Time from diagnosis to treatment
Comments
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I also had my urologist tell me that the radiologists dont use the genomic testing results he tells me that my case is different, which tells me that I made an even bigger mistake The first time around the radiologist didn’t seem to care that I had cribiform …sooo now this time around my radiologist is telling me all these great numbers bir for men Not like me they’re all of lower grade Men like me was only 13% that are treated this is coming from my urologist They also said that the tumor is right next to the marker which was targeted pretty well, so what does that mean? The radiation did not knock it out and it came back because it’s strong will cryotherapy knock it out, and then we’ll come back again The doctors name is Peter Carol, UCSF, very well known he tells me I whould treat it one more time before we went to surgery now I have the pretty well-known doctor, Robert Reiter at UCLA telling me that after a second treatment is nearly impossible to take out, so you can see my dilemma here
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Steve,
If we take into consideration only the data of the Sep'23 MRI, then you may have a local recurrence. You could aim a localized treatment, such as surgery, repeated RT, cryotherapy, etc.
However, if the PSA relates to prostatic cells at far places then you would need to consider added therapy, which should be included in your decision of this time.
Surely this is a difficult moment in your new chapter of treatment. Discuss with your doctor, get second opinions and only advance when you feel confident.
Best
VG
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Hey Steve,
Pardon me if I have missed it in the number of threads you have posted on forums, but is there a reason you are not considering cryotherapy. My understanding is that it is a front line treatment for recurrence after radiation, and anecdotally I have a close friend who had very good results from it.
Eric
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I am considering it right now the UCLA top urologist who actually does perform salvage surgery is going to look at the MRIs the one when I was first diagnosed back in 2018 and the one I had a few months ago it seems to me they are concerned about exactly where it’s located in the prostrate, I guess the Apex is in the front seems like it may be hard to reach even though the doctor performing a cryotherapy seems to think he can handle it. He’s been doing it for 35 years so I’m just playing the waiting game. This is my last chance once cryotherapy is done if it returns surgery cannot be performed would be too much scar tissue then I don’t have any choice …so did the radiation not knock it out or was it missed it was missed then maybe I have a chance if it did knock it out and it returned most likely it would return again , it is gleason 8 cribiform .. posted once the UCLA team looks carefully at the MRI. Thanks for all your concern. I really appreciate it. right now it seems to be contained to the prostrate less than centimeter big right posterior Apex whatever no semi invasion no perennial invasion. It’s almost the prime choice with my age to have it removed but we’ll see. It’s so amazing the technology how can they see something in you only the size of a an eraser head pretty unbelievable how they can see all this put a man on the moon build that globe in Las Vegas self driving cars robots to do surgery robots to do everything. Computers drones isn’t that but yet they can’t cure this thing makes you wonder.
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I don’t know if this was a reasonable question to ask, but I asked how many salvage surgeries has this doctor performed and so far far this is the answer that I received
Thank you for your message. I can confirm with him the exact value but a salvage prostate is overall pretty rare (I may have done one or two in my residency training). Dr. Reiter is definitely one of the most experienced surgeons, so I can assure you are in good hands.
The resident is saying he may have done one or two salvage surgeries. I don’t know about this hopefully he was just helping out or finishing up.
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As I have said before, you have certainly analyzed your situation and for the most part come up with a solution that you think is the best for you. We do not always make the right decisions, no one does. We react to the results of our decisions. We all do. In your case, the results are leading to more decisions to be made. So, my friend, I tell you, you will have to fly that plane sooner or later, but you will have to fly it. Because no decision, is a decision in itself. With that said, you take all the inputs that are being provided to you and make the best decision for yourself. On a side note, I enjoy reading about your case. Makes for some interesting conversation. Good luck on your journey.
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Thanks for that you are a good man i hope you beat this thing inthink you have …i am letting go of the past slowly..but this time i want this thing out ..i think god is giving me a second chance ..let it be known that drs dont stress enough just how hard it is to remove it the second time around ..i guess when doing my homework i ahould have known because not many do it ..i also ahould have insisted that the radiologist and surgeon get together and both come up with same opinion.. this was on me with my issues with hospitals and surgery but I have been actually seeking help about that because let’s face it sooner later most everyone ends up in the hospital and has surgery at one time or another unless you’re very lucky so now I’m prepared. If this surgeon say im ntaken it out , I don’t care about the complications. They’re actually not as bad 25% chance of minor incontinence 10% chance of major and that can be fixed. The thing is the rectum but it is what it is. I just hope this doctor isn’t exaggerating about how many they have done I do trust him though he does want to look at both MRIs first he’s actually going to discuss it at his monthly conference (must be an interesting case. Lol ) before he gives me his opinion whether I should do Cryo or surgery. He could’ve just said surgery. I suggest surgery but he didn’t. The beat goes on. I’ll just keep waiting and hoping and praying lol happy new year.
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Actually, I know people that I’ve had it and doesn’t seem like a big deal to them. It’s just for I guess people unfortunately like me or us that I am a bit of an anxiety about it the way it is I mean my brother-in-law a few years back had an aneurysm, and he was at the time 73 years old And he went in for surgery. They literally took his skull off and working on his brain. It was a chance he wouldn’t make it through and he was calm as ever so there you go.
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Prostatectomy Followed by Radiation
Our surgeons at UCLA have extensive experience performing these surgeries and most often performed with robotic assistance. This procedure is called salvage prostatectomy and is most frequently performed by Dr. Robert Reiter.
