Beginning of my journey with elevated PSA and possible cancer...

Posted by pjw2 @pjw2, Sep 27 8:18am

With a history of Prostate Cancer in my family (Father in mid-50’s) I have recently had 2 PSA tests, results of both in around 12, and have a meeting with a Urologist in a couple of weeks. I am 53 yrs old and 3 years ago my PSA was around 5. Shame on me for waiting 3 years between testing. Surfing the internet for information may not always be the best thing to do! I certainly am concerned with the elevated levels, hoping to learn from others that have experienced similar circumstances….thank you!

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

I recently had PSA 5.2 up from 3.6 over 14 months, No symptoms & DRE normal anatomy so MRI was ordered. MRI showed small pirad 4 area & biopsy yesterday.

I would ask your doctor to order an MRI & go from there. They wanted me to wait & follow PSA but I wanted to investigate.

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@lyricw

I recently had PSA 5.2 up from 3.6 over 14 months, No symptoms & DRE normal anatomy so MRI was ordered. MRI showed small pirad 4 area & biopsy yesterday.

I would ask your doctor to order an MRI & go from there. They wanted me to wait & follow PSA but I wanted to investigate.

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Thank you, that will certainly be a part of the discussion I have with the urologist.

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Good morning, pjw2, and welcome to a club no one wants to join. My own journey started almost a year ago with elevated PSA numbers. Repeat tests, Feb biopsy (one 3+3), scan (“that shadow shouldn’t be there), second biopsy (now 5 hits – three 3+3, one 3+4, one 4+3), negative bone scan, all culminating in a RALP 2 weeks ago.

As you’ll hear, there is no “one right answer” to your situation. Do your research. Dr. Patrick Walsh’s, Surviving Prostate Cancer, is the single best resource I found and I highly recommend getting a copy ASAP. Talk to friends and family who may have walked before you w PCa. My own analysis led me to the RALP and I have no regrets. The post-op report showed no evidence that the PCa had left my prostate. My surgeon is very talented and employed all the latest techniques which are making recovery palatable.

We don’t get to change the past, so let it go. We do get to drive our future, so take control. Find the best advisors you can access, ask a ton of questions, and read Walsh’s book. Your path will become clear to you along the way. Then, do the work. There will be no shortcuts to your recovery but your hard work will pay off!

I wish you the very best of luck. It’s no fun – sorry – but it’s not the end. Speaking for myself, it was wicked scary and I derailed myself emotionally a few times in the last year. That wasn’t helpful but, once I refocused on my facts, I knew what to do and it worked out just fine. Each day post-op is better than the last and I can see a bright day ahead!

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@fwintracy

Good morning, pjw2, and welcome to a club no one wants to join. My own journey started almost a year ago with elevated PSA numbers. Repeat tests, Feb biopsy (one 3+3), scan (“that shadow shouldn’t be there), second biopsy (now 5 hits – three 3+3, one 3+4, one 4+3), negative bone scan, all culminating in a RALP 2 weeks ago.

As you’ll hear, there is no “one right answer” to your situation. Do your research. Dr. Patrick Walsh’s, Surviving Prostate Cancer, is the single best resource I found and I highly recommend getting a copy ASAP. Talk to friends and family who may have walked before you w PCa. My own analysis led me to the RALP and I have no regrets. The post-op report showed no evidence that the PCa had left my prostate. My surgeon is very talented and employed all the latest techniques which are making recovery palatable.

We don’t get to change the past, so let it go. We do get to drive our future, so take control. Find the best advisors you can access, ask a ton of questions, and read Walsh’s book. Your path will become clear to you along the way. Then, do the work. There will be no shortcuts to your recovery but your hard work will pay off!

I wish you the very best of luck. It’s no fun – sorry – but it’s not the end. Speaking for myself, it was wicked scary and I derailed myself emotionally a few times in the last year. That wasn’t helpful but, once I refocused on my facts, I knew what to do and it worked out just fine. Each day post-op is better than the last and I can see a bright day ahead!

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Thank you very much Tracy for the information and the advice, I am most appreciative. I will be ordering the above noted by Dr. Walsh and learning all that I can! Hopefully armed with good information and advice, I can tackle what ever may come next.

I can only imagine the long road you have travelled and very happy to hear that you see the bright days ahead! Best of luck to you as well.

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We all have been there. We are all different and all cancers are different as well. You will read a lot of information confusing but bottom line you have to make your own decision as what is best for you. Some want to wait others (like me) wanted to address it immediately.

