I had 3 bone scans in the last 18-months, the last one in May 2021, all negative. Then I had a PSMA scan on 2nd June, due to my rising PSMA, which went from < 0.1 when I stopped ADT to 3.2. It showed -
"Bones: There are three or less osseous metastases (Oligo).
-1.3 x 0.8 cm lesion with central lucency and surrounding sclerosis in the left aspect of the L2 vertebral body (series 401 image 147), SUV max 11.9.
-A 1.4 cm lesion with central lucency and surrounding sclerosis in the sternum (series 401 image 44), SUV max 11.7.
-Ill-defined lytic lesion of the anterior right fourth rib (series 401 image 67), SUV max 11.6."
The doc said that while it is bad news that there is spread to the bones but the good news is that the PSMA scan has caught it early, before the bone scans picked it up, the plan is to radiate them and go back on ADT. In other good news, the radiation I did last year plus ADT did manage to clear 35+ lymph nodes that showed involvement upon my initial diagnosis. I still have 2 lymph nodes that are active, they could not be radiated safely before as they are too close to my heart and trachea. My radiation OC said they would try to radiate one of them now. The other one is still tricky to radiate so they are hoping that ADT with help with that one.
I wanted to share a bit more about my journey and the one mistake I made. I value the opinions of the knowledgeable people in this group a lot. When my radiation treatment was planned last year at UCSF, they had left out Brachytherapy, Tall Allen suggested I talk to my OC about adding that, the doc said it was a great idea and it got added to my treatment. However good UCSF is, they still missed it and TA caught their mistake.
For several months my PSA was not detectable and I started dreaming of being off ADT. I posted on this group for advice and I got mixed responses, the more knowledgeable people said I should go 2-years at least, others said that there is no point in continuing ADT as I cannot do better than my nadir (less than < 0.1). Some even said that my testosterone will never come back if I wait too long. So I stopped ADT, in consultation with my OC, on 1st Feb 2021, now I know that it was not a good idea, I should have given it the full 2-years instead of 15-months. The point of this long story is that while there are excellent sources of advice in this group and I grateful to be here, however, you have to be careful about whose advice you choose to follow. In my big want to be back to where I used to be, with testosterone, maybe even be able to have sex again, I choose to read the advice that took me there and ignored the others. We all know it is not easy being on ADT and we have to sacrifice some things but like another member (Greg) said leave well enough alone. Hopefully, my experience can help others from making the same mistake I did.
Wishing everyone the best!
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barrybayarea
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I am glad they are going to actively zap those mets. Its nice to see someone getting action based on a psma scan. As for the rest, there is no one perfect way. If there was, we would all take it.
You need to tell them the met is causing you pain and then you can get it zapped as palliative and insurance will then cover it. I must be very sensitive to pain as all my mets have been zapped. It might be whack-a-mole, but it kills cancer
Greg yes I agree the bone scans are just not sensitive enough, like my doc said we got to see a glimpse in the future using the PSMA scan. I am not "non-metastatic", upon 1st diagnosis, I was considered metastatic with 40+ lymph nodes involved.
Similar experience. UCSF requested PSMA scan for my husband last November. Insurance denied. CT scan and Bone scan (done at UCSF) both clear. May 2021 Insurance approved PSMA scan. Found one small bone met and a few lymphnodes outside pelvic region. Felt EXACTLY like you. Went from potentially curable to not overnight. They will zap the bone met, but due to previous RT 30 years ago, they won't zap the nodes. Or remove them surgically. Not sure why, but have to trust them at this point. Sure wish the Insurance companies didn't dictate how doctors do treatment.
Sorry to hear they cannot zap your nodes anymore. That is kind of how I felt on coming to know that I had bone Mets, like my life, however much I had left might have got reduced by half. I can see why insurance refused the PSMA scan at first for you since it was not FDA approved yet and still in testing stages at UCSF. It was not the case for me as I had first got diagnosed at Kaiser and they right away said that they would not do radiation on me as my cancer had spread too much already. They only offered me ADT, said that is the best they could do. I am glad I switched to UCSF, at least they gave me some hope of buying me some more time with radiation along with ADT.
Agree 100% Am thankful for UCSF. Jim had private insurance last November and Medicare February 2021. Medicare would have approved it in the clinical trial stage but we were a few months from there. They will do EBRT to the prostate, and as I said zap the bone met. It is actually so small that they aren't 100% sure it's a met, but feel strongly enough it is that they canceled his Brachytherapy which was the original plan. The Drs at UCSF do have us feeling like they can control the cancer for quite some time. Very glad you switched from Kaiser to UCSF!
