Post-Prostate Cancer Treatment One Year Later: How Are Things Different?

A remote brachytherapy afterloader of the type that delivered my cancer radiation treatment exactly one year ago, Sept. 25, 2012. It's an electro-mechanical system by which 16 transfer tubes  with radioactive Iridium -192 needles are inserted into catheters in a fixed template (stitched to the perineum) to deliver radiation directly to the prostate gland. I received a total dose of 1930 cGy (centigray), in a treatment delivering one single high dose.


One year ago today at this time, I entered the UCSF Helen Diller Cancer Center, in San Francisco, for treatment of stage T1c prostate cancer. Within an hour of my sign -in I was in a hospital gown and given last minute checks before being wheeled into the OR on a gurney. Thus began an "adventure" I never thought I'd ever have, and yes, a life-changing experience.

Only in retrospect did I realize it was even more of an adventure than first believed, since I had received a novel brachytherapy treatment still relatively rare up to that time: one single high dose of radiation delivered through 16 Iridium -192 needle sources. Only 6 months earlier the standard protocol called for  three administrations of lower dose radiation delivered over two days. So, yes, I was something of a "guinea pig". What makes it more interesting, is that - according to  number of sites, as well as research articles (e.g. in Urology Times): "little is known about the sexual outcomes of the treatment, particularly ejaculatory function."

Well, I definitely found out more about that in the aftermath. I had also attempted to learn about it before the treatment, but there was nothing there.....a total information vacuum. Evidently, whoever did get the single high dose therapy wasn't talking.  I did converse with a guy (friend of Janice's from her days working at Nucletron) about what he experienced, but then he had the earlier standard 2-day lower dose therapy. What he told me is that he generally got on ok, except for the fact of having "dry orgasms"- which he was trying to get used to.

This phenomenon, as noted in an earlier blog from last October, was explained by Dr. John P. Mulhall thusly:

"Radiation therapy results in reduced ejaculate volume as the function of the  prostate and the seminal vesicles is to produce ejaculatory fluid, and in most men, will result in loss of  ejaculation completely".

He also observed:

"The amount of radiation needed to cause endothelial damage is tiny, ranging from 0.1 to 1 Gy. It is estimated that between 15 to 20 Gy is required to injure large blood vessels (when given in a single dose).  This damage to blood vessels is known as endartertitis obliterans and may take up to a decade to manifest itself maximally."

Both of these after effects are confirmed in the literature, including for both low dose brachytherapy and high dose brachytherapy.  I have not experienced any "dry orgasms" yet, but Mulhall notes that - despite oncologists' attention to sexual function after 12 months, it is preferable to only begin to examine it closely after 2 years. He observes:

"Any study looking at erectile function outcomes should really assess these outcomes at no sooner than 24 months, if not 36 months, after the completion of radiation."


Perhaps Mulhall's most salient point is:

"Radiation attacks the DNA in our cells. It causes breakages in the DNA, and when this occurs, the cells commit suicide, a process known as apoptosis. Normal cells have better repair machinery to fix some radiation damage while cancer cells do not.  As well as killing off the actual prostate cancer cells, radiation causes injury to the blood vessels that supply the cancer."

The last effect is confirmed at a cancer.gov site (of the National Cancer Institute) which states:

 "Radiation damage to nerves and blood vessels may occur with brachytherapy, and higher doses of radiation may cause more damage"

In addition, there is this difference noted in comparing effects of the radical prostatectomy and radiation therapy (ibid.):

"Radical prostatectomy damages nerves that make blood vessels open wider to allow more blood into the penis. Eventually the tissue does not get enough oxygen, cells die, and scar tissue forms that interferes with erectile function. Radiation therapy appears to damage the arteries that bring blood to the penis."


