Conflicted/Confused, any Guidance/Advice out there?

@batsam10
Don't hesitate to asked questions. I did not know about MCC until I had started my treatments and sure would have helped if had know about it.

I chose Proton Pencil Beam radiation. It was 30 rounds over 6 weeks. I chose that based on my Mayo PCP recommending proton radiation to me. When he was a medical student he did research at UFPTI and was thorougly familiar with both Photon (which Mayo Jacksonville only offers) and proton which UFPTI has been doing since 2006 and has the lates models and treatments using proton.

The use of Space/Oar moves the rectum away from prostrate and lessons radiation damage. I think to know what is biggest difference is that Photon raditation enters and leaves throughout body. SBRT can direct the xray away from organs but the radiation travels out the body. With Proton there is less radiation going in AND it stops at prostrate and does not proceed out through other organs and/or body.

What is now done to lesson damage and radiation damage to other organs and tissues is the Space/Oar and drinking water (it helps move the bladder away). But a certain amount will still cause some damage as the oncologist/radiologist will try to treat the entire prostrate and margins to ensure all is treated and something is not missed by the biopsies.

Pencil beam proton radiation is even more precise. They used this on me to stay away from my ICD/Pacemaker and the wires as much as possible. My device was monitored and I received not radiation damage to it.

The reason I did not have hormone treatment which was my original treatment with radiation was the Decipher test revealed I had a low risk of metassing not intermediate which a 3+4=7 indicates.

Other than some slight fatique later in treatment, some reduction in urine flow, I had no side affects. If you are considering surgery for a 3+4=7 you should get a second opinion. Many have the surgery with complications but tolerable. Many do have complications. What is best to know that even with surgery if some of the prostrate cancer was not contained to prostrate you will still have cancer growing elsewhere and your PSA will rise.

You can always asked a second opinion on diagnosis and treatment opinions for you specifically by asking Mayo Clinic or Cleveland Clinic to do a second opinion. It can be done electronically between the providers. I do think regardless you should have the Decipher test, along with PSMA, and bone scan. Those three tests will give a good look to make sure if cancer is contained to prostrate only.

I think you stated you were in Boston area. And you are right some outstanding medical providers there. But even though my original tests and consultation were done at Mayo I did a second opinion/consultation with UFPTI and chose the proton radiation ONLY because Mayo Jacksonville did not offer proton only Photon

I am 70 years old ( as of October 23) my PSA had gone from 4.24 to 6.62 in 6 months so my urologist ordered a Parametric MRI and a 4K score blood test, MRI showed a 12mm lesion on the right side mid gland and came back Pirads 4, the 4K score was the maximum at 95% of clinically significant cancer. Sure enough the MRI Fusion perineal biopsy at Mayo Phoenix show 9 of 23 cores cancer, with 6 at 70% 4+3=7 and 3 cores 40% 3+4= 7 and 14 cores benign. I had the PSMA PET which confirmed the tumor on the right, but no other spread outside the prostate. I then had the Decipher test and it came back low risk at 0.38. I looked into surgery and met the Mayo surgeon, who said at my age and weight ( 250 lbs) I was not a good candidate for surgery and he reiterated that it was major surgery with serious life changing side effects and possible major complications. After learning all the details of the surgery, there is no way I would even consider it. My prostate was 50.4 cc about the size of a lemon, they cut the whole thing out and to make up the missing 2+ inches of the urethra they pull the bladder neck down and the urethra up shortening your penis 1-1.5 inches, the cancer returns in about 20 - 30% of surgeries and you need further treatment like radiation or God forbid ADT and hormones. Radiation also has serious side effects and Erectile Dysfunction in 20-40% of cases, plus possible bowel problems. I then looked into Focal Therapy, talked with my Mayo Urologist yesterday, was really depressed that even the focal therapies like Hifu have side effects, ED in 20% of cases, possible rectal fistula, urine leaking into the bowel and you need surgery and have to wear a bag, also you have to have a Foley catheter for 1-2 weeks. I am looking into the Tulsa Pro which they do in Rochester , not in Phoenix. Considering my relatively low PSA at 6.62, Low Risk Decipher score of 0.38, tumor grade T1c and small volume tumor less than 1cc or 2% of prostate volume, I am considering Active Surveillance, at 70 my PCa may never metastasize in the next 10 years and I would more than likely die from some other cause. The ProtecT study in the UK shows no difference in mortality with Intermedate Risk patients over 15 years . 1/3 had surgery, 1/3 had radiation and 1/3 Active surveillance. Quality of life is much more important to me than quantity, and in my own personal opinion, if I had the choice to either wear diapers the rest of my life, have ED and possible bowel problems, or be dead, I would rather be dead. I am now leaning toward no treatment of any kind ever, just metobolic therapy and Ketogenic diet to starve the cancer cells of Glucose, I does extensive research on this watched Dr. Thomas Seyfried you tube videos, also Dr Ken Bary and many others. While I understand that many with PCa are always talking about treatments on this support group, I have yet to see someone with4+3=7 talk about no medical treatment. If I had 3+3 or 3+4 I would definitely not have treatment of any kind

