Gleason 6 (3+3) treatments

Posted by joe1 @joe1, May 21 3:39pm

Hi,
I had a biopsy and it came back with Gleason 6 (3+3). The urologist first told me it was extremely important that I have a biopsy done every 12 - 18 months to monitor this. 3 years later with no followups and now he's telling me we will just do MRI's instead (I also have ulcerative colitis so biopsy is extra painful). He also told me my cancer is nothing and don't worry about it. Problem is, he's told me a lot of things and then told me the exact opposite, so I'm not sure if I trust him.

Question for others with Gleason 6 ....... what type of treatment/monitoring are you being treated with?

Thanks

Joe

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Apparently the Drs are starting to get away from random biopsies due to - they can miss areas that are diseased and using MRIs more to look for the lesions and then maybe try and do targeted biopsies.
Second opinions are worth it.
I too had trust issues with my Dr but have relented due to a second opinion being the same as the Dr I have.
My main issue was trying to avoid the ADT. But I have gave-in trying to avoid metastasis later. I had one core 4+3 and 2 cores 3+4.
The 4+3 was what had to be dealt with for more aggressive approach.

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Just because a doc recommends that you should stay with active surveillance with Gleason 6 doesn’t mean he’s wrong.

Go ahead and get a 2nd opinion to give yourself some comfort factor for whatever you decide…but anyone who has selected treatment and is telling folks with Gleason 6 to pursue treatment is speaking without understanding the absolutely overwhelming evidence that Gleason 6 does not metastasize.

There will be a small fraction of men who for whatever reason were misdiagnosed…but don’t listen to folks who are pushing you to do what they did.

You will find success stories for EVERY treatment option out there, including active surveillance. It doesn’t mean that it’s the way you should go.

I chose active surveillance and all the data indicates that it was the absolute best option for me.

I am convinced it’s the right choice for me…but that doesn’t mean it’s the right choice for you, as every case is different.

The number one issue is what does the preponderance of particular clinical and genomic data indicate for your particular PCa AND what are you most comfortable with in terms of dealing with the potential side effect risks of any treatment (even if selecting a CoE) versus the potential risks of deciding to wait until you obtain clinical and genomic data that clearly indicates treatment is now required, based on ALL the facts and your own presuppositions.

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Joe: if you do a biopsy again, the Decipher test will use your biopsy material, which, as I understand, is good for a year, to measure the aggressiveness and possible treatment. Doctors do use it to evaluate your treatment. It is getting another opinion from something you have already completed, in this case the new biopsy. You just never know how your individual body will react to cancer.

You might want to also ask your doctor about checking your PSA every quarter for a pattern or trend. If insurance does not pay for it, and it is in your budget to pay for it yourself, it may be a good investment to avoid the potential issues of cancer spreading.

I had a 3+ 4 Gleason with a 10.2 PSA. I had one radiation oncologist, mention, active surveillance as a possibility and the rest did not. Doctors do not have enough data to tell you that for your body, it will not grow or how fast. A lot can happen in 12 months.

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@handera

Just because a doc recommends that you should stay with active surveillance with Gleason 6 doesn’t mean he’s wrong.

Go ahead and get a 2nd opinion to give yourself some comfort factor for whatever you decide…but anyone who has selected treatment and is telling folks with Gleason 6 to pursue treatment is speaking without understanding the absolutely overwhelming evidence that Gleason 6 does not metastasize.

There will be a small fraction of men who for whatever reason were misdiagnosed…but don’t listen to folks who are pushing you to do what they did.

You will find success stories for EVERY treatment option out there, including active surveillance. It doesn’t mean that it’s the way you should go.

I chose active surveillance and all the data indicates that it was the absolute best option for me.

I am convinced it’s the right choice for me…but that doesn’t mean it’s the right choice for you, as every case is different.

The number one issue is what does the preponderance of particular clinical and genomic data indicate for your particular PCa AND what are you most comfortable with in terms of dealing with the potential side effect risks of any treatment (even if selecting a CoE) versus the potential risks of deciding to wait until you obtain clinical and genomic data that clearly indicates treatment is now required, based on ALL the facts and your own presuppositions.

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My 3 +3 with low dna oncocyte score- active surveillance was the guidance from multiple doctors. (this changed 6 months later with a follow up biopsy)

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@robertmizek

Thanks for your comment and question. I’ve see some of your other comments and they’ve always been intelligent and considerate. Kudos!

