Gleason 6 But high decipher score.

Posted by caryg1955 @caryg1955, Jul 24 4:59pm

Treatment suggestions for newly diagnosed 69-year-old Gleason 6 In 2 out of 15 Biopsy samples. Both malignant samples were in a small nodule. Had high decipher score. PSA rose from 2.5 to 3.83 which indicated an MRI and then A fusion biopsy. Thinking of going with IMRT Radiation without ADT therapy. Please let me know your thoughts.

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@hammer101

caryg1955 @caryg1955, at a high level, I would personally opt for surgery to remove the known cancer. I was diagnosed 2 1/2 years ago at 55 years old with Gleason 7 (4/3). Just before my biopsy, I remember talking to my wife and sayin --> If this is cancer, I sure hope it is Gleason 6. I would still do the robotic assisted surgery, but Gleason Score 6 would give me a lot more confidence the cancer was contained to the prostate. In the end, I opted for surgery for many reason, below are several.
First, surgery removes all known cancer, versus relying on imperfect imaging tools to direct treatment. I did not want to manage my PSA at a low level but rather have a more definitive PSA/Undetectable PSA test.
Second, I wanted confirmation of the cancer grade and aggressiveness with a physical pathology. So many men find they have more aggressive or additional cancer when the pathology is performed. Today's scanning tools are incredible, but I just did not want to bet my life on them. Excellent example is the reply in this thread from "themurfs" --> His pathology came back significantly higher, but thankfully the cancer had not spread to the lymph nodes.
Third, I wanted to reserve all future treatment options in case the prostate cancer came back (thankfully, PSA undetectable thus far). From my research and referencing medical professionals, it is very difficult or impossible to have surgery after radiation.

I am very high on surgery based on my research and outcome, but surgery is not for everyone in all situation. You need to assess your personal expectations for life going forward and take into account other comorbidities and age. I was healthy, relatively young for prostate cancer (55), positive, and have an expectations for 30+ additional years of cancer free life to spend with my wife, son, and family/friends. I know you are 70 years old, but this should not automatically push you to radiation. You should assess your physical and mental health and overall life expectations.

I pray all goes well with whatever treatment you decide on!!

Jim

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Great comment! Best wishes to you!

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Hey @caryg1955 and @dgd1953, and others, I am in a similar place—trying to decide between radiation vs. prostatectomy. Already had active surv. for 2 years, now Gleason is 7, PSA 6.29, and 4 of 7 cores test positive. 2 surgeons have same opinion, to remove. An RO gave me his opinion for external and other radiation methods, which seemed far less invasive. What is complicating my decision is I start a new teaching gig in a month. It sounds like with radiation my routine wouldn’t be impacted that much, whereas the surgery brings complications and recovery time—not conducive to starting a new job. Any insights shared would be appreciated.

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@stevenp

Hey @caryg1955 and @dgd1953, and others, I am in a similar place—trying to decide between radiation vs. prostatectomy. Already had active surv. for 2 years, now Gleason is 7, PSA 6.29, and 4 of 7 cores test positive. 2 surgeons have same opinion, to remove. An RO gave me his opinion for external and other radiation methods, which seemed far less invasive. What is complicating my decision is I start a new teaching gig in a month. It sounds like with radiation my routine wouldn’t be impacted that much, whereas the surgery brings complications and recovery time—not conducive to starting a new job. Any insights shared would be appreciated.

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Hey Steve. Welcome and at the same time sorry that you have to join our brotherhood. We are here for you.

I’m not a medical professional, just a two-time prostate cancer patient so please don’t construct anything I say as medical advice. I am just sharing my personal experience and opinion.

If I understand correctly, you’re starting a new teaching position next month. Congratulations! My wife was a schoolteacher for many years, so I appreciate the starting in Fall and finishing in Spring timing of things. Its just my opinion here but if I were in your shoes, I would ask my care team to do a decipher test on my pathology to determine how aggressive the cancer is and whether or not I have to have a sense of urgency in dealing with it. If the decipher test comes up with a high number showing an aggressive cancer you certainly may need to act sooner than if it’s a low or intermediate number. Unless your cancer is aggressive, you might be able to safely hold off on treatment until the end of the school year.

