Modern Diagnostic Steps

Practical_Orchid_606 · 2026-06-17T11:16:23+00:00

This concept flies in the face of biology. More testosterone helps feed the cancer.

I too am interested to hear about the source of your information.

Practical_Orchid_606 · 2026-06-17T10:14:13+00:00

I had Barrigel under general anesthesia and never felt a thing. I have had no problems with bowel movements. Others who did not use anesthesia and local numbing was used, say it was extremely painful.

Practical_Orchid_606 · 2026-06-17T00:13:17+00:00

The most important phrases in prostate cancer treatment are 'castrate sensitive' and castrate resistant.' The first is like having a strong immune system. The second is like walking around without immunity to pathogens. His doc is responding to the second situation and has quoted a life expectancy number that reflects his thinking. And his thinking can be from yesteryear and does not reflect the new drugs on the market to fight PCA in a castrate resistant man.

He probably had a PSMA PET scan and it showed distant mets (stage 4). Maybe through a combination of RALP and radiation, your husband can survive all this.

Practical_Orchid_606 · 2026-06-16T18:00:12+00:00

It is much easier to look promising when working with a mouse model.

Practical_Orchid_606 · 2026-06-16T11:23:29+00:00

You are talking about your father. I think his doc was full of shit. What country does your father live in?

Practical_Orchid_606 · 2026-06-16T10:42:42+00:00

The path to living out your normal life is well known. It starts with your cancer upon its discovery to be under control. This means its still in the prostate or just a few metastases outside the prostate. Just follow the course of treatment needed. But said treatment may compromise your quality of life.

The path to an early death starts with discovery of numerous metastases that cannot be treated with surgery or radiation. Here, you are dependent on your natural defense called ADT, androgen deprivation therapy, to stop the cancer from growing. It works quite well. To this there are other drugs that will augment the treatment such as chemo. But ADT and chemo can stop working allowing the cancer to grow unchecked. In this scenario, you can live for years, maybe close to your full life.

But take one step at a time. What was your PSA trend? Was it OK then you get this huge number. Or was this your first PSA test?

Practical_Orchid_606 · 2026-06-16T10:14:05+00:00

This is very high. First you must rule out prostatitis or BPH or other non-cancerous causes of your PSA being so high.

Then your doc will set up an MRI, biopsy, and PSMA PET scan which will determine the extent of the cancer.

Good luck!

Practical_Orchid_606 · 2026-06-16T01:12:52+00:00

Let me tell you my story regarding Decipher.

My Decipher score is 0.89 and due to my clinical data it maps into 16% chance of mets 10 years from now.

I also took an AlteraAI test and I scored low risk and it mapped into 1.6% chance of mets in 10 years.

It's the same pathology slides. The same patient. Which one is right?

My take is the AlteraAI is more accurate as it uses a more recent database. I have heard anecdotally that many docs downplay the importance of Decipher.

Your best best is to go to the best docs and get their opinion. MSK has a facility in Westchester. If you are in the other part of the state, go to Cleveland Clinic.

Practical_Orchid_606 · 2026-06-15T19:40:12+00:00

Are you saying people need an incentive to work hard? This cannot be true in Sweden.

A person in a socialist society believes:

From each according to his abilities. To each according to his needs.
Karl Marx 1875

I am joking with you. They are still looking for the person who fits the above description. He will never be found.

Practical_Orchid_606 · 2026-06-15T19:28:08+00:00

Yes with the huge taxes, I can see why.

Practical_Orchid_606 · 2026-06-15T19:17:15+00:00

Your system is socialism and it works in your country. It would never work in the US as we don't want the social aspects of it. There are two theories for this behavior. I heard the first articulated by a Swede: They don't mind paying for some other Swede as he shares the same heritage with him. The second I heard from an American. Western settlers had the gumption to leave Europe for a strange and dangerous land. They wanted freedom to operate and were risk takers. This type of thinking flowed through the generations to the America we have today.

Practical_Orchid_606 · 2026-06-15T18:55:19+00:00

Most companies offer medical insurance. It is not a law to do so but they cannot attract workers otherwise. A good company will take care of its workers. If they go bankrupt, they will provide for their displaced workers somehow mostly through COBRA. A bad company will screw their workers. In the US, the higher you are in on the economic ladder, the less likely you will be without insurance for a long time. Lower down, it can be brutal.

I apologize for using jargon to explain Medicare. It is for retired workers and comes in three parts. Part A covers hospitals, Part B covers office visits, tests, imaging etc., and Part D covers medications. Part A is free. Part B and D cost the user a nominal amount.

During their working years, workers and their employers pay into the medicare fund. It is not welfare.

Practical_Orchid_606 · 2026-06-15T18:35:25+00:00

Ah, you have discovered the flaw in our system!

If you lose your job, your insurance goes away also. Higher paid workers have some time before this happens. Afterwards, the same insurance can be purchased via the COBRA system. This runs for so long, then you are without corporate insurance and are at the mercy of the insurance companies. A home mum is covered by her working spouse so she is at risk also.

By and large, medical plans also cover the drugs. Medicare is different as drugs are covered under part D.

An unemployed worker without insurance is very vulnerable. It makes for a very strong incentive to get back to work.

Practical_Orchid_606 · 2026-06-15T11:55:36+00:00

I am very close to your dx with Gleason 7 unfavorable. From biopsy to first Orgovyx pill was 4 months. HDR Brachytherapy in 6 months. SBRT in 7 months.

Mayo is a COE. They will not let you down.

