Hi everyone, My dad went to the doctor recently and discovered he has a psa of 255. His doctor ordered him a psma pet scan for a week later which was supposed to be today. He shows up and Kaiser cancelled the scan. They told me it happens a lot that radiology appointments need to be cancelled (? Not sure why) The next available appointment is in 2 weeks. I called all the nearby kaisers and there's nothing for even longer. I don't feel like there's been any communication from his urologist. I know prostate cancer is extremely slow growing but Is this normal? To feel starting treatment and getting a diagnosis goes so slow? Should my dad get a biopsy before the pet scan? Should he/can he start hormone therapy asap? Any guidance? I’m worried sick and it’s so painful waiting around.
Very slow start getting treatment and... - Advanced Prostate...
Very slow start getting treatment and diagnosis
Does he still have his prostate?
yes he just went in for some urinary issues last week and they gave him his first psa test in 10 years and it came back as 255. I’ll update bio
Kaiser is inundated with patients that started coming out of the woodwork, once Covid eased off.
They can’t seem to keep up.
I was also one to get a PSMA cancelled, but they rescheduled for a month later. I complained enough that I was referred to UCLA, and got an appointment within days.
Call member services and ask to be referred out.
Which Kaiser hospital?
Kaiser Oakland. I called every Kaiser in the area and they are all 2-3 weeks out. I even called ucsf and Stanford and same thing. I’m just wondering if this normal for the process to be so slow. What was your process with Kaiser once you got your pet scan done? Were you able to start treatment relatively quickly ?
very normal.....they don't want their personnel standing around with nothing to do, so they staff personnel to maintain a "not quite in time" waiting line. Plus, they may actually be limited by equipment availability...they want that Expensive investment working full-time!!
I'm not sure the urologist can add much at this time.....does he plan to do a biopsy? Kaiser has a good messaging system....are you using their online system? ask the urologist your questions!!!!!
he doesn’t have an official cancer diagnosis yet or anything. They found out his psa was 255 and our next step is waiting for the scan? We have had very little communication from his doctor.
Since you are just starting, and with a PSA of 255, can't Kaiser proceed with other standard diagnostics like a prostate biopsy and culture (to establish a Gleason score) while awaiting the PSMA PET? Experts: any chance that a recent biopsy screws up a PSMA PET?
it seems like they should be able to do that. I really feel brand new to all this so I’m not sure what’s standard. I’ll try and get a hold of someone at Kaiser to ask but they are impossible to reach
At least in Oregon, Docs or their nurses respond to messages from patients. I have never had a problem reaching a nurse in a specialty department. Call the main number and ask to speak to advice nurse in that specialty department!!!
it's just as well- he can use the delay to have a bone scan/CT - that is a better starting place anyway. If he has distant metastases, he can avoid a biopsy. And if there are 1-3, he can move to radiation to his prostate.
If the bone scan/CT is negative, the PSMA then makes more sense.
It seems the wait time for a CT scan is just as long as the PSMA pet scan. We are just going to have to wait. His urologist ordered an ALP test in so we could have a little more info during the wait… it came back as 65 which was well within normal range and we had a glimmer of hope. However-she wasn’t hopeful that it meant much of anything considering his PSA is 255. She said that any PSA over 100 almost certainly means bone metastasis. She’s already prescribed him Lupron and bicalumtamide to start today. I obviously am not a doctor but skimmed some Swedish study from 2020 that said the study that claims psa greater than 100 definitely mean bone metastasis was dated and a more anccurate indication was a psa greater than 500. Anyway.. not sure if you know anything about ALP or dated /updated studies but I see you posting here a lot and you seem very well informed. Just looking for glimmers of hope. Either way he is willing to start the hormone therapy ASAP
A bone scan/CT is different from a CT. with a bone scan/CT, it is part of the same machine. They are usually readily available. Ask for it before he starts hormone therapy.
ALP is different from bone ALP - It is mainly from the liver, probably.
Studies show it does not matter if you start with the therapy one year after diagnosis. Resist to act quickly it will not make a difference.
As a retired nuclear pharmacist who personally manufactured the entire gamut of radiopharmaceuticals, the manufacturing process of F-18 FDG, F-18 Axumin, F-18 NaF are extremely difficult and complicated. It takes a skilled pharmacist 8-10 hrs to make a single drug. So many things can and do go wrong. Any one of these will cause the batch to be failed. When these unfortunate circumstances occur, the patient must be rescheduled as there is not enough time to try a second batch on the same day. As others have pointed out, the scanning equipment costs millions of dollars. Imaging facilities want to be fully booked for weeks. So when a failure requires a reschedule, the patient may be asked to wait in line again, even though it was no fault of their own.