I’ve gone through low dose brachytherapy, surgery and radiation and understand the impact on daily life for each of the three treatment modalities. If you have a favorable Gleason 7, (3+4 instead of 4+3) and a low decipher score low dose brachytherapy might be a good option for you assuming that you can have it done at a center of excellence with an RO that has successfully done thousands of these procedures. Regardless whether you would choose to have this treatment now or at the end of the school year, your downtime would probably be less than a week assuming you’re in good health otherwise. For the record, my brachytherapy was not successful due to an underestimation of my Gleason score and a bad biopsy, but I still like the concept of brachytherapy for low risk cancer. I know several men that had the procedure low risk and have been cancer free for well over a decade. I don’t believe that it’s the best option for intermediate or high risk PCa.

You also may want to look into a procedure called HIFU. The surgeon that did my salvage pro tech to me also performs that procedure which also has a quick recovery time and a high degree of success for low and intermediate grade localized PCa. Again, you need to seek care at a center of excellence. My surgeon also does HIFU so if you’re in the Chicago area and need a recommendation, I’ve got one for you.

Based on my experience if I had to do over and had a received a decipher score showing aggressive cancer, I would’ve opted for surgery as my primary treatment. I would’ve bit the bullet on recovery time of about six weeks with the long-term goal of staying cancer free for the rest of my life. That’s the prize; staying cancer free for the rest of your life. That should be your top priority!

If you opt for radiation, you’ll likely have to go for 30 to 40 sessions five days a week so you have to consider the impact on your day-to-day activities while you’re teaching. You will also have to show up with a full bladder and an empty rectum. Try planning that each day on top of a school day! Additionally, you’ll likely experience fatigue after a few weeks as well as urinary urgency. Getting a good night’s restfull sleep might be challenging. You might be a lot tougher than I am, but I wouldn’t even consider going radiation while teaching.

This brings me back to my original point, if you have a low or intermediate decipher score you and your care team can decide whether or not it’s prudent to wait nine months until the school year is done to act on your treatment plan.

Best wishes for success for you for whichever treatment modality you choose.

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@robertmizek

Hey Steve. Welcome and at the same time sorry that you have to join our brotherhood. We are here for you.

I’m not a medical professional, just a two-time prostate cancer patient so please don’t construct anything I say as medical advice. I am just sharing my personal experience and opinion.

If I understand correctly, you’re starting a new teaching position next month. Congratulations! My wife was a schoolteacher for many years, so I appreciate the starting in Fall and finishing in Spring timing of things. Its just my opinion here but if I were in your shoes, I would ask my care team to do a decipher test on my pathology to determine how aggressive the cancer is and whether or not I have to have a sense of urgency in dealing with it. If the decipher test comes up with a high number showing an aggressive cancer you certainly may need to act sooner than if it’s a low or intermediate number. Unless your cancer is aggressive, you might be able to safely hold off on treatment until the end of the school year.

I’ve gone through low dose brachytherapy, surgery and radiation and understand the impact on daily life for each of the three treatment modalities. If you have a favorable Gleason 7, (3+4 instead of 4+3) and a low decipher score low dose brachytherapy might be a good option for you assuming that you can have it done at a center of excellence with an RO that has successfully done thousands of these procedures. Regardless whether you would choose to have this treatment now or at the end of the school year, your downtime would probably be less than a week assuming you’re in good health otherwise. For the record, my brachytherapy was not successful due to an underestimation of my Gleason score and a bad biopsy, but I still like the concept of brachytherapy for low risk cancer. I know several men that had the procedure low risk and have been cancer free for well over a decade. I don’t believe that it’s the best option for intermediate or high risk PCa.

