I’m so glad that I found this video. My husband is newly diagnosed. Gleason score 9, PSA 8.11, spread to spine. His urologist said he had 3 to 5 years, even with hormone treatment. I asked my husband today if he wanted to get a second opinion, he just shrugged his shoulders. Hearing that your husband lived 13 years gives me hope, thank you for sharing. 😊
3 to 5 years only? sounds like they are giving worse case scenario to me. I have stage 4 prostate cancer which spread to 4 locations in the bones, two of them in the spine, Gleason 9 and the PSA was 12.1. I only had urinary symptoms, never any bone pain or other issues. I 've been on hormone therapy for 10 months, PSA dropped to 0.47 by hormone therapy alone, Lupron and Abiraterone Acetate (Zytiga). No other cancer spread. Just got radiation treatment to the prostate and all 4 bones sites, with the hope of clearing up the visible existing cancer. Too early to see the results of the radiation treatment. Yes your husband needs to get another opinion. I think the grim outlook he was given was unfair.
As a loyal follower of Alex & Dr Scholz I am sorry to say that a conversation on "PSA 7,000 and 13 years" without touching on "How?" has been a disappointment. One would expect a few words, at least, on the type of treatment(s) followed and the benefits obtained.
Awesome.i was able to meet Joel onceHe is a true PC hero.now seeing Jan. She is also a hero. V Dan Kasper 10 years metastatic stage 4, .8 years undetectable. Never give up hope, always keep the faith!!!
Thank goodness for the wife’s. I have Gleason 8 now in remission if it hadn’t been for my wife and investigating my disease and insisting I get a 2nd opinion I don’t think I would be here. She got me into Mayo and after 2 years of aggressive treatments I am doing well. I do feel I have a future. My own doctor at Mayo told me you have to advocate for your self. Thanks for your videos I have learned a lot about my disease. Keep up the good work.
Where is the story ? 13 years and very little information on how her husband progressed during those years and the treatment that was undertaken. That’s what I expected to be covered in the discussion.
Thank you for sharing your husband's journey. Glad to hear about his 13 year's survival despite the presenceof metastatic disease. Please allow me to ask what his performance status was during that period of time. Was he very sick for an extended period of time? How much pain was involved?
I don't see how her husband recovered by his high psa. But she was focusing on her research work about prostate cancer talking to Dr. would be informative on her part., but what we want to know who had prostate cancer how we cercumbent hight Psa... Her research and study is not our ultimate concern but to recover our physical condition..
Doctor I have a cyst 4 years ago, I used to have painful ejaculation, now for the last 2 months I have been having burning pain, I was undergoing urine infection treatment which did not stop and lastly there was extreme pain in prostrate, now there is pain in pelvis area towards the bone, I got regular CT and ultrasound done last month, there was no stone, it was just ecoli infection. Are my symptoms of cancer? The doctor does not tell anything other than stone, prostitis and uti, and the pain is increasing with sitting.
The PSI is not the very best test for prostate cancer. There is a newer more accurate (though more expensive) test called the 4Kscore test from Opko health that is available.
@Jan Manarite Am I wrong in thinking that it's a much more accurate (although more expensive) predictor of prostate cancer than a regular pcr? I read your link, and it's not clear to me why anyone wouldn't prefer the 4kscore, other than cost.
Yes it was expensive. From Bio Reference it was $768.20 USD. After insurance deduction (April 2023) I paid $496.45. The test showed a huge drop in PSA and free PSA @ 17 which I determined to be good enough to put off biopsy....indefinitely. I paid more for my car's 30,000 mile automobile checkup. But keep in mind the man typing this is not convinced that 12 (maybe more?) needle jabs through his rectal wall into a gland he feels evolution has protectively hidden more than his own heart to extract tissue should be undertaken without an immense amount of consideration. Disclaimer: I also had a clean MRI. Still, given the huge decline from recommendations of surgery now to active surveillance gives me grave cause for concern. I'm also able to read and understand my results and make my own medical decisions. I realize some people (even some I consider friends) cant understand test results... but imo it's really not rocket science. I've heard "it is to us." (Us?) So I'm writing this for whatever it's worth to anyone, and also agree it's expensive.
There is no evidence that we are aware of that a vegan diet could cure prostate cancer once it is large enough to be clinically significant, but Dr. Scholz, who is in most of our videos, has noticed that some of his patients with advanced prostate cancer have gone on a vegan diet and then afterwards their previously rising PSA had slowed or stopped. A rigorous study would be required to see if there was a connection there, but it seems to be a safe and reasonable thing to try, especially in those rare cases when men end up in urgent or desperate situations, for example, cases with distant metastasis and/or castrate resistance (checking with doctors, of course, to make sure a person is getting all of the nutrition they need considering any treatments they are going through or any other special consideration).