Well, maybe not much to choose between there! What I've found basically is these effects are manifest and they translate into: much more difficulty in sustaining erections (though not in getting them) and pain sometimes as an accompaniment. PDE 5 inhibitors are not much use, what with blood pressure issues. Another effect not accounted for any place, despite bringing up  dozens of Google pages, (or available literature) is burning semen on ejaculation. Not only does it burn, like my urine - if I fail to hydrate enough on a given day - but it acts as a skin irritant.  Fail to wash it off thoroughly after an ejaculation and the skin becomes red and inflamed. Why has this  side effect not been reported anywhere? Are men too embarrassed to do so? Or is it simply rare and varying person to person?

 Has the high dose radiation produced "radiated semen"? My inclination is to say 'Maybe', but I'd like to know if the burning sensation of the urine, and that for semen,  arise from the same mechanism.  There also appears to be some relationship - certainly of the urine burn - to extreme urgency. More than once while in Europe, for example, I had to suddenly make a mad dash to any accessible RR to empty my bladder. While most men are aware of how desperate it can be when the bladder is full, now imagine multiplying that sensation by two or three times - as you find yourself say in Salzburg, and the only rest room is one for pay that requires exactly one half euro!


I think I have to agree with many observers (including Dr. Mulhall) who insist more longitudinal studies of the post-treatment effects need to be done, and those results documented and circulated. Maybe lots of the effects are age-dependent, who knows? Maybe a younger male (hopefully) doesn't have to fret over something like burning semen  for whatever reason. But whoever the prospective patients may be, all deserve to know more about what lies ahead and how they will be affected. Also, what they can do about them, if anything.

Re: the effects on the arteries, I've tried to counteract those by going to a diet heavy on veggies and fish (salmon, etc.) and limited in red meat.  Needless to say, I am hoping such a strategy will help me cope when the enhanced, longer term effects of the radiation start kicking in within another twelve months or so.  As Mulhall has noted, and despite radiation therapy being "less invasive" (some consolation!) the erectile success rates are the same for surgery and radiation after 24 months.

In the end, any given prostate cancer treatment has a cost, and it seems like it's only a matter of whether one pays it sooner or later.

Mail Brane: Readers Seeking Answers to Questions

Q. I hope you can help! My husband, age 38, had  been diagnosed 2 years ago with aggressive prostate cancer (classified adenocarcinoma with stage T2(c) in biopsy) and had to have the radical prostatectomy or so he was told. The urologist told him he would need to begin penile rehabilitation as soon as the Foley catheter was removed but he refused. He said the pain was still too unbearable after the surgery and couldn't bear any erections from Viagra or whatever. To make a long story short his initial resistance to penile rehab - such as you described in your October 14 blog last year- became hardened. Gradually, he became incapable of getting any erections and his penis deformed. Much like you described. What can be done? Anything? - Barbara B., Orlando FL

A. At this stage it's doubtful since if the therapy isn't done soon after surgery and erections are allowed to lapse as you described, the tissue damage - due to lack of consistent blood flow - becomes permanent. There may be some surgery that can correct the deformation (I presume you mean the U-shape that Dr. John Mulhall describes in his book that I referenced in that Oct. blog) but the urologist would have to weigh in on that. This, of course, is a cautionary tale that those who have radical prostate surgery need to follow this  with penile rehab as soon as possible, though yes, there may be some residual pain. Your question also seems to imply that a radiation therapy treatment might have been better, but generally at the stage you described (T2c) it isn't an option.  Also, remember the effects of radiation increase over time, as tissues become hardened by the delayed radiation impact. This is also why it's essential to remain sexually active, whatever mechanism is employed.

Q. I was disheartened to read in your July 24 post that Colorado Springs had opted out of the marijuana retail business! Don't they know how much money they are losing? Are there any counties in the state that plan to implement the retail businesses? How many have opted out so far? - Clint, Pompano Beach FL

A. At last count some 57 communities in the state had opted out, but 21 remain in play -seeking rational ways to implement legal guidelines for MJ retail stores. Among those latter are Denver, and Aurora, CO. Almost to a tee, the opt- outs are in conservative counties, though they seem to forget they are flouting the voters' will by their opt out (and in many of those counties, Amendment 64 passed!)  I believe they might well pay at the polls next time any of the respective city council members come up for re-election. It never pays to piss off the voters! The mistake was probably making any "opt out" part of Amendment 64 in the first place. It gave too facile a way to deal with the nettlesome problem of how to regulate, where the controls would be and the level of taxation. It was a cheap way out, a cop out. So, I guess cities like Colorado Springs will have to keep on getting revenue from other sources, say like becoming or staying top national speed traps.

