Cancer scare, then relief due to testing results

Posted by kingfish54 @kingfish54, May 23 8:26am

Sorry to be so long winded.
Made it to 69 years with PSA between .4 and .6. Physical last year and PSA was 5.9, so GP sent me to Urologist in Dec. Took over a week for results to be posted. PSA was down to 1.8, but 4K score was giving me a 20+% of aggressive cancer. Scared now, as I was just given the report with no real explanation other than come back in May. PA says nothing to worry about. This is the point I joined this group.

I couldn't wait till May, and at urging of my wife, scheduled a "consult" with him in April to get him to explain what I was reading. Ran new PSA, which came back at 1.3.
He's dismissing the 4K score, saying the PSA is the "gold standard" and if it had only been at 1.3 originally, he wouldn't have even run the 4K test. He is guessing the elevated PSA was due to a very aggressive DRE by Primary Care doc before blood was pulled. Admittedly, it was probably the most aggressive one since I started testing.

I'm now scheduled for follow up PSA in August. If PSA elevates again, he says next steps would be MRI first before biopsy, which sounds good to me.

I guess the question is if this kind of yo-yoing diagnostic steps, incomplete communication, and emotional turmoil is common? Reading some of these threads, I'm nervous. Trying to balance stories of moving too fast to biopsy, or not fast enough.

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

I'm not trying to give you "direction" just wanted to comment on you having to wait from dec to may to get info. That is awful, too much time for our minds to run through way too many scary scenarios. You are not wondering if you have the flu. I went for pain in my leg, x-ray showed the cause of pain, my treatment has been running smoothly. I hope your journey runs smoother then it has. Best to you.

REPLY

Welcome to the forum.

Cancer is scary and you’re entitled to the emotions you felt and may feel in the future. As a current PCa patient I’ve gone through them anll and occasionally still go through the same fears and concerns.

There are numerous reasons that PSA can jump and a vigorous DRE could be responsible. I disagree with the opinion about the usefulness of the 4k test but then again I’m only a patient and not a doctor.

Having an MRi as the next step if you PSA spikes again sounds like a great plan to me.

Good luck, get educated, and remember to be your own advocate!

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I believe that your emotional turmoil is understandable, given the changing PSA levels and incomplete communication. You deserve much better and complete communication from your doctors.

I do recommend continuing to reading this forum, because there are some very experienced PC patients with great information. I also recommend looking at the online information at PCF.org and PCRI. org, along with Dr Patrick Walsh’s book, if only to know what questions to ask of your doctors and recommended next steps.

Given your stated historical PSA of 4-6 (or was it really 0.4-0.6 ng/ml?), anincreased PSA should always be a prompt for further checks. When a PSA value doubles, it should be checked more frequently to understand the doubling time, which is often more informative than the absolute value prior to treatment. Anything that physically agitates the prostate can temporarily increase blood test PSA values. Getting your blood tests performed by different laboratories can also affect the absolute value. Therefore, I believe that you will have better information after the next PSA test performed at the same laboratory.

I hope that your PSA value remains stable and that any future visits for this forum are only to update us on your good life. If your PSA continues to increase, this forum can provide you with detailed recommendation of next steps and questions to ask your doctors.

Best wishes

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I’m just commenting on my experience. Back in 2016 I was diagnosed with an enlarged prostrate and 4.3 PSA. My doctor recommended a MRI and a biopsy. Both came back negative. My PSA was on a roller coaster from 4.3 to eventually 7.7. I went to a new urologist who said my PSA was normal for the volume of my enlarged prostate. I went to ANOTHER urologist who recommended a MRI. It came back clean. After 7 months I decided to get another biopsy. Out of 14 cores two had cancer, including one of 3+4=7. I immediately elected to RP. The surgery went fine, including NO incontinence. However, my pathology report showed my cancer was actually 4+5=9 and at the capsule. So far my two post-operation PSA tests have shown < 0.01. Hope and pray for more of the same in the future. My point is this: do anything and everything you can to make sure you know your exact situation and what your treatment options are. I’m praying I dodged a bigger bullet but sometimes feel more could’ve/should’ve been done much earlier. Best wishes!

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@jsh327

I believe that your emotional turmoil is understandable, given the changing PSA levels and incomplete communication. You deserve much better and complete communication from your doctors.

I do recommend continuing to reading this forum, because there are some very experienced PC patients with great information. I also recommend looking at the online information at PCF.org and PCRI. org, along with Dr Patrick Walsh’s book, if only to know what questions to ask of your doctors and recommended next steps.

Given your stated historical PSA of 4-6 (or was it really 0.4-0.6 ng/ml?), anincreased PSA should always be a prompt for further checks. When a PSA value doubles, it should be checked more frequently to understand the doubling time, which is often more informative than the absolute value prior to treatment. Anything that physically agitates the prostate can temporarily increase blood test PSA values. Getting your blood tests performed by different laboratories can also affect the absolute value. Therefore, I believe that you will have better information after the next PSA test performed at the same laboratory.

I hope that your PSA value remains stable and that any future visits for this forum are only to update us on your good life. If your PSA continues to increase, this forum can provide you with detailed recommendation of next steps and questions to ask your doctors.

Best wishes

Jump to this post

Thanks for the response and advice! I've been watching this forum for a while, but couldn't quite understand a lot of what I'm reading. Especially given there appears to be many different approaches to treatment.
To answer your question, yes, for 15 years +/-, it's been .4 to .6. thus the red alert at seeing 5.9.

Example of the one of the more frustrating things was reading the caveats in the 4K score, written in a miniscule 4 pt font. Said Biotin (included in Vitamin B complex and some foods and drinks) could impact the score. Well crap, no one told me to stop taking Vit B before testing.

I would say that I don't see how you all can live with it, but 2020 taught us all that medicine and govt guidance is not infallible. It's in our hands to take control of our health

REPLY
@kingfish54

Thanks for the response and advice! I've been watching this forum for a while, but couldn't quite understand a lot of what I'm reading. Especially given there appears to be many different approaches to treatment.
To answer your question, yes, for 15 years +/-, it's been .4 to .6. thus the red alert at seeing 5.9.

Example of the one of the more frustrating things was reading the caveats in the 4K score, written in a miniscule 4 pt font. Said Biotin (included in Vitamin B complex and some foods and drinks) could impact the score. Well crap, no one told me to stop taking Vit B before testing.

I would say that I don't see how you all can live with it, but 2020 taught us all that medicine and govt guidance is not infallible. It's in our hands to take control of our health

Jump to this post

I appreciate your frustration. My greatest learning in my PC journey is to find the best possible doctors and information sources to provide you with the information to make optimal treatment decisions based on your specific condition. There is no one way and there are a lot of doctors and treatment centers that don't have the same level of expertise and Prostate Cancer Treatment Centers of Excellence, such as Mayo Clinic. This takes more time up front, but but ultimately saves you time and patience in the long run.

In my situation, I chose to read all the information I could find on PCF.org, PCRI.org, and read Dr. Patrick Walsh's book on prostate cancer, then I searched for expert experienced prostate cancer doctors and treatment centers. Only then did I believe that I knew the questions to ask, so that I could make decisions.

I'm not an expert on 4K scores or tests, but from all of the information that I've read, your medical team should have advised you to stop taking anything with biotin three days prior. Perhaps a data point that you may want to seek an opinion from another medical team/doctor.

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