Newly diagnosed 38yo

chandler777
chandler777 Member Posts: 3
edited March 2014 in Prostate Cancer #1
I had a psa of 21 in February this year. I was treated with 30 days of Levaquin and psa went to 34. My doctor suggested a biopsy. One week later psa was at 42 and biopsy came back with Gleason 4+5 on nine samples and 4+4 on one. Doctors are discussing hormone therapy and chemo and to plan an open surgury in about a year after hormone therapy. I am looking for feedback from anyone with similar numbers.

Comments

  • fcatroneo
    fcatroneo Member Posts: 89
    #2
    Chandler, I am not a doctor, but I do not know why your doctor wants to wait. Just a suggestion, I would get a second opinion. I would think you would have surgery (RP or Robotics) since you are very young then get involved in Hormonal therapy.
    Again, I am not a doctor this is just my suggestion as a PC survivor.
    I am sure you will get some additional responses from the network.
    Thanks for coming to the network. I hope we can help.
  • Bamfam
    Bamfam Member Posts: 28
    #3
    Chandler -- I am sorry about your DX - especially at such a young age.

    I would look for a second opinion -- at a cancer center or major regional hospital. If you make the appointment -- get the biopsy report and your PSA history. Don't be afraid to travel if you must.

    Bob
  • Photon
    Photon Member Posts: 57
    #4
    Chandler - my Gleason's were the same as yours. I agree with the others that you need to seek a second opinion. Have you had an mri to check whether there is capsule extension and a nuclear bone to check if there are bone metastases. With your numbers these should be checks that determine what treatment you should undergo.

    I had an extension but no metastatic disease so the 3 opinions I had said get it the tumour out of the body. The operation went ahead after they had checked my lymph nodes.

    I am not saying my treatment is right for you because you are much younger and therefore have a longer sexual life in front of you, so the good doctors might be trying to cure you without an operation that almost certainly if you have an extension will be non nerve sparing. My family are doctors and my sister was responsible in the UK for providing best practise for cancer treatments to the medical profession. The treatment you are being recommended is very different from mainstream.

    By the way you can survive these numbers. I am doing very well after 3 years.

    Best wishes
  • rogermoore
    rogermoore Member Posts: 264 Member
    #5
    Chandler,
    I am sorry about your diagnosis, however, don't consider it the end of the world. Keep the positive attitude, I know it is hard sometimes, and make logical steps toward your cure.

    First, I agree with all the other responses. Get a second opinion. Take your records with you and go to a well-respected surgeon. Once the diagnosis has been confirmed, make the best decision you feel comfortable with. This is a very critical decision, since it does involve your body. Be sure you are satisfied with you decision and move forward.

    In my opinion, as humble as it may be, I would definitely consider surgery, since the PSA appears to be increasing rather quickly. Also, as I am sure you have already heard, if radiation is selected as you first option, and it fails, surgery has been eliminated as a second option. I had open surgery 6 1/2 yrs ago and am now leading a perfectly normal life.

    Best of luck

    Roger
  • chandler777
    chandler777 Member Posts: 3
    #6
    Bamfam said:

    Chandler -- I am sorry about your DX - especially at such a young age.

    I would look for a second opinion -- at a cancer center or major regional hospital. If you make the appointment -- get the biopsy report and your PSA history. Don't be afraid to travel if you must.

    Bob

    Bamfam, Thank you for the reply. I am at MD Anderson and it is a well respected center, but they are not big in robotics as far as I know. I have another urologist outside MD Anderson who does 300 robotic surgureys a year. He does not sound to promising about nerve sparing. Obviously living is the priority and he does not know why they are wanting to wait on the surgury.
  • chandler777
    chandler777 Member Posts: 3
    #7
    Photon said:

    Chandler - my Gleason's were the same as yours. I agree with the others that you need to seek a second opinion. Have you had an mri to check whether there is capsule extension and a nuclear bone to check if there are bone metastases. With your numbers these should be checks that determine what treatment you should undergo.

    I had an extension but no metastatic disease so the 3 opinions I had said get it the tumour out of the body. The operation went ahead after they had checked my lymph nodes.

    I am not saying my treatment is right for you because you are much younger and therefore have a longer sexual life in front of you, so the good doctors might be trying to cure you without an operation that almost certainly if you have an extension will be non nerve sparing. My family are doctors and my sister was responsible in the UK for providing best practise for cancer treatments to the medical profession. The treatment you are being recommended is very different from mainstream.

    By the way you can survive these numbers. I am doing very well after 3 years.

    Best wishes

    Photon, I am glad to hear you are doing well and I hope your reports continue to be good. My bone scan came back clean. The CT showed some lymph node involvement, some extention in to the bladder and seminal vesicles. I have a follow up today and will know more later.
  • Bamfam
    Bamfam Member Posts: 28
    #8
    chandler777 said:

    Bamfam, Thank you for the reply. I am at MD Anderson and it is a well respected center, but they are not big in robotics as far as I know. I have another urologist outside MD Anderson who does 300 robotic surgureys a year. He does not sound to promising about nerve sparing. Obviously living is the priority and he does not know why they are wanting to wait on the surgury.

    Well, you certaintly are getting some good responses here.

    A few other questions to consider when you speak with the docs: what type of treatment will get me the best results? Robot vs radical?? What are your experiences with men like me -- in my situation?? If need be - get a referral for a radiation oncologist also -- see what they have to say.

    Living is the priority -- of course. But, youre a young guy also. Ask the doc who does the robotic procedure why he thinks nerve sparing isnt that promising. Also -- don't do any of this alone. Bring along wife, girlfriend, buddy, etc.


    Good luck and God bless-- keep us informed.

    Bob
  • Photon
    Photon Member Posts: 57
    #9
    Chandler

    Hope today went well for you. I have lymph node involvement and am being treated with Casodex(bicalutamide) which puts my psa to zero and has less side effects than Lupron. I do 3 months on and 6 months off or until my psa rises to 0.03 and then I back on it. As I said yesterday I feel well on it.

    Photon
  • 2ndBase
    2ndBase Member Posts: 220
    #10
    I had the same numbers at age 52 and took one shot of Lupron and 40 rad treatments and no surgery. Surgery is not always the answer and causes a lot of stress. If you get rid of all stess you will survive much longer. I have outlived my dx by two years and plan to keep on living at least another 5 or so.
  • lion1
    lion1 Member Posts: 241
    #11
    chandler777 said:

    Photon, I am glad to hear you are doing well and I hope your reports continue to be good. My bone scan came back clean. The CT showed some lymph node involvement, some extention in to the bladder and seminal vesicles. I have a follow up today and will know more later.

    Chandler,
    I agree with a lot of the input. For me it was an LRP with Dr Arnon Krongrad, Adventura, FL. Please check out his website. Just type in his name. He's one of the best in the country. God Bless.

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