Q. Thanks for your post on being child free! (Aug. 18th). My husband and I were delighted to read and now feel much better about our childless choice. But how do you deal with nosey people that persistently inquire why we're childless? It really bugs me! - Delores, Sioux City, IA

A. Tell them: "Mind your own business, please!  Haven't you enough to do with your own time as opposed to meddling in others' lives".

Q. I've been wanting to join Mensa for a long time, but none of my past standardized tests (SAT in 1995, GRE in 2002) have been found acceptable. I dread taking the actual Mensa test because I hear it's a lot harder. Is this true? What can I expect? - Ricardo, Mt. Shasta, CA

A. It's not that big a deal. Below is an image from the U.S. Mensa site showing some of those taking a recent test.

The Mensa Admission Test takes two hours to complete and includes two tests featuring questions involving logic and deductive reasoning. If you score at or above the 98th percentile on either of the two tests, you'll qualify and be invited to join Mensa. Score below....well I understand there is a 5% society (The International High IQ Society) that accepts entrants at the 95th percentile level.

If you'd like a practice test (always a good idea) you can also get an idea if you're Mensa level by taking the home test, e.g. https://www.us.mensa.org/join/mht/

A more dated (1989) example which doesn't cost anything to see or assess can be found at this link:
http://articles.chicagotribune.com/1989-01-04/entertainment/8902220824_1_typists-chickens-eggs

Another shorter version with "Mensa-style" questions and answers:
http://www.agincourtpractice.co.uk/resources/mensa.htm

Q. I get a real kick out of your loopy brother (Mike) who thinks he's a Confederate raider or something. On clicking at the entry link to his blog on your August 8 post I see he always tries to appear this homespun dude with this "My friends" stuff. Who's he trying to fool? He's not friends with anyone! You just have to read his crappy blogs to see how disturbed he is. Any take on if and when he might change his blog again to be more tolerant? Also, what is this guy's damage? Was he dropped on his head as a kid?, Murray T., Norman, Oklahoma

A. I do agree that his 'my friends' intros are a bit over played. He likes to portray himself as this down home, relaxed type of southern dude but his own words and hateful content betray him. He's a raging maniac underneath the soft soap veneer, calling people "apes" (mainly blacks), "libtards", "c*nts" or worse.  As for being dropped on his head, no. But maybe in one too many fights where he took as many blows to the head as he delivered. We know, from looking at the NFL football head injuries that have come to the fore (e.g. Junior Seau), that repeated blows can have deleterious effects on the brain. This can lead to erratic behavior.  As for changing again, I could care less if he does or doesn't. It's his choice to make, and he has to deal with who and what he is. As an aside, it's really goofy and misplaced how he often makes lame invocations of our dad, when dad detested everything about Mike's hateful blog when he was alive.

Q. You mentioned doing a blog post soon on JFK and how he challenged the national security state. When can we expect it? Desmond, Portland, OR

A. That post is still in the process of preparation, as I'm juggling that with completing a book, that's due to launch in about 4 weeks, maybe sooner. The title is 'Beyond Atheism, Beyond God'  (to be published by iUniverse) and will be my final entry in my atheist series, showing how a rational atheism can lead to a Materialist conception of Being. Meanwhile, I am also trying to re-organize a science fiction novel on the Kennedy assassination, entitled, The Lancer Expedition. If all goes well it should be out by Nov. 1st, but hopefully sooner!

