The decision I have to make is tearing me up

Posted by dbearb @dbearb, Feb 9 11:43am

12 months ago I started going to TRT place for access to peptides.
I got tested and my PSA was 3.7 went through questions about family history with cancer which had none. So I started getting blood work every month and for 7 months my levels went down a little bit but back to 3.7> So got checked and advised prostate was slightly enlarged but due to numbers had biopsy. 1 out of 12 and 3+4 Gleason score was results the 1 was higher up on prostate. Just completed MRI and going in for results in two days. I am really going crazy trying to determine if I really need to have surgery and be done with it or radiation but from reading articles that might be not a good decision. I am 56 yoa and want to get possibly more that 10 more years to play with new grandchild. Not sure if I'm asking to early about what people have done in my position and any regrets, they have for having surgery. GOD speed.

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

Profile picture for jeff1963 @jeff1963

I would not trust a TRT clinic to give advice or medical care for PCa. Hope you are now being treated by a Urologist.

You are likely at a very early stage in the process. There are many steps to go thru and waiting is tough.

It seems very promising that you have a doctor that has ordered an MRI. My former urologist did not, I had to seek care elsewhere.

Options are active surveillance or treatment. Treatment is surgery, radiation or focal therapy.

It's not easy deciding next steps. There's a chance you won't even need treatment now, active surveillance is an option for many. There's a chance that the lesion is small and non-aggressive, even a chance the lesion will not be visible on MRI. There's even a chance the pathology report is incorrect; my July 2025 biopsy was determined as 3+4 (by a Mayo Clinic pathologist even), but was later downgraded to 3+3 by another Center of Excellence Pathology Board. Some people choose to get a second reading of the biopsy.

I'd say next steps are to have your doctor order a Decipher test on your biopsy cores. That will help determine the aggressiveness of the lesion. Then you will also want to know if you have any genetic mutations for prostate cancer, which can help you & your doctor determine next steps. You can search for "Promise Registry" for the genetic mutations test. You have to send in a spit sample and they test it, when I did it last year it was free, guess it still is.

The odds are on your side. It's tough to do, but just keep working thru the process step-by-step. Keep reading and learning, some people are lucky to have a good doctor(s) to lead them through the process and others are not...but the fact that you are on this discussion board shows that you are gaining knowledge. Smart move!

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@jeff1963

Mayo participates in DNA testing through the Tapestry project. You might call genomic medicine and ask how to get it. I believe that it's no cost to you. Or you can Google Tapestry to find a clinic that might be closer to you.
https://www.mayo.edu/research/centers-programs/center-individualized-medicine/research/clinical-studies/tapestry
https://www.google.com/search

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Much about prostate cancer is about one’s state of mind, and it’s clear that your state of mind is a bit fragile right now

A few things to help calm your nerves —> regarding your comment “…and want to get possibly more than 10 more years to play with new grandchild.”

First, prostate cancer has one of the lowest mortality rates of any cancers you could get. You’ll be around for a very, very (very) long time.

Second, of all the possible Gleason outcomes —> 6(3+3), 7(3+4), 7(4+3), 8(4+4), 8(3+5), 8(5+3), 9(4+5), 9(5+4), or 10(5+5) - your Gleason 7(3+4) is the second lowest. Unless you have some other risk factors, (once again) you’ll be around for a very, very (very) long time.

> with your Gleason 7(3+4), what % is “3” and what % is “4”?

Finally, it’s standard of care to get the MRI prior to the biopsy. It’ll be interesting to see the results.

Yes, you’re asking too early to even be thinking about surgery or radiation just yet - without having full information about the nature of your diagnosis. You have many tests to go.

(I was diagnosed at 56y with a 3+3, and was on active surveillance for about 9 years. Ultimately, I chose proton radiation. That was almost 5 years ago; doing great today.)

Good luck with your continued fact-finding.

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Make sure to get additional opinions at a center of excellence. With a single core positive, you might be a candidate for a focal treatment (Tulsa Pro was already mentioned).

