Just found out I have stage three prostate cancer.

DOOLEYJOHN1
DOOLEYJOHN1 Member Posts: 3 *

hello I am 56 and just diagnosed with prostate cancer and was told that I my stage is considered stage 3c so I have a pretty good size tumor on the end of one of my prostates about a half inch diameter and they think it might have encroached into the Seminole vessels.
Was really hoping I was stage one , because I had no signs or symptoms.
I changed doctors and he ordered the PSA test and mine came back as a 15 so they checked it again and it was still a 15.
10 of the 13 biopsies came back with cancer, and I can’t remember my score because it’s a blur, but he told me that my cancer was an intermediate to an aggressive cancer.
According to the PMA pet scan, I do not have it in my lymph nodes or my bones or anywhere else, but I do have a cancer that they said “is likely to spread, and appeared to be encroaching into the Seminole vessel.
Well, when I heard that , I’m immediately like .,,,,then get it out of me ! just take everything out !
So I have a surgery scheduled sometime in February February to rip my entire prostate and lymph nodes out , but I think I made a rash decision because I haven’t even got a second opinion or talk to an oncologist yet
I am going to reach out to my urologist and ask him if I can talk to an oncologist to get their take on what they found and what their treatment might look like.
Just really looking for some answers as to what you all had done and what the outcome was and how you feel about your decision.
My gut is telling me maybe I don’t want to have it all ripped out. Maybe there are better options, but I also don’t ever want the cancer to return but it could return if they take it out and it could return if they do radiation , so just I’m super confused as to what to do.
I would appreciate anybody’s story on what you did and what happened after you did it, and are you happy with the outcome?


Comments

  • Wheel
    Wheel Member Posts: 162 Member

    It would be helpful to know your Gleason scores for the cancer cores. Also it sounds like your Surgery may have been scheduled without you knowing much about your Surgeon. Surgery by the right Surgeon is important if you go that route. The numbers of robotic they have done, the technique they use, single or multiport, nerve sparing, Retzius sparing and Puboprostatic ligament sparing. I was very scared of surgery and side effects  including just the thought of a catheter for 10 days. Both surgery and radiation have side effects, some overlap such as incontinence and ED and others like rectal are tied to radiation. ED after surgery is right away, and improves over the coming months with nerve sparing, while ED will come later during Radiation treatment or after treatment.  Today versus years ago, leaps in technology have come to minimize side effects in both procedures. Surgery with Puboprostatic ligament sparing, and Retzius sparing along with procedure technique to reduce or eliminate incontinence. Nerve sparing for ED issues and Robotic Single port entry for overall quicker surgery recovery. Now with Radiation, the development of Space Oar Hydrogel is used to minimize rectal side effects and focal Radiation procedures can also.


    For me choosing Surgery also had to do knowing that I would still have Radiation as a backup and approaching 71 the window to receiving surgery was getting closer to close regardless approaching 75 but sooner if my health were to deteriorate for any other reasons and preclude surgery. Salvage Radiation is much easier than a Salvage surgery as the surgery is considered much more difficult and done only by certain surgeons very experienced in that salvage surgery. Twenty years ago I had non-hodgkins lymphoma and my Oncologist recommended a lower chemotherapy regimen than CHOP saying we wanted to keep that in reserve for relapse or transformation. I liked having that as backup and I was blessed to go into remission and remain.

    Another reason I chose surgery was that while I was in surgery after the prostate was removed and the tissue was removed to check on margins, the tissue was sent immediately to the hospital pathology for staining to see whether I had clear margins. This clearly delays the closing of the surgery and in my case my margins did come back positive which surprised the surgeon because based on the hundreds of tissue he visually has seen in surgery which he did not see anything unusual and the PET scan saying it was contained within the prostate really was a surprise. Many Surgeons do not bother with this and at your post surgery appointment they give you the disappointing news that you have positive margin. Well my Surgeon was then able to go back in for 2 more hours delicately continuing nerve sparing and cut for more margin and at my post surgery appointment I was told the final margin was then negative. Without that additional step of my tissue going to pathology I would have been told at my post surgery appointment that unfortunately you have positive margin as many are. His afternoon surgery appointment got delayed by two hours by the surprised breeching of the capsule by the cancer. Immediately upon my catheter coming out I was continent and have minimal ED side effects 90 days out with more improvement expected. I was up walking immediately after surgery and did not even spend that night after surgery in the hospital. Within two weeks I was back to normal activities like driving and getting out and around and traveling. Although my catheter was in for 10 days that was due to a 3 day holiday period but that allowed my surgery to continue to heal. Now on a downside I did get a blood clot in my leg from the surgery likely due to my surgery taking much longer than expected but blood clots are a side effect of any surgery not tied to prostate surgery. Anyways my thoughts on my direction I chose.


