PSA 170 waiting to see Urologist

I hope it's okay to use the forum here to sort of dump everything in my brain...
My dad is 72, he had me rather late in life, I'm 27 now. He has some sort of undiagnosed learning disability or learning block. He lives alone and "seems fine" for a lack of more PC wording, but his reading/writing level is perhaps around 2nd grade. He's been single since he divorced my mom ~25 years ago so since becoming an adult I've attended many of his doctors visits with him as he needs help to read paper work and fill it out.
I just say this to explain why I'm so involved in his medical care. Anyway...

about 4 months ago he asked me to make him a doctors appointment because he was losing sleep due to peeing so much at night that he isn't feeling rested. He hates going to the doctor so I knew this must be really bothering him. He's always seemed to pee frequently. Granted, by the time I was old enough to really form memories he would have been in his 50's already. But as far back as I can remember he's woken up every night to pee. He often stops on the side of the road to pee before getting to town (We live in a rural area, ~20 mins away). He likes to go fishing but will take a bottle to pee in if he plans to be out on the lake more than an hour or two, etc. I just never thought much about it because he's always been that way...but it seemed to get worse quickly for it to disrupt his sleep suddenly. She says almost all men in their 70s have enlarged prostates so that's probably the cause, and with him having had a somewhat overactive bladder for years its probably good reason to think it's just slowly growing. She says there is a small chance it may be prostate cancer and we can screen for it if he wants, but even if he has it, it usually progresses so slowly that it wouldn't impact the end of his life given that he is already 72. He passes on being screened and goes on Flowmax. It fixes the constant peeing.

A couple weeks ago he went to sit down in a lawn chair that had a rip in the fabric that he was unaware of. His weight caused it to rip through, he hit the ground. We go in mostly to request an x-ray as he stays very sore for several days so we worry about a fracture or something. While there he tells her he's had severe constipation and taking miralax for several days hasn't done anything for him. I don't fully understand why but she asks if he would like a blood test to check for hep c, and one to check his prostate health. I assumed they were just tests he was due for or something. He agrees. At this appointment she says he's lost about 18 pounds since his last visit (4 months prior) but he had switched to a low carb diet, and he had been overweight before so we think this is good news.

Today they call saying they are putting in a referral with a urologist because his PSA came back at 170 which is really unusual, that they expect it to be under 5. I ask what this means and she says 'oh, it could be different things. The urologist will call within a week to schedule you an appointment.' I felt like she blew off my question, probably because she just isn't allowed to seriously answer. So of course I google what a psa of 170 means...and find a study that says with a PSA of 100 out of 1300+ people, 100% of them have prostate cancer. So I of course take that to mean he certainly has prostate cancer...and I realize from further searching that even in those with prostate cancer, a PSA of 170 at time of diagnosis is sky high. I read something about PSA level being often linked to the more aggressive forms....

So I have up to a week before we can even schedule an appointment with the urologist and meanwhile I'm just stuck with reading the internet and making assumptions.

Thank you for letting me have a place to spell this out and get it off my chest.

Hi Emmylu,

Welcome, this is significant, and yes, it's likely he has PCa--most american men his age have diagnoseable PC. A PSA of 170 is worrysome, to be sure. The urologist will most likely want to do a biopsy--its unpleasant but manageable. It's only with a biopsy, and a pathologist looking at the cells under a microscope, that it can be diagnosed.

I can see you're accustomed to being with him at the doctor's office, for this, take a notebook and take notes. You're going to be hit with a lot of information in a hurry, and writing it down is really important.

Try to take it a step at a time.

First, see the Urologist. He will certainly do a DRE (what we call the finger check), and likely will schedule a biopsy. After the biopsy, you'll know.

Second, assuming the biopsy report is positive for cancer, get a copy of the written report, and have the slides sent to Johns Hopkins for second opinion. And then come here and share the details of the report. We can help interpret.

Third, try to relax. PC is absolutely treatable, even at advanced stages. He'll be around a long time to come.

Fourth, like SP said above, let us know where you are. We can help aim you to top docs and treatment facilities near you.

Hello...The Urologist will most certainly want to do a biopsy to find out exactly what is going on, determine how advanced and how aggressive his prostate cancer might be..You should know that the the PSA of 170 does not guarantee cancer but it's very likely that PC is the cause...The biopsy procedure is a little unpleasant but it's over quickly .. Or they can treat it "blind" assuming from the PSA number and maybe a scan or two what they are dealing with. Treatment for advanced PC usually involves "Hormone Therapy" and Chemotherapy. At this point a cure might not be possible but his mortality can be greatly extended using the modern treatments available..Medicare might insist on a biopsy before they will pay for cancer treatment...

Welcome to HW, sorry you need to be here.

That is a scary PSA. A visit to the URO is in order. He'll need a few more tests. I would suggest another PSA just to confirm the number. But I am sure that a biopsy will be recommended.

