Low psa , high cancer grade

Posted by rogo @rogo, Aug 19 8:24am

My psa was 4.5 but the biopsy stated my cancer was a grade 5 ,which is the highest and most progressive cancer. I am doing genetic testing as they think it could be a gene mutation. I was adopted so I have no history. I have started hormone treatments and will have radiation. Any one else with similar situation? Fortunately, the pet scan showed the cancer did not spread beyond the prostate.

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Profile picture for Jeff Marchi @jeffmarc

@corin
I wish there was a simple answer to this, but medicine has not come up with a way to treat both Cribriform and intraductal successfully.

Did they say that it is large cribriform? That one is more aggressive and is a bigger factor.

They can treat the combo with radiation but the long-term results are uncertain.

I suspect you might want to be informed as much as possible about what’s going on in The treatment for these issues. Here are a few places that get into it in detail.

Here’s links to two videos that discusses treatment for intraductal.
https://pubmed.ncbi.nlm.nih.gov/40186732/
Intraductal video


Here’s a couple of videos that discuss treatment of both issues
https://connect.mayoclinic.org/comment/1612121/

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@jeffmarc
Thanks for providing the links, Jeff.

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In 2008, my PSA was 1.0. My primary doctor did a DRE, felt a nodule and sent me to a Urologist. The Urologist also felt the nodule but said I could't have prostate cancer with such a low PSA. He told me to return in six months and get another PSA. I asked what he would do in six months if my PSA remained low. He said he would do a biopsy. I asked why we were waiting six months since he was going to do a biopsy regardless of my next PSA. He admitted it didn't make sense to wait. During the biopsy he only took three samples because he said I couldn't possibly have PC. One sample tested positive, I had an RP and my final Gleason was 4+4. I had a recurrence 16 years later and was treated with EBRT. My PSA is now undetectable. The morals of this story:
-A small but significant percentage of men have non PSA producing PC.
-The DRE may have saved my life. It is not customarily done and many say it's unnecessary. It can be a life saver for men like me, it's quick, cheap and has no down side other than brief discomfort. I am very unhappy that it's not being done more often.
-If your doctor proposes something that makes no sense, don't hesitate to speak up.

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Profile picture for brownsf @brownsf

In 2008, my PSA was 1.0. My primary doctor did a DRE, felt a nodule and sent me to a Urologist. The Urologist also felt the nodule but said I could't have prostate cancer with such a low PSA. He told me to return in six months and get another PSA. I asked what he would do in six months if my PSA remained low. He said he would do a biopsy. I asked why we were waiting six months since he was going to do a biopsy regardless of my next PSA. He admitted it didn't make sense to wait. During the biopsy he only took three samples because he said I couldn't possibly have PC. One sample tested positive, I had an RP and my final Gleason was 4+4. I had a recurrence 16 years later and was treated with EBRT. My PSA is now undetectable. The morals of this story:
-A small but significant percentage of men have non PSA producing PC.
-The DRE may have saved my life. It is not customarily done and many say it's unnecessary. It can be a life saver for men like me, it's quick, cheap and has no down side other than brief discomfort. I am very unhappy that it's not being done more often.
-If your doctor proposes something that makes no sense, don't hesitate to speak up.

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@brownsf
Around 10% of prostate cancer patients do not produce PSA. It’s great to hear you didn’t Stay with the doctors opinion.

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Profile picture for lagnafinc @lagnafinc

I did have it twice, at Swedish Cherry Hill in Seattle; and no I did not use up my lifetime supply of radiation eligibility after the first round. If I remember right from 13 years ago, the first round was a total of 50 Gy spread out over five fractions (treatment days). The second round 8 years later was a lower dosage of 38 Gy over the same five fractions. At this point I cannot have any further radiation of the prostate, mostly due to the buildup of radiation scarring, and would have to go chemo from here. However, if I were to have any metastases elsewhere in my body I could still go back for more radiation. Hope that layman's explanation helps...

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@lagnafinc Thanks…actually, your answer is one of the reasons I chose surgery; how did the RO know how many Gys I would need to kill it completely?
There must be standards -according to Gleason score and other patho features - which determine how much you need, but there are just so many unknowns.
Surgery was certainly no guarantee either!
Phil

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In every RO dept. there are three key team members: the doctor, the technicians who run the equipment, and the physicists who actually design the treatment plans. My Seattle RO and his physicist were part of the team at Stanford that developed Cyberknife and all the physics tables/Gy doses initially used for treatment plans. One of the things they discovered early on was that the prostate was capable of accepting higher doses of radiation than other parts of the body, which is why the more accurate Cyberknife (which came out as sub-millimeter accuracy) ended up being a 5-day, high-dosage treatment plan rather than ten weeks with older low-dose machines which were less accurate. But like anything else, CK has its own long-term drawbacks.
Personally I avoided surgery because it almost guaranteed incontinence and ED as the price of admission.

