out, though the thought is disturbing. My nurse inlaw is pushing HIFU. I know it's early, but any comments? How much time do I have to explore the many options, and wait for responses? Thanks for any help you can provide.
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Katamiran
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Hi, you have time, you don’t need to rush to any decision just yet. Once you have completed your scans and have the results, you’ll be in a better position to evaluate your options. Just remember urologists will most likely recommend surgery, radiation oncologists recommend radiation etc. as it’s their known fields of expertise.
I recommend that you gather as much information as you are able regarding each option available to you and digest it at your own pace.
For myself I found that writing down the pros and cons (as I regarded them) of each option helped in my decision making. After all I would have to live with the consequences of my decision. Where a choice of treatment is available, each of us has preferences, so there’s no simple one answer for everyone. There are plenty of people on this site, some are on Active Surveillance (where the cancer risk is low), some have had surgery to remove their prostate and some have had different forms of radiation with or without androgen deprivation therapy depending on their individual diagnosis and preferences.
Ask as many questions as you find helpful and if you still have any gaps in your understanding ask again!
But for now, give your self time to absorb what’s happening to you. Any diagnosis of cancer takes a bit of time to come to terms with, and you have time.
Thanks so much for the reply Hugh; it's a bit overwhelming. Feel like I'm back in school trying to memorize all of these medical acronyms for the test!
I agree, wait for scan results. You have time though I know what your going through right now. The initial process takes time and good decisions can't be made until all info is in. Scan results may just lead to new decisions and questions.
You have gotten excellent suggestions above. I live in Phoenix, was G3+4, chose robotic surgery 4 years ago and am doing very well. You should get your biopsy slides sent to Epstein at John Hopkins for a second opinion and you need to have the best quality 3TmpMRI you can find. You want to know as much as possible about your cancer. DO NOT let any doctor try to rush you. You have some time to make the best treatment decision for your individual situation. Mark Scholz book, The Key to Prostate Cancer, is good. I know it is overwhelming but you are in the toughest part of the journey right now. It's important to try to find the best doctors to help you. Hang in there and good luck!
This parameter affects treatment sequencing. Yes sequencing! With PCa there is not a treatment decision but management, or how to estatimate the number of treatments to be needed until one passes away from another cause. The common wisdom has it RP for younger than 60 years because there is long road ahead. 60-70 is the transition range from RP to RT. 70-80 is RT domain. 80 and above is ADT to nothing. I chose RP at 69 after bumping on this statement: "If men lived to be 150 all would had died from PCa somewhere in between".
You have what is called "unfavorable intermediate risk" prostate cancer. "Just cut it out" is a natural first reaction that we all have been through. But it isn't necessarily the best treatment for you. Only you can decide that.
I strongly suggest you talk to several doctors (you can rule out HIFU- it's only if there were 1 or 2 positive cores). Your options include:
HDR brachytherapy
LDR brachytherapy with IMRT
SBRT
Surgery
They all have different side effect profiles. In Utah, GammaWest in SLC specializes in HDR brachytherapy. I think Jonathan Tward at Huntsman would be good to talk to about your radiation options. Huntsman also probably has a surgeon with lots of experience. There is a steep learning curve for prostatectomies, so a LOT of experience is very important.
You can get some idea of the relative cure rates from this:
Wow! I'm overwhelmed at the response here. Thank you all.
I'm nearly 67, very active and fit (just returned from a 30 day Grand Canyon river/ canyoneering trip) and want to continue to be for as long as possible. Been in very good health until this.
Tall Allen, do you have any knowledge of the UNM/Albuquerque cancer center? My girlfriend who is a P.A. is living part time there, which would certainly help for support and recovery.
Welcome Katamiran. I was also just diagnosed back in Dec. My biopsy scores were similar to yours (3+4 and 3+3) except that I had 22 cores taken and 13 came back positive. I totally get where your head is right now because even with a medical background myself, I found myself trudging through all of the articles, videos, and patient experiences and reviews. Although I'm a few years older (74 yrs young) my Uro Dr. gave me the option of RP, Rad +Hormone, or just radiation. I chose the latter and just completed my 8th treatment today and so far so good. IF you decide to go with radiation at all, make sure you tell them you want a procedure that puts ell-like padding that is placed between your prostate and rectal wall that's called....Space OAR...to protect the rectal wall from inadvertent radiation. I can't take the hormones due to some cardiac issues including some of my meds. Just arm yourself with as much info as you can without OVER whelming yourself...because that's what happened to me and probably the majority of us here. What your experiencing now is the same thing as 99% of us went through. As long as your PC is still encapsulated (hasn't leached out into your body) you have time to make all of those EDUCATED choices. Best of luck.
