So I have "Aggressive Prostate Cancer" -- What Exactly Does That Mean?

Sample report for the Prolaris genetic test .

First, let's clear the air.

Why do I blog about my prostate  cancer and the assorted tests,  treatments? Well, let's start with the fact this is the second leading cancer killer of men, up to 30,000 a year. But that often takes no account at all of the hell many men endure in terms of the tests (like biopsies) as well as treatments - often described as more savage than the disease.  One can scan and google but unless one is actually a member of a prostate cancer survivor group (as I am) he or she will have scant idea of the pain and suffering aroused by this disease, including in spouses.

Thus, the point here is not anything to do with some narcissistic disease obsession but rather getting information out about how one might very well have to deal with this cancer - especially after recurrence. (More men than you think, in fact, kill themselves after undergoing treatment then having the cancer recur - on being plunged into deep depression).

The other aspect is to show not all cancer narratives are of the saccharine form, e.g.:  'I beat the cancer and it never came back! NO, that's a tall tale, one often peddled by a sappy PR-based media and lackeys that don't know any better, or have an agenda to avoid any negativity. But, they avoid mentioning that in nearly 1 of 3 instances prostate cancer returns, even for those who have radical prostatectomy.

Six days ago, the local urologist's office  phoned to tell me the result of the Prolaris genetic test (of tissue extracted at my MRI fusion biopsy) was that the prostate adenocarcinoma was aggressive. To fix ideas, the sample shown on the image above yields a score of 3.0 and is in the "less aggressive" region.  This in concert with other  clinical-pathologic values enabled an estimate for a 10-year prostate cancer-specific mortality risk. This patient then has a 10-year prostate cancer specific mortality risk of 2%..

My score by comparison was 6.6, corresponding with a 12.5 % specific risk of mortality at ten years. That translates to a 1 in 8  probability of croaking from it if I decided to do nothing. While this sounds like a fair risk to take for many, it would be roughly analogous to walking through a South Side Chicago neighborhood at 3 a.m. and expecting to get back home in one piece. In other words, a no go. In addition, it leaves out all the nasty side effects you'd have to deal with if the cancer breaks out of the capsule (metastasis)  which it is now on the verge of doing given the "perineural invasion" cited in my recent post on the MRI fusion biopsy result, e.g.

http://brane-space.blogspot.com/2016/09/biopsy-result-shows-writing-on-wall.html

It is via the nerve pathways by which the cancer escapes, gets into the bones (bone mets) as well as lungs, etc. The PET scan image below shows bone mets even in the spine. Each met is in reality a locus of prostate cancer.



The question for the medical assistant who phoned was: What is the risk of metastasis?  She gave me the five year risk of metastasis as 39.5% or nearly 2 in 5.  Again, if I chose to do nothing.

Since then, with further research, including gleaning insights from a prostate cancer survivors' group called Team Inspire, I have opted to do a salvage treatment known as focal cryotherapy. This will entail a 150 point 3D staged biopsy. Then that will be used as a guide to freeze the specific tumor regions in the gland. It is described as an "outpatient treatment" but done under general anesthesia, see e.g.

https://www.youtube.com/watch?v=-OnqA-mJDWg

The plan is to have it done at the University of Colorado Anschutz Center, with focal cryotherapy  specialist Dr. E. David Crawford, e.g.

http://www.edavidcrawford.com/targeted-prostate-cancer-treatment

A phone consult with Dr. Crawford's medical assistant, after seeing the MRI fusion biopsy and Prolaris reports, indicated I had the leeway to wait into until the new year to get it done.  This meant not having to contend with any side effects, etc. during the holidays. In addition, Janice six days ago experienced a mini-stroke (TIA or transient ischemic attack) so that means she must also get much better before we can move forward . I suspect all the tension with Trump and this election played no small role in her attack.

Anyway, I will need to have a preliminary meeting with Dr. Crawford in November, at the Aurora UC center, then we will discuss when to have the biopsy and  the treatment.  The latter, I am informed, is usually done at least two months later to allow enough healing time after 150 sticks through the perineum.

