My PSA Has doubled. What now?

Posted by jayhall @jayhall, Sep 19 8:43am

In the Spring I had a PSA of 6. I just got my PSA back from my PCP and it's almost 12 and it's doubled in less than 6 months. I had a biopsy in the spring and it was negative for PC . I have my 6 month appointment with my Urologist in less than a month. I've done some searching and my PSA could be from BPH. I've had BPH for over 10 years. I'm freaked out about my PSA Score and on the verge of a panic attack about this. Has anyone else had a PSA this high due to BPH? What did your urologist put you on to reduce it?

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Two time PCa patient here weighing in with non-medical advice and thoughts that might be of some guidance help.

From what I understand and my own experience (twice), a short doubling time is most often associated with aggressive prostate cancer. My first biopsy missed significant high risk cancer and as a result I now am dealing with stage 4 locally metastatic PCa.

Here are some suggestions based on my experience:

Consider asking for an MRI with contrast ASAP. As long as the MRI is done with a 3 Tesla MRI at a center of excellence, the MRI should be able to identify suspicious lesions and generate a PI-RADS score assessing the probability of prostate cancer. If a lesion is identified on the MRI ask for an-MRI guided biopsy, not a random biopsy or simply an ultrasound guided biopsy. I’ve read that both miss significant disease 1/3 of the time.

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A friend of ours had a PSA of 50 and never had prostate cancer. He died years later of a completely different cancer that had nothing to do with prostate cancer.

His prostate was huge, but biopsies never showed anything.

Never heard of him being diagnosed with BPH, he hated going to the doctors so probably never had the opportunity to be diagnosed. He died within months of being diagnosed with lymphoma because he refused to see doctors even though he was sick for years.

Keep up routine checks, but you may not be a prostate cancer patient.

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I ve had PC sine 2021. 2/2/22 the urologist took 13 biopsies at various locations. They found aggressive Gleason 9/10 spots all over. The PET scan showed metasticized to the two pelvic lymph nodes. I m still here today. Treated with a butt shot every three months and two pills to take daily- called ADT. My psa today is < .01 checked quarterly. Relax guy. You probably need more biopsy’s or MRI as the other fellow mentioned. Some people have it in their bones. All this is treatable. Go get the biopsy/ PET SCAN/ MRI done , whatever the urologist / radiation oncologist/ medical oncologist prescribes. If cancerous you may need a genetic test too to analyze the gene- I guess it’s called this. If you get radiation or ADT drugs: expect the PSA to drop very rapidly as mine did- Hope this helps ya. I m 75 and doing fine, just fatigued a lot.

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@jayhall
The problem with biopsies is they only give results from where they are taken. The do not represent what is present in every cell of the prostrate. So a biopsy that is negative does not mean you don't have cancer in an area that a biopsy was not taken.

It is why many R/O treat the entire prostrate with radiation with the stated facts (from R/O) that they want to treat all the cancer and the chance of some remaining that the biopsies misssed is quite high.

Good luck but I would asked for another MRI with contrast and biopsies.

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@jeffmarc

A friend of ours had a PSA of 50 and never had prostate cancer. He died years later of a completely different cancer that had nothing to do with prostate cancer.

His prostate was huge, but biopsies never showed anything.

Never heard of him being diagnosed with BPH, he hated going to the doctors so probably never had the opportunity to be diagnosed. He died within months of being diagnosed with lymphoma because he refused to see doctors even though he was sick for years.

Keep up routine checks, but you may not be a prostate cancer patient.

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Absolutely - my friend’s PSA was 75…no cancer. BUT, as you and everyone has echoed, be SURE with every available tool in the box.

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Thanks for all the comments. I feel a little better about this. Next week I have my annual physical, followed by my 6 month check up with the urologist. I'm certain that both of those visits will be mostly about treatment options etc. I'm going to see if I can get some anxiety meds to help me deal with this. I rarely ever cry, but when I do it's usually due to frustration. I've been on the verge of tears about this and since the spring it's been a significant source of stress. Being 60 just stinks.

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Well, as others have said, use every tool in the kitbag...

Those could include:

DRE
Imaging
MRI/CT
Multi-Parametric MRI
C11 Choline
PSMA

You may get pushback from your insurance but hopefully not your medical team.

I listed them generally in the order of sensitivity, from lower to higher.

It is possible that imaging could answer the question, do I have PCa, if so, where is it...that could inform any decisions.

I am not sure I would discuss treatment options until I had the clinical data to do so.

Many will say a standard TRUS biopsy is perhaps not enough to inform decision making, rather an MRI guide biopsy may be better and certainly imaging.

If you discuss treatment options at your appointment, consider that you may not need to make a decision then and there. 2nd opinions are an options, consults with radiologists and oncologists too.

At some point, read the NCCN guidelines for patients so that you can have a dialogue with your medical team and share in the decision making vice a monologue.

Kevin

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In 2005 my PSA went from 3 to 4 in 9 months. My PCP said get a biopsy. It was positive, so I got robotic prostatectomy and I’m cured. My PSA has been undetectable ever since. PTL!

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An additional angle...

There's a pretty good chance you have prostate cancer and there are lots of suggestion here to confirm that.

My suggestion is to act like it has been confirmed already, maybe assume some best case scenarios, and begin the process of deciding what treatment path you are going to follow. It's not easy to get the bad news AND be expected to be an instant PC expert. Do your research now without that pressure, actually make an initial choice, and if the bad news comes at least you will already know what you're going to do (with adjustments as necessary).

There is enough info out there for you to do it without the (often gappy) Doctor input. I turned down surgery and went for 2 years ADT (4 months in, mostly sucks but doable so far) + 28 x IMRT (just completed - logistically sucks but doable). I am currently very happy with the outcome.

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@jayhall

Thanks for all the comments. I feel a little better about this. Next week I have my annual physical, followed by my 6 month check up with the urologist. I'm certain that both of those visits will be mostly about treatment options etc. I'm going to see if I can get some anxiety meds to help me deal with this. I rarely ever cry, but when I do it's usually due to frustration. I've been on the verge of tears about this and since the spring it's been a significant source of stress. Being 60 just stinks.

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You'll be fine! Smart to practice the crying now so you'll be ready for the new, sensitive you when you're on ADT. Who knew you could cry when driving just because you'd become terrified that you were going to move on the radiation table! Back when this all started I got buPROPion (Wellbutrin XL) before I really felt I needed it and I'm getting through this. Hang in! 59 sucks too!

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