Yes, take your time! If you seem to detect an anti-surgery pro-radiation bias on here it possible by chance and possible because so many of us who had an RP have had significant side effects. Even though I did watching waiting for a few years I think I myself made the decision to finally have surgery a bit too impulsively (it was before I was a part of this group). So, I repeat, take your time-- you've gotten lots of good advice above!
You have had lots of good advice. My add is to tell you to really look after yourself. This is scary stuff. In addition to the Prostate cancer specialists, consider getting yourself a counsellor (this will be stressful). I also had a sex rehab specialist and a urology Physio. All of them are to get you through this in the best shape you can be. You can often consult by zoom so living anywhere doesn’t matter. You are only 67. You have lots of living left. Best of luck.
Hi Katamiran, You've received a lot of great advice here. My dx was almost identical to yours back in May of 2020. My dx was GL7; t2a; 11 of 12; N0M0; High Risk. I went through the same process of self-educating and self-advocating.
My URO wanted to do surgery. He said 28% chance of permanent incontinence and 100% chance of permanent ED (No nerve sparing). That scared me away from surgery.
I chose RT + 24 mo ADT offered by a Rad Onc. I had EBRT to the prostate + IMRT (6000gy in 20 fractions) plus Lupron.
At this point I am very grateful for the decision that I made. My PSA has leveled at .1. The only permanent SE so far is no ejaculate (Bummers!). That will be the case with RT or RP. It appears to me that RT toxicity is greater for those who have had RP first.
Take your time to educate yourself until you are at rest with your decision. Find yourself a good Rad Onc and see what he will do for you.
Considering the losses, there is no easy choice. Part of the process is grieving your loses, but this is a part of aging that everyone faces. It just seems to come before we are ready for it.
God bless you on your journey to health and wellness!
I can't thank you all enough again for all of this valuable information, and just as much for this sense of brotherhood. Not one any of us wanted to join, but it's some kind of silver lining.
You've gotten excellent advice from many people here. I'll just add one thing - 2nd and perhaps 3rd opinions are valuable. Medicare will pay for as many MDs as you want to visit. Other insurance may have a limit on the number, but I think all encourage at least a 2nd opinion (in the hopes the 2nd opinion will be a less expensive treatment for them to pay for..)
In general - the best MDs end up at the best medical schools or hospitals. There are undoubtedly some exceptions to that, but someone who is teaching medical students, or guiding research projects is more likely to be up to date on what's available (and that changes almost daily) and what's coming down the road.
You mentioned "UNM/Albuquerque cancer center" - might be a good place to start. I know no specifics about the center, but if it's affiliated with a university and is a teaching center it might be a good place to start. As a very vaguely general rule of thumb I use - John Hopkins graduates in MY experience have been excellent. MDs who did research work at Hopkins even more so. But that's just my very limited experience. I do know in the NE US - Hopkins is one of the top places to be treated for prostate cancer.
After visiting UNM/Albuquerque cancer center, perhaps it would be worth planning a medical-vacation trip to Baltimore and Hopkins. Make arrangements and appointments ahead of time to maximize the effectiveness of the stay. The inner-harbor at Baltimore is really interesting, and if you've never been to Washington DC, it's not far away. It's my understanding that Hopkins puts together a team of a urologist-oncologist, a radiation-oncologist, and a medical-oncologist who review together your specific case together and then come to a recommendation for treatment. It might be that the treatment they recommend can be done at UNM/Albuquerque cancer center with their guidance remotely from Hopkins.
The other choice might be NYC - there are at least 3 outstanding cancer centers there with excellent reputations for treating PCa. If you look at most of the celebrities who go public with their treatments, probably about 50% of them were treated in NYC.
Best of luck - right now you're likely in panic mode. We've all been there. It isn't a great time to make decisions that can change your life. Luckily the grade of PCa you have allows you some time to research options, have tests done and only then come to a treatment decision.
Hi Katarmiran,Like everyone else says, you’ve gotten great advice already.
I just completed my treatments in December, and I will say this website and all on it saved me from going thru this in a vacuum. So stay in touch with us. We’re a great source of support and information. You’re not going through this alone. All your PC brothers are here. Especially Tall Alan who is the big daddy of information.
