What to expect with no treatment

reluctant_member
reluctant_member Member Posts: 9 Member
edited July 31 in Prostate Cancer #1

Hi all. I have a biopsy coming up but, unlike most, I'm not interested in finding out what kind of treatment I may qualify for (frankly, they all sound absolutely terrible) but, rather, how much time I have left. All my friends have already passed on so it's pretty much just me alone at this point so no real desire to put up any kind of a big fight.

The MRI revealed PIRADS 3 and 4 lesions on both sides of my prostate. If I had to guess, which is PURELY a guess at this point, I would guess Stage 2. No symptoms at all--I'm old and still sleep through the night without getting up to pee.

Is this the kind of information a biopsy will be able to give me? If not, I think I'll skip it as I've read there's a 5% chance of ending up in the hospital with sepsis just from the biopsy itself, plus six weeks of bloody semen. Worth it if I get a life expectancy out of it--not worth it if I don't.

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Comments

  • Clevelandguy
    Clevelandguy Member Posts: 1,180 Member
    edited March 13 #2

    Hi,

    The biopsy will grade your cancer observed in the samples taken. The grade will tell you how aggressive the cancer is. I don’t know your age but if your cancer is graded 3+3 and your in your 80’s you could live the rest of your life with no treatment at all. Your Urologist should be able to discuss what he/she will want do for treatment. Most biopsies are tolerated well, they might do a rectal biopsy which does not require anesthesia. I had a rectal one, took some antibiotics in advance had no problems other than a little blood in my seaman for a few days. And by the way we are all reluctant members………..

    Dave 3+4

  • oldspice
    oldspice Member Posts: 58 Member
    #3

    Nobody can help you if you pretty much don’t care so in that case just pass. But to answer your question the biopsy is pretty much painless as you are put to sleep during the process. I can’t speak for others but I’ve had 2 and that was my experience. You will most likely urinate or ejaculate some blood from the process for a short period of time, week to 2 weeks. The biopsy carries much pertinent data for you and your doctor to process before a next step even occurs. Depending on that outcome you may need to schedule a PSMA scan but that depends on the biopsy report. At that point your doctor will explain your options but as for the biopsy if you care to stay alive it assists you and your doctor with the most probable prognosis. If you are old and are a stage 2 my guess is your doctor won’t suggest anything radical. Good luck I wish u well.

  • Arthurdent
    Arthurdent Member Posts: 14 Member
    #4

    Sounds like a trans-anal biopsy. They will treat you with antibiotics to hopefully prevent poop bacteria from infecting you. About 2% hospitalization rate.

    The newest biopsy is perineal which should be hospital stay free sterile. With pirads 3 and 4, and a PSA of less than 10 you have time to shop around for a urologist who does TRANS-PERINEAL FUSION GUIDED BIOPSY. NO PROBLEMS.

    I had a University research hospital that wanted to do a TRAN-ANAL biopsy. That route does not test for cancer as effectively as trans-perineal. Also, the serious infection rate is almost zero. Easy peasy, done under anesthesia like a colonoscopy. Or local AND less other side effects.

    Good luck!

  • Old Salt
    Old Salt Member Posts: 1,505 Member
    #5

    I don't see much, if any, use getting a biopsy if you don't want treatment.

    Carpe diem!

  • Arthurdent
    Arthurdent Member Posts: 14 Member
    #6

    Very true

  • Josephg
    Josephg Member Posts: 455 Member
    #7
    https://csn.cancer.org/discussion/327796/what-to-expect-with-no-treatment

    It is certainly your choice regarding treatment or no treatment. I will support any decision that you make, as it is your and yours alone to make. If you choose to do nothing, I would strongly recommend that you speak to a Medical Oncologist, preferably one very familiar with PCa, to discuss end stage planning. End stage for PCa is particularly brutal, so you will want to know how to make end stage most tolerable for you.

  • Arthurdent
    Arthurdent Member Posts: 14 Member
    #8

    Josephg speaks with clarity.

  • Steve1961
    Steve1961 Member Posts: 618 Member
    #9

    I have had 4 biopsies done first two kind of hurt because the urologist didn’t know what he was doing. The third one was not so bad the fourth one didn’t have any pain whatsoever because this guy that’s all he does for 30 years at a big Institute. Find yourself a place that specializes in biopsies and get it done, and if you’re that old and it’s not aggressive, have the radiation seeds put in and call it a day it’s not a big deal and you’ll be fine

  • mllc16
    mllc16 Member Posts: 7 Member
    #10

    I wouldn't be terrified of getting the biopsy. Yes it is a pain but if you want a better understanding of what is going on and what to expect it is worth it. The biopsy will provide Gleason scores that will help your practitioner estimate the stage of your cancer and provide guidance. If the Gleason scores come back high (8-10) I would encourage asking for a Decipher test. No additional biopsy necessary as they will use the same tissue. The Decipher test is a gnome test rather than a pathology review and it will provide analytical results related to the type of cancer you have and prognosis treated and untreated. Memorial Sloan Kettering Cancer Center also has a number of survival calculators on their web site that can help to estimate life expectancy.

