Hey Dr. Medical oncologist (MO): Now that I've got 1478 characters I can express myself a bit better. 

I've certainly noticed my decline in function over the last six months to a year. And as we both know now it was the cancer starting to run its course. I've known since the 2014 that for someone my age and who couldn't have an RP, it was not a matter of if but when. I assure you I've thought long and hard about hormone deprivation.

Spent hours at UCSF Library. Read countless blogs, spoken to dozens (hundreds?) of men in my shoes. You may recall that I tried it for the better part of year one time. I was borderline suicidal as a result not to mention the depression, the hot flashes, the weakness, the malaise, the loss of muscle mass and the increase in body fat and last really, truly last what is the loss of sexual function. Not number one concern.

And it might buy a year....a miserable year. No Doc, I want to focus on and maintain as long I can, fairly good quality of life. Castration does not provide that. 

PSMA, once approved is promising but the medical community still insists on castration to even be CONSIDERED, which I will never understand. I hope that HDT in its various forms of poisonous treatment is banished. But I'm not a "standard protocol" guy, which you know. It's worked rather well going on 8 years. 

Dr. MO, thank you for your knowledge, your compassion, your friendship, your often sage advice. I have truly appreciated you as a physician and simply a nice guy. 

Best, Scott

Hospice - It's time

When I started this journey going on almost eight years ago, I assumed that at some point I would probably have to write a post regarding end-of-life care and possibly hospice. I actually expected to have to write it sometime back but I beat the odds for a long time. Regardless of whether that's due to the initial western treatments I had, the heavy use a full extract cannabis oil or just plain old good luck I just kept me kicking around. Today I met with a very nice registered nurse from Hospice of the East Bay who we will call Cindy. She was here to do an intake. I had noticed over the last year, in the last six months in particular, that my energy, my memory, my pain levels, my appetite had all degraded and continued to do so. The PSA score of 330, triple what it was two months before (i.e. it was then finally the state of the art PSMA Pet scan on my birthday that gave firm evidence that the PCa had metastasized extensively to both lungs, liver, what's left of the prostate and multiple lymph nodes both in my neck and groin. Having lived through the AIDS crisis of the 80s and 90s, having buried both parents to cancer in one sense or another, I've had a lot of interaction with hospice and these are very special people that do this kind of work. So now the doctors will be coming to me. Well at least they RNs will. My disease associated medications are now 100% covered and will be delivered to me. I'm getting a couple of assistive devices is such is a walker and a shower stool not because I can't stand and shower or because I can't walk but sometimes it's difficult. I want each of you to know that I am at peace with this decision. As a matter fact, I have a great sense of relief. I've been fighting this pretty much on my own for five years and dealing with it for going on eight and I just I have to recognize reality. Hospice can do the most good for you if they get involved early. So that is by way of saying that I'm not going anywhere this week. I kidded the nurse today that it seems that I'm a tough motherfucker to kill. lol....... Fortunately she had a good sense of humor ;) Please know that emotionally I am really good. I'm not throwing in the towel and I will continue to seek out possible treatments that makes sense. But I won't take hormone deprivation unless it becomes a palliatively necessity. I've had a good run considering what my diagnosis was. Eight years instead of five.. But truth of matter, I'm exhausted from treatments, the limitations, the lifestyle, the never ending pain. Please support my decision. It's not one I've made lightly; it's one I thought about for many, many years. All I ask of my friends and family is that you just keep loving and joking with me! Laughter is good and I'm good with it. I dearly love my friends and family and it goes without saying, I've been extraordinarily blessed in my life. To the men around the world that I've been able answer questions and give you some info or reassurance......well I'm proud I was able help in some small way. 

 But I'm at peace folks.