By now most everyone has also seen or read of actor Ben Stiller's bout with prostate cancer, e.g.

http://www.cnn.com/2016/10/04/health/ben-stiller-prostate-cancer/


But what they may have ignored is how the treatments and testing can often be worse than anything else - especially if one has a slow growing cancer. The risks of further tests, treatments include sexual impotence and incontinence  The latter means wearing diapers - as in Depends - permanently. This is also why Otis Brawley of the American Cancer Society, has warned that most men need to be very careful before stepping through that testing and treatment door.  Nine times out of ten the cancer will be so slowly growing that you can do 'watchful waiting' - especially for Gleason scores of 6 or less.

Once you go further - based on the PSA test-  be prepared for the biopsy which doesn't always treat a lot of men very well, not only the pain but possible sepsis, or other complications (e.g. incontinence). And if you decide to act on the biopsy results, be prepared for having to decide which treatment is best for you, realizing whichever you choose is a crap shot. As one member of Team Inspire put it (perhaps a tad hyberbolically):: "If there's even one cancer cell left it can grow back."

Well, if there is tissue left at the margins after a surgery, it certainly can!

See also:

https://www.youtube.com/watch?v=HDGAQdHid1c


And:

http://brane-space.blogspot.com/2012/09/thge-longest-dayand-then-some.html

And:

http://brane-space.blogspot.com/2012/10/is-there-sex-after-prostate-cancer.html

And:

http://brane-space.blogspot.com/2012/10/penile-rehabilitiation-what-most-docs.html

Into The MRI Machine and Out - What I Saw, and Learned

Top: Image of MRI scan using 3T machine identifying possible carcinoma sites. Below right: MRI machine similar to the one I was in yesterday.


Yesterday afternoon I experienced my first MRI scan done as a prostate exam recommended by my oncologist in San Francisco.  This was after the post treatment PSA recently spiked to 6.0. See e.g.

http://brane-space.blogspot.com/2016/05/post-treatment-psa-spikes-to-60-not-so.html


In the wake of seeing these results the UCSF oncologist ordered an MRI exam, as opposed to a prostate biopsy and with good reason: given the tissues of the prostate have already been exposed to high dose (Ir 192) radiation, (1920 cGy) they will be scarred and much more susceptible to hemorrhage.

In addition, MRI technology has proceeded so markedly in the last ten years (due to what is called faster development of "echoplanar surfaces" - or MRI image slices) that the MRI can now actually find and grade carcinomas that occur there.  The key has been the development of  more powerful 1.5- and 3-Tesla scanners where Tesla refers to the magnetic field strength. (1 T = 10,000 Gauss). The machine that scanned my pelvic region was 3T or fifteen times greater than the magnetic field of the most powerful sunspots.

The result has been a quantum leap in signal to noise ratio (or "SNR") with the SNR increasing with magnetic field strength. Thus, the 3T (and 1.5T) machines  are ideally suited to the task of scanning for prostate lesions.

According to one radiology website:

"Current receiver coil technology includes pelvic phased-array coils with or without the addition of an endorectal coil. The endorectal coil adds approximately an order of magnitude to the available SNR  and also allows for the use of small fields-of-view (FOV) for some critical applications"

In other words, the radiologists conducting the exam seek ever greater enhancement of SNR by use or coils (pelvic phased and endorectal) by using ancillary devices that play the same role as a radio receiver or antenna. The pelvic array coil - which was used on me (at Penrad Imaging in the Springs) -is somewhat like one of those protective pads dentists put on you when taking dental x-rays except these are filled with coils to  receive radio frequency inputs from the MRI.  In the MRI case it is fitted snugly around your waist before you go into the machine

The endorectal coil is actually a thin wire inserted inside a balloon filled with 50 ml of air to fix the coil to the prostate for better reception of the radio frequency waves and superior SNR. However, much of the literature so far disputes these ERCs improve imaging that much over what an external pelvic coil delivers.

In my case, at Penrad, only the outer pelvic array coil was used not the ERC, and I was glad for that - given the use of the latter too necessitates having an enema first, then having the ERC inserted inside a condom. Thus, according to the same radiology site noted above:

"the endorectal coil is highly preferred, even though it adds discomfort, time, and cost to the MR exam"


Anyway, after arriving I was greeted by a young blonde woman who allowed Janice to accompany me and took my paperwork which included ensuring I had absolutely no metal artifacts anywhere in me (like implants or pacemakers) or on me. Next, I had to assure her I was not claustrophobic - because many people freak out when being put into an MRI for the first time, given the tightly confined space (6" from your face). Also, you can't move at all during the process when can take from 20 minutes to an hour. So you're basically "trapped" in that space for up to an hour - but you are handed a little "squeeze" alarm in case you do panic.