Thats why after 4.5 year adt i no longer talk about shore leave....ive heard this here alot ....ive lived 65 years with few regrets as much as cancer sux and the treatment is pure hell for me....its onward thru the fog.....b.w
Barry, I just started this crap journey and also am being treated at UCSF with Dr Pete Carroll. Just had the PSMA Scan last week….Next is a Zoom meeting with him this Friday. Unfortunately I have one Gleason 9 score and
6 #7s . But the scan showed No Mets. Do you have any advice as to what I should be asking the Dr when I talk with him this week. So far I’ve only had
The 3TMRI Fusion biopsy and the PSMA scan so that’s where I’m at now.
How long have you been going to UCSF for treatment and how do you feel
about their care so far…..other than what you mentioned ?
I wish you all the best of luck dealing with. Thank you ! Todd C.
Hi Todd, sorry that you have joined this journey with us. I remember the first few months suck, I did not get any sleep for a while. UCSF has been excellent, more than the treatment, they gave me hope and attention, something Kaiser refused to give. I have been at UCSF since Feb 2020, I was diagnosed in Oct 2019 with Gleason 9 in all 12 cores from my biopsy.
I am not sure on the exact questions that you would ask, I generally ask how they are planning to treat me, then do my own research to see if that is the most effective treatment. This site is an excellent resource to see who else got that treatment and how they did with it. However good UCSF is, even they can miss things, it is good to run the treatment plan by 1 other knowledgeable person. Like everyone says here, we have to be our own advocates.
Hi. Bay Area here, also. I am being treated at Kaiser Walnut Creek and am on Orgovyx, Zytiga, and Prednisone. So far, so good. May I ask what your issue was with Kaiser? No prostate specialist? Best.
Hi Reb, they did finally assign me a prostate specialist, someone who they had just hired from UCSF, however, it was clear that he was overloaded with patients, he did not enough time to answer questions or really engage in my treatment. While my 2nd and 3rd opinions had said that radiation will help if ADT is already working, he just refused to accept those opinions from Stanford and Harward. When I came to UCSF, they too said that radiation would help and they were very surprised that Kaiser refused me that treatment. I got the sense that their hesitation may have been due to the fact that both the insurer and the treatment provider, cost-saving consideration, just a guess? I was just not comfortable with that possible conflict.
Switching to UCSF depends on your insurance, seeing your other post, I see that you already qualify for medicare, I am old enough, I believe under medicare you can go almost anywhere and have it be covered. With my insurance, it took some work but I eventually managed it for just advanced care, I cannot have a PCP at UCSF but for cancer treatment, I could get a referral from my PCP for UCSF or Stanford.
Thanks, again. I am 78 and have been with Kaiser for over 35 years. I have an oncologist, but I had to tell him about the new drug Orgovyx, which he approved. Apparently, folks on this site are more up to date on latest PC developments, unless docs specialize in PC.
I feel it is not that the docs do not know, sometimes they tell us selective information or just cannot be as thorough in their plan, they have too many patients. This site helps us come to know what the doc missed. I too have moved to Orgovyx but I had to ask for it, the default is still Lupron.
No one in this group or any other wants to hear it, but so far medical science does not have a cure for metatastic prostate cancer. They can zap it, they can hit it with ADT, they can cut it out, they can attack it from all sides, but they cannot cure it. What they can do is extend your life, sometimes until you die of something else. It’s hard to accept this, but once you do, you can stop so much frenzied searching for the magic cure that will make it go away for good. If your treatment slows down it’s growth and spreading and still allows a half decent quality of life, enjoy that and keep on trucking. But don’t stop the treatment unless you are ready to say good bye.
Hey Echols - don’t doubt science and the brilliance, potential of humankind! These advances with PSMA pet scans allowing for targeted radiation, newer approaches like LU-177 and then the essentially MAGIC of immunotherapy like Keytruda clearly demonstrate we are on the edge of solving this.
I agree with you Echoll.Medical science does not have a cure for metastatic prostate cancer at the moment, and there is a possibility they may never have a cure - or at least one that comes with a cast iron guarantee for everyone. Far better to accept the situation and lead the best life you possibly can rather than clutch at the straws of wishful thinking and 'magical' cures. Medical science has made incredible advances in the last 20 years, but there is still no cure for the common cold. By which, I mean to say, sometimes it works - and sometimes it doesn't.
As you well know by now, the bone scan doesn’t ‘lie’ so much as it’s simply limited.