My apologies for not being clear regarding my comment. I only had a single biopsy experience January 2020. It was a US guided transperineal stereotactic mapping biopsy and they took 25 cores. My insurance (Aetna) would not authorize payment for anything more than a random TRUS biopsy so I paid the difference. MRI of December 2019 previously showed a 1.4 cm x 0.9 cm Pi-rads 4 lesion in the right anterior peripheral zone at the apex of the prostate. The biopsy revealed Gleason 6 (3 +3] (Grade Group 1] tumor in one of 4 cores 5mm discontinuously involving 25% of submitted tissue from the right anterior apex.

My November 2019 PSA (prior to the MRI and the biopsy) was 4.75. My next PSA reading was May 2020 (6 mos later) when the PSA jumped to 6.51. No further PSA tests, biopsies, or MRI’s were taken before I underwent focal brachytherapy in June 2020. I distinctly remember calling the RO and asking if we needed to repeat the MRI or biopsy with the precipitous rise in PSA in mind and I asked to have a decipher test run on PCa positive sample. I was told that none of that was necessary. All this was in the middle of the pandemic and I was assured that no further investigation was needed. That turned out to be incorrect.

MRI and a PET-PSMA scan in December 2023 showed two PI-RADS 5 lesions and involvement of two local lymph nodes. Two different medical teams from different center of excellence hospital systems weighed in with their belief that the 2020 biopsy missed significant cancer. I had salvage RP Jan 2024. The pathology showed Gleason grade 9 in one lesion and grade 8 in another EPE and a positive margin. The prostate bed was clear. I lymph node tested positive for PCa and a second suspicious lymph node could not be safely removed and will be treated with salvage RT. My post RP nadir was 0.40. I started Orgovyx and Zytiga in May 2024. My PSA is now undetectable. I start RT on the lymph node basin the first week in June. My outlook is hopeful.

I thought I was well educated in 2020 but I now realize that it would have been smarter to “pump the brakes” and seek a second opinion rather than rush into an experimental procedure that failed.

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Robert,

It pains me to read your journey. I wish your hormone therapy will finally keep your cancer clean and you can move on with your life.
I am just another person started with this journey. My first PSA from Nov, 2023 was 5.3. I had my first Transperineal biopsy in Feb, 2024. All 26 core were benign. Three months later from last week, my PSA is now 7.5. I have another PSA and MRI scheduled in August with UCLA. I am very nervous to see how bad my new results will be, then a new biopsy will be done then.
What I have learned from you and many others, and I truly appreciate your sharing of your experience:
1. Make sure all tests and treatments are done in a Center of Excellence facility.
2. After biopsy, seek second opinion of the pathology.
3. Request a generic test such as Decipher to check on aggressiveness.
4. Request PSMA Pet scan to check on spreads.
5. Request bone scan, CT scan.
6. Once a treatment is decided, seek another second opinion, maybe from a new Medical Oncologist to review again if everything is considered thoroughly.
If you can share what other steps needed so others like me, will not miss any other important pitfalls, it would be greatly appreciated.

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@frank1956

Robert,

It pains me to read your journey. I wish your hormone therapy will finally keep your cancer clean and you can move on with your life.
I am just another person started with this journey. My first PSA from Nov, 2023 was 5.3. I had my first Transperineal biopsy in Feb, 2024. All 26 core were benign. Three months later from last week, my PSA is now 7.5. I have another PSA and MRI scheduled in August with UCLA. I am very nervous to see how bad my new results will be, then a new biopsy will be done then.
What I have learned from you and many others, and I truly appreciate your sharing of your experience:
1. Make sure all tests and treatments are done in a Center of Excellence facility.
2. After biopsy, seek second opinion of the pathology.
3. Request a generic test such as Decipher to check on aggressiveness.
4. Request PSMA Pet scan to check on spreads.
5. Request bone scan, CT scan.
6. Once a treatment is decided, seek another second opinion, maybe from a new Medical Oncologist to review again if everything is considered thoroughly.
If you can share what other steps needed so others like me, will not miss any other important pitfalls, it would be greatly appreciated.

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Hi. Thanks for your kind words. I’d like to add one thing. Request a 3 Tesla MRI BEFORE the next biopsy so if something suspicious shows up they can target that area.