PSMA Scan done......Not great numbers.....In person visit with the PCP/Palliative....I Can't Speak Highly Enough of the Man

The specifics came back from the radiology report, etc. etc. Please keep in mind that when I was diagnosed in 2014 my PSA was 5.2 ng/ml. Throughout the last seven years it's never been more than about 40 give or take. The test from six weeks ago says it's 330 now. And that would support a lot of what's been going on with my body, my energy or, more accurately, my lack of energy. I've struggled with fatigue for so long now I just don't quite know what to do with it. My palliative guy gives me a stimulant which often helps but it has a short half life so I have to take it just right so that I'm on the downward end of the dose as I go to sleep. But here here's the real bottom line situation. The palliative guy feels like with four if not five areas of metastasis including both lungs, liver, lymph nodes, I am in an "unfortunate" situation. I may have to make some decisions real quick if I do anything at all and there aren't many options so I will be talking with the UCSF research guy next Tuesday and try to see if I can figure out a there's a reasonable path down the yellow brick road. When I asked my Palliative guy how much time (Dr’s hate that question BTW) based on what he knows of my diagnosis and my history and most importantly what he knows about me do I likely have, his commentary was you can always buy time but realistically months….maybe a year. A friend just finished two years of hormone deprivation therapy. He was diagnosed in 2019 so I guess I finally reached that point my life where I am the old wiseguy...lol. Who knew?! But back to what he said, and that is, "it's poisonous". There's a formula palliatve docs use to estimate longevity and it’s an educated guess. It's called the Palliative Performance Scale I know my body pretty well and for going on six months or so now I can't get enough sleep. I'm just exhausted all the time. The palliative's scale suggests a year at best. The PSMA treatment catches my eye because it doesn't require castrating a man, either literally or chemically. I want to know more about the side effects from the little nuclear bombs they send the cells. Yes folks, you heard it here! You heard it here first. This treatment makes sense and comes with few side effects; it's the first thing that caught my eye in seven years where I've thought now that probably makes sense. So we will see what the treatment the UCSF research doc has to offer. Immunotherapy is not off the table I don't think. But I can tell my body is degrading...which was bound to happen sooner or later with my diagnosis. So please feel free to send me your thoughts and prayers. For the readers that are also patients or loved ones of patients, please feel to reach out to me at anytime. Ever. Always. I know how frightening this is. But I also know that come March I'll have officially been dealing with it for eight years. They told me in 2014 if I did everything they said, I might make five. I'm a lucky man. I'm a very lucky man and part of that is having friends and family that have been so supportive for so long. To borrow a wonderful line,"If I'd known I was gonna live this long I would've taken better care of myself!" You see a few years ago I didn't think I was going to live very long. But I did things my own hardheaded way, which I'm prone to do, and lo and behold, I'm still here. And most everything functions like it should. That big load of gratitude is owed to my friends and family because without them, I wouldn't have had the strength to stick it out this long. Much love and onward!

PSMA PET/CT Results Are In

The state of the art PSMA Scan results are in and they're not particularly surprising. So let's just get right to it shall we?

A brief explanation of the technology is in order I think because it is so new. Prostate cancer cells give off a certain antigen that can be tracked by certain radio tracers. This scan can show lesions under a millimeter in size. Unlike other scans, PCa cells simply can't hide from this scan.  And they didn't. 

The good news first. There seems to be no evidence of bone metastasis which truly is good news because cancer in the bones is one of the most painful cancers one can have and it's typically where PCa metastasizes to first. Never having been one to follow tradition or what everybody else is doing, I've kept my metastasis out of my bones so far. And I am truly grateful for that.

Now the not so good news. The report states that:

FINDINGS:

 

Index lesions:

1. Right upper lung: 2.3 cm (1 inch +/-),

2. Ill-defined lesion in the left hepatic lobe:

3. Left supraclavicular node: 2.7 cm,

4. Heterogenous left pelvic nodal mass

IMPRESSION:

 

Patient has numerous pelvic, retroperitoneal, hepatic and pulmonary metastases, some which demonstrate high radiotracer uptake and some which demonstrate uptake below the level of the liver.

In a nutshell, the PCa has metastasized again to the lungs, but now also to the liver, organs such as the duodenum and a portion of the rectum as well as lymph nodes both in the pelvis and in the neck area. And it's advanced rather quickly.