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Profile picture for rlpostrp @rlpostrp

Sorry to hear of this. "Personally", if I was a grade "5", I would go straight to the radical prostatectomy. "While" you are undergoing your chosen treatment plan, your cancer still has time to get worse...spread to your seminal vesicles, lymph nodes, and bones. If it gets to your bones, get your Trust and Estate documents updated, your spouse and survivors will need them. Sorry...that was blunt.
Sometimes I mildly shake my head to violently shake my head, when I read the choices that contributors share that they have made. It is all personal choice to feel in control and as safe as you think you can be, but your mention of Grade 5 and only doing hormone treatments and radiation tells me that you NEED a second opinion because...
Once you have radiation, and it doesn't work as you'll often read here, you're done. It is nearly impossible to remove a still-diseased prostate "after" radiation. When discussing my options (Active Surveillance, radiation, or surgery), my urologist said "radiation turns your prostate into a walnut sized chunk of concrete that is nearly impossible to be removed...(adding)...you always do the prostatectomy first, and then - if needed - you followup with radiation if your PSA starts to rise in later months, years or decades."
I would get a second opinion before you start hormones and radiation. Read the men's blog offerings here about their experience on hormones...they become emotionally labile women, spontaneously crying, and getting hot flashes, etc. You are quite literally messing with your brain...your pituitary gland and hypothalamus. That is my "line in the sand." I will never do hormone treatment. "If" my cancer returns some day, I will do Proton Beam Radiation (not traditional radiation), and live out whatever remaining years that God gives me, even if hormones would give me more. The effects of hormone treatment are equivalent to men who are transitioning to become a woman: full testosterone suppression, which gives rise to increase in female estrogen and other hormones, turning you into a woman. We all know how crazy they turn out...it affects your brain chemistry and behavior.

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@rlpostrp
It would be prudent to check all the facts before we make a post. Also, I personally would never make transphobic and misogynistic comments since Mayo forum is inclusive place and I reported your post to moderators.

1) For example, ADT lowers ESTROGEN by almost 80 % !

2) Man do not become females if they are on ADT , they can not even if they want to !

3) Every person reacts to ADT differently and majority does not have such strong reaction like you describe.

4) Hot flashes are not strictly "female" problem, many medications can cause hot flashes and different hormonal changes inclooding stress can cause hot flashes in BOTH genders.

5) Every person has a right to choose his/her own treatment according to MULTIPLE factors. The same way you will never use hormones (even if that means death to you) other people can choose RT and ADT as the first line of defense (and it will NOT mean , not even close, the death sentence to them - where do you get your facts ???)

6) It is not our place to advise people about estate and will planning , highly inappropriate comment. And "you are done" comment is beyond insensible and incorrect on top of it all. Go and read threads about stage 4 longevity , we just recently had one. With new advancements that are happening every day in cancer research area, a complete control or even cure is just around the corner.

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Profile picture for surftohealth88 @surftohealth88

@rlpostrp
It would be prudent to check all the facts before we make a post. Also, I personally would never make transphobic and misogynistic comments since Mayo forum is inclusive place and I reported your post to moderators.

1) For example, ADT lowers ESTROGEN by almost 80 % !

2) Man do not become females if they are on ADT , they can not even if they want to !

3) Every person reacts to ADT differently and majority does not have such strong reaction like you describe.

4) Hot flashes are not strictly "female" problem, many medications can cause hot flashes and different hormonal changes inclooding stress can cause hot flashes in BOTH genders.

5) Every person has a right to choose his/her own treatment according to MULTIPLE factors. The same way you will never use hormones (even if that means death to you) other people can choose RT and ADT as the first line of defense (and it will NOT mean , not even close, the death sentence to them - where do you get your facts ???)

6) It is not our place to advise people about estate and will planning , highly inappropriate comment. And "you are done" comment is beyond insensible and incorrect on top of it all. Go and read threads about stage 4 longevity , we just recently had one. With new advancements that are happening every day in cancer research area, a complete control or even cure is just around the corner.