After taking all my insurance and other data down the young woman escorted me to a changing room and told me I had to remove all my clothing and put them in the locker provided - which she pointed to. She then opened another door and showed me the two sizes of surgical gown. Already, with all this huff and puff, I was starting to get nervous that I might have to be "introduced" to the ERC! Fortunately that was not the case, and as the woman left Janice helped me into the stupid gown - which was the only thing covering me.

After finishing I peered outside to see three young women all seated in their own gowns but allotted more clothing (like shoes, etc.) than I was. I balked at first going out, but Janice accompanied me staying close so none of the women could see too much. So in that condition I had to sit and wait with these women until called. Janice kept my mind off my embarrassing state by using her Ipad to bring up different restaurants to go to afterwards.

After twenty minutes or so my name was called, whereupon I was walked to the MRI room and assisted onto the table. My head fitted snugly into a cushioned support and my legs were raised on the MRI table, as the pelvic array coil was spread on top. I was then given earphones and chose some piped in music (60s rock) to drown out the loud 'banging' sound of the MRI. (It was somewhat like being in a giant tin can with huge hammers banging different tones while you lay still).

The scanning began and I enjoyed the music but found it difficult to catch a breath. Finally, after about 16 minutes I tried to slowly inhale and exhale when the operators stopped and warned about taking deep breaths. So she had to run those slices over again. Then about ten minutes later the scan suddenly stopped once more and I was asked to please use the rest room just outside as the MRI scans were picking up gas (trapped in the rectum) obscuring the images. I complied and returned after expelling roughly two loud farts.

Assisted back onto the MRI table, the scanning resumed where it left off and was completed in about ten minutes with no further issues. I was told the imagery - on a CD- would be sent to my primary doc and would be available in about 1-2 days. I then ambled back to the waiting room - where Janice was- to change back into my clothes. From there it was on to the Texas Roadhouse restaurant where we enjoyed two excellent steak dinners.

What happens next will depend on what the MRI scans show. I told Janice that at the least they will likely show the same 6 cancerous cores - at grade T1C - that were first detected in my standard biopsy 4 years ago. (The MRI, of course, is unable to render the Gleason score).

Basically, if the imagery shows the disease is "indolent" I plan to adopt a wait and see approach, probably continuing with the PSA tests and getting the occasional MRI. But NO more biopsies for the reason already given.

If the cancer (adenocarcinoma) is found to have spread I will then wait until evidence of metastasis - before considering androgen deprivation therapy (ADT) since new research finds little difference in benefit between initiating it right away and once bone metastasis has arrived. The advantage of ADT - even if used in cycles (which I will likely do because of the nasty side effects, e.g. depression, loss of memory, metabolic disease, cardiac problems, high BP etc.) is to lessen risk of bone fractures. Once the cancer spreads to the bones further metastasis naturally will weaken them and increase fracture  risk.

But as I said, I am opting here for life quality as opposed to quantity. My will has already been revised and the estate lawyer is working on the final draft including a revised living will and advanced directive "to take into account what occurred in the Terry Schaivo case". The primary change in the will was to the beneficiaries and also a more exhaustive accounting of assets.

I may have two years left or ten, I don't know and can't say. But the only choice any of us has is to keep on keeping on and try our best to live each day to the fullest  - as we define that term.


To see a video explanation of the MRI process. including the sort of sounds you hear:

https://www.youtube.com/watch?v=DZTXa4qerI4

Post-Brachytherapy Treatment PSA Spikes to 6.0 - Not So "Golden"

UCSF scoring system for Gleason scores and biopsy results.

Within hours of posting the results of my post gall -bladder surgery follow up check (declared "golden" by the surgeon) my primary physician called and left a message about wanting to refer me to the Urological Associates here in COS. This is because the last test - 3 days ago - had disclosed a PSA spike of 2.23 ng/ml to 6.0. I immediately phoned her office back and said that I preferred no specialist referrals at this time, certainly until after I had contacted my oncologist at UCSF (San Francisco).

