Wondering what steps to take next

jbaugnet
jbaugnet Member Posts: 3
in Prostate Cancer #1

Hello all,

My name is Jessie. My dad was diagnosed in the beginning of the year with prostate cancer. He had been going to the Dr and they never ran a PSA in 5 years on him. It came back over 9. He was 3+4 and 4+3. They took out his prostate back in June. He was told that they didn't get it all. Today he went back to the urologist. She told him the PSA was at 0.47 and that was too high for her. He goes in on Wed for a CT scan to see where the cancer spread. Then next Tues we will be meeting with the Radiologist to find out our next course of action. He is only 65, great health; works out everyday lifting and cardio at the gym. His urologist told him that worse case scenario, he will have 5-10 years. So needless to say, my family is freaking out.

 

So my question for anyone is: What are the questions we should be asking when we get the CT back? Any suggestions to give the Dr on things that might help beyond radiation? Hormone treatment? They told us today that if it spread above the hips that radiation won't help. Is there any help or tips that anyone can give us. We are new at this and it is a very scary time, as I'm sure you are all aware and have gone through your own tough times. Any help, info, suggestions, etc would be very helpful. Just trying to not scan the internet and see all the negative stuff out there for cancer that has spread beyond the prostate.

 

Thank you! Good luck with all you are going through as well.

Comments

  • Clevelandguy
    Clevelandguy Member Posts: 1,206 Member
    #2
    5 to 10?

    Hi,

    Sorry to hear your Dad is still fighting the bandit.   First of all, how can the doctor predict 5-10 yrs. without knowing the spead of the cancer outside of his Prostate, without even seeing the CT scan results?  Second, I don't get the comment about if its above the hips radiation won’t help? Can‘t they treat cancers with things like Cyberkife if its in his lungs or on his spine? There are chemo drugs and drugs that reduce testosterone (hormone drugs) that also help knock down his cancer.  Maybe also some clinical trials for new drugs your Dad might be a candidate for in the future. For a doctor not to test a 60 yr. old man for PSA throws up a red flag in my eyes.  If it was me I would be getting a second opinion on further treatment based on what the doctor has done and said to your Dad so far. i feel your Dad needs a doctor(s) with a more proactive approach than he has received to this point.  Just my 2c worth, the fight has just begun and is a long way from over.

    Dave 3+4

  • Georges Calvez
    Georges Calvez Member Posts: 547 Member
    #3
    Worse case scenario

    Hi there,

    I wish doctors would not do predictions.
    With a PSA of 0.47 the CT scan is likely to show absolutely nothing as the tumours are just too small to see.
    It is most likely that the cancer is contained within the prostate bed and can be treated with salvage radiation and hormonotherapy for a start.
    You and your dad are just at the beginning of a long road and you will only learn how long that road is when you have been on that road for more than a few years.
    Prostate cancer that is outside the prostate can proceed quite quickly or very slowly, you cannot say much at this stage.
    Quite a lot of men today find themeselves in a situation where the cancer can be controlled with ADT for decades.

    Best wishes and a warm welcome to the club that none of us wanted to join,

    Georges

  • jbaugnet
    jbaugnet Member Posts: 3
    #4
    Clevelandguy said:

    5 to 10?

    Hi,

    Sorry to hear your Dad is still fighting the bandit.   First of all, how can the doctor predict 5-10 yrs. without knowing the spead of the cancer outside of his Prostate, without even seeing the CT scan results?  Second, I don't get the comment about if its above the hips radiation won’t help? Can‘t they treat cancers with things like Cyberkife if its in his lungs or on his spine? There are chemo drugs and drugs that reduce testosterone (hormone drugs) that also help knock down his cancer.  Maybe also some clinical trials for new drugs your Dad might be a candidate for in the future. For a doctor not to test a 60 yr. old man for PSA throws up a red flag in my eyes.  If it was me I would be getting a second opinion on further treatment based on what the doctor has done and said to your Dad so far. i feel your Dad needs a doctor(s) with a more proactive approach than he has received to this point.  Just my 2c worth, the fight has just begun and is a long way from over.

    Dave 3+4

    Thank you so much for your

    Thank you so much for your response.  We were really upset and the dropped ball with the PSA.  Not much we could do after finding out. We are going to find out what the CT results are next week. Just don't know what to ask and expect. Thank you again for your help. 

  • jbaugnet
    jbaugnet Member Posts: 3
    edited September 2019 #5
    Georges Calvez said:

    Worse case scenario

    Hi there,

    I wish doctors would not do predictions.
    With a PSA of 0.47 the CT scan is likely to show absolutely nothing as the tumours are just too small to see.
    It is most likely that the cancer is contained within the prostate bed and can be treated with salvage radiation and hormonotherapy for a start.
    You and your dad are just at the beginning of a long road and you will only learn how long that road is when you have been on that road for more than a few years.
    Prostate cancer that is outside the prostate can proceed quite quickly or very slowly, you cannot say much at this stage.
    Quite a lot of men today find themeselves in a situation where the cancer can be controlled with ADT for decades.