There are options. I could go back on hormone deprivation, suffer all the wretched side effects but probably live a bit longer. There's also a treatment based on this same PSMA scan technology and that sounds quite promising.

But the bottom line is that shit just got real.

I'm Gonna Be OK.....I Just Will Be

As mentioned in previous posts, after surviving 2020, and getting through the deaths of a couple of younger friends in 2021, I decided it was probably time that I needed to focus back on my health and my ever unwanted resident guest that lives in my pelvis.

So I started that process and here's where I'm at. This coming Monday, I have a state of the art, PSMA-PET scan at UCSF in downtown SF.  I've been to their cancer facility before and I have always been impressed.  The scan is light years beyond what was available seven years ago. It's even beyond what was available a year and a half ago with the Auxumin scan.  Needless to say I'm grateful that Medicare/my Medicare advantage plan with UnitedHealthcare will pay for this. It will give me and the medical oncologist a lot of information to work with.

What's even more exciting is that in most western countries they have approved treatment using PSMA technology. To make it very simple, using the same technology that they identify prostate cancer specific cells throughout the body for imaging, they can also identify those cells and send, in essence, nuclear bomb's to those cells, leaving the healthy cells around them undamaged. And that's always been the problem with cancer treatments; they don't just damage the bad cells, the cancerous cells… they kill the good tissue and the good cells. And that, of course, is the dilemma for most cancer patients. How much trauma to your body do you want to put up with to live a bit longer with not necessarily great quality. Consequently, this is a very promising technology. More can be found here: PSMA Prostate Cancer Treatment.

I've been very fortunate during this journey.  I have little urinary issues, although I do take a flomax every other day; my sexual function is good with medication not required for erectile function but used as a preventative/palliative measure; with regard to sexual function, orgasms are typically incredibly intense… far more so than any time in my life. But they can also be painful about 10% of the time. There is very little "pre-cum" and there is no ejaculate at all. Having the ability to be intimate with another person, even if it's a bit different than in the past, is really important to a person's emotional well-being.

The chemotherapy induced peripheral neuropathy(CIPN) is rearing its ugly head and making it harder to walk and open doors and do anything that involves my feet and my hands. Medication helps but it doesn't take care of everything..and I may also be growing tolerant to some of the meds. It's just something I am doing my best to live with and not complain about because nobody really wants to hear about it. 

My old friend fatigue is a wiley adversary. I can sleep six hours, I can sleep 12 hours and I'm still going to have difficulty pulling it together in the morning and I'm going to feel tired like I haven't slept all day. Some prescribed stimulants help that at times, but most of the time they just make me kind of jittery, tired person.  I'm not lazy..........I'm just fatigued because cancer cells suck up a lot of energy.  A lot.

Also, there's this. As do most men who were in my situation, I get a PSA test done at least three or four times a year. While nobody ever died from a high PSA test, it's a good indication, particularly if you have my history, as to what's going on in the body. In April of this year my PSA was 37. Flash forward five months and it's about 330. So it's about nine times what it was five months ago. Probably not good news.....at all.

The path forward is to get the imaging done next Monday, then to sit down with that information as well as these numbers and speak to the research guy at UCSF as well as my own oncologist and see if they have anything besides castration to offer me. Call me crazy, I'm just not a fan of losing the boys....either literally or chemically.

Regardless of how it goes, I am an extraordinarily lucky man. I have lived longer than they told me I was going to; I haven't done everything they said was "protocol"; I have used medical cannabis and I've kicked it up to a whole new level in the last month and I I'm a firm believer that I kept numbers so low for so many years because of this. But the bottom line is, I'm a very, very fortunate man. This disease allowed me to get to know myself better. This disease has made very clear the people who are true friends and those who are just acquaintances. This disease has allowed me to get closer to family which warms my heart in ways I can't express. This disease has reminded me that there are still so many people that would trade lives with me.

So keep your fingers crossed, say a little prayer or do whatever you do. I'm going to be OK.

I'm going to be OK.

 

I Have Dipped My Toe

As promised in the previous post, I am starting to focus on my own health again, which admittedly I had not done very much of the prior 14 months or so.