One thing I will share, and it’s only from my perspective: At the beginning of my journey I twice saw surgeons who naturally recommended surgery. And then I went to a top radiation oncologist in New York who said “why would you have an invasive procedure, if you knew you could have the same outcome with a non-invasive procedure?”.
From that moment on my research took a turn and I came to realize, that surgery is surgery, and that’s kind of it, There haven’t been any great developments since robotic came on the scene about 18 years ago. However radiation seems to have so many options, variables, and technological advances, statistically with similar outcomes. This knowledge ultimately led me to choose Focused SBRT. You’ll do a lot more homework, but I think it’s ultimately imperative to know all you can before you pull the proverbial trigger.
I emphasize that each person is different as is each diagnosis,
It sounds like based on your numbers you have the time to do your research, and like others here I would urge you to do so. Don’t let any doctor rush you into making a hasty decision. All the best.
Hi - Katamiran, I agree with all the replies above. It is a shock when PC shows up out of no where. I found out I had PC when I was 48, I am very active and in great shape. I understand how overwhelming everything is at first. My PSA was only 2.3, but due to family history, the digital exam found an abnormality. Had a 3tMRI Prostate Exam that showed a PI-RADS 5 lesion and PR-RADs 3 Lesion on Feb 1, 2021. Then had a MRI targeted Biopsy done on Feb 5, 2021. Biopsy results showed GS 3+4=7, 11 of 16 cores involved. Then on March 5, 2021 met with urologist (surgeon) and RO to discuss results and treatment options. Due to my age - even the RO recommended surgery and recommended to save RT as a salvage treatment if necessary. (At that point I knew nothing and had not discovered this amazing forum and you are fortunate to have found it as early as you did.) So at that point - RP was the recommended best treatment. What I discovered as I researched results - a lot of urologists do the surgery - but you need to find a surgeon that has done thousands of surgery's and the best results possible. After doing a lot of research and phone/video calls, I traveled to Chicago and met with Dr. Edward Schaefer (he has a podcast where he talks about prostate cancer with Dr. Peter Attia #39- do a google search) Dr. Schaeffer accepted me as a patient and I had a RP on May 25, 2021.
My final diagnosis after RP was Gleason Score 3+4=7 (Grade Group 2) Tumor pT2, Organ Confined, Seminal Vesicles negative, lymph nodes negative. I understand everyone's results are different - but I have been 100% urinary continent since catheter removal and full sexual function (dry orgasm obviously-feels the same - wife actually prefers) since catheter removal. I fully believe the skill of the surgeon has everything to do with an individual's results and side effects when it comes to RP. I am 8 months post surgery and so far cancer free. Scares the hell out of me getting my PSA checked every 3 months - worried PC comes back but so far - very happy with my choice. This is not something you will hear often on this forum and maybe my lack of side effects are rare - I do not know. I just know - if I would have found this site before surgery - I don't know what treatment I would have chosen. Just know that if you decide on RP, finding the best surgeon is critical. Hope this helps in your decision for treatment - and take your time deciding how to proceed. Ask a lot of questions. Good luck.
You have found a great site. I have been battling the beast for 20 years and only 6 years ago I found this site and I feel that the guys that post on the site may have saved my life.All our knowledgeable and respectful and they are in the same boat with all of us in the fraternity that nobody wants to belong to. You're going through the most stressful time you will have in your journey when you first find out about your cancer diagnosis. Don't worry you're going to live a long and healthful life as long as you continue to stay in shape love your family and trust your health to good doctors and of course the Lord.
Hi Katamiran:More information for you to consider:
I was Dx'd in Feb 21, 12 core biopsy, 5/6 malignant on right side (3+4=7) and (3+3=6) 1/6 on left. PSA at biopsy was 18 (Had been 25 two weeks earlier). MRI was RAD5, bone and CT were clear. Was judged high risk.
Urologist was ready to do the RP and take out the organ. RO suggested the combo treatment based on the ASCENDE-RT study.
Fortunately, had found this site and a couple of others, to dive through a mountain of information on RP vs Rad. After a week of little-sleep nights and days I reached my decision to be the HDR Brachy treatment.
Don't mean to say that you should so the same, just mentioning my deciding factors to explain my decision.
My assessment was that the long term non-recurrence stats for several different radiation options were better than RP. (Ref: the information that Tall Allen has referred to)
My bet on HDR Brachy is supposed to give me an 80+% chance of being PCa free for 10-15 years. I'm 69 now so probably will get knocked over by something else by then.
