Newly Diagnosed as "High Risk" and Confused Beyond Words

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Comments

  • Coldbiker
    Coldbiker Member Posts: 23 Member
    edited June 2018 #42
    TimeBomb

    Look at it this way tick...tick...tick, You have delayed treatment for various reasons, valid for you at the time. Time passing with no treatment, with your numbers,  sounds like a fools errand of trying to play cancer expert by internet. Sounds harsh but by your words top people have advised you. Obviouly you are a smart guy, pushing intellectually  for the perfect answer, which to me means the answer you want, might  not the best strategy. To continue the space exploration theme, in the immortal  words of Allen Shepard "Light this Candle"  

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 409 Member
    Regulator said:

    VG,

    I understand and appreciate your skepticism surrounding the recent 'negative' PetScan results, and whether or not the imaging test was even conducted properly. This too has been a concern of mine from the very beginning. To help answer your question regarding the procedure itself and how it was conducted, including the timing of the intravenous injection of radioisotope and subsequent scanning, here is the quoted text from the radiologist's summary report:

    "PROCEDURE:

    The patient was evaluated with a dedicated PET/CT scanner. Upon arrival, the patient's fasting fingerstick blood glucose level was 119 mg/dL. 16.4 mCi of 18-FDG was injected IV at 11:42 hours, and 87 minutes post-injection, CT attenuation-correction images and then subsequent PET images (attenuation-corrected and emission-only images) were obtained from base of skull to thigh. PET, noncontrast-attenuation CT, and fused PET/CT images were then reformatted and reviewed in the axial, sagittal, coronal and 3-D maximum intensity projection planes."

    In closing, despite my rather extreme biopsy and PSA particulars, I am still holding out hope for RP surgery, and I have several more appointments in the days immediately ahead, but one way or another, that decision will be made for me by circumstances, within the next 10-14 days.

    Thank you again for your continued contributions, expertise and support.

    I will give a different

    I will give a different perspective from one of my Heroes, Winston Churchill.

    "Perfection is the enemy of progress".

    It is a long held belief in military circles that it is better to take action and resolve issues as they arise than take no action. That is not to say "Action this day!!" (his other favourite) needs to be an immediate consequence as too hasty an action could be disaster. Merely to say that there has to be a strict limit on procrastination before the enemy (in our case PCa) takes a foothold and starts invading.

    Something to bear in mind...

    C

    PS As a Brit, I do love writing "favourite" on an American board :):)

  • lighterwood67
    lighterwood67 Member Posts: 329 Member
    Old Salt said:

    Essentially two choices

    1. Surgery and take the risk that some cancer cells have escaped (could be 'local' to the periphery of the prostate) or (micro)metastases to other parts of the body. In the latter case it MIGHT be necessary to follow up with radiation in case the PSA rises above a certain limit (0.2 is often used, but some use an even lower limit for action). 

    2. Radiation (for high Gleason cases, typically a combination of two kinds, like IMRT + brachy). The radiation field could include peripheral tissues, as deemed necessary by the Radiation Oncologist.

    Micrometastases elsewhere in the body might be inhibited (I hate to use the word eradicated) with ADT. In other words, a triple assault.

    My case (many Gleason 9 foci) wasn't too different from Regulator's and I choose the latter course of action. Moreover, I was deemed too old for surgery anyway (sob). I choose an experimental radiation strategy, SBRT first, followed by IMRT because the clinical protocol appealed to me and the academic investigator had an extensive record in that area. 

    PS: I second Max's post.

    PS#2: Medical science is usually not absolute; it's typically about probabilities (and more so with prostate cancer).  The patient has to carefully weigh the options and then decide; not easy. 

    Age

    Just curious of how old were you when you were told you were too old for surgery?  I was 67 when I had my RP.  This is for Old Salt.

  • Old Salt
    Old Salt Member Posts: 952 Member
    edited June 2018 #45

    Age

    Just curious of how old were you when you were told you were too old for surgery?  I was 67 when I had my RP.  This is for Old Salt.

    How old?

    I was almost 74 at the time, and in reasonably good shape for that age (not overweight etc). 

  • Regulator
    Regulator Member Posts: 42

    I will give a different

    I will give a different perspective from one of my Heroes, Winston Churchill.

    "Perfection is the enemy of progress".

    It is a long held belief in military circles that it is better to take action and resolve issues as they arise than take no action. That is not to say "Action this day!!" (his other favourite) needs to be an immediate consequence as too hasty an action could be disaster. Merely to say that there has to be a strict limit on procrastination before the enemy (in our case PCa) takes a foothold and starts invading.