I don't think so. Instead, I feel adequate vitamin D levels need to be maintained, there is a blood test for Vitamin D levels. Vegan diet might be OK but the man must be cautious of too much Omega 6 which increases inflammation. It's easy on a vegan diet to intake too much Omega 6, so when going vegan make sure to get an adequate amount of Omega 3 as well, which can be tricky on a vegan diet because vegan dishes can be very high in Omega 6.. So although Dr Scholz who I respect immensely saw good results in patients going vegan, my highest PSA score over a 10 year period was when I went vegan.
My doctor says PSA tests are a waste of time. Too many false positives. PSA can be high for a multitude of reasons, and high numbers often cause knee jerk reactions and aggressive treatment that isn't necessary and can be harmful. Also, low PSA is no guarantee either. Often the most aggressive forms of the disease, the ones most likely to kill you, don't raise PSA at all.
I would find another doctor, my psa was 3.9 Gleason 9 , if my doctor hasn’t pushed me to get it checked, I would be eat up with cancer, luckily we catch it is time
ALan Sech I had a psa of 3.8 up from a 2.8, when I went to my Female Doctor, she found a lump, guess what, bingo, stage 8. caught it early, don't play this game! I went through radiation. and i'm here to tell you, get yourself checked.
I would love to get more time for discussing things with the doctor, but the doctor won't spend time to answer multiple questions. It is always rushed to some extent. Currently, I go to the Mayo Clinic, where you get one hour appointment with the doctor, so plenty of time to ask questions, big difference than the standard Oncologist appointment.
I’m so glad that I found this video. My husband is newly diagnosed. Gleason score 9, PSA 8.11, spread to spine. His urologist said he had 3 to 5 years, even with hormone treatment. I asked my husband today if he wanted to get a second opinion, he just shrugged his shoulders. Hearing that your husband lived 13 years gives me hope, thank you for sharing. 😊
You definitely need to get a second opinion for your husband. Always...! Part of the deal. Best of luck!
How is he doing
how old is your husband?
3 to 5 years only? sounds like they are giving worse case scenario to me. I have stage 4 prostate cancer which spread to 4 locations in the bones, two of them in the spine, Gleason 9 and the PSA was 12.1. I only had urinary symptoms, never any bone pain or other issues. I 've been on hormone therapy for 10 months, PSA dropped to 0.47 by hormone therapy alone, Lupron and Abiraterone Acetate (Zytiga). No other cancer spread. Just got radiation treatment to the prostate and all 4 bones sites, with the hope of clearing up the visible existing cancer. Too early to see the results of the radiation treatment. Yes your husband needs to get another opinion. I think the grim outlook he was given was unfair.
@@timothyfay1209 How has the hormone therapy affected you? Muscle atrophy? Panic attacks?
As a loyal follower of Alex & Dr Scholz I am sorry to say that a conversation on "PSA 7,000 and 13 years" without touching on "How?" has been a disappointment. One would expect a few words, at least, on the type of treatment(s) followed and the benefits obtained.
One of the joys of attending the PCRI conferences in LA each year was catching up with Joel and Manarite.
Always inspirational!
Awesome.i was able to meet Joel onceHe is a true PC hero.now seeing Jan. She is also a hero. V Dan Kasper 10 years metastatic stage 4,
.8 years undetectable. Never give up hope, always keep the faith!!!
Totally agree. Good post! I spoke with Joel on the phone once, and everything he said was quite helpful and right on target.
This gives me some hope for my dad that was just told he has metastatic prostate cancer. Where did yours metastasize to??
I wish I had a hero like her there for me... She was probably the best medicine.
Thank goodness for the wife’s. I have Gleason 8 now in remission if it hadn’t been for my wife and investigating my disease and insisting I get a 2nd opinion I don’t think I would be here. She got me into Mayo and after 2 years of aggressive treatments I am doing well. I do feel I have a future. My own doctor at Mayo told me you have to advocate for your self. Thanks for your videos I have learned a lot about my disease. Keep up the good work.
Did your aggressive treatment Chemo?
I am curious... was it Dr.Eugene Kwan at Mayo? Thank you and good luck! Im in a similar situation and I am aiming at aggressive treatment.
Agreed@@janmanarite1820
Can you explain your treatment plan?
Stop the bullshit with the mayo clinic
Where is the story ? 13 years and very little information on how her husband progressed during those years and the treatment that was undertaken. That’s what I expected to be covered in the discussion.
Yes, same here. Just seemed like one big infomercial for her advocacy group.
What a great message - thank you PCRI
Thank you for sharing your husband's journey. Glad to hear about his 13 year's survival despite the presenceof metastatic disease. Please allow me to ask what his performance status was during that period of time. Was he very sick for an extended period of time? How much pain was involved?
@Jan Manarite Thank you for your response. Much appreciated. I've advanced prostate cancer. Pretty aggressive too. See what happens... God bless!
@Jan Manarite I use by by by no see CT
More Amazing information Alex... THANK YOU!
Thank you Jan,
This woman is a beast.
💪🙏🙏❤
I don't see how her husband recovered by his high psa. But she was focusing on her research work about prostate cancer talking to Dr. would be informative on her part., but what we want to know who had prostate cancer how we cercumbent hight Psa... Her research and study is not our ultimate concern but to recover our physical condition..
