Prostate cancer diagnosis

[Rawaan]

Subject: Seeking Advice and Support Regarding Prostate Cancer Diagnosis and TRT Alternatives

Dear Community Members,
It has been quite some time since I last reached out or visited this platform, but I find myself in need of your help and guidance now more than ever. Allow me to share my story and current situation in hopes of receiving valuable insights and support from this knowledgeable community.

Since 2012, I have been undergoing Testosterone Replacement Therapy (TRT), initially starting with test gel, then transitioning to Sustanon 250, and eventually Nebido 400ml every 10 weeks. However, around 2014, I began experiencing concerning elevations in my PSA, hemoglobin, and hematocrit levels. Despite this, it wasn't until 2016/17 that my PSA reached a level of 3, prompting a referral to a urologist.
Over the years, my PSA fluctuated between 4-7, leading to repeated discussions about undergoing a biopsy. However, I opted for an MRI scan instead, which consistently showed no abnormalities until 2021 when it revealed benign prostatic hyperplasia (BPH). Despite this finding, my PSA continued to rise, reaching 14.15 last year, ultimately resulting in an urgent referral back to a urologist.
Subsequent MRI scans indicated a lesion pirade 4, and a biopsy confirmed the presence of prostate cancer with a Gleason score of 3+4: 7 (grade 2). The urologist recommended a prostatectomy, but I hesitated to rush into such a life-altering decision. Instead, I embarked on a journey to educate myself about the implications and alternatives associated with prostate cancer treatment.
While I recognize the seriousness of my diagnosis, I am grappling with the uncertainty of sacrificing my quality of life for a potentially marginal increase in lifespan, with no guarantee that the cancer will not recur. Furthermore, the suspension of TRT has left me concerned about its impact on my overall well-being, as I believe it contributes to my strength and vitality.
In addition to exploring alternative treatments and lifestyle modifications, I sought a second opinion to ascertain whether the result was indeed correct and requested genetic testing to assess the aggressiveness of my cancer. Unfortunately, both requests were declined, leaving me feeling uncertain about the accuracy of my diagnosis and the best course of action moving forward.
I am reaching out to this community in search of advice, support, and perhaps alternative perspectives that could shed light on my situation. Any insights, experiences, or recommendations regarding prostate cancer management, TRT alternatives, or avenues for obtaining a second opinion or genetic testing would be immensely appreciated.
Thank you for taking the time to read my story and for any assistance you can offer in navigating this challenging chapter of my life.



Sincerely,

 

[Blackhawk]

1: 3+4 is low grade. 4+3 is more serious. Depending on other factors you may still be good for watch and wait.

2: PIRADS 4 is serious, but may be able to be treated by focal therapy. There are many methods of focal therapy. One of the biggest factors for this is whether the lesion is well contained in the prostate or right on the margin. I too had PIRADS 4 lesion, well contained in the transition zone so was a candidate for focal treatment

3: If I was turned down on more advanced testing or not receiving adequate answers to serious questions I would keep looking for other doctors/second opinions.

4: It may also matter where you are and how much money you have to spend on appropriate care. Many urologists are attached to their own equipment and limited to their own personal training. There have been incredible advances in care yet there are Uros who just want to do radical prostatectomy for nearly everything. I could not get the care and kind of treatment I really needed inm y location and traveled 2000 miles and paid out of pocket for the right treatment. It is a lot of money, but like for you it meant my quality of life for the rest of my life.

Also if you havent already, try the inspire prostate cancer forum: Us TOO Prostate Cancer - Inspire

Ah I see you are in the UK. Problematic within the public health system. Have a look at ALTA Klinik - Radiology - Prostate Diagnostics - Prevention You can send your MRI images to them for review as a first step/second opinion.

 

[Systemlord]

Stopping TRT has elevated your risks, because low Free T increases the likelihood of high risk, high volume disease, in other words, more aggressive prostate cancer and likelihood of reoccurrence.

Impact of Low Free Testosterone on Prostate Cancer

www.excelmale.com

 

[J2048b]

my bil cannot go back onto trt due to prostate cancer.. test feeds it… ask how he knows he tried to go back on low dose trt… cancer came back super fast and went everywhere… he can no longer use trt…

 

[Systemlord]

ask how he knows he tried to go back on low dose trt… cancer came back super fast and went everywhere… he can no longer use trt…

That’s what we call a conclusion, no proof TRT caused cancer to spread. For all we know the cancer had already spread and wasn’t detectable until after he went back on the low-dose TRT.

 

[J2048b]

That’s what we call a conclusion, no proof TRT caused cancer to spread. For all we know the cancer had already spread and wasn’t detectable until after he went back on the low-dose TRT.

