New diagnosis in Hawaii

curren
curren Member Posts: 8 Member
in Prostate Cancer #1


Hi everyone, Sorry if I sound a little scater brianed but was just diagnosed. PSA 15 (in Sep. 2019 PSA was 3) I have had CT scan April 9th nengative, MRI a week ogo showing something insde the prostate and two spots on my tailbone, A Bone scane showing two hot spots on tailbone but no wear else on skeleton. Did prostrate biopsy and 5 0f 6 cores showes 60 to 90% Gleason score 9 (4+5) grade group 5. Dr is starting me on Hormone therapy. I want to go to a cancer center preferably on the Weat coast, any recommendations and or thoughts on my situation would be greatly appreciated!



 

Comments

  • Clevelandguy
    Clevelandguy Member Posts: 1,180 Member
    edited May 2020 #2
    Get going

    Hi Curren,

    Sound like from your rapidly increasing PSA number means you cancer is agressive.  I know my PSA numbers only increased about 1 point per year and I was a 3+4.  Find the best doctors + facilities you can to get to get the best chance of treating your cancer.  If it was me and the cancer had escaped the Prostate I would not have surgery but some form of radiation treatment. The sooner you start treatment the better the results in my humble opinion. The American Cancer Society has some good info on treatment protocols on their website.

    Dave 3+4

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #3
    Aloha

    Curren,

    Welcome to the board. I wonder your age. I am surprised for the decision on the sextant biopsy (6 needles) which nowadays is rare. The twelve or fourteen needles template is now more common in prostate biopsies. Your doctor may have chosen the smaller gun due to the positive image or due to a symptom you have had which could be indicative of the presence of the cancer. In any case, the results are valid and the numerous positive cores together with the aggressive Gleason score of 9 (4+5) puts your case in high risk for spread, even if the bone lesion is found to be related to other issues.

    As commented by the survivor above I also think that you should investigate on treatments involving radiotherapy. The combination of hormonal therapy (ADT) plus radiation (RT) is typical in cases like yours. However, some doctors recommend to young patients a more aggressive approach that involves surgery plus radiation plus hormonal. It all depends if those spots in bone can be checked (biopsy) to confirm prostate cancer metastases (PCa).

    Your case regards a voluminous cancer that typically has extraprostatic extensions associated. Probably there exist also infected lymph nodes which could be the reason for the fast doubling of the PSA.

    All treatments involve risks and cause side effects that will deteriorate the quality of life of the patient. More modalities mean more risks and more side effects. I recommend you to get a book on prostate cancer to be informed on the details before visiting the doctor in Hawaii or in the main land. You should do it now to be prepared for the next consultation where probably you will discuss about options.

    Another aspect regards the issues on treatments interaction with other health issues. Hormonal therapies usually lead to bone loss which in bone metastases cases requires adding bisphosphanates (Prolia, etc). Guys with ulcerative colitis would need a more careful study to direct RT rays. That usually is diagnosed with a colonoscopy that should be done in advance to be certain that what we chose is proper.

    In your shoes, I would prepare a list of questions to the doctor and take notes, and then discuss with your family to reach the final decision.

    Here are some links that may help you understanding things;

    http://www.mayoclinic.org/diseases-conditions/prostate-cancer/basics/preparing-for-your-appointment/con-20029597

    https://www.cancer.org/cancer/prostate-cancer/detection-diagnosis-staging/talking-with-doctor.html

     

    Best wishes and luck in this journey.

    VGama

     

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    edited May 2020 #4
    .

    I live in Southern California, and am familiar with the institutions and doctors here.

    As you are aware a diagnosis of a Gleason 9 with probable spread is very serious, but it can be very manageable having the best medical care done in a coordinated way.

    You will need to have a medical oncologist lead you medical team. You want the very very best that you can find and afford.

    Here in Southern California there is a group, Prostate Oncology Specialist with doctors, Turner, Scholz and Lam. These doctors are world renown, and specialize only in prostate cancer. There are only about 25 or 30 doctors who do this. Many men in the prostate cancer group that I attend, go to this group. They use various outside facilities to include UCLA.

    Another option is going directly to UCLA, a major center of excellence here. UCLA has all the bells and whistles of diagnostic tests, to include but not limited to state of the art image testing that are simply not available in most other facilities. A name of a medical oncologist at UCLA is mathew Rettig.

