52yo Gleason score of 3+4 in San Diego
I have a follow up call from my doctor about treatment, surgery, radiation or continued surveillance.
I'm a firefighter and in good health, workout almost every day.
Anyone receive treatment in San Diego?
I've read about other protocols; anyone try them during active surveillance?
Thank you in advance for any response.
sith55
Comments
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sith55,
If you are able to share more details from your Biopsy report regarding numbers of cores containing cancer and Gleason scores of each, any cribriform pattern, along with PSA history that would be helpful to members for their comments. In addition you mention continued Active Surveillance. How long have you been on AS? I don’t know about treatment in San Diego, but I imagine UCSD Medical Center, Moores Comprehensive Cancer center is good. Also you are not far from numerous comprehensive cancer centers of excellence in Orange county and LA, such as UCLA Jonsson, UCI Chao, USC Norris , City of Hope, Cedars-Sinai, along with numerous other top notch hospitals including Hoag Hospital. Being in Southern California you have a plethora of treatment centers depending on the treatment that you are looking for as some offer newer treatments that others don’t and you might decide to travel from San Diego to LA for a surgical technique or focal radiation procedure from a certain high volume experienced Surgeon or Radiation oncologist.
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Hi Wheel,
So, I was diagnosed 3+3 in 2023 and this year I am now 3+4.
4 of the 12 samples are listed as Adenocarcinoma.
3+4=7 grade group 2 tumor length 0.8 cm core length 1.6 cm percent of biopsy 50%
3+3=6 grade group 1 tumor length 0.7 cm core length 1.5 cm percent of biopsy 47%
3+3=6 grade group 1 tumor length 0.1 cm core length 1.0 cm percent of biopsy 10%
3+3=6 grade group 1 tumor length 0.3 cm core length 1.8 cm percent of biopsy 17%
The rest state Benign prostate tissue
My PSA 2020 2.99 and 3.1
2021 3.78
2023 6.82, 5.88, 4.14
2024 5.19, 5.77
I haven't done a PSA since December 2024; my last biopsy was February 2025.
I'm in the Sharp system; how do I go about contacting places in LA or Orange County?
I'm very new to this and any help would be appreciated!
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sith55,
I don’t know if your urologist sent off biopsy tissue for Decipher testing, but that testing can help make any call about even considering staying on AS. It tests your genomic makeup of your cancer for aggressiveness. If they did not do this ask them to. Also the one core of 7(3+4) could be sent for a second opinion at John Hopkins to see if they were to downgrade to 3+3 which could also help in your decision about AS unless your Decipher score put your cancer into into the mid to higher aggressiveness which you would likely look at quicker treatment. As for Sharp I have heard of them in San Diego but believe your health insurance would limit you to treatment at their facilities. At an open season for health insurance usually in October you could opt likely if your employer offers options you could find a PPO instead of Sharp or another insurance plan that is not tied to specific hospitals. Its like if you are in Kaiser you have to go to Kaiser, or Sharp to their hospitals, while other insurance like Cigna, blue cross or others would allow you to see any of doctors at the other facilities if they take that insurance plan. Each of the major comprehensive cancer centers have their prostate cancer sections that will schedule you to see a doctor in their urology oncology by calling them or going through their website.
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Hi,
Don’t know if you had one but I would suggest an MRI or a better test would be a PMSA PET scan to look for cancer spread outside of the Prostate. AS could be an option based on how close the cancer is to escaping the Prostate capsule. Surgery and radiation are the other two main options. I feel once you get another scan or two you along with your doctor team(Urologist/Oncologist) you can come to a proper conclusion on what direction to take. You have the time to decide based on your own personal choice plus that of your doctor team.
Dave 3+4
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PSA rising, 50% core 3+4, I'd be surprised if continued AS is recommended. I was 51 with 3+3 that came back with high volumes (> 50%) in 2 cores and the AS doc at Hopkins was apprehensive about me staying on AS. Age was a driving factor as they had older patients with similar situations. I did wait for my next PSA which broke 5 and I was done with AS. My pathology after surgery was 3+4. Get all the tests / information you can and make your best informed decision.
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I don't know if they did the
Decipher testing, I will definitely ask today when my doctor calls me at 3:40 for my follow up.
I will also ask about a second opinion.
My insurance is actually BlueCross/BlueShield FEP, federal employee program. The nearest hospital is a Sharp hospital so that's why I choose them.
Did any of you do the radiation? I really don't want to have surgery to have my prostate removed.
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Hi,
A new imaging test either MRI or PMSA PET scan will show you how much the cancer has grown. Once you have one you can make treatment decisions. If you don’t do surgery then there are several forums of radiation, external beam radiation or inserted radioactive seeds. I have included a link for you to study.
Dave 3+4
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What percentage of your 3+4=7 core was grade 4? A little bit? Or a significant percentage?
On your first biopsy, which I assume was targeted, were the positive samples restricted to the index lesion? How about this new biopsy? Same cores in general?
A new MRI would tell you if the lesion had grown.
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Since you have BCBS FEP you can consult with other doctors and institutions. That's very much a plus. Don't be afraid to do so. You are the one in charge!
I doubt that BCBS will cover a PSMA PET scan, considering the MRI result and recent PSA data.
I second the idea of sending all of the positive biopsy samples out for a second opinion.
With respect to radiation, there are, unfortunately, relatively rare cases with poor outcomes. That's true for surgery as well. One person's opinion should be judged against real (published) data for hundreds, if not thousands of patients.