There is hope that you don’t have PCa but should it develop remember to be your own advocate and NEVER GIVE UP!

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I had gleason 6 - 3 +3 and a lower dna score and was given guidance for active surveillance. This was subject to change which did occur just six months later when I had a 3 + 4 and a significant change in my dna score.

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My brother-in-law is 3-3 and is just watching it and he is 77. Me 75 with a 4-3 with a 7mm lesion and 4 cores out of 30 because of my large 120-gram prostate. Three cores were 3-4 and one at 4-3 with a PSA of 2.9. The one core made me an unfavorable intermediate risk. I did the Space Oar gel and 5 proton treatments at Mayo Phoenix. One year and two months after the radiation all PSA's have been undetectable. Very minimal rectal bleeding for about a month. Blood smear on my feces which went away but having urine dribbles starting a few months ago. Follow up appointment this Friday.

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@stevpr8

My 3 +3 with low dna oncocyte score- active surveillance was the guidance from multiple doctors. (this changed 6 months later with a follow up biopsy)

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My understanding of the purpose of Active Surveillance is to monitor the potential for PCa progression, it's much different than what is called "watchful waiting".

First and foremost, after initial diagnosis, a 3+3 (GG1) or 3+4 (low volume GG2) MUST be confirmed...before one can truly be sure long-term AS is the best option. I think this last point is why many men do not feel comfortable choosing the road to AS - and it's perfectly understandable. Waiting for confirmation that AS is the right choice for 12 months is not for the faint of heart, especially at the beginning when one is on the steep end of the learning curve.

The proper AS protocol, during the first year after initial biopsy, includes:

1) PSA testing every three to six months (every 3 months is better).
2) A digital rectal exam (DRE) within the first 12 months.
3) A confirmational biopsy within the first six to 12 months.

If the 2nd biopsy confirms the first; then AS can continue with additional follow-up biopsies at least every two to five years. Although follow-up mpMRI's are recommended prior to follow-up fusion biopsies (but not more than every 1-2 years); they are not to be relied up as a substitute for biopsy (at least not yet).

If the confirmational biopsy indicates progression, it's likely the more aggressive cancer was missed in the initial biopsy and the initial diagnosis was wrong! However, I would argue that the AS protocol worked even in the "within 12 month progression" cases, because it's still early enough to proceed with active treatment AND the patient had much more time to consider his situation, research his treatment options and gain more confidence regarding the treatment type ultimately selected.

I've heard stories from folks, like yourself, who did not continue AS past the confirmational biopsy upon seeing a "missed" aggressive cancer situation. I also know of many that have gone 5, 10, 15 and even 18 years and are still on AS...it's a very diverse group. In fact, you can read about the 5, 10 and 15 year progression-free percentages of men who originally opted for AS.

AS uncertainties need to be weighed against a man's personal assessment of the risks of treatment side-effects, and again, I've heard fantastic success stories and absolute horror stories of men who have had all the various traditional treatments options.

Unfortunately, with PCa there are no guarantees with any treatment or AS decision.

In any case, I wish you all the wisdom and success a man can hope for as you continue your PCa journey.

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@joe1

Thanks. The MRI was done with contrast and they told me they just got a new magnet and the latest software. They rank your MRI outcome and mine was a 2 out of 5, which said "unlikely to develop any cancer", which I thought was interesting as we already know I have cancer.

I also have BPH and the doctor gave me Dutasteride (Avodart), but I'm afraid to take it as one of the side effects is that you develop a very aggressive cancer. However, if I don't take it he says I will need TURP surgery which also has side effects.

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I think I would get second opinion.

Usually a MRI is done when prostrate tests are high or climbing. The MRI shows suspicious areas not cancer. The biopsies are next to diagnose cancer. Prostrate cancer is very unique and it is subjective in the type of cells and how much they differ from other normal cells. But some prostrate cancers like all types of cancer can also be tumor type.

I want to be clear this is not a medical opinon from me nor am I a medical professional. I just went through the whole process in 2013 from the rising PSA levels, to MRI with contrast, to biopsies to one opinon on treatmetns, to a second opinion on treatmetns, and then 30 round of proton radiation and a lot of medical advice and information given to me during it.

It is also very important to do your own research and learn what major medical institutions research is and newest latest treatment or watchful waiting along with side affects, and possible complications of each.

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