    Hope that this helps. Feel free to contact me.

    Aloha

  • curren
    curren Member Posts: 8 Member
    edited May 2020 #5
    hopeful and optimistic said:

    .

    I live in Southern California, and am familiar with the institutions and doctors here.

    As you are aware a diagnosis of a Gleason 9 with probable spread is very serious, but it can be very manageable having the best medical care done in a coordinated way.

    You will need to have a medical oncologist lead you medical team. You want the very very best that you can find and afford.

    Here in Southern California there is a group, Prostate Oncology Specialist with doctors, Turner, Scholz and Lam. These doctors are world renown, and specialize only in prostate cancer. There are only about 25 or 30 doctors who do this. Many men in the prostate cancer group that I attend, go to this group. They use various outside facilities to include UCLA.

    Another option is going directly to UCLA, a major center of excellence here. UCLA has all the bells and whistles of diagnostic tests, to include but not limited to state of the art image testing that are simply not available in most other facilities. A name of a medical oncologist at UCLA is mathew Rettig.

    Hope that this helps. Feel free to contact me.

    Aloha

    Aloha and thank you for your support!  I am 62 years and this is my second fight with cancer in my life time. I had melanoma that had matastasized to the outside of a lymph node and with the help of John Wayne Cancer Center beat it 25 years ago. "I'll beat this one"  My first symptom was last July with difficulty emptying my blader and some blood after sex. My doctor gave me antibiotics for infection. Went back to the doctor in Sep. and he ordered a psa tst that came back 3 same as last years test, did the ursual prostrate exame and told me I had enlarged prostrate like many men my age. More antibiotics afer seaing a Urologist second PSE test of 13  and then a third of 15 beginning of March. Was able to get scanes started beginning of April and here I am now. Urologist has stated me on Casodex 50mg tablets and injection of Lupron 22.5mil. My family has very good experience with Mayo Clinic so I am in the process of getting my information to them so we can form a plan to fight!!!!

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #6
    "I'll beat this one"

    Curren,

    You surely are right. You will beat this one again too. However you should fight the bandit with knowledge. Quite common we blame the cancer for the consequences acquired from treatments. In my 20 years as survivor the only times the bandit has messed up with me was at those freaking moments before each PSA test (now numbered at about 100).

    At your age I would be careful with what you choose. Balancing the treatment with quality of life issues is important and should be announced to the physician treating us. They will prioritize cure above all but at what risks. Probably having a medical oncologist at front (as commented by hopeful above) would be a good idea as you will have to travel several times to consultations at the clinic on main land. You can try advancing with the requisites that the consultation at Mayo may request by sending them copies of all data at your disposal (biopsy report, image studies, blood tests, etc) in addition to the results of a DEXA scan (bone density) and colonoscopy, which you can do in Hawaii. I would also get a testosterone test to verify the effect of the hormonal treatment. Proceeding like that will save you the need in travelling several times to get simple answers. Call them to verify possibilities.

    The truth on the facts is that you will be the one to decide on a treatment. Mayo Clinic and their consulting doctors will help you in understanding the facts but in the end they will request you to sign an agreement before treatment reliving them from any responsibility on the outcomes. I wonder if the doctor in Hawaii has done that before administering ADT.

    Casodex is an antiandrogen pill acting on the cancerous cells receptors. The 3-month shot Lupron will drive you into chemical castration. The intent of ADT is to avoid the cancer from feeding on circulating testosterone. I would think that by now your PSA is at lows of 1.0 ng/ml (testosterone at <30 ng/dL). This is good but the bandit has just entered into a sleeping mood. It gives you time to get educated on the matters while you formulate a decision. Probably it will also cause negative scans on bone (false negative) if Mayo requests you to get additional scans.

    The side effects of ADT strike at about one month post injection of Lupron. Fatigue and mood changes are the first being noticed. Some guys got it badly but others only experience mill symptoms, accepting the treatment very well. ADT also affects organs dependent on testosterone for its due function. The kidneys and cardiovascular components will surfer so that one needs to be vigilant with full panel blood tests done timely. Your Hawaiian GP or MO can guide you through all requirements while the specialist Urologist or Radiotherapist can guide you through the treatment. I hope they give you peace of mind.

    Best wishes,

    VGama 

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