You also may want to look into a procedure called HIFU. The surgeon that did my salvage pro tech to me also performs that procedure which also has a quick recovery time and a high degree of success for low and intermediate grade localized PCa. Again, you need to seek care at a center of excellence. My surgeon also does HIFU so if you’re in the Chicago area and need a recommendation, I’ve got one for you.

Based on my experience if I had to do over and had a received a decipher score showing aggressive cancer, I would’ve opted for surgery as my primary treatment. I would’ve bit the bullet on recovery time of about six weeks with the long-term goal of staying cancer free for the rest of my life. That’s the prize; staying cancer free for the rest of your life. That should be your top priority!

If you opt for radiation, you’ll likely have to go for 30 to 40 sessions five days a week so you have to consider the impact on your day-to-day activities while you’re teaching. You will also have to show up with a full bladder and an empty rectum. Try planning that each day on top of a school day! Additionally, you’ll likely experience fatigue after a few weeks as well as urinary urgency. Getting a good night’s restfull sleep might be challenging. You might be a lot tougher than I am, but I wouldn’t even consider going radiation while teaching.

This brings me back to my original point, if you have a low or intermediate decipher score you and your care team can decide whether or not it’s prudent to wait nine months until the school year is done to act on your treatment plan.

Best wishes for success for you for whichever treatment modality you choose.

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Thank you @robertmizek. Totally agree I need the decipher score to make a final decision and the decipher test has been ordered. Could be another week or two before I know.

Regarding Brachytherapy, that actually was my first inclination, and I have talked to a doc that does it here locally (Minneapolis). Any additional anecdotal info regarding that treatment (long term prognoses, side effects) would be appreciated. Thank you for the warm welcome!

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@stevenp

Hey @caryg1955 and @dgd1953, and others, I am in a similar place—trying to decide between radiation vs. prostatectomy. Already had active surv. for 2 years, now Gleason is 7, PSA 6.29, and 4 of 7 cores test positive. 2 surgeons have same opinion, to remove. An RO gave me his opinion for external and other radiation methods, which seemed far less invasive. What is complicating my decision is I start a new teaching gig in a month. It sounds like with radiation my routine wouldn’t be impacted that much, whereas the surgery brings complications and recovery time—not conducive to starting a new job. Any insights shared would be appreciated.

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stevenp -- I think robertmizek really hit a very key unknown in your decision; the aggressiveness of the cancer. I suggest taking his advice for a decipher test to help remove some of that uncertainty. That said, my contribution to your question will focus on your concern about recovery time of the surgery option. I'm 70 and reasonably fit (but not excessively so) at 5'11" and 187 lbs, and I had NS RALP (at a cancer center of excellence by an excellent doctor) 5 weeks ago.
My recovery after surgery has been quick and easy. I had a catheter for a week, during which I greatly limited my activities to minimize penile soreness from the catheter. I religiously followed my doctors instructions to take over the counter pain meds for about 5 days. During that time, the pain never was worst than a 2 on a scale of 1 - 10 with 10 the highest.
Once that week was over and the catheter was out, I felt really good and every day I felt a little better. I was told for 6 weeks after surgery I couldn't lift more than 10 lbs and no bicycling for 3 months, but "normal" day to day activities were fine. I never had any incontinence but I still wore a depends for 1 day, then switched to pads for about 4 days, and then I simply went back to normal underwear. I also have a large pad on my side of the bed under the sheet, just in case. Even though I never was incontinent (except for a couple accidents as I figured out a few things), things do "feel a bit different". For example, with my prostate gone, I urinate like I'm 30 years younger. So when I step up to a urinal, I need to be ready when I "relax" as it starts to flow instantly. No pause like when my old prostate needed to relax before flow started. That's the kind of thing I mean about things "feeling a bit different". It took me a couple weeks to gain confidence that I wouldn't have an accident. If I had still been working at my desk job, I believe I could have gone back to work in 2 or 3 weeks after surgery, although I'd have probably worn either a depends or pads just as insurance. Also, since I was retired, I never discussed with my surgeon how long he would have required before he would have signed my release allowing me to return to work. I did do Kegels for about a month before surgery and resumed them after the catheter came out, so that may have helped my recovery. Bottom line, pretty much 3 weeks after surgery I was effectively "completely back to normal" except for no lifting more than 10 lbs for 6 weeks and no bicycling for 3 months. I don't have normal sexual function yet, and I think that'll take longer to recover (if it does). But that doesn't affect your concern about returning to work. I'm not trying to convince you to have surgery as I really have no idea what's best for you. Rather, I just wanted to share with you my experience of what recovery after surgery was like for me. My only other comment is that selecting your treatment plan is a "big deal". If you can afford to do so, I'd really recommend picking what you think will be best for you rather than which will speed your return to work. Just my 2 bit opinion. Best wishes to you and yours.

