Finished IMRT, now what?

REB72
REB72 Member Posts: 36 Member

I was diagnosed with stage 4a prostate cancer gleason 9 (4+5) a few months ago. Spread to a couple of pelvic lymph nodes. I went through HDR Brachytherapy in late July followed by 25 sessions of IMRT. I just finished my last session on Thursday. I am on orgovyx and zytiga for 2 years. My last PSA test was .10. So, as I understand it, they will now just monitor PSA and hope it stays low. Wouldn't you expect PSA to stay low while on these ADT drugs? What happens when I come off ADT? Do I just hope and pray for the next 2 years that this cancer is gone? Seems pretty grueling. I find it difficult to see outcomes of stage 4a cancer. Most posts I see online discuss distant metastasis. What is the liklihood of this triple therapy getting rid of this forever? Being 52, there is a long period of time for this to come back. My radiation oncologist is hopeful this will get this cancer. But I asked him what if it doesn't. He didn't really have an answer to that. I have no family history of this. I had genetic testing done as well with no mutations found. If this cancer either lingers on or comes back, what are the options on the table? As I understand it, since I had radiation there is not the possibility of surgery. If it comes back, would they try chemo or more radiation? Both internal and external radiation were pretty uneventful for me. Minor urinary and bowel issues i hope will go away. My urologist gave me a 50% 15 year survival rate. Which sounds pretty decent on paper, but that would make me 67 and my daughter would only be 30. Also, does this cancer start out with a low gleason score and then progress to gleason 9 or does it start out with high gleason score. I am thinking i had this for a long time and didn't know. How will i know if this is gone or just being held at bay by ADT?

Comments

  • Wheel
    Wheel Member Posts: 138 Member

    congrats Reb on completing your RT. There is Absolutely the ability to have surgery after Radiation and it is becoming more common. Steve1961 on this site just completed salvage surgery. It’s true most surgeons don’t do, but at the major cancer centers you can usually find surgeons that have an expertise in it and are successful.

  • Clevelandguy
    Clevelandguy Member Posts: 1,177 Member
    edited September 22 #3

    Hi,

    As long as your PSA stays stable and does not continual to climb you should be OK. Since you have some Prostate tissue left you will always have a PSA number. ADT will not kill your cancer cells but weaken them so other forms of radiation can finish the job. If your cancer does start growing again as stated above by Wheel you can still have surgery. You have to find a experienced surgery in that area to do your surgery. Also Proton therapy can still be used to kill cancer cells after you have had radiation. I am surprised that your Oncologist did not offer any other treatment paths as stated above. So there are still some options available to you if needed. Just hope your PSA flatlines for the coming years.👍

    Dave 3+4

    https://www.mdanderson.org/patients-family/diagnosis-treatment/care-centers-clinics/proton-therapy-center/what-is-proton-therapy.html#:~:text=Additionally%2C%20proton%20therapy%20can%20be,or%20radiation%20exposure%20to%20others.

  • REB72
    REB72 Member Posts: 36 Member
    edited September 23 #4

    Thanks Clevelandguy and wheel. I am being treated through an MD Anderson cancer center. I will have a follow up video appointment with the radiation oncologist's nurse very soon. I will inquire with them about proton therapy. I don't believe this hospital has proton therapy. This is possibly why it wasn't discussed. I also have appointment with my urologist in late October

  • Clevelandguy
    Clevelandguy Member Posts: 1,177 Member

    Hi,

    According to their website, MD Anderson do have Proton machines.

    Dave 3+4

  • Rob.Ski
    Rob.Ski Member Posts: 171 Member

    Did they do a PET scan? I think you are in the same boat as most people when it comes to knowing if treatment worked. They just keep checking PSA to see if its rising. Right now while on ADT you won't really know unless it starts climbing. Also, I didn't think they do surgery once PCa is outside the prostate. Press your doctors on all your options. Hopefully you won't need them.

  • REB72
    REB72 Member Posts: 36 Member
    edited September 24 #7

    I did have PSMA PET scan. That was how they know it spread to pelvic lymph nodes. That is when it was decided I would be having radiation instead of surgery. They have also taken me off abiraterone. My liver enzymes came back elevated (Ast 61, Alt 188). This worries me tremendously as I have been worried about my liver. I quit drinking alcohol in February but I have a 35 year history of drinking daily. My liver cannot be in the greatest of health. I was only taking 1 abiraterone daily due to financial reasons but I received a grant to pay for this med, so they have had me taking all 4 pills this month. So, now I have been instructed to stop taking this med and have another blood test on Monday

  • Josephg
    Josephg Member Posts: 455 Member

    Were you prescribed Prednisone along with Zytiga? They are usually prescribed together, as Prednisone will minimize/stop any negative impact to the liver and kidneys. I spent 2 years on Lupron/Zytiga/Prednisone cocktail for 2 years, with my PSA and liver/kidney blood draws every 3 months, and my bloodwork always came back as within acceptable limits.

    And yes, results from Europe (less regulation and quicker drug approvals) show that this 3 component cocktail along with targeted radiation has been very effective in treating recurrences, much more effective than radiation alone.

  • REB72
    REB72 Member Posts: 36 Member

    I am taking 5 mg prednisone twice a day. There has been times I have forgotten to take 2nd dose of prednisone. Not very often. I have been tending to take prednisone late at night as I eat late and I am supposed to take with food. We fought really hard to get the zytiga. I just don't want to hurt my liver more then it probably already is. I do have fatty liver disease too.

  • Marlon
    Marlon Member Posts: 110 Member

    Whatever further treatment that might be needed, proton or otherwise, depends on how and where a recurrence is. They have to have a target for proton or other radiation, not just a rising PSA number. It seems to me that the doctors cant make any definite statements without knowing if and where it may show up. Yeah, it's tough being in that wait and see mode.