Q. When can we expect more interviews with your delightful sister-in-law Krimhilde? (Aug. 12 post) She has me considering joining Eckankar. - Molly D., London, UK

A. The next interview will probably be when I see Krimhilde again, perhaps next Spring. Will keep readers posted!

Men Using T for a Cosmetic ‘Fix’ – Playing Roulette with Prostate Cancer

The news that five million American males are now brandishing their tubes of ‘Androgel’ and other testosterone-delivering gels, etc. is not surprising. The post-45 lot seem to believe they’ve found a new lease on life where biceps pump up, and flabby abdominals turn into hardened six-packs. Their brains work better, or so they claim, so what can go wrong?


Well, how about aggressive prostate cancer – then having to get a surgery or radiation treatment that leaves you with having to use penile implants, endless Viagra and penile injections?


It is amazing how many sites one finds on doing a Google search that pooh-pooh any evidentiary connection between testosterone increases and prostate cancer. One site I located actually referred to any such connection as a “myth”. I have news for them: they are living in a fool’s paradise and furthermore are encouraging male readers over 45 into taking immense risks that they’d be better off avoiding.  The truth is that "testosterone fuels prostate cancer growth" and prostate cancer is "the only type of cancer susceptible to testosterone inactivating pharmaceuticals" (According to Dr. Mark Scholz, in 'Invasion of the  Prostate Snatchers', p. 42).


Two nights ago on an ABC News segment on testosterone fixes, a muscle-bound 60+ year old was shown flexing his biceps and bragging about all his energy ….and so on. Hey, great! But I just hope you’re ready when you have to be treated for prostate cancer – whether radiation therapy or a radical prostatectomy leaving you dependent on penile shots, implants or PDE5 inhibitors, or worse, never being able to get it up again because the cancer is so aggressive that you’re put on female hormones. (With large breasts you will want to hide, to boot).


Dr. John P. Mulhall, author of an academic monograph entitled: "Sexual Function in the Prostate Cancer Patient," also wrote a less technical book for actual prostate cancer patients and their significant others, entitled: "Saving Your Sex Life: A Guide for Men with Prostate Cancer". He makes clear the extent men will have to go to in a process of “penile rehabilitation” to regain sex lives after prostate cancer. In this case, sex lives that can be hampered not only by erectile dysfunction, but painful orgasms and dry ejaculations – even if they do take enough Viagra or penile shots to get the machinery working.

As if that isn’t enough to terrify any macho fool idiot into halting an enhanced T -regimen unless absolutely necessary, there is the prospect of surgical error leading to infection (c. diff.)  and vesicularectal fistula such as reported  by Dr. George Rinaldi on p. 20 of 'Invasion of the Prostate Snatchers'. Rinaldi was not one of the lucky 50% who emerge from radical prostatectomy relatively unscathed. He ended up farting through his penis and saddled with other complications before having to get a colostomy!

Apart from such extreme consequences, something like 50% end up wearing diapers for the rest of their days. This is possible because in the course of the prostatectomy (the most frequently chosen treatment) the urethra has to be sliced in two different places (since it passes through the prostate) then the base of the bladder has to be resected to the remaining part of the urethra excised from the prostate base.


One problem with the above is the response that “it won’t happen to me” – resorting to the exceptionalist meme. But I have news for these guys – it can happen to you unless you’re lucky enough to get the skilled hands of a surgeon that can minimize the collateral damage. Oh, and if you’re thinking about using that fancy dancy da Vinci surgical robot to do it, think again. Accumulating evidence discloses this thing will actually produce worse results unless – I repeat – unless, the prospective surgeon using it has at least 600 such operations under his belt. You really want to take a chance with some clown who's only done 12 or even only 100? Good luck on that!


Radiation treatments, which many opt for instead of surgery, are also dependent on the soundness of the center's treatment planning system and the skill, experience of the radiation oncologists delivering the doses. One thing you don’t want is an excessive dose of radiation which occurs in what’s called an “administration error” which can leave your bowels suppurating and your bladder in a mess, or ulcerating. Oh, and if you’re game for that new method using a giant linear proton machine, just be sure the oncologists administering the treatments don’t have a “geographical miss” – where the proton beam misses the cancer site totally and uh, goes through your bowel or bladder instead! As for a geographical miss hitting your penis instead, well we won’t go there, but it could make a clever horror flick!