Outstanding!
Jan your great an advocate for the patient
Doctor I have a cyst 4 years ago, I used to have painful ejaculation, now for the last 2 months I have been having burning pain, I was undergoing urine infection treatment which did not stop and lastly there was extreme pain in prostrate, now there is pain in pelvis area towards the bone, I got regular CT and ultrasound done last month, there was no stone, it was just ecoli infection. Are my symptoms of cancer? The doctor does not tell anything other than stone, prostitis and uti, and the pain is increasing with sitting.
Ten years metastatic-currently .05 PSA
what did you do please ?
your Gleason score ?
G7
Hormone therapy put you in remission?
One of the causes of high PSA is aging, right now many doctors don't test PSA anymore
Very interesting and helpful..thanks
You’re husband lived 13 with metastatic cancer , what was his Quality of life like
I am curious to know what she thought about getting a biopsy. At one point should you get one.
When you want a diagnosis.
Can Someone provide the information on the podcast that was mentioned at the end of the interview? Thank you
Here you go! www.cancerabcs.org/podcasts
@@ThePCRI thank you
Such a valuable great interview!
If you do a remote with your Doc, you can record it.
Lucky man...
The PSI is not the very best test for prostate cancer. There is a newer more accurate (though more expensive) test called the 4Kscore test from Opko health that is available.
@Jan Manarite Am I wrong in thinking that it's a much more accurate (although more expensive) predictor of prostate cancer than a regular pcr? I read your link, and it's not clear to me why anyone wouldn't prefer the 4kscore, other than cost.
@Jan Manarite ok thanks
Psa was a blessing for me, psa 3.9 Gleason 9
Yes it was expensive. From Bio Reference it was $768.20 USD. After insurance deduction (April 2023) I paid $496.45. The test showed a huge drop in PSA and free PSA @ 17 which I determined to be good enough to put off biopsy....indefinitely. I paid more for my car's 30,000 mile automobile checkup. But keep in mind the man typing this is not convinced that 12 (maybe more?) needle jabs through his rectal wall into a gland he feels evolution has protectively hidden more than his own heart to extract tissue should be undertaken without an immense amount of consideration. Disclaimer: I also had a clean MRI. Still, given the huge decline from recommendations of surgery now to active surveillance gives me grave cause for concern. I'm also able to read and understand my results and make my own medical decisions. I realize some people (even some I consider friends) cant understand test results... but imo it's really not rocket science. I've heard "it is to us." (Us?) So I'm writing this for whatever it's worth to anyone, and also agree it's expensive.
Whether vegan diet helps to cure
this cancer?
There is no evidence that we are aware of that a vegan diet could cure prostate cancer once it is large enough to be clinically significant, but Dr. Scholz, who is in most of our videos, has noticed that some of his patients with advanced prostate cancer have gone on a vegan diet and then afterwards their previously rising PSA had slowed or stopped.
A rigorous study would be required to see if there was a connection there, but it seems to be a safe and reasonable thing to try, especially in those rare cases when men end up in urgent or desperate situations, for example, cases with distant metastasis and/or castrate resistance (checking with doctors, of course, to make sure a person is getting all of the nutrition they need considering any treatments they are going through or any other special consideration).
I don't think so. Instead, I feel adequate vitamin D levels need to be maintained, there is a blood test for Vitamin D levels. Vegan diet might be OK but the man must be cautious of too much Omega 6 which increases inflammation. It's easy on a vegan diet to intake too much Omega 6, so when going vegan make sure to get an adequate amount of Omega 3 as well, which can be tricky on a vegan diet because vegan dishes can be very high in Omega 6.. So although Dr Scholz who I respect immensely saw good results in patients going vegan, my highest PSA score over a 10 year period was when I went vegan.
My doctor says PSA tests are a waste of time. Too many false positives. PSA can be high for a multitude of reasons, and high numbers often cause knee jerk reactions and aggressive treatment that isn't necessary and can be harmful. Also, low PSA is no guarantee either. Often the most aggressive forms of the disease, the ones most likely to kill you, don't raise PSA at all.
Scary, but true!
The role of PSA can be overemphasized as it can be more of a check engine light but to say it's a waste of time is wrong.,
An indicator to get yourself checked
I would find another doctor, my psa was 3.9 Gleason 9 , if my doctor hasn’t pushed me to get it checked, I would be eat up with cancer, luckily we catch it is time
ALan Sech I had a psa of 3.8 up from a 2.8, when I went to my Female Doctor, she found a lump, guess what, bingo, stage 8. caught it early, don't play this game! I went through radiation. and i'm here to tell you, get yourself checked.
7000 ?
I would love to get more time for discussing things with the doctor, but the doctor won't spend time to answer multiple questions. It is always rushed to some extent. Currently, I go to the Mayo Clinic, where you get one hour appointment with the doctor, so plenty of time to ask questions, big difference than the standard Oncologist appointment.
Which state is the mayo clinic in?