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I was in the same spot as you I was diagnosed at age 56/ first of all. What is your PSA? What is your Gleason score? This is very important. Did the MRI show that it was contained to the prostate, you have options but at your age, the gold standard is surgery. This is my story. I had gleason 7 3+4 it was contains the prostate at the time, I was absolutely petrified of surgery even though I knew it was the right thing to do. I talked myself into doing the radiation route. It was a huge mistake. One thing I have to tell you you need to get decipher testing done, i had it done and the test came back as cribiform which is aggressive panicked sunk in I was losing my mind making a decision, but I went with radiation route So the radiation messed me up after the third treatment I had to go on Flomax. I could not urinate at all and I had to stay on Flomax after that rpywice daily also messed up my bowels. After radiation, your PSA slowly drops over the years which is very nerve-racking so six years later my PSA dropped down to 0.8. I thought I was good. My PSA slowly rose to 1.8 so they did another MRI and a biopsy and guess what the cancer was still there. In the same spot where the radiation was targeted . I had two top surgeons. Tell me that the type of cancer i have cribbiform seems to be radiation resistant. I was extremely lucky. Cancer was still contained the prostate. I sought out the best surgeon in California at UCLA, which is near you. His name is Dr. Robert reiter I highly suggest you make an appointment consultation with him.. on April 1 i will have my one year follow up and right now I am cancer free and I am very grateful if I could go back I would not think twice but having surgery the gold standard for prostate cancer treatment is if you expect to live more than 10 years and the cancers contain to the prostate is surgery it is the number one choice radiation is the back up choice just in case it ever happens to come back. I don’t have that choice. You can’t do radiation twice, don’t listen to all these horror storiesabout surgery . .i had salvage surgery which is ectremely tricky and I was only on that table for less than two hours in the hospital overnight catheter for a week and I am a bit incontinent that is because of the salvage surgery. If I would’ve done it first time I would’ve had virtually no side effect most likely . I an confident i would be continent. I can still get erection even now , don’t make the same mistake I made it is extremely important. You have that cancer tested to make sure it is not crib form if it is, you have no choice I would not do radiation and even if it isn’t, I would still do the surgery get it done and don’t look back. I personally now know seven guys that have had the surgery done all of them have virtually no side effects and all of them have been cancer free for a long time. If you have anymore questions answered feel free to ask. Remember Dr. Robert Reiter at UCLA look him up on YouTube look at all his videos. He is a miracle worker
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Agree with Steve1961, if you are hearing horror stories about surgery, dismiss them. Certainly their are instances like with any surgery that results or side effects are not what that individual patient anticipated. It is the same with Radiation. It is like looking at trip advisor or yelp on restaurants or hotels there will always be one star reviews regardless. What is important is that you have thoroughly reviewed your current state with what is offered for treatments and realized that Surgeons generally recommend surgery and Radiologist’s generally recommend Radiation. So where does that leave you. Try to look at what side effects are you most concerned with and can they be minimized. In surgery one always hears about ED and incontinence. Well today both of those are very minimized depending on your surgeon and his technique. Single port Robotic Surgery and puboprostatic ligament sparing, along with Retzius sparing diminish both of those substantially. Now with Radiation the Space Oar Hydrogel to reduce rectal issues is a significant advancement. My main concern was rectal issues as I always felt incontinence was easy to minimize with pads. Another significant factor is cribriform pattern in your tissue. This is radiation resistant. It doesn’t mean everyone’s is, but overall it is becoming a well known factor to consider. Now if you undergo surgery, you will hopefully if at all ever need a salvage treatment years later, however if necessary you have the ability for salvage Radiation treatment. If you have Radiation treatment and need salvage treatment, surgery does become an issue. It can be done, but it is difficult, performed by presently a small group of skilled surgeons that are willing and experienced to undertake the surgery. Does that mean in five more years it won’t be routine? It could be, but for all these prior years it was a concern. I believe the younger you are the recommendation is surgery as it is believed and anticipated the cancer is removed. With radiation you might have many years for it to return. As you can see it is not an easy decision and you will have proponents on both sides of the issue vouching for Surgery or Radiation. I can only recommend that you throughly research your options and Absolutely obtain a second opinion and then deciding on what is best for you in your mind, make your decision.
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Good evening, everyone,
So, after talking to my doctor, he explained to me that I'm a 3+4=7 only on 5% of the cancer biopsy and 3+3=6 on the rest so that's better news than I thought.
He did go over treatment, recommending surgery but 1st he sent my sample to get the decipher testing.
Fingers crossed on that one!
Being a firefighter, I'm hoping to put it off until next year in October then if all is well, retire at the end of the year.
Again, appreciate the support!
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I was following active surveillance for a few years. Ultimately decided on surgery as I wanted the comfort of knowing cancer was removed. By not waiting too long the post surgery pathology said no cancer in margins which reinforced my decision to not wait on surgery too long. Seven (7) weeks post surgery I am happy with my (in)continence and gradually improving every week with kegel exercises. If I was at this incontinence level the rest of my life I would be happy to be alive and not a big deal. No erections yet but everything I hear it takes time and my wife and I have many ways to express our affection for each other.
Being a firefighter I assume you are physically fit and active. I was incredibly fit going into robotic surgery and recovery was very quick. As far as incontinence start doing kegel exercises now. Kegels are good pre-pop and important post op.
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