Apart from incontinence, the greatest risk that surgical patients face post-op is loss of erectile ability. .The incipient damage is called "atrophy" which increases in probability the longer a patient goes without erection post-surgery. (Mulhall, p. 98) Atrophy is, in fact (ibid.):

"a scarring of the erectile tissue, and if the erectile tissue scars, the patient will never get his own erection back and will always struggle with medication".

Dr. Mulhall goes on to note (ibid.) that "the incidence of erectile tissue damage, as measured by the presence of venous leak is very uncommon before the fourth month after surgery. However, at eight months after surgery it "occurs in about 30% of men and at one year 50% of men".


If any former Mr. T-using Muscleman has these effects post -surgery, and is also unable to sustain enough blood flow he has another little complication to look forward to: a misshapen penis! Mulhall invokes the "use it lose it" saying here. In some cases, indeed, prolonged disuse engenders organs which are badly misshapen (bent as in a U-shape) and essentially unusable because of unequal scarring in different tissues.


Any guy seriously thinking of aping the muscle-bound CEO spotlighted on ABC News (in his T-regimen) 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


If a guy has no T-problems and just wants to “muscle up” to look better, I 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.

What Most Docs Won't Tell You: Effects Of Prostate Cancer Radiation Treatment

In Dr. John P. Mulhall's less technical monograph (op. cit., Part 1), in Chapter Five: "Prostate Radiation and Sexual Function", a wide array of information is presented along with summaries of erectile dysfunction for different treatment modalities, and we also see or understand why a dearth of longitudinal (over decades) studies exist in respect of radiation treatments for prostate cancer. As an early stage survivor who has received this treatment I will also share my experience.


Here's the key for seeing why such studies are sparse: Most men don't want to provide feedback on their sexual activity or sex lives, after such treatments. They feel, for whatever reason, this is no one else's business - but fail to understand that without feedback and information which can be integrated into analyses to grasp effects, they are doing an injustice to other men - who may also have to face such treatments. (In this respect, let me add that I recently completed a UCSF patient form in the aftermath of treatment, and will also be filling Dr. Hsu in on the after effects in an email -or phone consult next week.)

When I first began my search for treatment options, after learning I had stage T1c prostate cancer, I was dismayed by the dearth of solid, consistent information on the after -effects, and especially as they might impact sexual function. What I eventually decided is that there's no central core of agreement on the effects because the data are too sparse. This was confirmed for me as I read Mulhall's Chapter Five.

Let's cut to the chase: Mulhall superbly describes first how radiation works to effect a cancer treatment (p. 78):

"Radiation therapy works by killing cells. It kills not just cancer cells but normal cells. However, those cells that are the most rapidly dividing are the most sensitive to radiation (as is true for chemotherapy). Fortunately, most cancers have cells that are dividing more rapidly than normal cells.

Radiation attacks the DNA in our cells. It causes breakages in the DNA, and when this occurs, the cells commit suicide, a process known as apoptosis. Normal cells have better repair machinery to fix some radiation damage while cancer cells do not.  As well as killing off the actual prostate cancer cells, radiation causes injury to the blood vessels that supply the cancer."

Alas, as Mulhall notes later, these blood vessels- many of them - also supply blood to the erectile tissues. Most shocking to me was to read that erectile success rates are the same for surgery and radiation after 24 months, and while radiation oncologists tend to look at sexual function after 12 months or so, Mulhall indicates it needs to be 3-5 YEARS after (p. 83) . He refers to this as a "glaring deficiency" (ibid.) and adds:

"Any study looking at erectile function outcomes should really assess these outcomes at no sooner than 24 months, if not 36 months, after the completion of radiation."