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@stevenp

Thank you @robertmizek. Totally agree I need the decipher score to make a final decision and the decipher test has been ordered. Could be another week or two before I know.

Regarding Brachytherapy, that actually was my first inclination, and I have talked to a doc that does it here locally (Minneapolis). Any additional anecdotal info regarding that treatment (long term prognoses, side effects) would be appreciated. Thank you for the warm welcome!

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My belief is that Brachytherapy when appropriate is a great way of treating low and intermediate risk cancer. I think the key is making certain that the treatment protocol matches the disease profile. That means understanding your decipher score and making certain that you got the best biopsy possible so that you haven’t been under diagnosed.

If I lived in the greater Minneapolis area, I would strongly consider MAYO for brachytherapy. From what I’ve read, they’ve got a great track record with this treatment modality. Here’s a link to Mayo’s page, which explains a lot. https://www.mayoclinic.org/tests-procedures/prostate-brachytherapy/about/pac-20384949

As far as my experience, I never had any difficulty passing urine, but I understand that can be a problem for some people. I experienced some mild pain and burning when urinating for a couple weeks; nothing significant there. I cycle a lot and I think I was off the bike for 6 weeks. I experienced some mild diarrhea and some unexpected urgency to defecate for the first 10 or 12 days. I was advised to abstain from sex for a short period of time. I’m thinking three weeks or so. I had some mild discomfort when ejaculating initially, but that passed pretty quickly. Had ZERO problems with ED for 2 years and mild ED starting in the 3rd year post treatment as I approached 68. Not sure if that’s a result of brachytherapy or age.

One area that my doctor failed in as far as I’m concerned is to inform me thoroughly as to what to expect. That was a disappointment. Regardless, where you get treated, I recommend that you make a list of questions you have and bring it with for your consultation.

Good luck with whatever you choose and please keep us posted on your progress! - Bob

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@robertmizek

My belief is that Brachytherapy when appropriate is a great way of treating low and intermediate risk cancer. I think the key is making certain that the treatment protocol matches the disease profile. That means understanding your decipher score and making certain that you got the best biopsy possible so that you haven’t been under diagnosed.

If I lived in the greater Minneapolis area, I would strongly consider MAYO for brachytherapy. From what I’ve read, they’ve got a great track record with this treatment modality. Here’s a link to Mayo’s page, which explains a lot. https://www.mayoclinic.org/tests-procedures/prostate-brachytherapy/about/pac-20384949

As far as my experience, I never had any difficulty passing urine, but I understand that can be a problem for some people. I experienced some mild pain and burning when urinating for a couple weeks; nothing significant there. I cycle a lot and I think I was off the bike for 6 weeks. I experienced some mild diarrhea and some unexpected urgency to defecate for the first 10 or 12 days. I was advised to abstain from sex for a short period of time. I’m thinking three weeks or so. I had some mild discomfort when ejaculating initially, but that passed pretty quickly. Had ZERO problems with ED for 2 years and mild ED starting in the 3rd year post treatment as I approached 68. Not sure if that’s a result of brachytherapy or age.