Dr. Reiter is an internationally recognized expert in all areas of prostate cancer management and research. He was among the first to integrate functional MRI imaging and PSMA PET imaging into the diagnosis, surgical management, and care of men with prostate cancer. He was also an early innovator in the field of robotic surgery, and has completed more than 2,500 robotic prostatectomies. In addition to surgical management of prostate cancer, Dr. Reiter has expertise in MRI-guided biopsies to diagnose prostate cancer, focal therapy to treat select individuals, as well as all forms of medical therapy. Dr. Reiter has a particular interest in the multidisciplinary management of men with high-risk prostate cancer, incorporating the latest in genomics, clinical trials, and precision medical therapies into treatment plans in collaboration with UCLA leaders in the areas of radiation, medical and nuclear prostate oncology.
Hmmmm how can 1 person be en expert in sooo many different areas .. any thoughts .seems like he does surgery and does biopsies and does focal therapy. I mean is he God now I’m starting to wonder. 2500 surgeries is not a lot the two doctors I was looking at before one had over 5001 had over 3000. My family tells me I look into things too much and not just about this about everything I do maybe not a good thing.
I notice how it says our (surgeons ) plural at UCLA then it says it is mostly performed by Dr. reiter and notice how the resident said he’s done a few make no bones about it I’m not going be a guinea pig no way know how it is Dr. reiter or nothing this is getting interesting it must be extremely difficult. An expert is an expert. My urologist at UCSF has done over 5000 of them and he’s not even willing to do it right now SOB.
Maybe I am looking into it too much. If I didn’t I may have not been in the situation. I am now I trying to laugh about it but it’s hard.
This all started for me when I broke my foot about 13 years ago. I went to my podiatrist and he sent me for an MRI right away. He said oh you need surgery I have a Liz Frank fracture whatever then he told me that he’s never done one before, he told me the resident will be doing a surgery and he just be overlooking it. He had an old x-ray machine. He showed me the x-ray and I could barely see the fracture. It was like a quarter inch long and he wanted to put like six screws in and all this stuff , it made no sense to me. I went to get a second opinion lady came in. She looked at it and she said who is your doctor and I told her she said if he says you need surgery I would trust him. She told me she needed surgery and he did mine, and she walked out the door . I even had surgery set up and then I backed out that I was afraid to death. I went and saw another specialist a friend of mine recommended, and he laughed, and he said he seen worse fractures from people jumping off of their bed, and he asked me who the doctor was and he shook his head and they said he’s cut happy , anyway I didn’t do surgery. I stayed off for six weeks and I’m fine so that’s when it all started about trust with drs i dont know
Anyway HAPPY NEW YEAR we’ll see where this goes. I woll know shortly within a couple of weeks. I have to hold the record from diagnosis to treatment, but thank goodness my PSA has dropped. Even this doctor said that’s a good thing.
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Wow talk about really overthinking everything so tell me VAS and I don’t mean to be disrespectful how do I go about seeing if the PSA is related to distant mastitis I had the upper body state of the art PSMA scan or whatever you call it that is supposed to pinpoint any can cer and it showed one lesion on my rib then I had another scan to check that lesion and it was benign. It didn’t show anything anywhere else except in my prostrate so no semi vessels, no lymph nodes no anything which I thought was good, except in the prostrate should i go with that, or do I ask the question that you are presenting …..as dr smith from lost in space would say “oh the pain”
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Trying to but it is not easy .though .. i’ll tell you what though I know second chance surgery comes a lot of risks and complications but overall the success rate from when I’m reading is very very good for long-term cancer free maintenance deal with the side effects as long as I can get rid of this time to watch football
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Distant Metastasis
Hi again,
You posted above "...it showed one lesion on my rib then I had another scan to check that lesion and it was benign..."
This comment of yours exemplifies what we all (patients and care professionals) go through when confronted with biochemical recurrence.
Thought we are navigating in the dark, but we feel obliged in doing something at the earliest time.
... and, is it really the way to go?
Probably...
In any case, in your shoes I would try having a biopsy of the bone lesion identified in the PET PSMA exam.
Our aim is the cure and we will try knocking down a bandit we can't see or feel.
In the end, we did what we could at the moment to have it right. We should be satisfied with what we have choosen, with our decisions and accept the results. We cannot blame anyone. We need luck along the journey.
Choosing wisely reflects in the quality of life we will be living in the years to come.
This is a difficult moment of your journey.
Best wishes and luck in this year of the Dragon.
VGama
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Glad to see the Dragon up and about.
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@Steve1961 , did you look into the TULSA therapy at all? It can zap the whole prostate, so it is used instead o a prostatectomy, but seems to have fewer side effects. It is used on radiorecurrent failures too (your case). Saw this article, there are plenty others too.
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Steve,
The above TULSA treatment introduced by our comarade Central is usually recommended for local contained cases. It is another option grouped with the others we discussed above.
In any case, you need to confirm if your recurrence is solo localized.
The CT scan that was negative to bone mets may not be correct. CT scans look for and is limited to detect deformations above 6 milimiters in size. The pet PSMA works at microscopic cellular level, not on deformation. It is therefore more precise for detecting prostatic cancerous cells that produce affinity to the PSMA radiopharmaco.
In your shoes I would have a biopsy of the bone lesion to certify veracity.
Please note that I am not a doctor. My comments are based on my experience as a patient and studies done along the 24 years since diagnosed with the bandit.
And YES, the Dragon is on the move (thanks Lightnerwood). We will have a good and healthier year. Let's be positive.
Best
VGama
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So enlighten me, I asked about the pet scan if the results could be different at 60 minutes and 80 minutes which they didn’t do and they said that the pet scan I had was sufficient and blah blah blah, so how do I go about demanding a biopsy with the lesion on my rib who do I get to do it? How do I have this done
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Maybe I wasn’t clear. This is what the CT scan revealed about the lesion. Maybe it wasn’t a lesion
Bones: Small focus of radiotracer uptake involving the left lateral fifth rib with SUV max of 3.9 (image 148) otherwise no other areas of abnormal radiotracer uptake are seen.
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