Even with that contact I referenced the work on salvage therapy by Dr. Kent Wallner, see e.g.

http://brane-space.blogspot.com/2014/01/rising-psa-after-radiation-therapy-dont.html

And also that I was prepared to wait further (given in some cases the post-brachytherapy PSA doesn't finally come down until after 5 years.). In any case, I told him I do not plan on having any salvage therapy whether that be surgery, or further radiation or god forbid anti-androgen therapy. The latter is a nightmare for the men who have it, diminishing their physical capabilities, as well as mental and emotional.  As I told Janice, I'd rather live another 3-5 years with my mental faculties intact (including not suffering from depression or having to take anti-depressants) than live 15 more years as a mental, physical and emotional vegetable.  (Another alternative in the mix is to have another PSA test, the "free PSA". Studies have found when it's less than 24% there is almost a 90 percent chance the cause is cancer or in my case, returned cancer.)

I know my primary doc, however, is an over-achiever and alpha female committed to "perfecto" stats for all of her patients. (Well, she was at least happy my a1c - approaching diabetic levels at 6.3 five months ago -  has gone down to 5.5. because of rigorous exercise and avoiding all sweets, sugary stuff) But as I made clear,  no more  needle biopsies especially given the residual scar tissue from the high dose (1920 cGy) Brachy radiation, and after just having had a gall bladder surgery. No further biopsy referrals unless based on the new fusion-guided method, e.g.

https://health.clevelandclinic.org/2014/09/fusion-guided-biopsy-a-smarter-way-to-look-for-prostate-cancer/

This, as opposed to the standard needle biopsy (which I had in July 2012 - see my post then) which is antiquated by comparison. As noted in the Scientific American Handbook on Prostate Disorders (by H. Ballentine Carter, M.D.):

"Standard biopsies often detect indolent or inactive tumors, that won't spread beyond the gland and become deadly. More worrisome, first-time standard biopsies miss up to 35 percent of dangerous tumors that require treatment."

The UCSF document (Brachytherapy for Localized Prostate Cancer) notes that: "The biology of the cancer makes it likely to recur even after the best treatment." It adds that the cancer "may also change into a different form, say from an adenocarcinoma to small cell cancer".

And if the worse comes to the worst? Let's say I do get that fusion guided biopsy and it shows the cancer is still relatively localized. Then I will adopt a "wait and see" approach rather than rush into anything. If, however, it has metastasized from the original four localized areas and is ready to "burst the capsule" I will have to consider options available - so long as those options don't radically degrade life quality.. I'm also ok with doing nothing, as long as I can get a few years of life quality and critical organs aren't threatened -  or there's a chance to prevent invasion of lymph nodes. All other factors being equal I am ok with a few extra years of quality life as opposed to 12 or 15 of not so great quality.

Heck, I have revised my living will and am now in the process of revising my existing last will and testament. (Which, btw, every sensible American ought to have unless they want the state to grab everything!) Death does not terrify me, and in any case there are much worse outcomes - maybe living longer but developing Alzheimer's disease as my mother did. She lived to be 91 years of age, but the last 15 were mostly survived in a haze, with her unable to acknowledge where she was, or what she had just said five minutes earlier.

In the end, it's all relative and we each have to pick our own terms of surrender ...or not.

See also this informative site on dealing with biochemical recurrence:

http://www.harvardprostateknowledge.org/how-to-handle-a-relapse-after-treatment-for-prostate-cancer

See also:

http://brane-space.blogspot.com/2015/12/testosterone-blocking-cancer-drugs.html

Low T Therapy For Bigger Muscles? Blame This "Remedy" For Medical Interventions You Don't Want!

Kristen was still distraught after losing her hubby Rob, a year earlier. What had been planned as a trip for two to Barbados this year ended up a trip for one. The saga isn't new and will likely unfold in many more households as low T mania continues unabated. How bad is it? According to the article, 'Low T: Real Problem or Ad-driven Fad?' in the AARP Bulletin (July-August, p. 18):

"A 2013 study in JAMA Internal Medicine found testosterone prescriptions grew more than threefold between 2001 and 2011. Data from IMS Health shows T sales rose from $324 million in 2002 to nearly $2.3 billion in 2012. Sales could hit $5 billion by 2018."