At a PSA of 255, it is likely metastatic, so I would proceed to a GP and see if you could get him on Lupron right away, while waiting to see a specialist. Meanwhile try to get a PSMA scan out of network, possibly UCLA, to see the extent of involvement. If his PSA were in the 10-20 range you could wait, but I haven’t seen one over 100 that wasn’t metastatic and eventually need ADT (Lupron, etc) plus radiation.
Just for the record my PSA was 254 and the PSMA Pet CT scan showed no metastases. Though I agree it is a rare occurrence.
My PSA was 106, all scans did not show any mets.
good news to hear. I still am trying to remain hopeful for that. What was your Gleason score
Gleason 5,4
did you ever have an ALP test? Alkaline phosphatase.. my dads came back normal today and I’ve been thinking of your comment. Maybe it’s possible it’s not metastatic
No. Since we did a PSMA Pet CT Scan immediately there was no need. We could directly see the extent of spread if any.
Did you get an FDG PET as well? My PSMA came back clear, but 4 mets showed up on an FDG.
I believe what I've heard is oncologists recommending against starting ADT before the PSMA-PET scan was done, since the ADT may shrink the metastases' so they can't be seen on the scan. I have to agree with TA that a bone scan /CT is a good first step since neither of these will change the outcome of the PSMA-PET scan.
A Prostate biopsy is in order. That is the urologist’s territory. Multi-parametric MRI guided biopsy is probably the best. However, 12 core sampling is still the most common and is quickly done in the office. Provides tissue to assess the pathology type and aggressiveness (Gleason score). That info combined with the PSMA scan will guide treatment decisions and options to be considered.
I agree with this is a reasonable set of actions. First biopsy followed by PSMA Pet CT Scan. Even the standard 12 core biopsy is ok. If cancer is detected it will be widespread in the prostrate so no chance of missing it with the standard biopsy. I presume that a digital rectal examination has already given an indication of cancer. Otherwise it could also be prostatitis. As often suggested get a second opinion on the biopsy slides to ensure proper Gleason grade is known.
It has changed in a few short years. I had no symptoms and PSA of 156. Am with Kaiser but not in CA. That was end of May. Then referral to urologist, DRE, biopsy, CT Scan, Bone Scan fight for Axumin, denied, started ADT in Oct, Zytiga in Nov, and radiation in January.I know waiting is hard but it serves a purpose and if a biopsy can be avoided as TA says that would be great. They are very invasive IMO.
Ive always asked myself, did the biopsy needle seed PCa into the fossa?
I had NO margins, but a biological recurrence.
Makes one wonder.
I can imagine. If they are getting away from biopsies and able to diagnose without it that would be a good thing IMO especially incases like yours.
I wonder many things about my disease and how I am treated but early on I decided to stick with SOC whether right or wrong. I was interested by those on this forum that made the opposite choice but they don't seem to be around anymore for whatever reason. As for me the doctors and myself always suspected more cancer than conventional imaging was showing but Axumin was all they had at the time. I considered paying out of pocket but all of my doctors advised against it and said it would not effect my treatment. So finding it after a period off of ADT was not a huge surprise. Though restarting ADT and it being a crap-show is a bit surprising compared to the first time around.
I am sending you my prayers and healing thoughts, as I am my dad's advocate as well. ( my mom too, but they are 86 and 87 and my dad was diagnosed 16 years ago and has been through a LOT. But...he's a never going to quit or give up kind of guy...and the mental part is HUGE.
First. I recommend DON'T PANIC. Take a deep breath, and understand that there are many options, and paths to follow.
The PSA is only a small part of the equation.
Next, there are SO many other questions, I'd find a urologist that works WITH you, and my dad went through 3...now his is "a team."
My dad had biopsies, then scans, and then his prostate removed...then MANY treatments, including stopping everything at one point and going drug free...
Sign up for the BEST of Langone University's Mens Health Specialist > Dr. Geo Espinosa's newsletter here > drgeo.com/
He helps with everything from ED, to Incontinence, to Prostate Cancer...naturally. He also does seminars, summits, and has a podcast on how to live with men's health issues, and how to alleviate issue, cure issues, and treat issues, without horrible meds.
My parents have done several telemedical calls throughout this journey with Dr. Geo...and then opted back to conventional medication now.
Here for you!
