Walnut

Subscribe to RSS Feed for recent updates
Subscribe to RSS Feed for recent updates

YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

 

SURVIVOR STORIES  :  DISCUSSION FORUM  :  WIVES & PARTNERS  :  TELL YOUR STORY  :  UPDATE YOUR STORY  :  DONATIONS  :  TROOP-C

YANA HOME PAGE  :  DON'T PANIC  :  GOOD NEWS!  :  DIAGNOSIS  :  SURVIVING  :  TREATMENT CHOICES  :  RESOURCES  :  ABOUT US  :  MAIL US

 

 BRONZE 
This member is a YANA Mentor This is his Country or State Flag

Jon G and Karen live in Utah, USA. He was 55 when he was diagnosed in August, 2016. His initial PSA was 6.80 ng/ml, his Gleason Score was 7a, and he was staged T2b. His choice of treatment was Brachytherapy (High Dosage with External Beam). Here is his story.

My PSA levels were tested during a routine physical exam near my 55th birthday. The results where not the birthday present I'd been hoping for. General practitioner referred me to a urologist for further eval.

Turns out that the urologist not only had a dink, he WAS a dink! He gave a cursory (negative) DRE and pretty much said that I likely had prostate cancer and needed a biopsy which he scheduled for the following week. I was asking a lot of specific questions which eventually caused him to sigh loudly and declare, "Oh my gosh, YOUR generation, so many questions! I remember the tough old World War II vets who'd hop right up on the table declaring 'Hey, lets take care of this thing.' " I couldn't bail out of there fast enough.

Next stop was a Physicians Assistant for a highly recommended urologist. Using the PA was the only way that I could get a timely appointment. He discovered that I had a urinary infection. Good to know -- the biopsy that the other urologist had recommended could have sent me to the hospital! I was hopeful that the infection was the reason for my elevated PSA. Took 6 weeks and 2 rounds of antibiotics to get rid of it. But the PSA did not drop afterword. Damn roller-coaster ride!

I was of the attitude that there is too much over-treatment going on. After getting in to see the urologist, I was refusing a biopsy. OK, I'll admit it -- I'm a medical sissy! Medical procedures scare the crap out of me! Urologist was patient and about it. She recommended a PCA3 test. Cool! She needed to perform another DRE, in an aggressive fashion, for the test. "Oh-Oh," she stated as she performed the DRE. THAT is not what you want to hear when the Doc has their finger up your rear. She'd found a bump. "It's ok, she said, we'll run the test anyway." The roller-coaster ride continued when the results came back: about an 85% chance that I had PCa. And then there was the lump. And the elevated PCa. The urologist told me that I had 3 strikes against me and she'd not let me out of her office unless I promised to return for a biopsy. Crap, I could find no way out.

It was October before I submitted to the biopsy. 7 of 12 cores positive, each about 35-45% involved, Gleason grade 3+4. I felt F'd, and not in any good way. The Urologist simultaneously had requested that my samples also be forwarded to a lab that did a genome (Prolaris) test. They found me to be almost dead center of the "Intermediate risk" group.

I'd already set up an appointment for a second opinion (knowing that I was going to want one), even before I'd received biopsy results. So off I went to the Huntsman Cancer Institute in Salt Lake City to visit with a radiation oncologist. If I wasn't already freaked-out enough, I certainly was after that experience. He declared that, since I had 3 factors which placed me in the intermediate risk category, I was automatically bumped up to a "High Risk" patient in their minds, the 3 factors being Gleason 7, a Palpable tumor on DRE, and more that half the gland involved (7 of 12 biopsy samples). He set me up for a 3T MRI as soon as possible but recommended that we start on chemical castration immediately. Of course he referred to it as "Androgen Deprivation Therapy" but same difference. Followed by Seed implants and EBRT. Freaked the ba-jeebers out of me. Yes, when you get PCa, ba-jeebers becomes an actual term and it gets knocked out of you quite often. They assured me that the Chemo-castration was "reversible." I refused the injection, stating that I had a final consult with my urologist coming up as to her final recommendations.

Back to my urologist. She was recommending a Radical Prostatctomy. Not exactly a big surprise coming from a Urologist. I started to pin her down -- asking questions that were relevant to me and my lifestyle:

  • Isn't one of the sphincters that controls urine often damaged during such surgery? (Yes)
  • Wouldn't that make it difficult to control urine when I'm mountain biking with my kids or coughing during a lecture that I'm giving at the university? (Yes)
  • What are these "Pads" that you're talking about? I can see a pad working for a woman 'cause they're lined up all vertically, but lets say that I'm butted up against a leg and urine leaks out -- laws of physics say that the urine will cling to the leg and laws of gravity say it'll be drawn downward. Aren't I going to have a nice funnel-shaped wet spot on my pants with only a pad? Wouldn't I need a diaper to prevent such issues? (Yes)
  • What about my particular condition, being high-risk. Isn't there a big chance that I'll end up with positive surgical margins or something over in the lymph nodes? Won't they have to radiate me then anyway? (Yes, she assessed my chances of that happening as 50%)
  • OK, what's Plan B?