On reading this my own erectile success in the wake of my treatment (on Sept. 25th) was put into harsh perspective and my hubris vastly tempered. Indeed, within 3 days of the treatment I'd been able to get and hold an 8-9 pt. erection, and in doing so believed I'd "conquered the world". How foolish! On reading Mulhall's chapter, I am now left to wait and see what progressive deterioration awaits, and in fact, what assorted methods of "penile rehabilitation" I will be left to take, unless I want to just let everything atrophy.

But I get ahead of myself a bit. Another aspect is "loss of ejaculatory volume". Mulhall on p. 80:

"Radiation therapy results in reduced ejaculate volume as the function of the  prostate and the seminal vesicles is to produce ejaculatory fluid, and in most men, will result in loss of  ejaculation completely".

In my case, this has not yet transpired . I was first able to attempt an ejaculation two weeks and two days after my treatment, and following two successive massages from a trained massage therapist, who I will call 'Mrs. D'. This was mainly to try to eliminate a persistent painful kink-knot under the back left shoulder blade - caused by being in an uncomfortable position in the Treatment Room for nearly 4 hrs. She worked intensely on that area - and associated neck 'scalenes'- and also gave a whole body massage. Within a day of this the burning urination I'd been experiencing ceased. Causal connection? Maybe, maybe not. In any case, I felt confident enough to attempt an ejaculation but hadn't yet read Mulhall's warning about another unwelcome side effect, dysorgasmia (orgasmic pain, p. 113). As Mulhall observes:

"This is a peculiar problem which is seen more frequently after surgery than radiation, but is seen in both cases, and believed to be related to spasms of the muscles of the pelvic floor at the time of orgasm.  The bladder neck is supposed to close at the time of orgasm, and the belief is that the bladder neck muscle and the muscle surrounding this in the pelvic floor may in some men go into spasm at the time of orgasm with pain referred to the penis, testicles, lower abdomen or rectal area."

Mulhall goes on to state the pain "typically lasts from seconds to a minute" but in some men can last for hours after orgasm. In my case, the pain was much like that experienced as the first needle entered for my prostate biopsy back in July, with an incinerating pain referred to the whole urethra. That lasted maybe a minute, but this first orgasm after radiation treatment saw the pain lasting up to five minutes afterward. It was so bad I almost felt I'd pass out, maybe 9.5 on a ten scale. Meanwhile, only bloody fluid was produced as ejaculate.

The negative indicator here, with which I certainly concur, is that such orgasmic pain can impede a man from any sex activity altogether. This is quite understandable! Why would you want to repeat a pain that is so horrendous via a sex outcome (orgasm) presumed to be pleasurable? The form of rehab or prescription for avoidance of the pain is Flomax (ibid.) So I will have to monitor and see if the pain subsides - if I ever attempt another orgasm! - or if not, obtain some Flomax!

Why such harsh results? Never mind the inflammation aspect, i.e. "radiation causes inflammation in the prostate, urethra and bladder" (p. 79), Mulhall also notes (ibid.):

"The amount of radiation needed to cause endothelial damage is tiny, ranging from 0.1 to 1 Gy. It is estimated that between 15 to 20 Gy is required to injure large blood vessels (when given in a single dose).  This damage to blood vessels is known as endartertitis obliterans and may take up to a decade to manifest itself maximally."

Great! Recall my single dose for the whole prostate volume was 1930 cGy or 19.3 Gy, or near the top of  the dose threshold to injure large blood vessels. In addition, I received 18.5 Gy for the urethra, rectum --- which means blood vessels in those areas will also likely be affected in ten years at the "maximal level" - whatever that means. (Mulhall suggests loss of any erectile capacity unless his "penile rehabilitation" methods are employed.)

But, suffice it to say, by age 76 I do not believe I will be getting any full surgery done for getting an implant in place, or injecting myself with a 29-gauge needle. Hopefully, as in all cases of aging, I learn to let go gracefully and just be thankful for the splendor of nature and being able to partake of it.