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@surftohealth88
Yes...understood of course...it is rather obvious. I was trying to convey the very real possibilities and realities THAT I HAVE DRAWN AND QUOTED FROM THIS VERY BLOG of men's experiences. I don't know how often you are on...I do recognize your "handle"/name, but everything I quote, I do from 40 years in professional healthcare experience, and/or paraphrase quotes from men like us who share their experiences right here. Any man who reads our exchange would verify that they have read of the experiences men have while being on hormone therapy...the spontaneous crying and emotional lability that they themselves describe as being like a woman. I offer no personal opinion or sociopolitical views...I only quote what I have read right here. If I offer a personal opinion, I literally say: "It is my personal opinion...." Like I did this morning: "It is my personal opinion that I would do the radical prostatectomy" offered to a man who was looking for our experienced guidance, thoughts, and opinions. People write here for our feedback as we battle our similar journeys together in this supportive environment...one of, as you mention...inclusivity.
The comment of "becoming a woman" is obviated with the knowledge that it is only "temporary" while you are on the hormones, but again, I quote the comments of men who have written here that they felt like they became an emotional, labile woman while on hormones. The comment on hot flashes is direct recollection of men writing in this very blog, so I am once again, only repeating other men's experiences in what I offered by quoting them. You must have missed a lot of posts about men expressing their experiences during hormone treatment. I said nothing of misogyny...that is on you and your inner world view on how you extrapolate meaning based on personal views. You should look inward and ask why, as a man, you would have interpreted anything as misogynistic, when in fact, nothing was written as such. Good luck in your inner explorations.

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Profile picture for rlpostrp @rlpostrp

@surftohealth88
Yes...understood of course...it is rather obvious. I was trying to convey the very real possibilities and realities THAT I HAVE DRAWN AND QUOTED FROM THIS VERY BLOG of men's experiences. I don't know how often you are on...I do recognize your "handle"/name, but everything I quote, I do from 40 years in professional healthcare experience, and/or paraphrase quotes from men like us who share their experiences right here. Any man who reads our exchange would verify that they have read of the experiences men have while being on hormone therapy...the spontaneous crying and emotional lability that they themselves describe as being like a woman. I offer no personal opinion or sociopolitical views...I only quote what I have read right here. If I offer a personal opinion, I literally say: "It is my personal opinion...." Like I did this morning: "It is my personal opinion that I would do the radical prostatectomy" offered to a man who was looking for our experienced guidance, thoughts, and opinions. People write here for our feedback as we battle our similar journeys together in this supportive environment...one of, as you mention...inclusivity.
The comment of "becoming a woman" is obviated with the knowledge that it is only "temporary" while you are on the hormones, but again, I quote the comments of men who have written here that they felt like they became an emotional, labile woman while on hormones. The comment on hot flashes is direct recollection of men writing in this very blog, so I am once again, only repeating other men's experiences in what I offered by quoting them. You must have missed a lot of posts about men expressing their experiences during hormone treatment. I said nothing of misogyny...that is on you and your inner world view on how you extrapolate meaning based on personal views. You should look inward and ask why, as a man, you would have interpreted anything as misogynistic, when in fact, nothing was written as such. Good luck in your inner explorations.

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@rlpostrp

I am a woman and as a woman I have to tell you that not only your last post was misogynistic. I did not try to correct you before since I was hoping that you will eventually stop using derogatory references about women and it is sad that you still do not recognize what you are actually doing or saying. Since the situation is obviously hopeless, I will not even try to explain further.

Just for the fun of it - what do you think "labile woman" comment implies ? Are you saying that there are no "labile man", so when a man has emotional issues he is like a woman - yes ? No ? Only women have emotional issues ??? Man is never "labile" ?! *sigh

It is flabbergasting that you are still not seeing how derogatory your comments are. You are mentioning "inclusiveness" after you called trans people "crazy" ! It is really sad that highly educated person like you is stuck in this distorted views of female gender and can not go past prejudicial behavior, not even after it was brought to your attention.

I definitely did not miss any of posts here since I was here daily and was daily giving support to all members - about 90% of my posts are actually answers to questions and giving advice to others.

So I am also wishing you luck in finally entering into 21st century and behaving with respect toward all human beings regardless of gender and/or orientation. I am also wishing you luck getting out of "victim" modus operandi and accepting this new situation that you found yourself in and perhaps you might stop telling other people that there is only "doom and gloom" ahead of them - you are projecting your own feelings onto them and that is neither nice nor helpful.

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