Mentor to Prostate Cancer Patients and their Caregivers

[maack1]

Hello all prostate cancer patients and caregivers.

I have been a volunteer (free) mentor to a few thousand of your fellow patients and caregivers for the past 20 years and am “Always as close as the other end of your computer to help address any prostate cancer concerns.” If interested in my prostate cancer, advocacy, and mentoring background, (my “credentials” if you may) please visit the following theprostateadvocate.com where you can also click on the menu word "Observations" and access over 225 papers I have either authored, compiled, or posted from medical friends regarding prostate cancer, recurring prostate cancer, treatment options, treatment of the side effects that often accompany most all treatment options, and more.

[Darryl Partner]

Good to have you here!

[Ben2 in reply to Darryl]

Hi Darryl! You were supportive a couple years ago when I was just starting treament. Thanks. Dx 12/2013-PSA 10.3, Gleason 8; 50% of cores involved. 48 sessions of radiation, 4 Neo-adjuvant hormone therapy, 5 aduvant. PSA's so far less than 0.1. Some side effects-all manageable. Was advised to do 2+ yrs. adjuvant hormone therapy by many, my urologist thought 10 months total was enough. Look forward to hearing experiences of others. While I've been candid with family and a few close friends, I find most people just don't want to know about the issues of PC, including some physician friends. 

[ffiore]

I can vouch for Chuck. He is a great resource and help pointing me towards resources  that cold answer my PC questions and the Yahoo PC Groups he is in are a real help to us PC crowd.

[Vitruviusman]

I am 59 years old, prostate cancer , years ago, age 54. Gleason Score 4-5, PSA, 4. Had a robotic  prostectomy. NO side effects or conditions  Problem Erectile Dysfunction. No social life. I work out at the gym 3x a week completing a rigorous Cross Fit/Weight training regiment. Despite keeping fit, once men find out, I cannot get an erection, "the make nice routine" begins and the date ends. Thus, I have had no intimacy in over 4 years. I have friends but with no physical intimacy, I have this constant melancoly feeling that does not go away. I tried the ED drugs, the tortuously painful pump, do not want the penis implant, and do not like to inject my penis with the  medication to create the erection.  This leaves nothing else.  I need to hear from other men to learn how you are coping and most importantly ,what we can do,allowing us to create fulfilling relationships with other men that include intimacy and the potential of a LTR.

in addition, I found out I did not have to have the operation. The amount of cancer was microscopic, no tumor, a handful of cells. I could have been a candidate of the SPOT-ectomy where the surgeon goes in  to the prostate, like a biopsy, takes out the few cancer areas, and then monitors PSA for the next year. Most with this small level of cancer are essentially "cured' When I found this out, it pissed  me off

[maack1]

Hello

Vitruviusman

What I would be interested in learning is the results of the initial biopsy as to the number of tissues extracted, of that number how many showed evidence of prostate cancer, from what location were they extracted, what was the Gleason Score assigned to each of those individual tissue samples, and what was the percentage of cancer evident on each of those individual tissue samples.  This should all be available if you have your own copy of the pathology report of the biopsy. 

Then, following surgical removal of the prostate gland, was the size/volume of the size provided you?  Did the surgeon advise if one or both or neither neurovascular bundles were saved?  Did the pathology report of the removed gland also provide the locations wherein prostate cancer was present and the Gleason Score assigned each of those locations?  Did the pathology report identify that lymph nodes and seminal vesicles showed no evidence of prostate cancer cell migration?  Does it appear your cancer was eradicated with PSA levels since down in the ultrasensitive range (below 0.1ng/ml) following surgical removal and up to the present? 

Were you able to experience routine erections without any problem prior to the surgical removal? 

When prescribed  a PDE5 inhibitor (Viagra, Cialis, Levitra) were you able to get a prescription for. and your health insurance cover, sufficient tablets to be taken on a daily basis?  Or if insurance did not cover any, or only a certain few, did you purchase on your own the needed additional tablets to be able to take daily?  Part of penile rehabilitation is the daily intake of one of these products to help arterial blood flow and oxygenation to the penis.  Penile injections are more direct in bringing about that arterial blood flow and oxygenation, so again, a part of penile rehabilitation.  The vacuum erection device (VED) is only useful to prevent atrophy with the penis shrinking from inactivity.  The VED only draws in venial blood that can fill the penis with blood in order to exercise and help maintain length and girth, so it is a worthwhile product only in that regard.  Using that method for an erection for intercourse in trying to retain blood in the penis with bands is most often difficult to have work and most men tire of even trying. 

So, my new friend, if one or both your neurovascular bundles were saved, but you have determined the use of PDE5 inhibitors or penile injections are not your choice, there isn't much that can be recommended.  If you still have sensitive feeling in the penis, you would be a step ahead of many other men who choose to have the penile implant in order to have intercourse though for many not experiencing sensitivity.  In your case, not only would you get an erection suitable for intercourse but experience sensitivity as well.  A partner doesn't even have to be aware of a penile implant with initial use, and if that intercourse was successful for both parties, the fact you do have a penile implant could be brought up at such time as you may feel it should be.

Please see if you can resurrect answers to the questions I have posed.

Chuck

[Yecart1977]

Maaack1

First..thank you! This is a crazy ride we are on.😳

Let me tell you my hubby's history. 

Past 15 years all  dre's were negative and psa held constant at ~2. Started early screening because his dad died of prostate cancer after a 5 yr battle

March of last year (2015) psa was 2.76and family doc said to get to urologist because of his dre exam

Urologist wanted a biopsy. Ended up having a da Vinci prostectomy July 2015.