I am 70 years old ( as of October 23) my PSA had gone from 4.24 to 6.62 in 6 months so my urologist ordered a Parametric MRI and a 4K score blood test, MRI showed a 12mm lesion on the right side mid gland and came back Pirads 4, the 4K score was the maximum at 95% of clinically significant cancer. Sure enough the MRI Fusion perineal biopsy at Mayo Phoenix show 9 of 23 cores cancer, with 6 at 70% 4+3=7 and 3 cores 40% 3+4= 7 and 14 cores benign. I had the PSMA PET which confirmed the tumor on the right, but no other spread outside the prostate. I then had the Decipher test and it came back low risk at 0.38. I looked into surgery and met the Mayo surgeon, who said at my age and weight ( 250 lbs) I was not a good candidate for surgery and he reiterated that it was major surgery with serious life changing side effects and possible major complications. After learning all the details of the surgery, there is no way I would even consider it. My prostate was 50.4 cc about the size of a lemon, they cut the whole thing out and to make up the missing 2+ inches of the urethra they pull the bladder neck down and the urethra up shortening your penis 1-1.5 inches, the cancer returns in about 20 - 30% of surgeries and you need further treatment like radiation or God forbid ADT and hormones. Radiation also has serious side effects and Erectile Dysfunction in 20-40% of cases, plus possible bowel problems. I then looked into Focal Therapy, talked with my Mayo Urologist yesterday, was really depressed that even the focal therapies like Hifu have side effects, ED in 20% of cases, possible rectal fistula, urine leaking into the bowel and you need surgery and have to wear a bag, also you have to have a Foley catheter for 1-2 weeks. I am looking into the Tulsa Pro which they do in Rochester , not in Phoenix. Considering my relatively low PSA at 6.62, Low Risk Decipher score of 0.38, tumor grade T1c and small volume tumor less than 1cc or 2% of prostate volume, I am considering Active Surveillance, at 70 my PCa may never metastasize in the next 10 years and I would more than likely die from some other cause. The ProtecT study in the UK shows no difference in mortality with Intermedate Risk patients over 15 years . 1/3 had surgery, 1/3 had radiation and 1/3 Active surveillance. Quality of life is much more important to me than quantity, and in my own personal opinion, if I had the choice to either wear diapers the rest of my life, have ED and possible bowel problems, or be dead, I would rather be dead. I am now leaning toward no treatment of any kind ever, just metobolic therapy and Ketogenic diet to starve the cancer cells of Glucose, I does extensive research on this watched Dr. Thomas Seyfried you tube videos, also Dr Ken Bary and many others. While I understand that many with PCa are always talking about treatments on this support group, I have yet to see someone with4+3=7 talk about no medical treatment. If I had 3+3 or 3+4 I would definitely not have treatment of any kind

Thanks for sharing your story. And I’m sorry to hear what you are going through. I will be bringing the information you shared to my next appointment this week. Most everything I have read says both treatments can cause ED but the surgery is immediate. The only thing I’m thinking with surgery is it seems like you have a better shot of getting all the cancer out if it’s contained.

Batsam10, I was about 5 years younger than you when I was first diagnosed with Gleason Score 7 (4+3) prostate cancer in 2022. I did all the research and ultimately decided on a robotic prostatectomy at a center of excellence (Mayo-Rochester, MN). There are so many opinions surrounding treatment plans, but for me, I focused on the data, common sense, and my life goals. My main goal was to live 30+ additional years prostate cancer free, and be available to my wife, son, parents, siblings, etc... I didn't want to have any complications or side effects from the surgery but this was not an absolute need. In the end - There were no complications with surgery and I have full continence and erectile function. I realize there is a 20% chance of biochemical reoccurrence, but thus far it PSA is undetectable - Praying this will be the case for many years to come. There are so many horror stories out there surrounding radical prostatectomies, but based on my research and personal experience, the outcome you have is directly related to your up front research in choosing the best possible center of excellence and the most qualified surgeon at that center of excellence. Then, you must do the post operation therapy that is prescribed.