    The ride is not fun or pleasant but is certainly manageable especially since prostate cancer grows slow and is treatable. That being said, talk and talk and talk. Bless you and good luck.

  • centralPA
    centralPA Member Posts: 322 Member
    #11
    https://csn.cancer.org/discussion/327796/what-to-expect-with-no-treatment

    I think the biopsy can give a lot of information on time left, potentially. It could indicate you have all 3+3=6 (ride it out) or 5+5=10 (knock it down using the least QOL-impacting approach) or nothing found (high fives all around). For each case, you’d want to at least take that knowledge forward and carve a slightly different path.

  • dgrinnan
    dgrinnan Member Posts: 12 Member
    #12

    You say you are not interested in treatment. The one option is hormone treatment which will slow it down significantly. That is just one pill a day.

  • knowayout1
    knowayout1 Member Posts: 6 Member
    #13

    I have not done my biopsy yet, just reading and learning. Everything I have read leads me to believe that if I am eligible I will try the nano-knife. I am 65. PSA has increased last few trips to my doctor, and I am just hoping that I will not be diagnosed with a high gleason. Thanks to everyone for posting!

  • Old Salt
    Old Salt Member Posts: 1,505 Member
    #14

    reluctant_member has been reluctant to get back to 'his' thread…

  • reluctant_member
    reluctant_member Member Posts: 9 Member
    #15

    So I’m back. Biopsy result is Gleason 4+3 stage T2C. Family begged me to “do something” so met with oncologist who said five radiation treatments and six months of A D T. This seemed tolerable (I refused 18 months ADT and 36 treatments) then I found out most people who do A D T get stuck on on it for life. So I retired early and am taking my nest egg and traveling. Have always wanted this but was always the “responsible guy”. Now it’s time to be irresponsible and have some fun. Better late than never.

  • Arthurdent
    Arthurdent Member Posts: 14 Member
    #16

    Kool, to yourself, be true.

  • Clevelandguy
    Clevelandguy Member Posts: 1,180 Member
    #17

    Hi,

    Glad you have chosen treatment, as far as ADT the drug ORGOVYX seems to be one of the newer drugs with lessor side effects. Hopefully with the radiation and ADT you can get into remission for many years to come. Good luck……

    Dave 3+4

  • Steve1961
    Steve1961 Member Posts: 618 Member
    #18

    wow for someone who is soo worried about side affects personally think thats the worst..adt is the last resort for a reason..if its contained to the prostate just take it out ..trust me lol insane and I chose treatment and now I’m four weeks out of having salvage surgery done. I wish I would’ve done it the first time not that bad.

  • dgrinnan
    dgrinnan Member Posts: 12 Member
    edited April 24 #19

    I am stage 4 with a Gleason score of 8 and spread to bones. I have zero symptoms. I have been taking ADT (ORGOVYX) for 4 months now. The only side effect I have experienced is the occasional hot flash. My PSA dropped from 69 to 0.17 after 3 months. To Steve's point, if it is still contained in the prostate and has not spread it is curable. Why wouldn't you address it and move on.

  • reluctant_member
    reluctant_member Member Posts: 9 Member
    #20

    | Why wouldn't you address it and move on. |

    I went to a support group meeting and one guy said he basically felt like a "walking neutered farm animal." Another guy said he'd become the "old grandpa no one wants to go near because they smell like piss." It's QUALITY not QUANTITY.

    | ADT is the last resort for a reason |

    I don't know about this. I went to one of the top 10 cancer centers and they said ADT pre-radiation increases effectiveness and that after six months I would stop and then everything would slowly return to normal. I think they're lying (not out of malice, I feel doctors have to present a "positive" case or more people would refuse treatment). Every person I've known who has died of cancer has been full of "hope" all through the "journey" and wasted a lot of time in treatments when they could have been living, enjoying themselves and putting their affairs in order.

  • dgrinnan
    dgrinnan Member Posts: 12 Member
    edited April 24 #21

    I respect your decision. I just think you are getting bad advice. I also went ahead and retired, and I am doing the things I always wanted to. With the treatment, I feel good, and it is prolonging my life. Even though I am stage 4 that has spread, if I respond well to treatment, I could last 5, 10 or even a long shot at 20 years. I am otherwise in great health. Everyone responds to treatment differently and all these are personal choice around what is best for you, but I would keep investigating, talking to other people in the same boat and make sure you have all the information you need and not just one or two people that have had a bad experience that could be related to other issues to make an informed decision. I wish you the best.

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