Hi all. Hoping to get some additional takes on my situation.
The background: Diagnosed with PC in October, 2018. Initial PSA: 11.42. Biospy: Gleason 7 (4+3), but downgraded from orginal Gleason 9 diagnosis. Opted for radiation & ADT. Started Lupron 6 weeks before rad. Then 5 high intensity cyberknife treatments over 10 days in early February, 2019.
This past July, PSA (6 months post radiation) was 1.08. My last test from 3 weeks ago (6 months post ADT) was 4.38. That's a doubling time of about every 2-3 months.
That's certainly faster than the 6 month doubling time that triggers concern.
My uro and radonc are recommending no action for now, and a PSA retest in 3 months.
Obviously, the stakes are high. A 6 month doubling time is often indicative of metastasis, and we all know where that leads.
I was told that a new PET scan is available that can detect distant prostate cancer metastasis on a micrscopic level.
The docs want to hold, and I'm very nervous about waiting.
Your thots?
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LessPaul
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They don’t say waiting is a “good thing,” they think waiting is prudent. I get that, but the stakes are really effin high. I am looking elsewhere. Btw, both my Uro and radonc specialize in prostate cancer.
They explained it as 3 possible reasons for the elevated PSA: radiation bump, but that usually occurs closer to radiation. The second is biochemical recurrence....basically fake news. Together, they make up a little over 50% of cases with Rising PSA. That leaves a roughly 50% chance of metastasis. Those are terrible odds, and seems like a”break the glass” moment to me. My docs don’t to share my concerns.
To clarify: Biochemical recurrence (BCR) is not “fake news”. It is rising PSA after failed primary treatment. It indicates that there is remaining cancer somewhere growing but not large enough aggregates to be seen on scans.
It could be inadequately treated areas within the prostate after primary treatment with radiation. Or it could be in adjacent spread in proximity to the prostate. It could be in lymph nodes. Or it could be in distant sites, micro- metastasis.
Probably should have been testing PSA more frequently to identify a nadir, and possible BCR (i.e. three consecutive rises or 2ng/dL over nadir). A DT of < 12 months would indicate the more aggressive PCa cells (4’s) are not responding to ADT. Definitely get a PSMA scan to identify possible extensions or mets. Consider 2nd line HT and salvage strategy if mets to LN’s or bone.
Ya know, the irony is think in this one. As I type, my last uncle (& godfather), age 85 is dying from metastatic PC. He could go today. I visited him 3 times in the last few weeks and I am scared as hell that I'm watching my own fate play out in his.
Sorry to hear about your uncle. Even though 85 is a long life, losing a loved one anytime hurts. I’ve lost a friend and an uncle to Stg IV PCa. God bless you all.
The truth is, yesterday I had what I can only describe as a panic or anxiety attack. Nothing like this ever before. I was having a text convo with my cousins (their Dad) as they described his condition. It was emotional. At some point, I put the phone down and cried. Hard. For about 20 minutes. Then 15 minutes and another crying jag overtook me. It wasn't grief over my uncle. It was fear for myself.
I think you should follow your gut and from what you have written and the fact you are reaching out, your gut says this does not feel right. You are allowed to speak up for yourself. Our first doctor at one of the best hospitals in the country, let my husbands cancer spread, waited too long to test PSA and misread scans. Luckily, another Urologist we had monitoring the situation, told us to not walk but run to Mayo. It really does not hurt to get a second opinion.
You are on the right track reaching out and you are starting to advocate for yourself. Great job. I'd call today and tell them you want the best scans available now and not wait another day. I can't imagine what the benefit of waiting might be. All the best to you.
It looks like the cancer has spread. I know patients that live with mets for twelve years now, so this is no death sentence.
Usually you will start with ADT. Whether you do that now or three months later or more will not make a difference except a rising PSA value. I have mets too and just have to live with that.
I had several PSMA PET/CTs in the past. You can radiate the mets, this may delay progression, but it will not cure you.
Thanx for you reply, GP. I get that some people go a very long time with mets. Those are individual cases. But the overall 5-year survivability rate in metastatic PC is about 30%. A lot of people live with the mets, but far more don't.
I just got an email response from my RadOnc. I asked, "put in simple terms, why is it a good thing to wait?" Here's what he wrote:
"Please review my previous email as to why I would recommend repeat PSA in 3mth's. Also there is NO PET scan that can DEFINATELY rule in/out metastasis. The current prostate specific PET scans are ,however, much better than CT and bone scans at detecting residual/recurrent prostate cancer. As we talked about in your follow up appt with me, even though we all want an answer now as to is this gone, it is going to be following the PSA over the next 2-3 years that will give us the best idea as to your response to treatment. As I mentioned before " this is a marathon , not a sprint" as we follow prostate cancer. "
Clearly, your physician is correct about the PSMA not being definitive. But if your PSA is indeed 4.38 now, it will show something and help make treatment decisions. There does not seem to be a good reason for waiting 3 months at this point, in my opinion.