  • REB72
    REB72 Member Posts: 36 Member
    edited November 12 #11

    I had to reduce zytiga dosage from 1000mg to 500mg due to high liver enzymes. I am having blood tests every two weeks and my liver enzymes have dropped significantly. So, we are continuing at 500 mg. I am still taking orgovyx. I am supposed to take these meds for 2 years. I had another PSMA PET scan the other day which was done as a follow up to my 25 sessions of radiation. I have appointment with urologist on 11/19. They released results of scan. It says no PSMA avid disease is currently demonstrated. I need to discuss this with my doctor but I take this result to mean that scan didn't find cancer or it was too small to detect. Last PET scan before RT found cancer in Prostate and pelvic lymph nodes. Gleason 4+5=9. My current PSA is .06. Down from a high of 30. I hate the ADT meds and do not know if i can handle another 1.5 years on them. I am just wondering what next steps are. I presume it is just monitor my PSA. Being 52, I have a long time for this to come back. I want to stay positive but I also want to be educated as to the likelihood of this cancer returning. It is hard to find stats on the likelihood of this returning. Does anyone know this? What questions should I ask my urologist on follow up appointment? What is the roll of ADT if cancer no longer is present on scans?

  • Josephg
    Josephg Member Posts: 455 Member
    edited November 12 #12

    Unfortunately, nobody can give you a clear picture on where you will be in the future as related to your prostate cancer (PCa), as all cases are different (even if only a little different). Based on what you have said, and adding to my previous reply to you, in my non-medical opinion, you are on the best available path at the present time.

    If you PCa recurs at some point in the future, the location of the lesion will determine what type of additional treatments will be available to you. If the lesion is found to be in a radiation-treatable place through a PSMA scan, you may be offered SBRT radiation, which is targeted high dose radiation, delivered in 3 to 5 sessions. IMO, SBRT is a nothing burger, not at all like the potential side effects associated with IMRT.

    Like myself, you will probably tested every 3 months for PSA, and periodically for Testosterone levels. As long as the PSA is undetectable or stable and low, you will get a reprieve for the next 3 months. While this may not seem like an optimal life setting going forward, if you adjust your mental attitude to accept this new way of life, you will find that you can still achieve much more than an acceptable quality of life.

    If you look at the BIG picture, PCa is one of the better types of cancer that you can have (bitter irony, I know). You could have had pancreatic cancer or brain cancer, or some other type of cancer where your life expectancy is measured in months or only a few years.

    Live your life one day at a time on your PCa journey, in between the periodic 3 month PSA tests. I wish you the best of outcomes on your PCa journey.

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

    Have to concur with the above. Although it is good to be prepared for what might happen, the medical scene changes fairly rapidly (new drugs etc.) and I would not want to speculate what the scene might be five or ten years down the line.

    I also agree that the prescribed therapy should give you hope for the future. The negative PSMA scan and very low PSA are good signs.

  • Buff1977
    Buff1977 Member Posts: 10 Member

    Your diagnosis and treatment plan are very similar to what I went through. PSA 30 Gleason 9 Pet scan was negative however…so no spread to lymph nodes for me. Had the "Triple" treatment of HDR Brachy, 25 session external and ADT with Zytiga also. My final PSA when I stopped all treatment was 0.01. I had 3 years of ADT with a shot monthly. Started with the Zytiga 1 year into the ADT, so I had that for 2 years. My liver numbers never were a factor. I got lucky there also. I took 1 5mg prednisone a day .I was diagnosed in April of 2020. I am 65 years young now so I was just 61 then.

    One thing you need to remember is that your PSA will go up after you stop treatment. My last two tests were 0.34 and 0.33. My radiologist says that is perfectly normal numbers with me still having my prostate.

    Good luck and keep your head up. One day at a time. One PSA test at a time.

  • REB72
    REB72 Member Posts: 36 Member

    Thanks everyone. I guess I just stay positive and take the low PSA and clear scan as a win. I just tend to be skeptical as at every turn in the past 6 months has been more bad news. It appears that this triple therapy is successful at this juncture

  • ly55
    ly55 Member Posts: 4 Member

    so hard to read these comments has the wife of a prostate cancer patient, clearly I cannot know exactly what your going thru physically which is frustrating in being there for my husband. He is in his 3rd yr of treatment prednisone and Zytiga. Hormone suppressant injection every 3 mos. The treatment is really hard dizziness, cognitive decline on difficult days some nausea and headaches. Extreme fatigue and with prednisone extreme weight gain. It’s hard being he cannot drive anymore. This was a shock because his routine yearly prostate exam showed a relatively low number urologist suggested a watch and see but left it to us to do a biopsy. What made my husband decide to get additional testing (early diagnosis) is likely why he is here now. I will not forget the doctors words “time is not on your side” and aggressive treatment started immediately. He has one tumors on ea side of his thigh bone another on his lower spine. Stage 4 Mets, how could this happen without side effects all this time? Yes his side treatment/side effects are brutal I keep pushing him to get palliative care this is a battle for him to except. But to you all I say don’t give up. Here is some positive I want to give to all of you in this difficult time, my husbands tumors on his thighs are no longer visible on his scans this treatment is WORKING his psa is practically zero his numbers are good no ill effects to organs he is struggling some with hypoglycemia his sugar will drop sometimes he manages with food. He has his regular 3 mo ck in with oncologist and I hope he will try to resume palliative care, don’t be afraid to ask for help this will not be easy don’t try to think too far ahead you all still have lives to live and the medical advancements are happening all the time.