What should I do for treatment plan?

Posted by chunghk1 @chunghk1, Oct 4 1:14pm

I just found out 5 of Gleason 8 and 7 out of 14 biopsy samples, Dr want me to take PET scan see if any spread on other parts of body. And he did not mention what he is going to do yet. Any experienced people tell me what is the best options? Am I in dangerous situation? Want to avoid surgery? Can I?

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Well, you have options....and time, albeit you do have to make a decision

You have some clinical data, a Gleason Score and TRUS biopsy...

You don't provide the group your PSA, that is another piece of the decision making clinica data.

You say doctor...is that a urologist?

The recommendation to have a PSMA scan is one you should consider. Understand that depending on your insurance, they may "require" you to have a CT/MRI first before "authorizing" a PSMA PET scan.

I would add a radiologist and oncologist to your team and consult with them. Ensure the radiologist is an oncology radiologist and your oncologist has experience in treating prostate cancer. Once you've assembled your clinical data, the Biopsy, PSA, Imaging, consult with all three before making a decision.

You will have choices, that's the good news, the not so good news is you will have a dizzying array of choices and when you're new to this, understanding all the terminology, definitions and the science and art behind treatment, well, it can be overwhelming.

You've got homework to do to inform yourself of the terms, definitions...involved. That is imperative if you want to have a two way discussion between yourself and your medical team. The Prostate Cancer Foundation has an excellent guide for patients, the NCCN guidelines are too, albeit a bit more complicate than the PCF guide Still, the NCCN Guidelines are the "Standard of Care" and can serve as a starting point for discussions with your medical team.

As you build your medical team, consult with the, gain further clinical data, come back to this forum as often as you feel the need to tap into the hard lessons learned through the school of hard knocks. None of us are trained, educated, certified or licensed (well, there may be a few) but we can and will provide our thoughts, experience, point you in the direction of various articles which can inform you as you decide in concert with your medical team, on treatment.

Here's the link to the PCF - https://www.pcf.org/
and the NCCN Guidelines - https://www.nccn.org/guidelines/guidelines-detail?category=1&id=1459

I'm at the 10+ year point in an aggressive PCa, it is possible to live with it.

Kevin

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My situation similar to yours. Diagnosed at 71 - Gleason was 8. Elected five treatments of proton beam radiation and was on Lupron for 14 months. Three shots - 4 mo, 6 mo and 4 mo. The side effects were minimal. I continue to exercise and lift weights. Due to my age, I decided surgery was not an option for me.

I’m 74 now and recent PSA less than .25. I would recommend going to Mayo Clinic if you live close to one. Good luck!

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@chunghk1
What was explained to me is prostrate cancer is fueled by tetostorone. Thus when hormone treatments are prescribed it is to lesson tetostorone. That helps what every treatment you are going to have to greatly deminish the growing of the prostrate cancer and helps the outcome of the radiation or surgery outcome.

A Decipher test will more specifically identify the risk of your prostrate cancer and the need for hormone treatments. I was through my biopsies an intermediate risk and recommendation was radiation and hormone treatments. My R/O (Mayo Jacksonville) order Decipher test and bone scan. The results of those test showed that Decipher test was I was low risk and bone scan negative. This changed my treatment plan to radiation treatment only.

I went to UFHPTI and R/O there agreed with diagnosis but ordered another test (PSMA) and it too came back negative so I was not recommended to take the hormone treatments and had 30 rounds of pencil beam radiation treatments.

What radiation does is to damage the cells of the prostrate cancer. Prostrate cancer cells damage cannot reproduce like normal cells of prostrate. So what happens is they eventually die and the normal prostrate cells can and do reproduce making new prostrate cells and repairing themselves.

Thus you can see hormone treatment greatly enhancing the treatment if you diagnosis justifies it as it does have serious side affects. Surgery removes the prostrate all together but unless the cancer cells remained inside the prostrate the cancer will not be cured and you will have PSA levels rise again and again.

Lot to think about but get the tests that help with diagnosis and the right treatment for you specifically.

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@jc76

@chunghk1
What was explained to me is prostrate cancer is fueled by tetostorone. Thus when hormone treatments are prescribed it is to lesson tetostorone. That helps what every treatment you are going to have to greatly deminish the growing of the prostrate cancer and helps the outcome of the radiation or surgery outcome.