Wishing you, and your dad the best on your journey to thriving,
Dawn
dadsdrdawn post hit the nail on the point..... The point being: First. I recommend DON'T PANIC. Take a deep breath, and understand that there are many options, and paths to follow.
Slow down, get a good urologist, medical oncologist and radiologist. Post here on HU if you need a reference. Your location?, your Dad's age? All info is voluntary.... Keep on going!!! and Posting!!!
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 05/26/2023 10:29 PM DST
> I know prostate cancer is extremely slow growing but Is this normal?
This is FALSE! With a PSA of 250, it is quite possible he has an aggressive type of PC. One thing that is not answered is did he have a biopsy and what were the results of that?
Honestly it feels to me that something is missing here.
It is not normal. However, sometimes the tumour does not metastasize though there may be spread in seminal vesicles and extra capsular extensions. I had something similar where biopsy showed Gleason 5/5 and PSA of 250. There was one ECE and seminal vesicles were affected. PSMA Pet CT scan was done as well as MRI but they showed no metastases. ADT brought the PSA down to 1.4 in less than 3 months.
I had a PSA of 29 at diagnosis with a single bone met and lymph node mets. My Gleason Score was 4+5=9. I know of another guy with a Gleason 9 and a PSA of 81 with no mets whatsoever (confirmed on PSMA Scan.). So, the PSA (IMO) is not always a great predictor.
My Alk Phos was always normal but dropped around 20 units from when I started ADT/chemo to the end. (Still normal but definitely dropped.)
With Kaiser, you absolutely have to be the squeaky wheel if you want timely care. Send your father’s Urologist a message and say you want a call to discuss the plan moving forward so you understand timing and next steps. Be polite yet firm and direct If they don’t respond, call Member Services, file a Grievance against the doctor and tell Member Services you want a live call or in person appointment within 2-3 days to discuss.
In California, the Department of Managed Health Care considers timely access for routine specialty appointments, imaging or ancillary services (PT, OT etc) 15 business days from the date of request If Kaiser can’t accommodate that, they have to send you out Call the Nuclear Medicine Scheduling Line for the PSMA and tell them that unless you get an appointment soon or are referred out, you are going to file a complaint with the DMHC about untimely access (Kaiser does not want that.) When I got my PSMA Scan, Kaiser tried to push it out for a month until I pushed back They referred me to a local imaging center and I had it done within 4 days
Good luck!
I was in the same position with my father about a year ago. I lost weight, didn't sleep, couldn't think... honestly surprised I didn't get sick myself. I was a zombie walking through step by step with the world burning down around me it seemed. You can reach out to me for anything. His journey so far in my bio
He started with 226PSA. Anyways bone scan and CT scan after a long wait came back showing no spread. There are people here with low PSA under 20 with spread and there are people with high PSA with little to no spread. My father has a gleason score of 9 as well.
So just some info for you to start. Reality is you just don't know the extent of it until some tests and results start rolling in. We called around and pushed for quicker appointments. The CT and Bone scan he got in pretty quick to (about 2 weeks so that part seems normal). A cancel and 2 week delay on top of that not so great.. try and push for quicker. because results take another few weeks after that so time adds up quickly.
Good thing once results come in is that they often give him ADT (injections) which basically blocks testosterone and prevent the cancer from worsening/spreading further.. at least for a while. That at least gives you peace of mind while you wait for the radiation during that period of time knowing its under control
Having a parent go through this is so difficult I know. You feel responsible and helpless and you just want to do anything you can to help in any way possible.. you're in the right place.. I owe this community a lot as they helped me keep a level head and calmed me down in my worst moments. Best of luck to your Dad
thank you for the response reading this was reassuring! He actually posted on this forum yesterday because his urologist actually went ahead a prescribed him Lupron despite still having no scans done. He’s worried it’s going to make him feel really terrible. How did your dad feel when he started
The shots.. terrible but also tolerable I would say. It brings side effects that suck BUT us humans learn to adapt and tolerate things rather quickly. and no choice.. its the cost of living in this case
side effects my father has.. again they don't sound that bad until you think about having these daily
-Hot flashes (these occur almost daily)
-BAD admoninal cramps.. almost crippling the first 2-3 days after shot injection and then don't return until next time they inject hime
-Fatigue (complains about this a lot.. )
-Muscles feel weak. He had to stop and sit down while at the mall. Legs got so tired they went numb. (regular exercises combats this)
Only way to minimize side effects of primary ADT is to keep active and indeed to exercise as much as one's physical condition makes it possible. One has to press on even despite the fatigue and other negative factors. Gradually you will see the side effects are much less frequent.
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