  • Wheel
    Wheel Member Posts: 162 Member

    Also i have no incontinence and my ED appears minimal with improvement continuing

  • DOOLEYJOHN1
    DOOLEYJOHN1 Member Posts: 3 *

    thanks so much for the share. I know my surgeon is very capable and has a lot of experience with a robot and that’s the technique they’re going to use.
    The surgery requires two surgeons, so in order for them to line up both surgeons to be able to be in the same room and have an operating space in my state. They can’t do it until February, which gives me lots of time to talk to an oncologist about what their thoughts are.
    My overall thinking was that if I had it all removed, the chance of it coming back would be very very, very low as opposed to them doing radiation maybe not getting it all and some of those microscopic cells get out and I’ve got cancer forming somewhere else, although that could be likely with the surgery too so it’s just a question of do I want the radical surgery with the nerve sparing and everything else or would I be better off with less side effects by doing the radiation nowadays I guess has its own side effects but from what I’ve been told not near as bad as taking everything out .
    I’m still on the fence, but I think I owe it to myself to get an oncologist opinion of what they think because they deal with the radiation and cancer versus my urologist which deals with cutting stuff out versus treating.
    There was no mention of radiation after the surgery so I need to have another discussion with with my urologist. It sounds like either way.
    Sounds like you have definitely been through some stuff and I am glad that you’re still with us
    My hope is at 56 no matter what happens I live to be at least 80 as my wife is 20 years younger. I would like to spend as much time as I can with her before I leave this planet whether I can get an erection or not is not my concern really at the moment it’s am I gonna have to go through this all over again if the radiation doesn’t work and they end up taking it out anyway.
    I was told though if you have radiation it’s sometimes harder to take it out because everything shrinks and it’s tough for them to cut it out properly and get all the margins because of what the radiation does to your body, but I’m not sure about that. it was just something I think I heard or read somewhere.
    I’m still trying to digest the fact that my old doctor that I had until last year never bother checking my PSA, especially since there was no family history as my dad died at 54 and my grandpa died before I was 12 .
    My entire life would’ve changed that I found out back in my late 40s that I had this. so for that, I am upset with my previous doctor, but all I can do is deal with what’s here and now not change the past.

    sounds like I’ve got some more investigating and more talking to do with my surgeon and an oncologist just to get their point of view. I don’t need a second opinion from another urologist, though I am fully trusting my surgeon and have no doubt that he will do the best that he can to get everything out that needs to be out and spare what needs to be spared if it can be done.

    I guess I’m just thankful that the cancer that I have now is one that is very treatable. Live long and prosper as Spock would say.

  • mbluth
    mbluth Member Posts: 11 Member

    Since the surgery is in February that gives you plenty of time to investigate alternatives. I had a Gleason Score of 7=4+3. I had many of the same concerns as you do. I consulted with 4 urologist/urology oncologist and 2 different radiation oncologists. I decided on surgery with a urologist (RARP) on 10/30/24. My recovery has been slow but steady. I went the surgery route based on my comfort with the surgeon (over 3000 operations) and considering all of the possible side effects of both treatments. Based on my research the results of surgery and radiation have very similar outcomes. I am 59. Please do your research at reliable sources and do not hesitate to get second (and third) opinions.

    Honestly, I had one radiation oncology recommend surgery and one urologist recommend radiation. It gets confusing.

  • Clevelandguy
    Clevelandguy Member Posts: 1,206 Member

    Hi,

    It sounds like you have done your homework, consulting with an Oncologist is a good idea. I had surgery 10 yrs. ago and I am still undetectable today. I still drip a drop now and then, ED is present but I still have a usable member. I do not regret my decision on surgery one bit and some survivors here talk about a newer one incision robot procedure that reduces the risk of leakage & ED. With surgery I feel you have better future options if the cancer returns(ie; radiation, Proton therapy, ect). Your choice once you select your treatment based on your particular situation.

    Great doctors+great facilities =great results.

    Dave3+4

  • Marlon
    Marlon Member Posts: 127 Member

    I chose surgery too, after being told I would have good outcomes with either choice. I wanted the cancer out, not just getting injured. I am glad I did because the post-surgery report showed that the cancer was a bit more aggressive than they could have told from biopsy, and was beginning to spread. So my lesson is that they can't really tell what's going on until they get in there.

  • pauls1234
    pauls1234 Member Posts: 1 *

    ** Note, I am getting a message that I need to be around for a little while longer before I can post images so my biopsy and notes are not included here

    DooleyJohn1 - This is my first day here and I was astounded to read your description because my diagnosis is almost identical. Below are my biospy results. After the PSMA PET scan, I had a meeting with both my oncologist and a radiologist and attached the oncologist recommendation here as well.

    Without going into huge detail I went into the PET scan with optimism that it was isolated completely at the prostate, so my plan was to go through surgery and just get rid of it all. After the PET scan, while there were no signs of cancer in lymph nodes or any distant areas, there is concern that it could have reached the bladder and seminal vessical, in which case there could be a good chance that surgery would still leave cancer that would require radiation/hormone therapy. The radiologist said I could still go through the surgery followed by radiation/hormone treatment, but because they would want to start that treatment fairly soon after surgery, the side effects of BOTH at the same time may be quite difficult on me - he has a patient currently who went that route and they are really struggling.