I've had blood work done and the good news from the bloodwork is the CBC or basically "is all your stuff working all right," came back perfect.

What was not quite encouraging was the ultra sensitive PSA test. I've attached the graph, but as you can see in basically 4 1/2 - 5 months, the PSA has tripled.  That's a lot.

Now, no one has ever died from a high PSA, and in comparison to many men with PCa, mine is quite low .....still, when the pathologist confirms that the cancer you have is of an aggressive form and you were diagnosed with metastatic cancer with a PSA of 5.2, (< 4 being "normal") the current count does indicate need for further investigation. The problem with aggressive prostate cancer is that the PSA numbers tend to be very low. Which is by way of saying that many men aren't diagnosed until their PSA is in the hundreds or thousands. Again, mine was 5.2.  My chemotherapy induced neuropathic pain (CINP) is pretty status quo although perhaps has had a slight uptick. It's my fatigue that seems to have crept up noticeably.

I'm in the process of seeing if I want to just do a repeated Auxumin scan, or if I want to push to get the newer PSMA scan. This cutting edge imaging process that seems to pick up small traces of cancer throughout the body. So that's what I'm going to push for, but even if I don't get that I'll still do the Auxumin scan because it's good to know where you're at.

This dramatic rise may indicate why going to the gym, why going to Austin, why doing so much of what I've done in the last few months has been so exhausting.  Really exhausting.

But it might not. 

More to follow as I have it but that's basically the situation at the moment.

Dipping My Toe Back in the Western/Oncology World

 I had a video conference/visit with my onc today. As he pointed out, the last visit we had was in April 2020.This kind, well educated, respectful physician, excellent in his field, has been my oncologist since I moved to the Bay Area in 2017.

He started off with just asking me how I was and the answer to that was that I was pretty normal. I had my normal complaints: Severe Chemotherapy Induced Peripheral Neuropathy, specifically my hands and my feet; fatigue that has nothing to do with how much sleep or exercise I get. I explained to him that I now had to take Flomax as a result of the radiation two years ago. But that really, all in all, for a guy that is seven years out from stage IV, Gleason eight (4+4) with severe metastasis to the lungs, I was doing pretty well. Not great. Not always easy. Yet pretty damned good.

But considering someone with my diagnosis has a 3 in 10 chance of making it five years, and I just passed seven years in March. I feel pretty damn lucky. Especially since I've lost two friends in last year who were much younger than myself to different cancers. Diagnosed and dead within a year.

So despite the fact that he thinks I should have another biopsy and reconsider making hormone deprivation therapy my routine, I'm still opposed to those ideas. But we probably will do an Auxumin scan again to look for where the cancer is. Maybe an MRI if the Auxumin scan gives us new, different detail. My PSA has quadrupled since he saw me in March 2020. So to him and to me, that means that things are on the march. But I also know that nobody ever died from a high PSA. It’s just one marker. And when I was diagnosed with that damned diagnosis, my PSA was right about 5.2. But I want to be at least palliatively proactive. 

As much as I respect this physician, and I truly do, I feel like I may need to find somebody else who can think outside the Damned Castration Box. And I'm not sure that that Oncologist exists. All I know is, between luck, my doc’s advice and my decisions,I've beat the odds.

And for that, I’m grateful.

Younger Men Afflicted. Treatments That Do More Harm Than good. Change is Needed!

 

It often seems as if prostate cancer is just a side effect of being a healthy male and getting older. Oh, and you have this reproductive gland that causes issues. Unfortunately, now it’s younger and younger men that are being afflicted with more aggressive PCa. I was 52 when I was diagnosed seven years ago, Gleason eight/mets.

But these days it’s not at all uncommon for me to read comments or get emails through my blog from men in their 40s who have very aggressive cancers. This is no longer an “old man’s“ disease. The statistics bear that out over the last 20 to 30 years. Indeed, the incidence of PCa in men (boys! BOYS!) age 15-40 is increasing at a rate of about 2% a year.

I’m a firm believer that one must look outside the proverbial box. 