A Decipher test will more specifically identify the risk of your prostrate cancer and the need for hormone treatments. I was through my biopsies an intermediate risk and recommendation was radiation and hormone treatments. My R/O (Mayo Jacksonville) order Decipher test and bone scan. The results of those test showed that Decipher test was I was low risk and bone scan negative. This changed my treatment plan to radiation treatment only.

I went to UFHPTI and R/O there agreed with diagnosis but ordered another test (PSMA) and it too came back negative so I was not recommended to take the hormone treatments and had 30 rounds of pencil beam radiation treatments.

What radiation does is to damage the cells of the prostrate cancer. Prostrate cancer cells damage cannot reproduce like normal cells of prostrate. So what happens is they eventually die and the normal prostrate cells can and do reproduce making new prostrate cells and repairing themselves.

Thus you can see hormone treatment greatly enhancing the treatment if you diagnosis justifies it as it does have serious side affects. Surgery removes the prostrate all together but unless the cancer cells remained inside the prostrate the cancer will not be cured and you will have PSA levels rise again and again.

Lot to think about but get the tests that help with diagnosis and the right treatment for you specifically.

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Your info about what radiation does to prostate is very informative. Is it accurate about new cells being formed. Do you have proof? Just curious??

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@jc76

@chunghk1
What was explained to me is prostrate cancer is fueled by tetostorone. Thus when hormone treatments are prescribed it is to lesson tetostorone. That helps what every treatment you are going to have to greatly deminish the growing of the prostrate cancer and helps the outcome of the radiation or surgery outcome.

A Decipher test will more specifically identify the risk of your prostrate cancer and the need for hormone treatments. I was through my biopsies an intermediate risk and recommendation was radiation and hormone treatments. My R/O (Mayo Jacksonville) order Decipher test and bone scan. The results of those test showed that Decipher test was I was low risk and bone scan negative. This changed my treatment plan to radiation treatment only.

I went to UFHPTI and R/O there agreed with diagnosis but ordered another test (PSMA) and it too came back negative so I was not recommended to take the hormone treatments and had 30 rounds of pencil beam radiation treatments.

What radiation does is to damage the cells of the prostrate cancer. Prostrate cancer cells damage cannot reproduce like normal cells of prostrate. So what happens is they eventually die and the normal prostrate cells can and do reproduce making new prostrate cells and repairing themselves.

Thus you can see hormone treatment greatly enhancing the treatment if you diagnosis justifies it as it does have serious side affects. Surgery removes the prostrate all together but unless the cancer cells remained inside the prostrate the cancer will not be cured and you will have PSA levels rise again and again.

Lot to think about but get the tests that help with diagnosis and the right treatment for you specifically.

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A couple of things.

I think you’ve made a mistake in this statement

‘Surgery removes the prostrate all together but unless the cancer cells remained inside the prostrate the cancer will not be cured and you will have PSA levels rise again and again.”

I think you meant to say that if cells are left inside, the cancer will not be cured, you said just the opposite.

Prostate is spelled prostate, there is no extra R. in it.

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I found the Prostate Cancer Research Institute videos on YouTube to be an excellent source of information. https://www.youtube.com/@ThePCRI It appears to be unbiased and is presented in an easy to understand way. There are many treatments available and more exciting new ones on the way.
My urologist, a respected surgeon who is active in the prostate support community; my radiation oncologist, who just completed a fellowship at Harvard last year; another board certified oncologist who I saw; and the members of the local chapter of the prostate support group were all unaware of the Prostox test, HIFU, and Tulsa Pro treatments. It really pays to do your own research.

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PSMA Pet is the most sensitive, specific diagnostic test you can get at this point. No reason to get a bone scan in addition; PSMA is superior in detecting bone mets (I practiced Radiology for 40+ years so I have extensive experience with Imaging tests.

Gleason 8 is considered high grade. It needs to be treated aggressively. If the PSMA PET is negative and you elect surgery, your physician might not put you on hormonal treatment (ADT?Lupron/etc which deprives the cancer Testosterone to keep it from growing). If you elect Radiation, most physicians will add hormone treatment/ADT for 6-18 months.

Good luck!