The good news is that there are plenty of treatment methods today and if it is confirmed as PC, he has every chance to keep the disease at bay for many years.

Do let us know what the URO says. Ask all the questions you have - we're here most days,
Andrew

Hi Emmylu-

There are a couple of reasons PSA can shoot up that high. One is PCa. The other is severe urinary retention, often secondary to prostatitis or other blockage.

As a first step, the urologist may ask for a bone scan/CT after palpating the prostate. That may show there are distant metastases (but it also shows arthritis and old injuries). If there are metastases, he won't need a biopsy - he can start treatment immediately. Fortunately, there are many medications for it now.

Emmylu: One of the very best places for treatment--assuming he is diagnosed with PC--which is several steps ahead is Henry Ford Hospital in Detroit. It's a little further, but there are great and near great centers in Chicago as well.

So, first things first: get a clear diagnosis from a Urologist. The good news is, PC is slow growing. A few days or even weeks isn't generally going to make much difference.

As you move along this trail keep one very important thing in mind. You and your father are the decision makers. Do not let any medical person, whoever they are, push you in one direction or another. Once you know what you are dealing with apply the knowledge you are now gathering and make the decision that makes the most sense to you and your father.

May you be well.

Roger

It hadn't occurred to me that it may be possible to get into a system elsewhere (like Henry Ford) with just having the one blood test result so far. You think I could just call now, and explain that we are in the waiting process still, but that we have this initial PSA result of 170 and think there is a chance of surgery with that being such a high number, and if so we'd like to be lined up to have it done there? I guess I'm concerned about looking stupid/naive/crazy when we haven't even been told he has cancer yet. I realize i'm self-diagnosing via google ( or would that be daughter-diagnosing? ha) and we truly don't know, can't know, until a doctor tells us so. So I don't want to start a relationship with a place by seeming like I am full of myself or don't trust them, etc. I am well aware that they are the experts and I'm not at all. But it seems extremely likely to be cancer from everything I've read and I want to be as proactive as we can be, so it's a weird spot to be in.

Post Edited (Emmylu91) : 8/25/2018 11:42:07 AM (GMT-6)

Emmylu,

U Mich has a great system as well, and if Lansing is closer to you than Detroit, it might also be a place to call. If you tell them (a) who the urologist you're scheduled to see is, (b) what his PSA and other symptoms are, then they can provide assistance at this point--and be prepared for the next steps.

Most likely the Urologist (if he's any good), will want a prompt biopsy, maybe either followed by or about the same time will want a full body bone scan and a full body cat scan. Maybe also a prostate MRI. All of which are diagnostic tools to help understand what (and with his symptoms, something is happening, even if it's not cancer) is happening.

Hang in there.

Emmylu, First, like all have said, have the urologist examine him, do a biopsy, and, likely, a bone scan if the biopsy is serious.

The odds of him having cancer is very high. Yes, there are recorded cases of benign situations causing a PSA that high...but, those are very rare. The better news is that PCa comes in different risk levels, and those have to be determined to see what his situation is.

If he has PCa, be aware that surgery may not be the best option for him. Keep in mind that urologists are surgeons, and, surgery is their automatic answer. Radiation must also be carefully researched and consulted. Prostate cancer is not like some others, where surgery is always the best choice for a cure.

But, let's not get too far ahead. Get him to the uro, and then take things step by step.

They will likely order a bone scan, in addition to the DRE and PSA.

The urologist did a finger check and found two hard nodules. This combined with the PSA of 170 they explained to him was 'highly likely to be prostate cancer'. They didn't order a new PSA, they said with it being so high it doesn't need reordered?? I have wondered after the fact if I should have pushed on that but I just wasn't thinking totally straight I guess. We have a full body bone scan scheduled for sept 5th and a biopsy scheduled for the 10th. We were told they can give us his bone scan results when we come in for the biopsy on the 10th, and we have an appointment on the 17th to hear the results of the biopsy.

We found out that apparently in 2011 he had a PSA test that was 6.7. I know I didn't attend that visit as that year I was living out of town. I assume he went alone, but he had no memory of ever being told he had that high result and his medical records don't show him having a biopsy or anything done in response to that PSA. With his learning disability, I do think it's possible that maybe he was offered the chance to do a biopsy and just turned it down or something? It's really hard to know with him as his ability to comprehend doctors visits are not great unless they speak slowly and calmly and in very ordinary language which most doctors don't naturally do. Typically if I go and they see me sort of 'interpreting' for him they start speaking more simply and such, but if he goes to things alone he just nods along to avoid feeling awkward by asking too many questions or something, but then he leaves without understanding what went on, etc. So it's really hard to know what really happened back then. Maybe he refused a biopsy because he didn't really get why they suggested one, or maybe he really wasn't informed at all, like he thinks. But as far as his records show, that was the only record of a PSA being taken on him.

What's past is past, Emmylu, try not to dwell on it. His doctors are ordering the right tests and they're being done promptly, that's all that matters now. Let us know how they come out.