1. Loyalty; you don’t owe your doctor any. If you sense a 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 and TET (testosterone) levels pre-RT or RP, 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 (this includes ED measurements; see below). Doctors wont require these tests, or think of them. If you don’t have a baseline how do you know you have been ‘impacted’ by your treatment and to what degree? Further, when you are trying to recover, how do you know you are getting 'back to normal,' if you don't know what that means? 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 and know to look for them before they arrive!
5. Knowledge; in the age of the Internet there is no excuse for ignorance…stupidity is knowing the wrong thing; ignorance is knowing nothing; avoid BOTH…know your disease, research your case, watch YouTube medical journals (avoid personal epilogues) 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. If not see point 2, 'rinse and repeat!'
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. DO NOT depend on a DRE to keep you safe (see point 8).
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 1.0-1.5…if its 2.0 or higher you need to be referred ASAP. If you have a family history of PCa watch out; if you wait to hit 4.0 it may be too late!
8. Multi Parametric Pelvic mpMRI; 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! In fact the MRI should replace the annual DRE in my view as that office visit did nothing for me except lull me into a sense of safety I did not have...
PS recently its revealed that mpMRI have a NPV (negative predictive value) of 77% not 90% as previously thought...but, if your PSA density is higher than 0.1 you have a 5 fold increased risk of having case serious PCa with a NEG mpMRI...you should proceed to a Biopsy even with the NEG results...
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. If operated 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 the aggressiveness for 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 having a 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 access to 1) doctors, 2) Continence and 3) Erectile Disfunction specialists. 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) treat the cancer, b) recover continence and importantly, c) protect your erectile tissue from damage. Don’t leave these last two issues (continence and ED) to chance; surgeons really don’t focus on these (especially the latter); if you are alive after treatment they are good…only you can look out for all three from the get-go!
11. Salvage Radiation; if you have recurring PSA after surgery consider early eSRT (early salvage radiation). Lots of studies now show this is linked to prolonged progression free survival and OS (overall survival) for high risk PCa patients (see point 9 above). Get as dry as you can before any sRT and know that whatever leakage you have going in is what you are most likely 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, should I have 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. The day after your RP you will wake up without nocturnal erections; the first time since you were 3 years old! From that point forward your penile tissue will be damaged without you taking action. 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…men like me who cannot tolerate penile injection treatments for the pain they cause have no other choice. I am scheduled this year for a penile implant…BUT if you don’t protect your length and girth starting immediately after the RP the implant may not give it all 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.
PS dont wait too long to move on an IPP (iflatable penile implant). I waited 2 1/2 years, but after single nerve sparing, sRT radiation treatment and 21 months of ADT that was pointless...someone should have sat me down and flat out told me my natural erection was gone forever...I should have moved on an IPP at surgery + 12 months latest and would have saved length and girth; size really matters when you had it and lose it (more if you didn't and its gone)...trust me.
PSS its been 1 year now since my IPP...its a miraculous intervention that I only wish I had done within the 1st year after my RP...I waited too long and lost a lot of length n girth (30% or more) BUT I have recovered what I was able to save after I started VED treatment and I am very happy with what I have now. Its really amazing what some medical interventions can provide...dont be afraid to move on this if you need it.
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 4 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 immediate, significant impact on your erectile tissues; it will damage your penile tissue during long term use. In fact, should you still have nocturnal erections after treatment, ADT reduces/ suppresses those significantly after 1 month of use! So, use ADT if it will work for you (Decipher test matrixes can help you determine this) and don't use it in a general prophylactic, 'just in case,' manner; serious impacts should be expected. If you need and use it then see note 11 regarding the VED or injections…remember, use it or lose it permanently…
PS I am now 12 months post ADT treatment and my PSA are in the uPSA (ultra low) levels...so far so good. I will never go back on full time ADT again and if needed will go back on intermittent ADT. Studies now show that its only important to keep TET (testosterone) below 20 ng/dL for the 1st year while on ADT...after the 1st year the TET levels can rise during intermittent ADT without risk to OS (overall survival)...and your QoL (quality of life) is a lot better.
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.’
