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

Posted by pjw2 @pjw2, Sep 27, 2023

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.

Hang in there. I was diagnosed at 51 years old 6 years ago and have been through all the emotions off and on like a rollercoaster. It came back 10 months after surgery, then again later after radiation. A couple years later I did spot radiation at Mayo and have been on ADT for 7 of 18 months. But it was an awakening and I am happier and much more appreciative of life now than I was pre-diagnosis. While doing my best to take care of myself and I remain optimistic, I am also more accepting of whatever comes next.

If I could have done something differently, it would have been to go to one of the best healthcare treatment facilities after the reoccurrence post-surgery instead of using my local urologist. Now being at Mayo, I wish I had come here from the beginning. Its well worth the travel and costs to go to Rochester.

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@gkm

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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I agree. The Prostate Cancer Foundation has great information. I'm being treated for prostate cancer at Memorial Sloan Kettering and I have found that the PCF has solid info. They also offer two free booklets on prostate cancer.

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Hello there,
Although the PSA test is helpful and one of the main tools to help diagnose a possible case of Prostate Cancer etc. The PSA is not always indicative of cancer but a history of PSA levels can be. There are men who have a PSA of 1 or less that have Prostate Cancer as well as men with a PSA level of over 10-15 or higher that don’t.
The best and most accurate test to diagnose Prostate Cancer is to have a Prostate Biopsy performed. This will tell your Urologist how much cancer you have and to what severity it is.
However, a Urologist will usually have you complete a Prostate MRI prior to performing a biopsy to see if the results warrant performing a Prostate Biopsy. It’s not a very pleasant procedure and can produce post biopsy effects for up to two weeks following the procedure. However, it will provide the results of your GLEASON SCORE which will tell your Urologist how much cancer you have and how serious it is. This will determine if you need to take immediate action to remove the cancer through surgery or radiation or if you can utilize “Active Surveillance” because Prostate Cancer is usually a slow growth type of cancer and you may not require immediate treatment.
However, the above will provide you a “base line assessment” of your Prostate which will be quite beneficial in terms of measuring any future movement or increase in the level of cancer you might develop etc.
For example, I had been monitoring my PSA levels about every 3 months for a number of years because I was on “TRT,” TESTOSTERONE REPLACEMENT THERAPY due to my “HYPOGONADISM!”
over a short period of time my PSA levels continued to rise which was an indication that something might be going on regarding the development of a
possible case of Prostate Cancer. My MRI results indicated that a Prostate Biopsy should be performed. I had it done and it revealed that I in fact had already developed a sufficient state of Prostate Cancer which had already exceeded the “Active Surveillance or Watchful Waiting” stage and that I would need to treat my cancer through surgery or radiation in the very near future, (within a month or so).
Thankfully, it was still located within 100% of my Prostate and had not spread outside of my Prostate Bed. I chose to have the “RALP” procedure, (surgery), performed.
The Surgical and Radiation protocols have almost the identical efficacy and treatment results. There is no better or best choice. However, after you complete a sufficient amount of research and consultations with a surgeon and radiologist, you will be able to determine which form of treatment is best for you.
The best advice is not to wait. Have whatever appropriate tests need to be performed and find out where you stand so you can be sufficiently informed. You can only make the best and most appropriate treatment decisions if you have enough information and have taken the amount of time necessary to make the best decision for yourself.
Best wishes and good luck.

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Good morning. You've already received some great advice above from brothers who have been there. I'll just say to not get ahead of yourself. At this point, it could be your worst case thoughts but it could also be something unrelated to cancer so as they say, don't borrow trouble. Best advice is to seek the care and advice of a truly leading prostate cancer institute, even if it's not convenient, especially second opinions. The stakes are potentially too high to have missteps like misdiagnoses or incomplete treatment plans. Lastly, there is a well defined diagnosis tree with a PSA check and urology followup being at the very beginning. Working through the various steps, if called for, will take months before know specifically what you are dealing with. The good news is that treatments options for prostate cancer have advanced significantly over the the last few decades and there are a multitude of ongoing studies and trials that will sure to bring even more options.
Hang in there brother and keep the faith!

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A lot of great advice above. I would reiterate, definitely go to a center of excellence for prostate cancer. Even if your rising PSA is not cancer, a COE like Mayo-Rochester will follow processes that will lead to the best possible cancer. I have a friend that was working with a local urologist because of his rising PSA. The urologist immediately scheduled him for a biopsy, based on a digital rectal exam. Fortunately, he then went to Mayo-Rochester to better understand his situation. At Mayo, they did not want to immediately jump to a biopsy. They performed several other tests to make sure the lump within his prostate was something that should be biopsied, and not cause further contamination/harm. In the end, Mayo did perform a biopsy - the rising PSA and bump on his prostate was not cancer, but was from a prostate infection.

If your rising PSA is from prostate cancer, a center of excellence will be vital to your quality of life, for the rest of your life. Traven inconvenience is a minimal price to pay for medical competence.

My situation - 55, Gleason Score of 7 (4/3), radical prostatectomy. I went with a radical prostatectomy to ensure all known cancer was removed, facilitate full pathology of removed lymph nodes/prostate/seminal vesicles, allow for most options going forward. Personally, I am not an advocate of watchful waiting - I see this as waiting for cancer to grow and potentially metastasizing. If I know there is cancer growing in my body at a "relatively young" age, why in the world would I let it continue to grow (not a medical professional, so totally personal opinion).

Good luck and please remember - Doctors are only one input to your final decision. Your treatment plan should align with your personal life expectation, whatever your decision is.

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@florida11

Hang in there. I was diagnosed at 51 years old 6 years ago and have been through all the emotions off and on like a rollercoaster. It came back 10 months after surgery, then again later after radiation. A couple years later I did spot radiation at Mayo and have been on ADT for 7 of 18 months. But it was an awakening and I am happier and much more appreciative of life now than I was pre-diagnosis. While doing my best to take care of myself and I remain optimistic, I am also more accepting of whatever comes next.

If I could have done something differently, it would have been to go to one of the best healthcare treatment facilities after the reoccurrence post-surgery instead of using my local urologist. Now being at Mayo, I wish I had come here from the beginning. Its well worth the travel and costs to go to Rochester.

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Thank you for your comments, much appreciated!

To all whom have taken the time to comment (and to those I did not thank directly), thanks very much for your stories, your advice and your well wishes. Certainly I will be taking all of the advice and continue to educate myself. Best to all!!

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@pjl112

I agree. The Prostate Cancer Foundation has great information. I'm being treated for prostate cancer at Memorial Sloan Kettering and I have found that the PCF has solid info. They also offer two free booklets on prostate cancer.

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@pjl112, what treatments are you getting?

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@colleenyoung

@pjl112, what treatments are you getting?

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I finished a round of radiation in July - 26 treatments and I'm currently undergoing hormone therapy -ADT ( Lupron) which I started in June and will continue for 2 years.

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