Believe what u want, the doctors have their conclusions…test feeds cancer… point blank… why do guys need to drop their total test almost to 0 when they have prostate cancer? Because test feeds cancer… in order to remove that cancer and once its gone thru chemo or any other treatment ur playin games by reintroducing test from outside sources…

 

[J2048b]

U can try and use test boosting supps from my understanding, but will need to tell ur doctors what ur on and keep a close eye on it all

 

[Blackhawk]

Neither of the arguments for or against use of TRT with prostate cancer are unfailingly correct.

It seems pretty well proven that TRT does not CAUSE prostate cancer. Morgentaler debunked this well, and the data supports this

However, Androgen Deprivation Therapy (ADT) remains a standard treatment for cases of HORMONE (ANDROGEN) SENSITIVE prostate cancer. Some prostate cancers do regress when deprived of androgens, but not all prostate cancer responds the same to androgens. Prostate cancer comes in varying flavors/genetics etc.

And then commonly after ADT works for a while the prostate cancer becomes refactory to ADT, i.e. ADT no longer works, delightfully called "castration resistant" and this is when they sometimes try alternating Exogenous TRT with ADT. These techniques are largely still in the research phase.

Once someone actually has prostate cancer, the issue is not 100% yes or no for TRT.

 

[J2048b]

Neither of the arguments for or against use of TRT with prostate cancer are unfailingly correct.

It seems pretty well proven that TRT does not CAUSE prostate cancer. Morgentaler debunked this well, and the data supports this

However, Androgen Deprivation Therapy (ADT) remains a standard treatment for cases of HORMONE (ANDROGEN) SENSITIVE prostate cancer. Some prostate cancers do regress when deprived of androgens, but not all prostate cancer responds the same to androgens. Prostate cancer comes in varying flavors/genetics etc.

And then commonly after ADT works for a while the prostate cancer becomes refactory to ADT, i.e. ADT no longer works, delightfully called "castration resistant" and this is when they sometimes try alternating Exogenous TRT with ADT. These techniques are largely still in the research phase.

Once someone actually has prostate cancer, the issue is not 100% yes or no for TRT.

Yes… samsies… no 2 people are the same… all i have to go off of is my bil, so anything could or couldnt happen… its all up to the doc and the patient and how they respond…

 

[Rawaan]

1: 3+4 is low grade. 4+3 is more serious. Depending on other factors you may still be good for watch and wait.

2: PIRADS 4 is serious, but may be able to be treated by focal therapy. There are many methods of focal therapy. One of the biggest factors for this is whether the lesion is well contained in the prostate or right on the margin. I too had PIRADS 4 lesion, well contained in the transition zone so was a candidate for focal treatment

3: If I was turned down on more advanced testing or not receiving adequate answers to serious questions I would keep looking for other doctors/second opinions.

4: It may also matter where you are and how much money you have to spend on appropriate care. Many urologists are attached to their own equipment and limited to their own personal training. There have been incredible advances in care yet there are Uros who just want to do radical prostatectomy for nearly everything. I could not get the care and kind of treatment I really needed inm y location and traveled 2000 miles and paid out of pocket for the right treatment. It is a lot of money, but like for you it meant my quality of life for the rest of my life.

Also if you havent already, try the inspire prostate cancer forum: Us TOO Prostate Cancer - Inspire

Ah I see you are in the UK. Problematic within the public health system. Have a look at ALTA Klinik - Radiology - Prostate Diagnostics - Prevention You can send your MRI images to them for review as a first step/second opinion.

Thanks for your help, definitely, I’ll do that.

 

[Rawaan]

Stopping TRT has elevated your risks, because low Free T increases the likelihood of high risk, high volume disease, in other words, more aggressive prostate cancer and likelihood of reoccurrence.

Impact of Low Free Testosterone on Prostate Cancer

www.excelmale.com

View attachment 42998

I agree with you, stopping TRT might cause me more problems. However, my GP has suspended my TRT due to a Urologist's advice. Regardless, I’ll keep using it.

 

[Systemlord]

I agree with you, stopping TRT might cause me more problems. However, my GP has suspended my TRT due to a Urologist's advice. Regardless, I’ll keep using it.

Not all urologists are created equal.

 

[tcmi]

I had 3+4 as well. Chose robotic prostatectomy at Memorial Sloan Kettering in NYC. Excellent surgeon, excellent outcome. My surgeon allowed me to remain on TRT until week before surgery. I was allowed to resume TRT 6 weeks post surgery after an undetectable PSA test. I remain cancer free 2.5 years later and have 95% odds remaining cancer free the rest of my life. Many different treatment options to consider, but if you plan to resume TRT there is nothing better post-prostatectomy than the assurance of a sensitive PSA test - it’s either undetectable or you know you’ve got a recurrence. You don’t have that with any other treatment. Surgeon skill matters; I’ve got nearly no side effects.