I was sill normal PSA (3.75) but had been rising. I have a great primary care doctor at Mayo Jacksonville and he did not like the steady rise of PSA levels over the years. He referred me to urologist who did DME and ordered an MRI with contrast and balloon. That test showed suspicious areas. MRI/Fusion biopsies confirmed prostrate cancer with a Gleason Score of 3+4=7 on the worst biopsy and a 3. However did a Decipher and came back low risk so my level was changed from intermediate to low risk. I also had a bone scan (negative), PSMA (negative) that ruled out cancer outside the prostrate which is what you want if you have to have prostrate cancer.

Do research from every major medical provider. Mayo Clinic, Cleveland Clinic, John Hopkins, etc. Then research Prostrate Cancer Support, NIH, American Cancer Society, and get a very wide perspective of treatments. Then make your decision on what is best for you based on your physical and mental needs and what you want personally.

Don't hesitate to asked question and feedback on MCC but remember we are not oncologist, radiologist, or urologist so we can and should only guide you on what we did and why. Everyone is different and also everyone different in what is important, their age, their health (both mental and physical) so what was decided by one may not be best for you. So research, get different consultations, different opinions, and make decisions based on a informed and knowledgeable patient.

Do know that outstanding progress is being made on treating prostrate cancer and many different treatments are available. Reach out that is why Mayo has Mayo Clinic Connect and the prostrate support group.

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Thank you jc76 for taking the time to share your thoughts, greatly appreciated. Great advice, and yes so many variables and factors to take into account! I do believe I have a lot of reading ahead of me!! Take care.

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pjw2: I had gleason 3+4. I had spaceoar to separate my rectum from the prostate. Decipher test from my Biopsy material showed my risk levels. I looked at all the areas listed below and decided on a specific type of photon radiation machine called the mridian linac from viewray (2 mm margins instead of 3-5 mm for other radiation types, auto shutoff and real time dynamic planning instead of fused images). I had 5 hypo fractional treatments. Proton was my second choice and many have been satisfied with that choice. Did not want removal of prostate and I understood radiation could be difficult later on if I wanted to remove my prostate because of biological re-occurrence later. I felt the risk of biological re-occurrence with prostate removal of 20-30% was not something I was comfortable with.

Your in the right place. Ask a lot of questions. Protect your healthy tissue as side affects are related to impact on healthy tissue. Take one day at a time. You will find your way.

Nccn.org
Many doctors follow their guidelines, and it is there for doctors and patients
Decipherbio.com
Takes a slice of the biopsy which helps evaluate aggressiveness and modes of treatments
Viewray.com
MRI/Radiation machine combination unit
Mevian.com
Proton therapy radiation machine
Globalroboticsinsititute.com
A doctor I looked into when I was considering prostate removal in Celebration Fl.
PCRI.org
The Prostate Cancer Research Institute helps men and caregivers research their prostate cancer treatment options

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@bens1

pjw2: I had gleason 3+4. I had spaceoar to separate my rectum from the prostate. Decipher test from my Biopsy material showed my risk levels. I looked at all the areas listed below and decided on a specific type of photon radiation machine called the mridian linac from viewray (2 mm margins instead of 3-5 mm for other radiation types, auto shutoff and real time dynamic planning instead of fused images). I had 5 hypo fractional treatments. Proton was my second choice and many have been satisfied with that choice. Did not want removal of prostate and I understood radiation could be difficult later on if I wanted to remove my prostate because of biological re-occurrence later. I felt the risk of biological re-occurrence with prostate removal of 20-30% was not something I was comfortable with.

Your in the right place. Ask a lot of questions. Protect your healthy tissue as side affects are related to impact on healthy tissue. Take one day at a time. You will find your way.

Nccn.org
Many doctors follow their guidelines, and it is there for doctors and patients
Decipherbio.com
Takes a slice of the biopsy which helps evaluate aggressiveness and modes of treatments
Viewray.com
MRI/Radiation machine combination unit
Mevian.com
Proton therapy radiation machine
Globalroboticsinsititute.com
A doctor I looked into when I was considering prostate removal in Celebration Fl.
PCRI.org
The Prostate Cancer Research Institute helps men and caregivers research their prostate cancer treatment options

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Thank you bens1…a theme I am learning is to research, consult, soak in the experiences of others and chart your own path. Very appreciative of all the comments and wish you the best.

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I would also recommend the Prostate Cancer Foundation. pcf.org as they have a lot of detailed information that you can download as well as monthly webinars.

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Don't beat yourself up cos you waited a bit. I did a similar thing. I carefully monitored my PSA from 5.75 (in 2016) through 12.5 and when it stopped around the 12 mark for a couple if years, kind of forgot about it for over a year. I had been getting a PSA test every 6 months up to that point. When I check again it had jumped to 17!

There are plenty of options for you still but I would get a biopsy and an MRI pretty soon if i were you. I was 55 or so when first diagnosed.

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