    Best wishes and a warm welcome to the club that none of us wanted to join,

    Georges

    Thank you. All we heard was

    Thank you. All we heard was that it spread and we were to see a new Dr and that there wasn't anything left for the urologist.  I never heard of a prostate bed. Thank you for giving us hope that it didn't spread too fast. That there is still hope. I just hate seeing a man that worked hard his whole life as a fireman/EMT looking so defeated and talking like he isn't going to be around for the long-term. Thank you for the gift of hope. I know we have to wait and see, but any info helps the morale.  Thanks

  • eonore
    eonore Member Posts: 185 Member
    #6
    jbaugnet said:

    Thank you. All we heard was

    Thank you. All we heard was that it spread and we were to see a new Dr and that there wasn't anything left for the urologist.  I never heard of a prostate bed. Thank you for giving us hope that it didn't spread too fast. That there is still hope. I just hate seeing a man that worked hard his whole life as a fireman/EMT looking so defeated and talking like he isn't going to be around for the long-term. Thank you for the gift of hope. I know we have to wait and see, but any info helps the morale.  Thanks

    You’re still in the game

    Hi,

    Your dad‘s urologist sounds like a tool.  I would get him to a cancer center of excellence to consult with a top notch radiation oncologist.  If you tell us where you are located, we can make some suggestions.  Your dad sounds like an excellent candidate for what is called salvage radiation, along with a period of hormone therapy.  The purpose of this treatment is to finish the job, killing the cancer that remains in the prostate bed and pelvic area.  I just finished this procedure myself, and it is not the end of the world.  More than likely your dad has many years left, and the uro has alarmed you unnecessarily.  Both of you keep your chins up.  There is nothing in the information you have presented that suggests that a cure isn’t still possible.

     

    Eric

     

  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    #7
    Blindfold radiotherapies is like thronging arrows in the dark

    Jbaugnet

    Welcome to the board. You got good opinions from above survivors. I agree that you should look for a top notch radiation oncologist. I would recommend you to get a second opinion on what will be proposed by this radiologist introduced by the urologist. Sincerely I do not like the way the urologist preceded with the matter on your dad.

    We need more information on your dad’s status to suggest you anything. Can you share the contents of the pathologist report on the prostate specimen? What is the pathological stage?
     Do you have any previous image study (CT, Bone scan, MRI, PET) done before surgery? What has been found?
    All this information is at the hands of his urologist and you should have a copy as it is needed to get consultations and make decisions on further treatments.

    Regarding your above comments, the PSA after surgery should be in remission levels of <0.05 ng/ml. The higher value (0.47) represents surgery failure indicating the need for further treatment. In such cases one can have adjuvant radiotherapy administered straight or wait for declared recurrence and follow with a salvage treatment that typically involves a combination of ADT (hormonal) plus SRT (radiation) or chemo.

    Adjuvant RT seems to perform better that the SRT under the same principle in using radiation as the therapy of choice. However, one needs to be certain that the cancer is solo localized (at the prostate bed) as this is the area to be covered by the radiotherapist in a blind treatment. That is the reason why his urologist demanded a CT, but unfortunately this exam rarely detects anything smaller than 1 cm in size. The only exam that manages to locate suspicious cancerous tissues is the PET scan as it identifies at cellular level (not volumetric). Instead of the CT I would request to have a MRI as this manages to identify better distant lymph nodes involvement, which should be included in the protocol of the radiation.

    I had SRT in 2006. It was done in 37 sessions every day (20 minutes) except on weekends. The facilities were located close to my home so that I could travel in my car easily. This is something you need to consider for your case.
     Initially I got the opinions of two radiotherapists. One of my questions was about the field/zones he would be radiating and the protocol (total Grays and number of sessions). I also inquire on the assurances he could give that the whole cancer was located at those zones. I also inquire on the equipment specifications, in particular the make, year of manufacturing and last maintenance date. Regarding the treatment, I inquire about the contents of any preparedness necessary before each session and how to cope with the side effects and symptoms. The outcomes will depend much on the experience of the team doing the treatment and the equipment/facilities.

    Here are some ideas to formulate your List of Questions;

    https://www.macmillan.org.uk/information-and-support/treating/radiotherapy/radiotherapy-explained/questions.html

    https://www.iaea.org/resources/rpop/patients-and-public/radiotherapy

    In any case, as Cleveland comments above, “the fight has just begun and is a long way from over“ .

    Best wishes and luck in this journey.

    VGama

     

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