You can compare this # to that for RP. Secondly, while my Urologist has done 500-600 RPs, my RO (in Denver) is among the tops for Brachy nationwide. Thirdly, issues with incontinence after RP appeared to me to be higher. Lastly, I considered that radiation is the anyways fall back if RP failed. For that scenario there'd be a void there which I considered unfavorable for vicinity organs.
I've completed my treatments 3rd week of Nov 21, 20 sessions of IMRT + one-day Brachy boost via needles + two 6-month injections of Lupron. No issues with incontinence so far.
Anxiously waiting for my first post-treatment PSA test at the end of this month. Fingers crossed.
Hopefully, this information, along with the excellent information others have provided to you, will help you with making the best decision that you judge.
Best wishes and Good Luck to you on your PCa journey.
Wow! I can't add much to all this great advice, except for one interesting side note. I am 70, had a Gleason 9, 6 of 12 cores, psa 7, no metastasis, and elected to go with ADT (Eligard) for 13 months + SBRT + LDR brachytherapy. The prostate removal procedure looked pretty gruesome to me, and some of its side effects disturbing, so I went with the radiation and ADT, which are sometimes necessary after RP anyway. I didn't find the SBRT and LDR brachythereapy to be real hard to endure, but the ADT is very unpleasant. My psa is currently .02. Anyway, back to the side note. When I talked to the oncologist he told me that they were going to intentionally radiate the lower part of my bladder in addition to the prostate during the SBRT "just in case." I don't hear many people mention this policy, maybe because it's standard procedure, but partly because of it I had to drink a lot of water before the 25 SBRT sessions and retain it (great fun!), which often caused my bladder to spasm and the radiation technologists to get on me.
Good luck with your decision making and treatments! It's not the end of the world.
I had a very similar diagnosis 1 year ago -- Gleason 7 Intermediate Unfavorable (4-3) with PSA of 11.8. I also and had a very similar challenge of figuring out what the best course of action was. Surgeons (and even more often, urology department staff) jumped to RP. I was fortunate to have good doctors on both the urology (surgery) and radiation side. Someone else suggested making a "pros and cons" list for these. That's a great idea.
One factor that really helped me decide to go the "tri-modal" route (ADT for 6 months, EBRT for 8 weeks, Brachy Boost) was the fact that it appeared that the cancer in my case was contained in my prostate, but right up to the capsule of the prostate (I'm not a doctor so I apologize if my terminology is not exactly correct). I got confirmation from both Urologist and Radiation Oncologist that removal of the prostate would be effective, but they said there was a realistic possibility that cancer spread outside the prostate even a little -- even if not detectable by an MRI or other scan. So for me the surgery option came with a reasonable possibility that they would still need to do salvage radiation and ADT if the cancer came back. Both my surgeon and radiation oncologist seemed to agree that the tri-modal option had a higher likelihood of reducing the odds of re-occurrence. I know that there are no guaranties about that. But I didn't want to deal with surgery and all of the consequences of that, and then be confronted with the need for ADT and radiation as well -- even within a year or 2.
For me, I got my brachy boost in November so I am just waiting one more month to do my first follow up. The whole process was not as bad as I feared. Waiting for testosterone to return to normal levels which will be a welcome thing. Also waiting for some of the irritation and other effects of the brachy to also subside. But overall I have been very positive about this approach thus far. Happy to speak with you more about the process and side affects as I experienced them. Let me know.
I was diagnosed with prostate cancer in 2016 at age 66. Positive in 5 of 12 cores, on one side only. I was told that having had TURP surgery 10 years prior for an enlarged prostate I wasn't a good candidate for RP surgery and was directed towards external beam radiation. I opted for HIFU instead and had to travel to San Francisco to find an experienced practitioner. I've had 5 1/2 years of excellent quality of life. I did have to pay out of pocket as insurance didn't cover it; that might have changed in the interim. My PSA was undetectable but has crept up to 1.7 over the years indicating a possible recurrence. Recent Axumin scan was clear. I did get the 'full gland' ablation as opposed to 'focal ablation'. Surgeon recommended that and it sounded wise. Take your time and do your research. Remember that doctors will recommend treatments that they have experience with. That's what makes it tough -- so many treatment options that fall on the patient to figure out and decide.
Remember when you were a kid and occasionally caught your willy in the zipper of your pants, you panicked but you survived. Well it seems like your panicking now but you'll survive. Take your time, post here ask questions and remember Pca is slow growing. DO NOT PANIC......
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