 

[madman]

Subject: Seeking Advice and Support Regarding Prostate Cancer Diagnosis and TRT Alternatives

Dear Community Members,
It has been quite some time since I last reached out or visited this platform, but I find myself in need of your help and guidance now more than ever. Allow me to share my story and current situation in hopes of receiving valuable insights and support from this knowledgeable community.

Since 2012, I have been undergoing Testosterone Replacement Therapy (TRT), initially starting with test gel, then transitioning to Sustanon 250, and eventually Nebido 400ml every 10 weeks. However, around 2014, I began experiencing concerning elevations in my PSA, hemoglobin, and hematocrit levels. Despite this, it wasn't until 2016/17 that my PSA reached a level of 3, prompting a referral to a urologist.
Over the years, my PSA fluctuated between 4-7, leading to repeated discussions about undergoing a biopsy. However, I opted for an MRI scan instead, which consistently showed no abnormalities until 2021 when it revealed benign prostatic hyperplasia (BPH). Despite this finding, my PSA continued to rise, reaching 14.15 last year, ultimately resulting in an urgent referral back to a urologist.
Subsequent MRI scans indicated a lesion pirade 4, and a biopsy confirmed the presence of prostate cancer with a Gleason score of 3+4: 7 (grade 2). The urologist recommended a prostatectomy, but I hesitated to rush into such a life-altering decision. Instead, I embarked on a journey to educate myself about the implications and alternatives associated with prostate cancer treatment.
While I recognize the seriousness of my diagnosis, I am grappling with the uncertainty of sacrificing my quality of life for a potentially marginal increase in lifespan, with no guarantee that the cancer will not recur. Furthermore, the suspension of TRT has left me concerned about its impact on my overall well-being, as I believe it contributes to my strength and vitality.
In addition to exploring alternative treatments and lifestyle modifications, I sought a second opinion to ascertain whether the result was indeed correct and requested genetic testing to assess the aggressiveness of my cancer. Unfortunately, both requests were declined, leaving me feeling uncertain about the accuracy of my diagnosis and the best course of action moving forward.
I am reaching out to this community in search of advice, support, and perhaps alternative perspectives that could shed light on my situation. Any insights, experiences, or recommendations regarding prostate cancer management, TRT alternatives, or avenues for obtaining a second opinion or genetic testing would be immensely appreciated.
Thank you for taking the time to read my story and for any assistance you can offer in navigating this challenging chapter of my life.



Sincerely,

If you lived in the US I would recommend seeking someone out of Memorial Sloan Kettering Cancer Center (MSKCC).

From Blackhawks reply post #2!

3: If I was turned down on more advanced testing or not receiving adequate answers to serious questions I would keep looking for other doctors/second opinions.

Link Between Testosterone And The Prostate

*7:00-13:20 (DHT, estradiol, 5ARIs, AIs) On this episode of the Dr. Geo podcast, we have a special guest, Dr. Mohit Khera, a renowned urologist and professor in the Scott Department of Urology at Baylor College of Medicine. He holds the F. Brantley Scott Chair in Urology and has extensive...

www.excelmale.com

Pay close attention @39:09


33:33 Testosterone…PSA will go up almost inevitably
39:01 The majority of prostate cancer is clinically insignificant, meaning that they will die from something else.
39:09 Huge movement of patients now on active surveillance. And they have low grade cancer, low volume cancer
40:49 Testosterone does not increase the risk of prostate cancer.

TRT and the Prostate

Testosterone Treatment and the Risk of Prostate Adverse Events (2022) Jason A. Levy, DO, MS, Arthur L. Burnett, MD, MBA, Adrian S. Dobs, MD, MHS INTRODUCTION Definition Hypogonadism is a clinical syndrome that results from failure of the testis to produce physiologic concentrations of...

www.excelmale.com

 

[Sergel]

I take Iodine for prevention, does anyone know if Iodine can be helpful when cancer has shown its ugly head? (search dr brownstein)

 

[Rawaan]

I had 3+4 as well. Chose robotic prostatectomy at Memorial Sloan Kettering in NYC. Excellent surgeon, excellent outcome. My surgeon allowed me to remain on TRT until week before surgery. I was allowed to resume TRT 6 weeks post surgery after an undetectable PSA test. I remain cancer free 2.5 years later and have 95% odds remaining cancer free the rest of my life. Many different treatment options to consider, but if you plan to resume TRT there is nothing better post-prostatectomy than the assurance of a sensitive PSA test - it’s either undetectable or you know you’ve got a recurrence. You don’t have that with any other treatment. Surgeon skill matters; I’ve got nearly no side effects.

Glad all went well with your treatment, however, at this stage, prostatectomy is not something I’m thinking of, I will request a second or if necessary third opinion on my situation.
There is a lot missing now in my feelings to rush for such treatment with all its life-changing consequences.