But at the same time, it is way too early for you to lose confidence in a long life. There is much that can be done these days even if distal mets are there, and the 30% 5yr survival statistic you cite is not current and does not discriminate based on the kind of detailed definition of mPCa that you can have today.
Personally, I would just get on a plane and go someplace a little less third world where PSMA PET is treated like a medical test rather than a religious object that only some high priest can dispense.... your PSA is sufficiently high that PSMA PET should give a pretty unambiguous indication of what’s going on.
That emailed rationale doesn't strike me as all that rational. Why on earth would a doctor NOT want to discover 1) if there are mets and 2) where and what kind and how many and...and...? Why wait? I don't get it - that response makes zero sense to me.
If he's so sure of himself, he needs to take a step outside himself and try to see things from your point of view - that's kind of basic, isn't it? Especially for a healing profession? Does he actually think you should be satisfied with his answer? Knowing what PC can do, and how fast it can do it? Wait three MONTHS? Christ! So there's no PET scan that can DEFINITELY rule in/out metastasis. So f------ what? You go with what you've got. And a doctor who really knows how to read scans will get close enough to "definitely" for you to find out what you're actually dealing with, and then help you decide what your next step, not TELL you what your next step is - or isn't.
There are too many doctors who want to go by "the book" - IOW, statistics, studies, whatever - instead of seeing a patient as an individual who is his own book. They think they're being totally objective - well, they're not, they're as subjective as the rest of us, they're filtering their knowledge through their own personalities and mindsets. Some of those mindsets are more closed, others are more open. Not like gods - just like regular people!
I don't think your doctors have standing to make these kinds of decisions for you because, well, they're not you and they're not the ones with prostate cancer. I think you need a second opinion. Immediately. And not one from a doctor in the same practice, either. I'd say the odds are 50-50 that the second opinion won't match the first opinion.
Sorry for the rant - what I've seen on this site about doctors' behavior really infuriates me sometimes. You have all of our encouragement and hopes backing you up.
The Not knowing sucks. Waiting and not knowing sucks even more. I too have done Rt and adt only ..
To ease your mind it would be prudent to get a second opinion, Ga-PSMA Pet CT and Circulating Tumor Cell testing. Please check out Biocept CTC test. Also, if you're willing to travel and pay out of pocket, you can get the scan out of the US. Best of luck in your journey. Rock On Brother 😺
Less- I think it is rational to assume the Pca is spreading. Local vs mets. I would get a second opinion from another RO. If you have not had full field RT to LNs, pelvis, I would definitely consider this treatment. Might be your last best chance for cure. Why wait until it is obvious mets on our suboptimal "state of the art Scans". Good luck, let us know how it evolves.
You said you are going to the U of M if you are in Minnesota you may want to go to the Mayo. I agree with the others get scans. And see if you are metastatic. Like you say this is nothing to play around with.
Also like many others we, all have our down days where everything looks bleak. Don’t worry about crying when your down its only natural. Find strength in your God, be open to your friends and family on how your feeling.
None of us wants to be in this club and like I tell my wife the new normal sucks at times. But do not let this disease take your happiness or stop you from doing the things you enjoy. Get out and do the things you enjoy , you have many forms of treatment to attack this beast.
My oncologist and I believe is easier to treat small cancer than big cancer.
Always remember it’s your life and you need to be your own advocate. I would guess if it was your Dr. life he would get the scans.
I tend to agree with several others about the delay and the implications.
I also agree that this is not a time to panic and rush to decisions.
The problem is that a middle ground might seem to narrow the gap but what is a practical approach to sensitive timelines and perception as to what is and what could be happening ?
This type of thinking and process is very unnerving, to say the least.
The rise in PSA is notable and brings forward possible tests to determine why.
One thing I've learned about 'successful' treatment(s) is that 'something' gets missed, and the disease continues to progress. Clearly, that is not success, but missing something is too common IMO - at least from what I've observed in the last 3 years. Even a 1% miss equals thousands of cases that progress.
At least, in your case, they are monitoring you closely. 3 months is not an eternity and should not be the basic cause for a catastrophic outcome.
IF you can get qualified second opinions, then that might be a step forward.
IF, after a few months delay, you discover that the medical team has failed the test of credibility and trust, I'd move on to true professionals who have a track record of success in managing patients.
It is still early enough in the process to make the right decisions, without undue risk.
Go to an oncologist not an urologist, I fired my ur due to his wanting to find out about a cyst with evasive tests, that was over 2 years ago, just keeping an eye on it a product of age. Hang in there, pray ,exercise and enjoy your life. We all go through the crying stage, embrace it as part of life, nothing to be ashamed of.