As the article also notes, most of this increase isn't based on any genuine medical issue. It is based on ads shamelessly playing to male insecurities. The loss of muscle mass , sex drive or energy -  once described as "getting older" -  suddenly was transmogrified into a condition dubbed "low T" by the Madison  Avenue Ad makers. Thus were unleashed a torrent of print and TV ads from the makers of testosterone replacement meds and gels. One ad actually advised: "Millions of men 45 or older may have low T so talk to your doctor!"

Really? Gimme a break!

In Kristen's husband's case, Rob (then 47) felt he needed an edge at work so began the low T prescription solution. He did feel his energy rebound, his muscle mass increased and his renewed sex drive pleased Kirsten. Only she worried about taking increased testosterone which as a medical person (urology RN) she already knew provided a fuel for prostate cancer.

According to Dr. Mark Scholz, in 'Invasion of the  Prostate Snatchers', p. 42:

"testosterone fuels prostate cancer growth  and prostate cancer is the only type of cancer susceptible to testosterone inactivating pharmaceuticals"

Alas, Rob dismissed all such concerns, according to Kristen, and even increased his testosterone use. If some is terrific, more got to be better, right? Not quite. Within a year Rob's PSA had doubled, and six months later tripled. Finally, under pressure from his wife he reluctantly submitted to a prostate biopsy and prostate cancer was found in five cores with Gleason scores 4 + 5, and two with 5 + 5. The urologist pronounced "advanced prostate cancer" and recommended radical prostatectomy in combination with female hormone treatments.

The next year or so was 'hell' as he descended into depression following the surgery which left him incontinent, his penis shrunken, zero sex drive and with large breasts - arising from the hormone treatments.  Kristen confided that at least he hadn't ended up like another T-using patient who - after his operation around the same time - experienced a vesicularectal fistula-   farting through his penis and saddled with other complications before having to get a colostomy.

Despite all the horrific side effects Rob had to endure, the prostate cancer spewed secondaries into bones and lungs - and he died 6 months ago.  Kristen said if she had one wish it would be to "get men to back off from this silly, idiotic non-solution".

She may well have a point. Even if by some miracle prostate cancer isn't spawned, other negative medical impacts abound. According to Dr. John La Puma, quoted in the AARP article,

"When you take testosterone your body shuts down production. As a result the testicles shrink and you could be using supplementation indefinitely."

He noted this circumstance meant "expense, inconvenience and  worst of all, possible catastrophic health consequences."

Think aggressive prostate cancer. But as the AARP article also pointed out:

"A study published last year in the Journal of the American Medical Association reported a 30 percent jump in the risk of stroke, heart attack and death among men undergoing testosterone therapy."

It would seem that any guy seriously thinking of aspiring to be muscle-bound  and energetic using T, would be advised to watch the video below first and pay close attention! Note the particulars of treating low testosterone, including the fact: a) testosterone can vary during the day so the time you get the blood test is critical, and b) the low testosterone can be due to multiple other causes than natural, including stress, fatigue, diabetes or other hormonal imbalances.


http://www.webmd.com/prostate-cancer/video/testosterone-replacement-prostate-cancer

The AARP article also adds (ibid.):

"But what is a healthy T level for an older man? Doctors can't agree. Many laboratories use wildly varying reference numbers based on the average testosterone levels of young men, anywhere from 300 to 900 nanograms per deciliter."

The Bulletin adds that,  incredibly, just about any purported "symptoms list" will ensure a low -T diagnosis.

The fact is, as Dr. La Puma observes,  most men (maybe 80%) don't need this "therapy" at all, period.  As he puts it:

"All men need to do is eat a healthier diet and be more active."

To reinforce that, "it's found that when obese men shed an average of 17 pounds,  testosterone levels climb 15 percent."

This in addition to quality sleep and regular exercise can help any guy improve his energy and muscle mass as well as sex drive.

Trouble is, too many guys want the "quick fix".  For those who want the T-quick fix to “muscle up” to look better or get more energy, I'd say just be prepared for what’s coming later. It might also help to imagine yourself long past the cancer treatment stage when your dick is U-shaped, your breasts are bigger than Mariah Carey’s (so much you want to hide from your wife) and you have to wear giant diapers just to go to the corner 7-11.