For myself, leaving the cancer inside of me was not an option. I wanted a procedure that allowed for a complete understanding of the cancer progression (post op pathology) and did not want to rely on imperfect imaging tools to direct the treatment. Also, I had an uncle (only other person in my extended family that had PC) die from prostate cancer. Unfortunately, his prostate cancer was left untreated too long, spreading to his bones. So many men say they don't want treatment because of a possible quality of life reduction. Well, after watching my uncle slowly and painfully die from metastasized prostate cancer, I was quite certain that was not the quality of life I wanted.

At you relatively young age, I would definitely get treated. There are so many treatment plans out there and you need to pick the one that aligns best with your personal life expectations. If people tell you there is only one option, you probably want to ignore there opinion. For myself, I would definitely recommend a robotically assisted radical prostatectomy at a center of excellence. However, this is based on my person life expectations and experiences.

Good luck with your decision!!

Jim

Hey buddy, the truly unfortunate thing is that NO testing can guarantee that it is defined only to the prostate. Even ONE cell that gets out can set up shop and start the whole thing all over again.
I had an MRI and a PET before my surgery ( had to pay 7K out of pocket for the latter) and both showed no spread. My surgical pathology slides showed no spread and negative margins….yet here I am facing recurrence.
The only thing surgery provides as initial treatment is to be able to have radiation and ADT if it recurs. VERY difficult and ill-advised to have surgery after radiation.
So that greatly impacted my decision and I am glad/sad with my choice. And surgeons and radiologists both have bad days so the human factor is enormous….It’s gut wrenching for sure!!!

Batsam10, I was about 5 years younger than you when I was first diagnosed with Gleason Score 7 (4+3) prostate cancer in 2022. I did all the research and ultimately decided on a robotic prostatectomy at a center of excellence (Mayo-Rochester, MN). There are so many opinions surrounding treatment plans, but for me, I focused on the data, common sense, and my life goals. My main goal was to live 30+ additional years prostate cancer free, and be available to my wife, son, parents, siblings, etc... I didn't want to have any complications or side effects from the surgery but this was not an absolute need. In the end - There were no complications with surgery and I have full continence and erectile function. I realize there is a 20% chance of biochemical reoccurrence, but thus far it PSA is undetectable - Praying this will be the case for many years to come. There are so many horror stories out there surrounding radical prostatectomies, but based on my research and personal experience, the outcome you have is directly related to your up front research in choosing the best possible center of excellence and the most qualified surgeon at that center of excellence. Then, you must do the post operation therapy that is prescribed.

For myself, leaving the cancer inside of me was not an option. I wanted a procedure that allowed for a complete understanding of the cancer progression (post op pathology) and did not want to rely on imperfect imaging tools to direct the treatment. Also, I had an uncle (only other person in my extended family that had PC) die from prostate cancer. Unfortunately, his prostate cancer was left untreated too long, spreading to his bones. So many men say they don't want treatment because of a possible quality of life reduction. Well, after watching my uncle slowly and painfully die from metastasized prostate cancer, I was quite certain that was not the quality of life I wanted.

At you relatively young age, I would definitely get treated. There are so many treatment plans out there and you need to pick the one that aligns best with your personal life expectations. If people tell you there is only one option, you probably want to ignore there opinion. For myself, I would definitely recommend a robotically assisted radical prostatectomy at a center of excellence. However, this is based on my person life expectations and experiences.

Good luck with your decision!!

Jim

I'm older than you (just turned 69). My diagnosis is very similar to yours. I don't want side effects either yet I want the cancer eliminated. My doctor recommended surgery. I'm not going that route. I've spent many hours on research. My first choice was MRIdian which is radiation guided while looking at real time MRI. Unfortunately, the manufacturer went out of business but there are still some places using MRIdian. But I moved on to the "Tulsa Pro" procedure. No cutting, no radiation. This is cutting edge but not a super long track record. Check it out. There is a great video discussion on YouTube. Pretty much everything says insurance and medicare won't cover it. I did read conflicting views saying that there are temporary Medicare numbers that can be used to cover it and that it will be covered by Medicare the 1st. of Jan 2025. I don't know if any of these opinions are correct. Worst case scenario is I will pay out of pocket. The procedure runs between $30 and $40k depending on where you have it done and your particular case. I have the money in an IRA, but that's about all I have. I'm convinced that the Tulsa Pro procedure is my best choice. You have time, luckily. I'll be having a consultation with UCLA after I have an MRI done next month. Best of luck to you, do your research.