What Western medicine has had to offer, at least up until recently, has always been slice/dice, fry or castrate, either figuratively or literally.

That must change. You can’t take a 45 (or 52...or 60, etc) year old man who is quite healthy, take away his testosterone, make him incontinent, make him impotent, weaken his bones, take away his muscle, give him hot flashes, make him extraordinarily emotional and subject him to all the horrors, mental as well as physical, that go with either surgery, hormone deprivation or radiation and expect his body or mind to thrive. 

The approach to treating this prostate cancer must change.

Vaccinated, Cautious, Enjoying a Return to "Normal" and Updates......Post Covid (?) Report

It's been 3 months since I last checked in so it's time.  I've had two onc appointments over the last three weeks; one was canceled due to my error and one was canceled by the physician. We are working to get that rescheduled and I'll tell you why I want to speak with him but let me first just go over the basics. 

As per usual, the We're Not Talking About An Ingrown Toenail disclaimer applies. If you prefer not to read about male genitourinary function and or bowel habits, please feel free to click the lil button and close the page. Now :)

As far as my overall health, I think I'm doing pretty darn well. No new pains to report. I've had a fair amount of energy over the last 2 to 3 weeks, although the last two or three days have been kinda rough. But I am happy to report that I think the reason it was rough is that three out of five days prior to that, I made it to the gym for the first time in I'm sure two years. Didn't do anything crazy or try and lift heavy weights. No, I just did exercises that would kind of wake up my 2020 atrophied body. And I think it kind of wore me out. But I'm starting to make it a routine so this is great. I could stand to lose 10 pounds and really 15 or 20 would be great. But most importantly I need to get some strength and flexibility back.

OK so for the below the belt stuff. Urination is quite good as long as Flomax is on board. Without that medication, it's stop/start and a prolonged painful process. I did manage to see my favorite urologist, Dr. Jeremy Lieb, and he said everything looked good to him although someday...maybe... we might have to look at doing kind of a roto rooter procedure. He assured me that I would be checked into the hospital and heavily sedated. He also seemed to continue to be in favor of the idea of taking 20 to 40 mg of sildenafil daily just to ensure regular blood flow to the penis. Mr. Happy needs blood just like one's big toe!

Speaking of Mr. Happy, he's doing rather well. Two years after radiation, I'm happy to say that even without the prophylactic sildenafil, Mr.Happy can still rise to the occasion although not quite with fervor of an insatiable 20-year-old, yet with regular nocturnal and morning tumescence as common as they would be for most healthy males. Orgasm is still very possible and actually intense to a level that is actually quite painful about 15% of the time.  The other 85% is unmatched in my lifetime; intense to the point I'm weak after. There is no longer ejaculation or production of semen.

Something that has been of concern is what I have assumed to be an internal hemorrhoid. I had written it off to long-term use of narcotic pain medication. Not painful, not really bothersome other than the fact that it bleeds during during BMs about 70% of the time. After deciding it was time to get back into dealing with things like this post 2020, I went and saw a gastroenterologist by the name of Dr. Salvador Guevara. Good doctor, easy to talk to, obviously knowledgeable, just the right amount of humor and very respectful during examination as well as consult. Indeed I do have an internal roid and we are going to try and deal with naturally as opposed to ligation via banding. I found it rather interesting that as Dr. G was examining me his first question was," have you had radiation?" I advised that I had two years earlier and he said he could certainly tell. That was it rather stark reminder. Regardless, I'll see him again in about a month after I've had time to try natural remedies.

My old friends CIPN (Chemotherapy Induced Peripheral Neuropathy) and fatigue accompany me wherever I go. Fortunately I am fairly used to them and they are generally well controlled with medication.

So that's the physical stuff.

What I want get back with the oncologist about it is new treatments that show a lot of promise. Treatments by which radioactive molecules specifically target prostate cancer cells......PCa Smart Bombs if you will. New, improved treatments that use immunotherapy. There's been quite a increase in research and progress in this area of treatment and I've been fortunate enough to live longer than the estimates said I was going to. Who knows, maybe I can take advantage of some of it.