    I am getting another MRI which hopefully will give them more information as to the seminal vessical and bladder involvement, but both the radiologist and oncologist felt the best route would be to undergo High Dose Brachytherapy (involves implanting of catheters directly into the prostate and sending radiation directly inside for a short period (minutes) - this may have to be done twice. I would then be on hormone treatment to reduce testosterone followed within a few weeks by 5 day/week external radiation for 5-6 weeks.

    I still have this nagging thought that I'd like the majority of the cancer just removed, then undergo the external radiation and that I can physically "handle it," but I do read that recovering from prostate removal surgery can be tough for some men and there's no way of knowing if it will be bad or not. I will have a lot of questions after this MRI , but at some point I'm going to have to make a decision soon and in the end I imagine I will put much more weight into their recommendations than what my common sense is telling me - after all, they do this for a living and have seen outcomes.

    If I were in your shoes, I would FOR SURE try to find a good Oncologist both to review your biospy results and give you his/her opinions. I would also consider talking with a Radiologist and get their thoughts.

    If you happen to be located close to a well respected cancer facility, that's the first place I'd start. Ask as many questions as you can and gauge not only what they say, but how they say it and everything involved. The place I am going is one of the top cancer facilities in the U.S. and they are not only incredibly well organized, they have a whole team of folks who work together and are willing to spend as much time with you as needed to come to a decision. There's value in feeling confident and comfortable with doctors and facility that puts you at ease and displays tremendous competence.

    Good luck to you

  • NYguy99
    NYguy99 Member Posts: 10 Member

    You should have the decipher report done (genetic test ). It will give you more clarification on risk of spreading

  • DOOLEYJOHN1
    DOOLEYJOHN1 Member Posts: 3 *

    hey Cleveland guy, I appreciate the comment and would like to ask about your ED if I may.
    Is it something that like the blue pill takes care of or are you on some other medication? What kind of penile therapy have you been involved with to try to get that function back if any?
    I could care less whether I drip or not but the ED has me a little bit worried as I’m only 56 and my wife is 38.
    I know that they will be using the robot for the surgery and trying to do everything. They can despair the nerve and not disrupt anything else and I’m not sure how involved it is in the seminal vessel, but my score was high enough that they said it was an intermediate to an aggressive cancer leaning more to the aggressive evidently I’ve had it since I was in my late 40s is what they assume , there are no signs from the PMA pet scan that it was in my lymph nodes or anywhere else it just started to encroach into the Seminole vessel.
    I am leaning toward having the surgery just to make sure that it’s all out and they get the margins they need and then I will be on some sort of therapy after that I’m assuming but I am also going to meet with an oncologist just to make sure

  • Steve1961
    Steve1961 Member Posts: 625 Member

    1 very very very important step you must do ..have the biopsy sent out for decifer testing . when was first diagnosed I was the same age as you. 56 They said it was stage one. It was 3+4 I went to see radiologist, surgeons, blah blah blah six months later I had to wait for this one surgeon that I really wanted to use at UCSF he said we’re not doing anything until I have this tested tested. Guess what it came back and it was aggressive Cribiform that’s when I started to panic and I still chose radiation. Guess what cribiform is radiation resistant and the radiation it didn’t work. It failed so I had to have salvage surgery. Thank God I was able to do it still . You need to get this tested for cribiform .if It is cribiform. Your decision would be that much easier. You have no choice. You need to take it out and even if it’s not cribiform, I think at your age and everything. I would still take it out as long as you’re damn sure that it has not left the prostate. Don’t worry about the erection all that I can get one after radiation and salvage surgery, but I do pretty leak good, but I’m cancer free

  • Steve1961
    Steve1961 Member Posts: 625 Member

    indont know what kind of insurance you have or if you want to travel.. the holidays and this and that but you know you said it takes two surgeons and this and that it takes one surgeon to direct the robot and donthe surgery . It takes two assistance, one on each side of the table to guide the arms in place and another assistant to look over all the vitals and anesthesiologist it’s a lot that goes into it, but most of them have a waiting time because of the holidays and this and that you know you could always go out of state if your insurance covers it. I used a guy by the name of Dr. Robert REIT ER of UCLA Los Angeles, California look him up on YouTube. Dr. Robert Reiter look up the videos on yiu tube it may ease your worries .

  • Old Salt
    Old Salt Member Posts: 1,530 Member
    edited December 6 #13

    The type of specialist you want to consult is a RADIATION oncologist, not a medical oncologist. Preferably one at a highly rated specialty cancer institute. Fortunately, you have some time, although the holidays may interfere.

    Find an NCI-Designated Cancer Center - NCI

    One thing that hasn't been mentioned much in this thread, I think, is that with radiation, one can go a bit outside of the prostate. Especially important if (some of) the cancer is close to the edge.

    Yes, it is a difficult decision (surgery vs some kind of radiation) and whatever happens afterwards, it's best not to look back.