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I was older than you when I had a 3 +4 Gleason but had a 10.2 psa. I did have a decipher test, which showed low risk aggressiveness.

I did not want to have that tumor potentially growing in my body. No doctor could guarantee how quickly my body was going to react and to me, that meant being treated. I felt that even Testing every three months did not necessarily catch things quickly enough and even if I decided to get treated after three months, there is still a process to get in and be treated that takes time, hence, more potential growth, slow or otherwise.

I decided on A radiation machine that had a built-in MRI. I did not want to take the chance of the potential side effects related to removal, success stories notwithstanding. I also felt that some Margin of treatment was needed just outside of the Prostate, which is normal for radiation treatment, to potentially catch the cancer cells that might be Lying dormant But not have the margins be so wide that I had a bigger impact on side effects and quality of life. That’s why I picked the Radiation machine I did. The margins outside of the Prostate were 2 mm instead of 3 to 5 mm for most of the radiation machines.

You are here getting opinions so that’s a good thing and if you have not already gotten a second or third opinion from a center of excellence, Mayo, Cornell Weill, MD Anderson… Then it might be helpful to also do that as a Telehealth.

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@dbearb
WE all have had the shock of being told we have PC. Statistics show 1 out of 8 will get PC. My Mayo urologist told me if you live long enough you will have PC. So many many men die of other causes only during autopsies find the had PC but did not die of it.

Some forms of PC area far more aggressive than the most common ones. The survival rate for the most common ones is extremely high. If PC has spread beyond prostate that is another all together battle.

Did I read right that you did not have a MRI prior to biopsies? The common sequence that most of us went through was PSA testing, referral to urologist, DRE, then MRI, then biopsies and then decision of what to do. Your PSA is below normal like mine was. I had 3.75 but was steadily going higher. It shows that having a normal PSA level does not mean you don't have PC nor does a high PSA mean you do have cancer.

I do not see you mention Decipher. A Decipher test is far more accurate to determine you risk level and appropriate treatment. It can be done with same biopsies you have already had done. Also a PSMA test can help determine if confined to prostate. With early detection of PC (like mine) the PC was a cellular level I had no tumor or lesions.

You are far younger that most of us so that carries different decision making that us old farts did not have. So look at those with similar ages to yours not that we old farts can't help but being younger has different things you seek in your life span. The survival rates for having RP or radiation are about the same. So you can see one is major surgery and the other is radiation (and you have to pick from a lot of different types of radiation treatments).

Not a medical professional and do not have your medical and mental health history so it you and your doctors who must discuss your options. Don't hesitate to get second opinions on your diagnosis and treatment options even if you have outstanding experience doctors. My diagnosis was a Mayo and I still go second opinion at UFHPTI.

Asked about that Decipher test which can really help you with your decision making. Again, we all faced your problem and concern and was not easy for any of us to do what was best for us. So flood your doctors with questions, do research, get additional test, and consider a second opinion.

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Gleason 7 3+4 favorable intermediate: surveillance possible
Gleason 7 4+3 unfavorable intermediate: treatment recommended

...other factors need to be considered: PSMA PET CT scan helps to confirm the likelihood that nothing is outside of the prostate. You may wish to further reassure yourself by getting a genomics test [DECIPHER] of biopsy (bx) tissue which measures genetic predisposition to aggressiveness. ARTERRA looks over your bx slides again and compares them to thousands of others. Both will come back as LOW, INTERMEDIATE, and HIGH risk. The NCCN recently approved ARTERRA for its diagnostic value.