The arc of medicine changes so rapidly now, relative to even 20 years ago, doesn’t it? I was diagnosed earlier than you but in the same year. I had no idea the bone scan I received was becoming such a crude device. Like many, I was comforted by the clear scan-very naive. Only 2 years ago…soon there would be FDA approval of the new scans, ADT in pill form with faster T recovery, darolutamide and more.
Back then, I found this site and it became a go-to for empathy and experience. I soon discovered the obvious-lots of conflicting advice. Experts, brand new ignorant but curious guys etc What I didn’t yet understand was the HIGHLY heterogeneous nature of this disease.
I quickly picked up on the anecdotal ‘truths’; that chemo was to be avoided at all costs, that ADT was a evil slayer of quality of life, also to be avoided, that RP was mutilation for profit etc etc.
For awhile I found that confirmation bias was a constant temptation, sometimes still is. But slowly, we hopefully learn enough to think for ourselves a little more effectively, ultimately trusting in smartly found professionals, asking plenty of questions. It definitely took some time for me.
You were diagnosed as a G 4+5 with over 40 positive lymph nodes. The treatment did it’s difficult magic and drove your PSA to undetectable. At 14 months it looked like a vacation was in order, or at least an acceptable risk. Who can blame you?
Yet while no one could say if it was a ‘good’ idea or not, you also by now know that your pathology didn’t lend itself very well to stopping ADT at 14 months. Yes, you could have been cured or given a long remission, but it was unlikely.
But would the full course of ADT done any better for you? No one knows that either! And so it is with the whole treatment milieu: In clinical trials, differences in endpoints of disease-free, recurrence-free and overall survival are often a month or two-now that’s where QOL becomes poignant!
You went off ADT and within only a few months your PSA was rising fast and your testosterone very slowly-exactly what we don’t want. But you took your shot! I like that.
I didn’t have pathology as ‘adverse’ as yours but not far from it. I did a clinical trial with chemo, 2 years of ADT, abiraterone and IMRT. I was honest with my MO and RO about side effects so I was given the go-ahead to stop ADT early at a year.
I had my last Eligard injection last September. My T has come back to over 500, my PSA remains undetectable and I feel tremendous.
It’s could also be over next PSA test.
But I took my shot!
I’ll enjoy this to the absolute max as long as it lasts, but if I have a recurrence and have to fight what ends up as chronic disease (including a return to testosterone suppression) I’ll do so with a smile on my face, as best I can.
What I won’t do is sit around wondering if 2 years of ADT would have been the difference maker. That’s dead and gone!
We have so many more options than before. Gratitude is key for me. So was taking my shot😀
Stay strong and know you are doing all you can. Onward!
Glad to hear that you are still undetectable. My husband stopped adt after 9 months of it. Gleason 9, rp and radiation. Hoping and praying it stays undetectable. If not he'll go back on the adt.
Thank you for your kind words London. You are right, I had to take that shot, I was eager to find out how the radiation did and what else is left if anything. Now I know and can get that part treated. Agree gratitude is key, I am thankful for each day that I get the strength to handle the cards I have been dealth, I am still alive
I sit here waiting for the results of my PSA test so that tomorrow might be my last Lupron injection for some time. Of course it will be revisited we every 3 months so it really isn't a real milepost just something to set my sites on.
Had the same experience- bone scan said clear then PSMA said I had a met on thoracic spine. My MO said it was good to know so we can stay ahead of the game in treatment. But he didn’t change the Lupron and Zytiga +p.
I appreciate you sharing! I also want to be off ADT. I took 6 month vacation 2 years ago and had much the same results as you. Back on ADT and cyber knife radiation to the T11 has brought the beast back under control for now.
Good luck with your continued treatment and life .
Florida is about to open their first PSMA clinic in the Ft. Lauderdale area, but they require a prescription. I would drive down from northern Maine to get it done, by my urologist is refusing to allow me ANY type of imaging prior to getting a biopsy. Any thoughts on what to do if you live in a rural area with one urologist who is like this?
I've heard it said a random biopsy is like sending out 13 mini subs to try to find a large nuclear sub that's invaded your harbor by hoping to bump into it, while a PSMA is like simply turning on the sonar.
I don't know enough to be a pimple on some members here, especially Tall Allen, but each of us has to choose which direction to take our treatments. Much of this is a numbers game with statistics telling you how likely it is that a given treatment will get you.
None of these scans can "see" everything and there is no way to know if going only 15 months caused this. Praying UCSF can help you!
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