One area that my doctor failed in as far as I’m concerned is to inform me thoroughly as to what to expect. That was a disappointment. Regardless, where you get treated, I recommend that you make a list of questions you have and bring it with for your consultation.

Good luck with whatever you choose and please keep us posted on your progress! - Bob

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Thanks a ton @retireditguy and @robertmizek, good info both of you. I was wracking my brain earlier wondering why I had ruled out Brachytherapy and i just remembered: somewhere I read that the seeds will make me radioactive toward others and close contact is not recommended for a short time. My mind went immediately to my new (1st) grandson, and my daughter’s paranoia about him getting sick. If she were to hear that I might be radioactive she’d probably ask me not to hold or play with him. That would break my heart! Have either of you heard that about Brachy?

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@stevenp

Thanks a ton @retireditguy and @robertmizek, good info both of you. I was wracking my brain earlier wondering why I had ruled out Brachytherapy and i just remembered: somewhere I read that the seeds will make me radioactive toward others and close contact is not recommended for a short time. My mind went immediately to my new (1st) grandson, and my daughter’s paranoia about him getting sick. If she were to hear that I might be radioactive she’d probably ask me not to hold or play with him. That would break my heart! Have either of you heard that about Brachy?

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stevenp -- sorry, but I don't have any knowledge about that. One thing does come to mind though. Regardless of what the facts are, a bigger question might be your daughters' opinion/perspective of this (or for that matter your significant other as well). You might want to discuss this with her/them and see what they think. She might dismiss it without a concern, or she might be hyper-sensitive about it. Or maybe she'll compromise and agree to you wearing a radiation lap protector (like when you get an x-ray in the dentist office). In my case, my method of treatment was something my wife and I discussed extensively. She happened to be very supportive of what I wanted to do, but if she hadn't been, I probably would have factored that into (or at least strongly considered) whatever decision I ultimately made. Of course, some folks might justifiably hold a much differ view on what others think. I don't know what the "right" view is, but just thought I'd mention this for your consideration. Best wishes.

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@stevenp

Thanks a ton @retireditguy and @robertmizek, good info both of you. I was wracking my brain earlier wondering why I had ruled out Brachytherapy and i just remembered: somewhere I read that the seeds will make me radioactive toward others and close contact is not recommended for a short time. My mind went immediately to my new (1st) grandson, and my daughter’s paranoia about him getting sick. If she were to hear that I might be radioactive she’d probably ask me not to hold or play with him. That would break my heart! Have either of you heard that about Brachy?

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Brachytherapy seeds do emit some radiation but:
1,) the radiation only is effective for a short distance which is why your kidneys, penis, testicles, small intestine, stomach etc are not exposed to dangerous doses. I recall being told standing 2 feet from you get less radiation than they would from 3 hour flight in an airplane.
2.) the radiation does not last long. The radioactivity drops each day until the titanium seeds become inert. The half life of Iodine 125 is 60 days which means it broadcasts 1/2 the radiation in about two months. Two months laters its down another 50% and so on and so on.
3.) I was told not to have pregnant women and children sit on my lap for a period of about 6 weeks. This was based on the isotope and dosage that I received. You would need to ask your RO what temporary restriction you’d have in place.

If this is a concern, you may want to talk to a urologist that also does cryoablation for prostate cancer. Here’s the name of a doctor at Mayo that does both Brachy and cryo:
https://www.mayoclinic.org/tests-procedures/cryotherapy-for-prostate-cancer/doctors-departments/pdc-20384741

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@ozelli

Many may not agree but i do not know why you would go ahead with any treatment at this point.

You have a base MRI. Get another in 6 or even 12 months and evaluate the situation accordingly.

Low PSA AND a low Gleason? That to me is a "wait and see" .

Maybe get a 2nd opinion on your Decipher if you are on the "very nervous" end of the worry spectrum.

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I am a bit loss on the numericals for decipher score.....what is the range? I know someone who has a .44 decipher score. Is this high risk, medium? Low? So far 3 and 3 gleason but new stuff shown up and new biopsy in near future. thank you.

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