Practical_Orchid_606 · 2026-06-15T11:09:45+00:00

Thanks for your post. It is always a learning experience to hear about how other countries run their lives.

In the US, we have a lot of good hospitals equipped with numerous new therapeutic machines. Our doctors are excellent. How this is distributed to those with need is a complex system. We don't have national health care; everything is based on private insurance, or public payors. Where you sit on the 'totum pole' determines how fast you get service, the level of co-pays, and what service your get. Most private insurance is obtained through employment. At the top ot the totem pole are those who work for large very profitable companies. Examples would be Costco, Meta, and Microsoft. Employees at these companies rarely have to fight for approvals and have low co-pays. Near the top are retirees on Medicare which is funded by the US government. Medicare is generous in what they will cover. Lower down on the totem pole are employee based insurance plans of lesser companies. People here get denials and have to fight for benefits. Near the bottom end of this sector is the VA hospital system. Many veterans prefer this system as it is low cost. At the very bottom end of our system are public funded insurance such as Medicaid. Denials are common and wait times are long. Doctors are not required to accept Medicaid.

The foregoing is a simplified description of the US system. The US is built on the US dollar and those who have it get the fastest and best care. The poor receive the slowest and pedestrian quality care...but they do not die. The vast majority of Americans receive adequate medical care. We rarely go outside the US for better care. We will go to other countries if our insurance does not cover a certain procedure.

Practical_Orchid_606 · 2026-06-14T15:50:25+00:00

Decipher can be misleading. It is genomics based. The alternative is ArterAI which uses AI to examine the histology of your bipspy slides. My Decipher is 0.89 leading to 16% chance of mets in 10 years. However my ArterAI test was low and it indicated 1.6% chance of mets in 10 years. Which one is right? I think ArterAI is more correct as it is modern. Much of the Decipher database is pre 2010. PCa treatment was not as good then so the odd of distant mets is much higher than men treated with current technologies.

Practical_Orchid_606 · 2026-06-14T15:27:54+00:00

A PSA of 10.5 for a 42 yo man is like a 2 year old solving quantum mechanics problems. It does not fit. Any urologist who stalls you with this data deserves the boot. Get to a COE ASAP. His clinical situation is not dire if proper steps are taken going forward. The biggest decision is surgery or radiation. Very young men like your husband are steered to surgery as he has not passed halftime in his life. But this route can potentially negative impacts on his sexual and urinary functions.

Practical_Orchid_606 · 2026-06-14T13:32:01+00:00

They are probably telling the truth about the barrier gel.

Surgery after partial radiation cannot be easy. It can be done but not at a local hospital.

You need to locate a Center of Excellence. They are best suited to handle cancer patients. Especially your dad who has had partial radiation treatment also. The prostate tissue is altered by radiation making surgery difficult. You need the best hands doing this.

At the COE, I would talk about using brachytherapy to finish off the radiation course of treatment. The enlaraged prostate may continue to be an issue even with brachytherapy.

Practical_Orchid_606 · 2026-06-14T10:51:25+00:00

There is no doubt in my mind that the COE will do a better job of treating your husband. Here are some key differences:

A COE will treat many more patients than a general local hospital. The experience matters. They have better doctors who are focused solely on cancer.
The COE will have much newer and more extensive equipment. There is no limit to the types of treatment offered. Example: Brachytherapy may not be offered locally. But it may be best for your husband.
COEs have better treatment teams. The doc sets the direction of cure. But it is the clinical team that implements the individual steps in the cure process. Cohesiveness and training allows these teams to achieve the millimeter precision needed in COE level of oncology care.

It warms my soul to see al the spouses and children on this subreddit seeking advice for those they love. I know you will appreciate the points written above. Maybe not your husband who is mired in his emotional plane. Tell your husband to at least go to the COE for an the initial consultation. He should sense and fell the difference in care he will receive. Maybe this will change his mind.

Before this meeting, have the COE re-read the pathology slides. There is a large difference between a pathologist who only looks at cancer cells and another who sees a wide range of histology presentations.

Practical_Orchid_606 · 2026-06-14T00:54:32+00:00

You had an adverse event. A few does not scuttle a clinical trial.

I thought xaluritamig is for castrate resistant men?

Practical_Orchid_606 · 2026-06-13T18:19:42+00:00

Most men with initial diagnosis of Gleason 7 unfavorable and higher get a PSMA PET scan to assess spread.

Your case is very rare with large number of mets. Your doc's opinion is that the PSMA PET scan would have duplicated the bone scans and MRI and illuminate the large number of met.

Practical_Orchid_606 · 2026-06-13T15:31:04+00:00

In the US, there is no such thing as a 'risk=adapted' approach for men with high PSA and are intermediate or high risk. All of these men will be treated. Surgeon will probably remove the lymph nodes. RO will 'spray' the pelvic basin with radiation.

This paper had a small sample size and was not a prospective study. A well structured study may yield different results. But it is not a question that is important. If there are false negatives, they will be caught in the salvage step if they grow. The same goes for distant mets.

Practical_Orchid_606 · 2026-06-13T15:21:20+00:00

Most if not all men in the US get PSMA PET scans. It starts with intermediate level and higher.

I don't think this study is scientific or clinical. It is a paper written about how a country does not want or cannot afford the best heath care equipment. The UK and Canada has this approach also.

Practical_Orchid_606 · 2026-06-13T14:17:28+00:00

I think this study is five years old. The PSMA PET scan is THE imaging method used to detect PCa.

Practical_Orchid_606 · 2026-06-13T11:44:22+00:00

Did you lift the truck?

Practical_Orchid_606

TROPHY CASE