    Something to bear in mind...

    C

    PS As a Brit, I do love writing "favourite" on an American board :):)

    Thank you for your comments

    Thank you for your comments and your point has been taken. I have since met with a radiation oncologist and I now have a solid treatment plan in-place, so for the most part, the research has ended, but I can assure everyone concerned that the research and associated time spent, were well worth it.

    As for Winston Churchill and his wisdom, no doubt - a truly brilliant man! Many great quotes, but my favorite is . . .

    "The best argument against democracy is to spend 5-minutes with the average voter."

    That single, brilliant quote, beautifully summarizes just how the once 'shining city on a hill' known as America met with her eventual demise. 

     

     

  • Regulator
    Regulator Member Posts: 42
    Coldbiker said:

    TimeBomb

    Look at it this way tick...tick...tick, You have delayed treatment for various reasons, valid for you at the time. Time passing with no treatment, with your numbers,  sounds like a fools errand of trying to play cancer expert by internet. Sounds harsh but by your words top people have advised you. Obviouly you are a smart guy, pushing intellectually  for the perfect answer, which to me means the answer you want, might  not the best strategy. To continue the space exploration theme, in the immortal  words of Allen Shepard "Light this Candle"  

    Thank you for your time and wisdom

    Thank you for your time and wisdom.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,752 Member
    Regulator said:

    Thank you for your comments

    Thank you for your comments and your point has been taken. I have since met with a radiation oncologist and I now have a solid treatment plan in-place, so for the most part, the research has ended, but I can assure everyone concerned that the research and associated time spent, were well worth it.

    As for Winston Churchill and his wisdom, no doubt - a truly brilliant man! Many great quotes, but my favorite is . . .

    "The best argument against democracy is to spend 5-minutes with the average voter."

    That single, brilliant quote, beautifully summarizes just how the once 'shining city on a hill' known as America met with her eventual demise. 

     

     

    .

    .

  • skipperben
    skipperben Member Posts: 6
    edited June 2018 #49
    high psa of 67

    you story is very similar to mine.  I am 64 and was diagnosed with prostate cancer in march.  I was using a urologist for my case.  I wrote on this page and was advised to stop seeing the urologist and go with a oncologyst.  My original psa was 34 and climbed to a 67.  my nelson score was a 4+5 =9. my biopsy showed all sectors to be cancerous.  Really looking by.  I went to Moffitt cancer center in Tampa.  I live 30 miles from there.  I was put on Casodex daily, and Luprone and docetaxel every 3 weeks along with a chemo cocktail .. again every three weeks.

     

    My Psa after 3 weeks went from 67 to 24.  3 Weeks later my psa is 2.5.  I have re-read the clinical notes and what they say is that they are trying to maintain my quality of life.  When you read that.. it's shocking.. i feel great.  My urination seem close to normal.. and I only get up once a night.  with no pain.  I work full time. and golf twice a week in 100degree temps.

     

    I don't know if this helps.. I'm just getting started my self.  Good luck on you journey

  • skipperben
    skipperben Member Posts: 6
    edited June 2018 #50
    high psa of 67

    I can't advise you on treatments.. but I went on to see an Oncologyst and my psa went from 67 down to 2.5 in 6 weeks.  They are trying to maintain my quality of life. and that's it.  I was also inoperable.  and considered stage 4.  I feel great. work full time and golf twice a week in 100degree weather. 

    Stay positive and don't be afraid to go to another doctor

  • Regulator
    Regulator Member Posts: 42
    SkipperBen,

    SkipperBen,

    Thank you for your comments and I apologize for being so late in responding. I am currently on 10-day vacation through 7/13, and still on Casodex, with my first Lupron shot scheduled for 7/17, but yes, our respective diagnoses appear to be rather similar. Not quite sure how you were diagnosed as Stage 4 (unless you had one or more positive sign of mets from diagnostic imaging, etc.?), but my scans have all been negative and the experts tell me that I'm Stage T3b or "locally advanced".

    At this point, I've more or less decided to proceed with low-dose rate (LDR) brachytherapy, followed by beam therapy (IMRT), and short-term (6-months) of continued ADT (Lupron). Have you decided on any future treatment methods or are you planning on simply continued ADT/Chemo?

    Whatever the case, thanks again for your responses, and best of luck to you too in your fufure efforts.