Time from diagnosis to treatment

Steve1961
Steve1961 Member Posts: 454 Member
edited January 9 in Prostate Cancer #1

I think this is getting a little ridiculous five years ago first time round I was diagnosed on December 7. I did not start my therapy until the following July 7 seven months now five years later I have a final appointment with the surgeon at UCLA next tuesday and then I’ll make my decision. This will be six months since i found out I had a reoccurrenc that was on June 26, is it just me I know it’s supposed to be slow growing but it’s cancer. I’m starting to get nervous I mean even though they say it’s slow growing. Its still cancer My PSA has dropped from 1.9 down to 1.5 I mean should I be concerned

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Comments

  • Steve1961
    Steve1961 Member Posts: 454 Member

    Sorry i repeated myself ..upset i bit

  • oldspice
    oldspice Member Posts: 51 Member

    More study by all of us on just how slow prostate cancer grows would be interesting. Does it matter what stage you are or if it’s new or reoccurrence? Is it more advanced outside of the prostate? Chances are you can get 3 different answers from 3 different doctors IMO. Is 4+3 same as 4+4 as far as time value? Not all cancers are the same that much I know. They know prostate cancer is much slower growing than other cancers. That’s all I know

  • Steve1961
    Steve1961 Member Posts: 454 Member

    At least I’m keeping a close eye on it. It has dropped down to 1.5 and it is still in the prostrate so I hope but what does it take to exit the prostrate and how does it exit the prostrate I mean I’m hear guys now with PSA of 5 and Gleason score of seven and it already is left the prostrate and then someone like me who had a Gleason score of seven and I probably had it for seven years. They probably missed it the first two times And it was aggressive yet. It didn’t leave the prostrate it’s just so upside down.

  • oldspice
    oldspice Member Posts: 51 Member

    Yep! That’s why no 2 people are alike and our situations are just so unique. One thing I’ve learned through everything so far is to remember it is very slow growing and always better when still only inside the prostate. As long as things stay in the pelvic area is also very good. The PSMA scan is new and revolutionized the screening for prostate cancer. It’s a game changer. Stay positive

  • VascodaGama
    VascodaGama Member Posts: 3,638 Member

    Hi Steve,

    I looked into your previous posts and history. You haven't changed a bit. Always worried.

    First let me say that your status doesn't alter in 6 months time. You can get those consultations and choose what gives you confidence and peace of mind.

    The most important item for your decision on a therapy is to get the opinion on the PSMA scan from a nuclear radiologist. You need to be certain that the recurrence is in fact localized without far metastasis.

    From your narrative on the scan (...one picture taken at one hour, then go home), makes me think that the positive exam, which started this phase in your PCa process, was a 68Ga-PSMA PET/CT. This is supposed to be the best but tiny metastases can produce images of low SUVs and requires experts reviews. Typically, the prostate bed shows high SUV (positive), because of the proximity of the bladder (filled with the radiopharmaco at the time the picture is taken) that causes a blared output of the whole area. The biopsy confirmed the presence of the cancer only in the gland. Is it enough?

    It seems that the protocol at the institution where you did the exam does only one timing section at one hour after injection of the radiopharmaceutical, which is contested by some radiologists.

    The preferences go to two sections at 40 minutes then at one hour or at one hour then at 80 minutes.

    In your shoes I would obtain a second opinion on the images.

    In 2019 I had a 68Ga PSMA PET (PSA 1.78) which was judged as negative because of the blared image caused by the die in the bladder. The protocol was similar to yours with only one take at one hour.

    In October 2023 I had another 68Ga PSMA (PSA 9.50) that at one hour it identified this time increased SUV at the area of the prostate bed (in comparison with the image of 2019). But a second take at 80 minutes identified a metastasis at the pubic bone in low SUV.

    Regarding treatments, at 5 years since RT, you need to be careful if your preference is repeating radiation at the same area. Surgery could be successful if the bandit is whole contained in the gland. I do not know much about cryotherapy but it seems to be sort of palliative. To such extent, you can opt for a palliative hormonal blockade widely practiced around the world.

    How about obtaining an opinion from a medical oncologist?

    Being in a hurry to treat is not the best approach. Being confident with what we have chosen is a step forward to success.

    Best wishes

    VGama

  • Steve1961
    Steve1961 Member Posts: 454 Member

    Get this And my coworker who happens to be 66 years old and his PSA is 0.8 that’s right 0.8 and now I found out my Inlaw has prostate cancer. He just turned 70 his PSA was seven and his Gleason score was 3+4 now he’s waiting for decipher testing. I personally know right now 6 people, including myself that have prostate cancer. Four of them are fine me I don’t know and my in law I don’t know also no hormone treatments or anything like that, so maybe there is hope . make that seven I forgot about the old fella down the street but he was 76 poor health bad ticker PSA was 46 put him on hormone therapy and he was dead in a year.

  • Steve1961
    Steve1961 Member Posts: 454 Member

    Not sure what you mean by a medical oncologist the dr I’m seeing is a urologic oncologist he’s been at UCSF for 35 years

  • Steve1961
    Steve1961 Member Posts: 454 Member

    Where would I find a nuclear radiologist I guess just Google it and start searching and then see if they’ll look at it I take it

  • VascodaGama
    VascodaGama Member Posts: 3,638 Member

    Hi,

    Medical oncologists have a deeper understanding on the use of drugs in hormonal treatments. They consider other factors (age of the patient, other future illnesses in need of added drugs, interactions of medications and food, lack of vitamins, etc) that usually urologists disregard.