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Hi Sir ...sorry to hear of your diagnosis ...BUT , if you have to be diagnosed with prostate cancer, comparably your case is not as severe as many that I've seen. Every cancer is different as it occurs in different people. The 3+4 Gleeson, which is the same as mine, can be treated successfully. I opted for the operation, followed up by 22 sessions of External beam radiation three years later. That was five years ago. I go out hiking at least 10 km a day with the dogs, but usually 15 km, do laps in the pool, sauna with my friends, and travel a hell of a lot. It really hasn't slowed me down. I feel really good. You have some great advice here on the physiological aspects of prostate cancer. What I want to focus on with you is the psychological portion. Prostate cancer hits men psychologically very hard. You have to deal with the physiological and the psychological components in balance. They are both very important. Get involved with some men's groups and some zoom meetings to fill in your information and ask questions. With your age, your recovery from an operation would be spectacular...I would assume. If you're going to the operation at a younger age under 60, the recovery time is short and very efficient. Let us know your thoughts and how you are doing from time to time. Concentrate on the psychological anxiety and stress because it does you know good . In fact, the excess anxiety and stress because of prostate cancer can help your recovery and the disease itself. You have this I am sure. You're not alone and you have lots of friends here online. Some great advice as well. God bless and talk to you soon. James .

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Profile picture for Jeff Marchi @jeffmarc

@stage4lovolmetpc
You have to realize that prostate cancer today is not a deadly disease. It is a chronic disease. With the right drugs, even a Gleason eight can live for 10, 20, or 30 years. I know people that are Gleason nine that have lived 30 years before reoccurrence others 20 years.

I’m 78 and I’ve been on ADT since I was 70. I do get warm flashes a few times a day and have some brain fog as a result of the drug but you would never know I had prostate cancer for 16 years if you met me. I do run on a track twice a day a mile and go to the gym three times a week and spend an hour working on my muscles. I get bone strengtheners every three months. All of this keeps me so that I have been undetectable for the last 27 months even though I’ve had four reoccurrences.

Then you take the side of not being treated. You may live a long time or you may have the cancer spread to your bones and become painful. My father had radiation as his first treatment, but I remember the day he told me Lupron stopped working. He died of prostate cancer in extreme pain, Unable to communicate because he Had to take so much morphine for the pain. This was a guy who had his teeth ground down and crowned without Novacaine and came home at night and had dinner with us.

You could easily live another 20 years with prostate cancer as long as you get it treated and keep up with the recommended drugs. I’ve had surgery followed by radiation 3 1/2 years later, followed by Lupron 2 1/2 years after that and more drugs that have worked well. I have the genetic problems of BRCA2, which causes my cancer to keep coming back, but I’m still around.

As far as ED goes There are a number of solutions. You can get an implant that gives you an erection, They are very popular. You can get injections that allow you to get an erection for an hour or two, More than enough time.

I don’t know what you mean by wear a diaper. Most people have no incontinence after radiation. You can get a barrier like SpaceOAR, Barrigel, or BioProtect to protect your rectum from damage during radiation. Six years after radiation, I Started to have incontinence problems, which over the years have gotten worse. Never had to wear a diaper, wear a pad. I’m going to get an AUS (Artificial urinary sphincter) Installed in April, which will give me full continent back. That’s not the only device that works to do it.

The pill form of ADT is not something that you can just stop and everything comes back to normal right away. You will not feel it until your testosterone level gets very low, If you stop the pill at that point, it can take 2 to 6 months before things come back to normal. Of course, that can also cause your cancer to become more aggressive, What’s your preference?

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@jeffmarc Great comments here Jeff . Im sure he appreciates it so much . One question, I was diagnosed with prostate cancer when I was 57, I am now 62. I think you know my story having the operation then 22 sessions of radiation. My GP was talking to me the other day and said that in my condition I would last more than 18 years. I don't know where he got that from. I asked him what about my condition? He then went on to say that I was 3+4 and a very mild case of persistent dormant cells in the pelvic region with PSA at 0.060 roughly. He went on to say it just goes sideways so therefore, I suspect you will live 18 years or more. It kind of shocked me. Any sort of talk about mortality. When we started talking, he said with the advent of newer technology, you may live far beyond 20 or 25 years. Of course, I thanked him for his opinion. As you mentioned once, prostate cancer is more or less of a chronic illness rather than an emergency and most situations. If you get it early and or cognizant of the new therapies, I have seen some articles that say people can live 30 years or more with it. I think the fact that most people get prostate cancer in between 50 years old and 65 is a limiting factor as well. Although, more and more new diagnosis are happening in the 40s. I hear about new people at the Aquatic Centre all the time and some of them are very young. Anyway, thanks for your comments and your continued support. James