I understand that many patients become very comfortable with their Urologist. Many of them have a higher level of understand and knowledge of prostate cancer. But, they are not Oncologists. My father was in the medical profession and alway said, “ get treated by doctors that specialize and practice in your illness”.
My OC does a PSA test every month. I get extensive blood work every month. I have been on Codesex, Zytiga/Prednisone, Xtandi. As soon as my blood results showed that any of these were not working, he moved me onto the next level of meds. Without blood work and PSA tests every month, how does your doctor know what is working or not. I was never comfortable with The wait and see method of treatment.
I am fortunate to live in Florida and have the Florida Cancer Specialists and Research Center available to me. My Urologist recommended them as he does treat prostate cancer, he admitted he did not have access to their knowledge base and access to the latest medications available.
Hi LessPaul. I was 66, almost 67, when diagnosed Stage IV metastatic to bones and lymph nodes (March 2017). Psa 59.9. Because of a compression fracture, my 5 year survival was pretty much zilch. Almost 3 years later, I feel I will make the 5 year mark. Unless something else takes me out. So I agree with tinnison about survival stats. Newer drugs are extending survival. I won't even pretend I know enough to give any kind of medical advice. A doctor in hand is probably worth 5 in the internet. I went from my initial I'm Doomed to I'm Doomed, but not today. Hopefully you are not metastatic, but even so, advances are being made. Too slowly some will say, myself included. So sorry about your uncle. Try to relax and do something nice for yourself. Best of wishes.
Ok Less tell us more.... What's your age? Where are you located? Where are you being treated? Doctor's name(s)? ALL info is voluntary but it help us help you and helps us too. If you do respond do it in a new post on another day. Looks like most guys here opt for a second opinion for you from a Medical Oncologist that specializes in Pca. As far as crying is concerned, we all have and then realized that the more we cry the less we pee. May your uncle (Godfather) find God's Peace and be free of pain.
So before I go can you tell me if you had fun with Mary in the back seat of your Ford?
That response from your RadOnc was condescending in my book. I'm no expert, not a doctor and even don't tend to chime in here too often, but for some reason your situation really resonates with me and what's going on with my husband right now. I would get another PSA done right away. You can order them from Quest Diagnostics or Direct Labs in most states. My husband is going for one tomorrow that we ordered from Quest. He stops at the lab in back of the Safeway on the way home from work and we get the result online in about a day without having to wait for the doctor to release it. We will be looking at traveling somewhere to get a PSMA if my husband's PSA keeps rising. He was diagnosed in July 2018, PSA 70, Gleason 9, stage 3Tb. He had surgery and salvage radiation. PSA went down to .31, then .4 and .5, so moving up. PSMA scan seems like the best next move for us because the auximin pet scan we could get where we live isn't that accurate under about 1.75 to 2.0 PSA from what I have read. Has anyone suggested an auximin pet scan for you with a PSA of 4.38?
You should request that PET scan with Axumin, and fast. At a minimum a CT scan with and without contrast. With a rising PSA like yours scans can provide actionable information.
Waiting three months really sucks for you .. I’m stuck with whatever dr I get. If you have the means a second opinion won’t hurt .Othets will chime in as to what course to take . I wish you to get that PSA down once again . If the docs aren’t panicking don’t you ...? Easy for me to say ...hang in there .. you onco could be right ?? It is good they are calm . We are left blowing in the wind until you get to the bottom of this . I’m pulling for you ..👍🙏
So sorry about losing your uncle, LessPaul. May he know perfect peace in the infinite.
Agree with the others here that you want a top-notch MO to head your team now.
Baseline Axumen PET Scan with CT and perhaps bone scan now. PSMA PET could wait a bit IMO and may be approved and widely available before long. But you could get one now by self-paying for it at UCLA, or for free if you are a veteran.
You could be having a post-radiation “bounce” and have not reached nadir yet. It can take years for very slow growing prostate cancer cells to die from the radiation when they finally get around to dividing. Sequential PSA tests will reveal this. You should not have to wait 3 months If you want more frequent testing at this time since things are neither clear nor stable.
If it is not a bounce and PSA continues to rise, and if scans do not show cancer at sites outside the prostate. Then I would find a RO who is expert with brachytherapy (radiation implant seeds) to discuss the possibility of Brachy-Boost to go after any remaining cancer in the prostate.
tsim......sorry, I‘m bad about posting updates. Yes, I got the PSMA test, which revealed mets on my sacrum and hip bone, plus a couple more in local lymph nodes. It was fully covered by Priority Health.
I continued the Lupron, then added Casodex for a month before going on Zytiga. My most recent PSA test came back significantly improved....going from 11.7 down to 2.3 in that time.
So, things are looking up, until of course, they aren’t. My next PSA test comes up in November.
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