    Urologists follow the guidelines of urology institution which are usually adapted to be applied to a group of patients as "one fits all". Medical oncologists tend to individualize the status of the patient.

    You can find them at UCSF. Also for the second opinion from a nuclear-radiologist with loads of experience in reading pet scans.

    The urologist can guide you in regards to consultations of other specialities.

    Choose wisely. Radiation (all forms) on top of previous administered radiation can lead to fistulas. Get second opinions on the matter.

    Do not precipitate things.

    Best

    VG

  • Clevelandguy
    Clevelandguy Member Posts: 951 Member

    Hi Steve,

    From what I understand you can use Proton treatments if traditional Xray radiation has failed. Might want to look into it with your Oncologist to see if that type of treatment can help. I have attached a link for you to study.

    Dave 3+4

  • Steve1961
    Steve1961 Member Posts: 454 Member

    Well, I’m kind of anxious to see what the surgeon from UCLA recommends. It seems to me the one at UCSF is avoiding the surgery because he knows he’ll probably leave me with some major side effects that could probably lead to a poor quality of life. I think he’s just giving me hope That cryotherapy can cure it or at least give me another 5 6 good years until I may have to have surgery at least I’ll have five or six years of a good quality of life that’s just my feeling but they specialize in salvage surgery at UCLA so let’s see what he says, kind of starting to lose faith in the doctors Not being upfront with me, but then again, when come to cancer you always want to give your patient hope since there is no cure I guess

  • Steve1961
    Steve1961 Member Posts: 454 Member

    Met with Dr. Robert Reiter from UCLA and he is suggesting salvage surgery but he does want to view the MRI himself and go over it with some colleagues before he gives me his final opinion. This is so stressful starting to lose faith in UCSF if I didn’t find this doctor by searching, I would be going into cryotherapy with the idea that if it came back a third time we could indeed remove the prostrate which I was told you cannot do nobody will do that not even the doctor UCLA way too much scar tissue starting to lose faith in UCSF

  • oldspice
    oldspice Member Posts: 51 Member

    Everything seems like big waiting game. Seems everybody has same problem. Probably due to huge uptick in Cancer care since Covid. I dunno. Mental issues seem to be big part of this process. Worrying or becoming upset will only make it worse so hang in there. Stay strong best you can.

  • VascodaGama
    VascodaGama Member Posts: 3,638 Member

    Hi Steve,

    You are upset for the negation of the urologist but you can ask for a second opinion on the MRI results from a radiologist.

    Surgeons will dissect the whole gland no matter what is inside or identified in image studies. The pathologist will then inspect and tell you what they found.

    Calm down.

    Best

    VG

  • Steve1961
    Steve1961 Member Posts: 454 Member

    Question I looked at the summary of my first MRI back in 2018 and my latest one back in September of this year seems to me. It looks like the tumor is in the same place quite possibly that the radiation didn’t get it all or it was missed and to me this is a good sign, if I have to do cryo again maybe it will knock it out for good if it was a different spot I’d be really concerned

    feb2018

    IMPRESSION:

    1. A 11 x8 mm lesion in the right anterior peripheral zone at the apex of the prostate is suspicious for prostate cancer (PI-RADSv2 category 4).

    Sept 2023

    IMPRESSION:

    1. History of prostate cancer status post radiation with a 0.9 cm lesion in the right transition zone at the apex of the prostate is suspicious for prostate cancer (PI-RADSv2.1 category 4).

  • Steve1961
    Steve1961 Member Posts: 454 Member

    Not upset at all. He’s actually going to confer with other urologist at a conference . He’s very thorough. I’m just saying gonna take a couple more weeks.

  • Steve1961
    Steve1961 Member Posts: 454 Member

    I’m sorry if everybody thinks I’m going on and on, but this is difficult decision which really shouldn’t be at least the first time around it shouldn’t of been. But hear me out when you have two top urologist both questioning cryotherapy because of where the cancer actually is the prostate it kind of makes me wonder is the doctor that does cryotherapy being honest with me and truly thinks he can do it or does he have an ego and just says he’ll give it a try I think I can do it. This is not a car he’s working on if it doesn’t work, I have to live with it , and he just chalks it up to experience

  • centralPA
    centralPA Member Posts: 209 Member

    “but this is difficult decision which really shouldn’t be at least the first time around it shouldn’t of been.”

    You could have chosen surgery the first time around, and have seen your last erection and had an artificial sphincter implanted to cure your permanent incontinence, which now complicates radiation because even though you had negative margins your PSA is climbing back up, because that is what PCa sometimes does. You’ve lost trust in doctors? Guess who does surgery on your prostate? Doctors.

    YOU DON’T KNOW. It’s a crapshoot. You study the odds and place your bets. You bet on the procedure, and the doctor, and the team, and the place, and the day. The first time around you placed as good a bet as you can place, based on the odds as understood THEN and the data you had THEN. In hindsight NOW it was still a good decision THEN. It was a smart roll of the dice.