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Profile picture for VancouverIslandHiker @vancouverislandhiker

@jeffmarc Great comments here Jeff . Im sure he appreciates it so much . One question, I was diagnosed with prostate cancer when I was 57, I am now 62. I think you know my story having the operation then 22 sessions of radiation. My GP was talking to me the other day and said that in my condition I would last more than 18 years. I don't know where he got that from. I asked him what about my condition? He then went on to say that I was 3+4 and a very mild case of persistent dormant cells in the pelvic region with PSA at 0.060 roughly. He went on to say it just goes sideways so therefore, I suspect you will live 18 years or more. It kind of shocked me. Any sort of talk about mortality. When we started talking, he said with the advent of newer technology, you may live far beyond 20 or 25 years. Of course, I thanked him for his opinion. As you mentioned once, prostate cancer is more or less of a chronic illness rather than an emergency and most situations. If you get it early and or cognizant of the new therapies, I have seen some articles that say people can live 30 years or more with it. I think the fact that most people get prostate cancer in between 50 years old and 65 is a limiting factor as well. Although, more and more new diagnosis are happening in the 40s. I hear about new people at the Aquatic Centre all the time and some of them are very young. Anyway, thanks for your comments and your continued support. James

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@vancouverislandhiker
Your doctor was definitely giving you some good information.

If you could last five years, they will come out with some new drugs that will help people that have Castrate resistant prostate cancer continue to keep their PSA down even after the current drugs fail. In 10 years they might have a cure, Just reading today about reversing colon cancer by turning the cells back from cancerous to normal. They think it will work with other cancers.

When I attended the mutation patients online meeting a few weeks ago, one of the doctors from UCSF who has BRCA2 told me that I’m not gonna die from prostate cancer. After all these years and my being on a multitude of drugs, She was convinced that new discoveries were going to change things. Definitely a positive point of view.

So let’s just wait for it, Some new discoveries are coming.

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The urologist tells you your diagnosis, gives you two options (surgery or radiation), then says hey, it's your choice! My journey started this way about 5 months ago. My choice? What? It was like hitting a brick wall. True that urologists are surgeons, so surgeons talk about surgery. True that radiation oncologists know radiation, so they talk about radiation treatment. Oh, then you discover multiple radiation treatments, and each of those have nuances and rapidly emerging technologies. The sheer amount of information is overwhelming and makes you want to scream.

Just start doing research (this forum is excellent for personal and medical research). I wish I had gotten a second opinion from a Medical Oncologist who is neutral on radiation vs surgery, but I didn't, just researched everything with an open mind and tried to ignore professional biases. Once you see and hear it enough you start to understand the terminology and then the overwhelming amount of information turns into resources to inform your decision. Get second opinions. Ask all the doctors you talk to "why"? Why do you choose this approach and method? What are the most recent medical research papers that you trust and what are the links so I can read them too? Who do you think are the leaders in the field right now and how do I access their videos or web sites? Get second opinions with some of those Drs. After a while the best direction for you will become clear.

Take your time, make sure you understand the treatment options as deeply as YOU need, keep coming back to this forum to ask questions or just read what others have said. I researched my decision thoroughly. Six weeks of agonizing indecision, then one day the direction suddenly became clear and focused. In that I felt a calm. And keep coming back to this forum.

My neighbor took a PSA test after he heard about my diagnosis ... he stuck with his urologist's direction from day one without question and now, 6 weeks later, is almost done with his treatment and I'm only just beginning. Is my decision-making any better than his? Heck if I know, but I do know that I AM super comfortable with my decision and comfortable that I'm doing the best thing for ME.

Take a breath, take your time, do your research, be comfortable with your doctors and your treatment decisions. Keep coming back to this forum. Wishes for a long healthy life to you, my friend.

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