The hitch is that with many of these studies is they usually insist that you also take hormone depriving drugs. They want you castrated. And I refuse to believe after seven years of living with this disease, six of them of with testosterone coursing through my veins, that these new therapies can't be effective unless you also castrate a man. Medicine must come up with and the scientists simply have to figure out new, non-damaging treatments for this disease. They must think outside the box and quit jumping immediately to surgeries and drugs that are so damaging to a man both physically and psychologically.

That's what I want to be able to talk to the oncologist about. This will be the first time we've seen each other or communicated since March 2020 and I'm hoping that he can give me some guidance and think outside the box a bit. 

There is no doubt in my mind that if I had agreed to and taken all the treatments that various oncologists had suggested and, in some case, all but insisted that I take, that I would be a very, very ill man .....if not dead by now.

I'll check back in after I have that visit and I hope to be able to post some of the treatments I've been looking at and will talk with the good doctor about. As always, if you're out there, diagnosed,  scared, don't know what to do, who to talk to or where to turn, please don't hesitate to reach out to me.

Because I know exactly what it feels like.

Why I Chose To Forego Androgen Deprivation Therapy

 When a man is diagnosed with PCa, especially metastatic PCa, the first go to for oncologists is usually Androgen (Hormone) Deprivation Therapy (ADT) which can be accomplished in men one of two ways: 1) orchiectomy or the surgical removal of the testicles or 2) taking drugs that turn off the production of testosterone.  Fortunately, most patients choose the 2nd option.

When I was diagnosed in March of 2014, I was told in no uncertain terms by more than one physician, that I had an aggressive PCa and it was already in both lungs as well as pelvic lymph nodes and seminal vesicles.  I was initially offered ADT using Lupron, which was administered 2 times over the 8 months I took it.  I handle injections and blood draws like a champ, but the Lupron injection was unusually painful both times.

At the end of the year, after an 8 month trial as well as going through 6 rounds of newly approved chemo for PCa with mets, I decided I would no longer take ADT.  It was simply too rough on me physically but even more so, mentally.  The malaise, the depression, the loss of muscle and gaining of body fat, the hot flashes, the cold flashes and my emotions run rampant as well as cognitive dysfunction...all of these things proved too much for me to consider living with the rest of my life.  

Did it negatively affect me sexually?  Yes.  After about 3 weeks of being on it, I had no sex drive or desire. I didn't even think about it and had to literally write myself reminders to be intimate with my husband.  But that wasn't THE major reason I wanted my testosterone back.

"Fatigue, loss of muscle mass and bone density, loss of body hair, emotions played havoc with, weight gain, hot sweats and flushes. Effectively it feels like you’ve become a menopausal woman overnight, and that simply magnifies the loss of masculinity."

A female oncologist I consulted with a couple of years back before SBRT treatments made the statement to me that you "can't take a relatively young man's testosterone away and expect him to thrive.  It's an important hormone for more than just sex."

I may have to go back on ADT at some point as a palliative measure if/when my unwanted resident decides to metastasize to my bones and my palliative doc and I have discussed limited use of it.

But only if I see no other way.

Meanwhile, I am quite empathetic with menopausal women.

https://prostatecancer.net/living/hormone-therapy-sex-life?utm_source=weekly&utm_medium=email&utm_campaign=307b2076-5695-40c4-8f22-cca66a5d118b&utm_confid=sovkmsupw&aGVhbHRoIHVuaW9uIGJsYWg=569545217a1113b029a72ef9f8892817e232093fe306442f269a3bc295d82886

Survival. It Can Be a Good Thing

 

I'm grateful to say (knock the proverbial wood) that like those of you reading, I survived 2020, COVID and isolation.  I plowed through the lack of interaction with others as well as exercise, lack of nutritionally diverse meals and overall generally less than ideal circumstances, particularly for those of us that live with chronic, serious conditions.

I survived an assault by a bail agent in my home who was looking for someone else. Survived some type of mild blood poisoning.  Survived an abusive landlord situation.  BUT!  Moved into a loving, family situation recently and am so very grateful.  Survived.