Path report floored us. Day of surgery psa was 4.48, Gleason 9, positive margin, extracapuslar extension, 35% volume, and 3 lymph nodes out of 14 removed, pt3a,n1

Surgeon sent us to medical oncologist.

Psa have been

.o4, .o3, .o2, .o5, .o5, .o3 

At last appointment we told dr. our fears that psa was not an accurate test and that it certainly did not seem to be a good indicator of his cancer. Doc sent us to a radiation oncologist. She wants to do 6 months of hormone treatment, and starting the 2nd month begin 37 treatments of radiation. Med oncologist agrees and we are scheduled to see him again on April 26. Also going foe ct scan and bone scan on April 15th. 

Problem is....we want to treat this aggressively...we hear combo treatments seem to be useful...but a lot is written about not doing anything until psa is rising....like to .o8. Also, hubby is getting very nervous about radiation and now is concerned about over treating and unnecessary side effects. I'm also wondering how every other cancer type with any lymph node involvement they immediately start chemo...they seem to not give chemo for prostate cancer. We really are very concerned with the quick acting and aggressive nature of his cancer and really do not want to take chances. Just a total loss of how we should go at this.  We know he is the one who has to decide...but he really wants to make the right choice.  Any insight you might give would be very helpful. He is a very young active 60 year old man.

Thank you so much 

Yecart1977

[maack1]

Hello Yecart1977,

With the knowledge from the pathology of gland, lymph nodes, and seminal vesicles removal identifying cancer already visible under the microscope as beyond margins, and I think you mean that 3 lymph nodes showed evidence of cancer cell activity, the concern now is whether the cancer has spread beyond those organs and already to bone.  A currently good result from surgical removal are the subsequent PSA ultrasensitive levels, and I wouldn't put those levels aside as not accurate.  So far that indication is that even if any cancer cells are still active "somewhere," they are likely way too early in development that they may not show up in the intended bone and CT imaging of which you remark.  With such low PSA these forms of imaging are not sensitive enough to identify activity.  I expect you both are cautious as to external beam radiation in view of the cancer known to have spread to lymph nodes, and whether radiation to the prostatic bed and periphery to include lymph node areas will actually eradicate any cancer cells still active that just might have migrated to bone though not yet visible to imaging.  If that were the case the external beam radiation would have been a waste of time, expense, and added side effects to put up with.  If Tesla 3 MRI is available nearby, that form of imaging may be sensitive enough to identify tumor activity, but I expect that even then the current PSA level/cancer activity is still too low to be identified.  More often a PSA of over 1.0ng/ml or even better 2.0ng/ml provides enough activity to be picked up in the more sensitive forms of imaging.  At 60 years of age and likely not yet on Medicare, a question of course is the form of health insurance your husband has as well as if he has supplemental health insurance to cover those costs that remain as copay after usual health care coverage pays its portion.  If he has good health insurance, and if financially in good shape,  I suspect you would want to identify location of any developing prostate cancer tumor before moving to any treatment procedure.  Once his PSA reaches 1.0ng/ml or just over and if Tesla 3 MRI not available anywhere nearby, you might want to consider a trip to the Mayo Clinic in Rochester, Minnesota for C-11 Choline PET/CT imaging. This imaging “from neck to knees” has been found sufficiently sensitive to identify the location of any tumor development, but usually requires a PSA of at least 1.0ng/ml, and a bit higher even better. The procedure is now covered by Medicare so likely other insurers as well, but always a good idea to check ahead of time to make sure the procedure will be covered by your health insurance. . Here is info not only regarding C-11 Choline PET/CT imaging but also C-11 Sodium Acetate PET/CT imaging that is still in study thus requires an out-of-pocket cost from $2500 to $3000 depending whether you travel to the KU Medical Center in Kansas City, Kansas, or to Phoenix, Arizona: tinyurl.com/by49gqo ,  You mention chemotherapy and appear to question why this would be considered at this point in your husband's status.  More recently early chemotherapy accompanied by androgen deprivation therapy (ADT) medications has been recommended for men diagnosed with high grade, advanced prostate cancer at diagnosis.  In this case,  this is a particularly recommended protocol if metastasis is known to have also occurred, but should likely be a consideration in any case for men so diagnosed with known spread beyond the prostate gland as a good early "hit" on any cancer cells still existing "somewhere."  Androgen Deprivation medications would then continue for likely at least a year as long as both PSA and testosterone levels remain at clinically castrate levels before stopping the ADT medications to see if there is a PSA rise from returning testosterone production.  If so, a return to the ADT medications would be the continuing protocol with periods of on/off the medications as long as this on/off protocol is effective as palliative treatment controlling/managing any continuing prostate cancer activity.  I am open to any questions/concerns but suggest I be emailed directly at [e-mail] to establish future exchanges of free mentoring.  With that email would appreciate actual names, residence location, name of current physician(s).    

[maack1]

I meant to add this paper regarding early move to chemotherapy accompanied by androgen deprivation medications for men diagnosed with high grade, advanced prostate cancer (your Gleason 9 as an example).  Though this recommendation is definitely for men diagnosed with inclusion of known metastasis, it should likely be considered for any man with high grade prostate cancer at diagnosis: ADT + CHEMOTHERAPY FOR PATIENTS INITIALLY DIAGNOSED WITH ADVANCED PROSTATE CANCER INCLUDING METASTATES ALREADY PRESENT:

tinyurl.com/hkntph2