I found this post by RMontana on the Active Surveillance forum and think it deserves more attention and discussion. Wish that every new member here would read it. It is never too late to think and operate in this mode. A lot of this is applicable to Those of us with Advanced PCa.
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Do-Over List for PCa Patients - What Would You Do Different if Only you Could; My Personal Journey
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RMontana•
16 days ago•1 Reply
1. Loyalty; you don’t owe your doctor any. If you sense need to change providers strike out.
2. 2d 3d 4th n 5th Opinions; get as many doctors to review your case as you can. Don’t stop until you are satisfied you have 3 doctors telling you the same thing. Insurance will pay for this.
3. Baselines; get baseline tests for everything. Bone density, PSA levels, CBC blood levels, blood pressure…every time you enter a new phase of treatment make sure you know where you are starting from physically and physiologically. Doctors wont require these tests. If you don’t have a baseline how do you know you have been ‘impacted’ by your treatment and to what degree? Baffles me why doctors don’t require more baseline testing.
4. Advocacy; no one but I mean NO BODY is going to be a better advocate for your health than you are. Do not depend on your Doctor to watch our for your health; they are busy treating symptoms…act before you get them.
5. Knowledge; in the age of the Internet there is no excuse for ignorance…stupidity is knowing the wrong thing; ignorance is knowing nothing…know your disease, research you case, watch YouTube medical journals until you are certain you understand your condition. THEN go armed with questions to as many doctors as you can…be satisfied they have considered your questions and addressed your concerns.
6. DRE; its not a guarantee of safety. My prostate was 1/3 full of tumor and neither of my two Urologists felt anything; it was in the front part of my gland (transition zone) where it was not palpable…PSA should guide your search for the truth.
7. PSA 4.0; is not a guarantee of safety. From what I understand its basis is simply 2 times the standard deviation of the average PSA of the original 1980’s cohort that helped establish this marker as a PCa diagnostic tool…not kidding; it means NOTHING…at age 60 your PSA should not be higher than 1.0…if its 2-3 you need to be referred ASAP.
8. Parametric Pelvic MRI; for my Sons they will start out their lifelong monitoring of PCa with a baseline MRI…see what they have at the time they start their journey. Pay for the darn test if its not covered. Then if you have a rising PSA and a negative DRE AND your PSA is above the normal level expected for your age, get an MRI ! Rule out any tumor; don’t wait for the PSA to keep rising (as I did) then demand one when its too late…use the MRI as a ‘uber’ DRE as it should be!
9. Genomic Testing; if you do a Biopsy make sure its guided by your PaMRI (see note 8)…then get the Gleason score for the plugs as it is a useful metric to have; one that will be used with many nomograms to help you manage your disease. But also send the Biopsy specimens for genomic testing; Decipher is what I would suggest and it’s the best…use the combination of the GS + Genomic rating to choose your treatment. GS alone is not enough; like knowing you have ice cream but not what flavor it is…High GS and Low Genomics are treated one way and Low GS with High Genomics another…they both help you manage your disease. A high Genomic score may mean you are a high risk patient regardless of low GS.
10. Surgery n Selecting a Provider; you need to have the knowledge of what is coming if you have surgery for your PCa (cant address RT as primary treatment, but will for early Salvage). At your appointment with your surgeon you should expect to have 1) the doctor, 2) a Erectile Disfunction and 3) a Continence specialist present. If the facility you are going to use does not include these three branches of treatment FROM THE GET GO, seek another facility. You have to know what to do before and after surgery to a) protect your erectile tissue from damage and b) recover continence after surgery. Don’t leave these last two issues (ED and continence) to chance; surgeons really don’t focus on these; if you are alive after treatment they are good…
11. Salvage Radiation; if you have recurring PSA after surgery consider eSRT (early salvage radiation). Lots of studies now show this is linked to prolonged progression free survival and OS for high risk PCa patients (see 9 above). Get as dry as you can before eSRT and know that whatever leakage you have going in is what you are going to have for the rest of your life. If you wait for more continence do it on ADT, don’t allow the PCa to grow…but if you get radiation before you are dry you are never going to be dry. I was leaking ‘less than one pad’ a day and choose to do RT as no one could or would tell me if the cells could spread even under ADT treatment if I waited another 6 months…I opted for safety and am now incontinent at a very low level, but permanently so…my choice…
12. VED; vacuum erection devices are prescribed but never explained as to what they are really good for…mostly they are prescribed for erections with which to try and have relations with your partner. A larger issue is that they must be used by men like me who cannot tolerate penile injection treatments for the pain they cause. You must stretch and exercise your penile tissue continuously or it will atrophy and shrink…you can and will lose length and girth if you don’t use a VED or injections regularly…I was never told this and only after a year into recovery did I notice penile damage after which I started using the VED regularly…am scheduled this year for a penile implant…BUT if you don’t protect your length and girth the implant is not going to give it back…be forewarned. Protect what you have and if you recover erectile function naturally you can proceed with more of what you were born with. If you don’t and you need an implant then you go into the procedure with what you have left…if you don’t exercise your penile tissue it will atrophy and not come back…yeah.
13. ADT; I was on Lupron for 6 months pre RT then 15 months post RT…21 months total. I did not suffer hardly any symptoms. But I committed to a regime of 3 days a week in the Gym with weights, daily bike rides and power walks on the weekend…basically 7 days a week…I was obsessive about this and for me it worked…they say the more you exercise the fewer symptoms you have. Also, ADT has a significant impact on your erectile tissues; it will damage your penile tissue during long term use so see the note a 11 regarding the VED or injections…use it or lose it permanently…
14. Act don’t Wait; PCa is a process that is like having a series of ‘check valves’ along the way down a long tube…you can go forward but you can never go back…so this makes men hesitate and do nothing…whatever you do don’t do nothing…PCa waits for no man and it keeps moving forward even if you don’t. Use these and other tips to get smart, ask good questions, weigh the odds, make a decision AND JUST DO IT! Each step of the way you revise and review what has happened, rev up the same process and do it again…the only way PCa wins is if you give up…to quote Winston Churchill; ‘never give up.’ Cheers
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RMontana profile image
RMontana
Newly diagnosed for high grade Prostate Cancer
Protocols For Cycling T, or T use in Metastatic Post ADT
How long does ADT persist
PSA after surgery, salvage radiation, and ADT?
Unsure of best option in early prostate cancer diagnosis.