I survived losing several people (none due to COVID, but too many to Big C), including one of my dearest friends ever. Pancreatic and took almost exactly 1 year to be diagnosed, "treated" and die. This one will take a while to grieve over. 

I've survived  And so have you.  Good on each of us.

I'm three weeks out from Dose 1 of Pfizer COVID vax and will get the second in about ten days.  By the end of the month, I should be well protected but will continue to follow masking and sanitary guidelines as I refuse to be a spreader.  I will get out, but still with caution.  Perhaps a bit more confidence?

But doing so means I need to see where things are at with my unwanted guest and my last in person visit with Palliative Doc/Advisor and set of bloodwork was in Sept/Oct 2020. I got the blood work done yesterday and see the P Doc Monday.  Here's what I know from the blood work:

    * my basic CBC and baseline metabolic a look good.

    * PSA is up, but not as much as I expected (yay?).  From a 26.6 ng/ml in Sept to a 37.4 this week. 

Given my poor diet and the stress of the last few months, I expected it to have jumped substantially more than that.  It'll be interesting to see what the Doc says.  I'm guessing we'll do some additional imaging just to ensure that no tumor is getting ready to perforate anything.

How have I been physically?

Overall pretty good.  The usual culprits, fatigue and foot/hand/limb pain remain and have gotten a bit worse.  I still keep walkin'. As a friend reminded me yesterday, fatigue and being "kinda tired" are two, distinctly different things.  Neuropathic/joint and bone pain are also a different kind of pain than arthritis, etc.

I continue to urinate rather well particularly if Flomax is on board....so I try never to run out. Sometimes a bit strained and/or difficult/extraordinarily painful, but fortunately those instance are not too often. Very little, if no urgency issues.

Erectile function is good, even without ED meds.  I do take 40 mg of sildenafil daily (like vitamins!) to ensure blood flow to my old and valued friend.  But I'm grateful to have good function for a 59 year old, 7 year PC patient.  The odds are against men, even without PC, in this area.

I have some mild bleeding during BMs at times but I'm 99% sure it is a small, internal roid that is a result of using pain meds for sometime.  I'm trying to heal it naturally because proctologists......well....yeah.

All that said, for a guy that was told he didn't have long even IF he followed all physician recommendations, I'm doing OK. That was 7 years ago!  It makes me wonder if so much of what men with PC are offered/put through really makes a difference as to longevity.  The studies suggest not and I chat regularly with men, older and younger, who have followed every piece of doc advice, from radical prostatectomies to multiple hormone drugs (ugh!) to implanted radiation to orchiectomies (look that one up).  Each of these could have it's place, but I fear that too often men are steared these directions for the sake of profit rather than what the evidence is.  Fear of death is a powerful motivator.

What I can tell you is that I did the chemo for 6 rounds as well as 8 months of castration "therapy" the first year and then, 5 years later, did 5 rounds of SBRT (look it up...highly focused, high intensity atomic assault but almost 100% on just the target).  That's it.  That's all my "western" treatments. So far, so good.  The side effects were less than I expected, I have testosterone (* to all those who say, "You look SO good"....I think if I have even a remote claim to that, it's because I have T in my veins.), I hurt but I've hurt for most of these years. I'm fatigued but it's become just a part of life.

Is it high dosage cannabis/cbd that has slowed all this down?  I don't know but I have little to no other explanation.

I'm fortunate.

So I survive and am grateful.  How this has worked out compared to what I was told to expect are not the same.  I hurt.  I'm drained much of the time.  But I can still get out some, do normal tasks, I walk like a nerd in pain....oh, I am a n ierdn pain.  But I'm doing quite well all things considered and feel so very fortunate.

Readers can always feel free to contact me.  I think the blog is around 40+ thousand views from around the world and I've had the honor of answering numerous men's and women's questions.  I'm an open book so feel ok in reaching out.  I've become far more of an expert on the topic than I ever wished to be ;)

Best wishes and peace be with you.