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@ecurb

Your info about what radiation does to prostate is very informative. Is it accurate about new cells being formed. Do you have proof? Just curious??

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@ecurb
My post of information always come from urologists, R/O, etc. You can look up the treatment plans about radiation and what they actually do. Both Mayo Jacksonville and UFHPTI are my source of information.

UFHPTI gives out a free handbook including two books. Some new specific type radiation is done to kill specific tumors or areas of cancer cells but most are to treat entire prostate so don't miss and cancer cells not caught on MRIs or biopsies.

The cells inside the prostate will be damaged by radiation it does not kill the prostate gland. The normal cells can heal and reproduce. Prostate cancer cells are unique and the radiation damages the cells and they do not reproduce or heal and thus eventually die.

It is just like the hormone treatments. Hormone treatments do not kill the cancer cells. It starves them from testostorone which feeds the cancer. So stopping the feeding keeps the cancer from growing and thus what ever treatment you get is helped. It does not kill the cancer so if you miss some cancer cells with surgery or radiation they will begin growing after treatment ends.

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@jeffmarc

A couple of things.

I think you’ve made a mistake in this statement

‘Surgery removes the prostrate all together but unless the cancer cells remained inside the prostrate the cancer will not be cured and you will have PSA levels rise again and again.”

I think you meant to say that if cells are left inside, the cancer will not be cured, you said just the opposite.

Prostate is spelled prostate, there is no extra R. in it.

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@jeffmarc
MCC does not have spell check just a red indication sometimes. But if you type in prostrate no red indication comes up and would not have even noticed. If addressing spelling errors is important to you I am sure I make a lot of them and you can bring them to my attention. I type very fast and sure this is not the only misspelled word.

I belong to several support groups on MCC. I can have 60-70 notifications each day. I try to answer any notification that asked me a question. When I was first on MCC I had tons of questions and appreciated all who answered me and those giving me suggestions and their experience.

I do not see the error you are referring to. "Surgery removes the prostrate all together but unless the cancer cells remained inside the prostate the cancer will not be cured and your PSA levels will rise again."

Does it need more clarification? What you posted as what I meant is the opposite of my intention of post. After surgery if all your cancer cells were inside prostate the surgery cures you. If you had any cancer cells that had spread outside the prostate the surgery did not cure the cancer as it growing elsewhere.

This exact scenario is mentioned over and over on MCC. Individuals had surgery but the cancer returned elsewhere. This indicates at time of surgery the cancer cells were present outside the prostate. Unless the surgery included those areas also it did not catch all the cancer cells.

I think a lot of us because of this very scenario about surgery not always curing prostate cancer suggesting the PSMA and bone scans as so valuable to both radiation and surgery treatments to see if cancer cells are outside the prostate.

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@jc76

@jeffmarc
MCC does not have spell check just a red indication sometimes. But if you type in prostrate no red indication comes up and would not have even noticed. If addressing spelling errors is important to you I am sure I make a lot of them and you can bring them to my attention. I type very fast and sure this is not the only misspelled word.

I belong to several support groups on MCC. I can have 60-70 notifications each day. I try to answer any notification that asked me a question. When I was first on MCC I had tons of questions and appreciated all who answered me and those giving me suggestions and their experience.

I do not see the error you are referring to. "Surgery removes the prostrate all together but unless the cancer cells remained inside the prostate the cancer will not be cured and your PSA levels will rise again."

Does it need more clarification? What you posted as what I meant is the opposite of my intention of post. After surgery if all your cancer cells were inside prostate the surgery cures you. If you had any cancer cells that had spread outside the prostate the surgery did not cure the cancer as it growing elsewhere.

This exact scenario is mentioned over and over on MCC. Individuals had surgery but the cancer returned elsewhere. This indicates at time of surgery the cancer cells were present outside the prostate. Unless the surgery included those areas also it did not catch all the cancer cells.

I think a lot of us because of this very scenario about surgery not always curing prostate cancer suggesting the PSMA and bone scans as so valuable to both radiation and surgery treatments to see if cancer cells are outside the prostate.

Jump to this post

That is because prostrate is a word, meaning someone is laying face down. Not part of the body like prostate.

Must admit that wording was confusing, with the word “unless” instead of “if”making it unclear unless you read it a few times.

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