She ultimately referred me to GammaWest Radiological Cancer Services. They called that day to arrange a consult. Off I went to meet another radiation oncologist, this one a specialist in HDR Brachytherapy along with associates who's expertise lay in EBRT of the Tomography variety.

I will add to this story, but I got this far typing it and actually have to run off for today's cancer treatment! Woo-Hoo! Errr...maybe that's undeserving of a "woo-hoo" but I'm staying positive about things! Back with more later. Hey, if nothing else, this wordy story will give someone some decent sleepy-time late night fodder to help doze off! :)

UPDATED

December 2016

... this is just a continuation of my previously interrupted story. PCa has a way of interrupting like that! ...

So off I went to Gamma West for a (90 Minute) consult. Very thorough. HDR Brachytherapy isn't the most widely used treatment, by a long shot, and I had lots of questions. Felt very comfortable with the Doctor. Toured the facility including the robot that is used for the Brachy treatment and I was shown the software used to calculate treatment doses, how they were adjusted depending upon individual anatomy, etc. These guys came off as pros.

However, this Doc was also suggesting hormone therapy. I told him that I would think about it but that I felt that the potential side-effects for chemo-castration where perhaps too detrimental for a man of my age. He informed me that he had 10 Doctors that he worked with and he would take an informal poll of them as to their recommended treatment for a man in my particular PCa situation. He'd get back after the weekend.

The following Friday the Doc from Gamma West and I talked at length via phone. He informed me that of 11 doctors, 2 would be comfortable with my receiving HDR monotherapy, 2 would be comfortable with my receiving EBRT & HDR Brachy, and 7 recommended Chemo-castration + EBRT + Brachy. I finally agreed to complete all three treatments -- and promptly changed my mind after sleeping on it that night! The following Monday I signed up for EBRT (Tomography) and HDR Brachytherapy combination treatment -- no chemo-castration.

The Doc was fine with my choice but also wanted to see the results of my upcoming 3tMRI, as did my urologist whom I'd called all freaked out about my choice. The MRI came back totally clear, other than an area on the prostate where the Urologist had found something via DRE. No indication of extracapsular extension, no indication of seminal vescicle or lymph node involvement. Both Docs where now on board with my decision, and I was feeling more confident as well.

An MRI, though, cannot fully rule out extracapsular extension or lymph node involvement--it simply helped confirm that there was no heavy or advanced involvement. Partin tables and MSKCC nomograms still statistically show that I've got a 70% chance of extracapsular extension and about 6 to 8% chance of lymph node involvement. Thus my agreeing to the EBRT portion of the treatment. Kinda like an insurance policy. It ain't free. There will be extra side effects but they are of a reasonable nature to me. The chemo-castration though? Too many potential side effects for too little PROVEN benefit. Most literature on chemo-castration was completed at a time of lower total doses and lower dose rates than what is provided in today's more focused radiation treatments. The research seems split at this point as to whether chemo-castration actually helps in treatments such as what I am receiving. In fact, I consider my "main" treatment to be HDR brachy and chemo-castration has been shown to be completely ineffective in aiding that particular treatment's efficacy.

So the mod's (owners?) of this particular website state that one of the main reasons PCa patients read these personal stories is to glean information as to why certain treatments where chosen. I'm so wordy that those reasons may have been lost in all the paragraphs above. So here's my attempt at a sort of an "Executive Summary" of why I felt that the treatments I chose where the best FOR ME. Note the capitalization. My choices where based on my own fears, experiences, age, and lifestyle. Your choices will almost certainly vary. I'm of a firm mind that their is no best (single) solution that fits everybody. I received an email from a "Jon R" whose story is near mine. He chose Prostatectomy and it sounds like he has had a great experience and it's going very well. He was supportive of my choice and I am supportive of his. I don't mean to "ding" anyone else's choices with my descriptions below! Again, these are just MY reasons as respect to MY fears and MY lifestyle. Your mileage will vary!:

  • Loss of urinary control was a huge fear of mine (unwarranted or not). I am very active and have to present in front of large crowds quite often. I felt that the risks of incontinence were greater with Prostatectomy.
  • Experts of a certain treatment type were readily available to me. I believe Gamma West Cancer Services to be some of the best and most expert at treating with HDR Brachytherapy in my geographical region. I'm sure they exist, but I could not find anyone that I trusted as much in my area as far as a surgeon to complete Radical Prostatectomy. I went for the people I felt could most capably treat my PCa, in this case, the folks who were experts in HDR Brachy.
  • Statistically, I had a large chance of cancer cells ouside of the prostate. I felt that Prostatectomy would be an inadequate way to address that problem and there was a very high chance that I'd end up needing both Prostatectomy AND Radiation therapy, thereby suffering the side effects of BOTH treatments.
  • Confidence in a specific Doctor. He can communicate (gave me his cell phone number, which I've used twice now and which he's responded to twice now). He was ready to accept and support me in whatever choice I made, at one point telling me, "Jon, I can tell you've researched and continue to research this thing. There will come some point, though, where it comes down to a gut feeling -- what you YOURSELF thinks is going to be best. That's what you should go with." And I did!

I've now been through 14 EBRT treatments. The main side effect has been an increase in urination frequency. I've started taking prescription "FlowMax" which has helped a great deal. Hasn't really bothered me except at night when I've had to get up 4 or 5 times (and as a person with insomnia that is NOT a good thing!). I'm now down to once or twice a night with the FloMax.

My confidence in my Doctors has only increased, thus far. I was set to complete EBRT 2 days after Christmas. During initial consult for EBRT, I'd queried and found out that the last 3 EBRT treatments where almost entirely focused on ONLY the prostate itself -- really blasting it. I texted my Doctor and asked if I could receive an early Christmas present. Since I am receiving HDR Brachy after these EBRT treatments, couldn't I just skip the last 3 EBRT treatments? I mean, HDR Brachy is what is really going to blast the tumors out of the prostate itself -- the EBRT (in my case) is more for treating possible external micro tumors. My Doc readily agreed and will up the dose during HDR Brachy treatments to compensate. Their willingness to customize an established treatment routine is of great value to me and is very much appreciated.

I will try and report back sometime in late January with an update as to how the Brachy therapy went. Then it'll be a 3 month wait for the first PSA test. One thing that's obvious? I'm going to have to learn some way to be mindful -- relaxed -- living in the moment -- rather than an anxiety ridden nutcase obsessing over PSA results for the next decade! Crossing my fingers!

Good luck to you all, whatever your particular choice of treatment for YOUR personal situation. We're all in this together and if anyone has any questions about my treatment choices be sure to give me a yell. Thank you so much for posting all your stories and for the owner(s)/maintainer(s) of this site. I've learned a lot by reading about your chosen paths.

UPDATED

January 2017

Well it's been a week since I finished the last session of HDR brachytherapy. I'm a tad bit freaked out at this point.

My wife and I were still very sexually active ... but my penis has gone totally numb after the last procedure. Radiation oncologist is very casual about it, "Oh yeah, we see that sometimes. It won't be permanent for sure. Usually better in a few days. Sometimes can take a few weeks. Very rarely it can be a couple of months to fully reverse." DAYUM. I did not know of that particular side-effect for brachy. Looking online, I now see some other references where they describe penile numbness as a possibility for brachy with it resolving fairly quickly ... or sometimes never. Ouch. I'm pretty sick of this cancer and was looking forward to being done with it and the side effects of treating it. Nothing to do but wait, I guess.

Other side effects include constant pain and constant need to urinate. Feels like I've got a brick stuck up my rear end. They prescribed nothing after the procedure so I've been hitting Ibuprofen (and sitting on ice packs), but that has really trashed out my stomach. So just living with the pain. As far as urination? Every 1/2 hour since the last brachy procedure. I try to drink less in the evening (no alcoholic beverages) but even at night it is about every hour as far as frequency. Tough to get any deep sleep under those conditions. I'm taking Flowmax twice a day but that does not seem to be helping at this point. No suggestions from Doctors.

At the moment? Kinda wishing I'd not done this. But I'm probably just tired right now. It is hard to go from perfect GI, Urinary, and Sexual functioning to this. Hopefully things will clear sometime in the near future. Crossing my fingers.

Good luck to you all out there!

UPDATED

February 2017

Whew! My penis is back!! LOL! The numbness faded gradually over the last week or so, about two weeks after the last brachy treatment. Seems like there's still a tad bit of numbness but it's close to full sensation again.

Also, the urination frequency problem has pretty much cleared. I can go a full night without getting up to hit the restroom. I DO try and avoid acidic drinks (soda & juices, for example) during the day and quit drinking much at all a couple hours before bedtime. All manageable and I'll probably start adding some of that back in as I continue to heal. No pain at all anymore.

I'm going to be a bit graphic here, but sex has been a fun part of my life and my wife and I have still been active, even after 31 years of marriage. I'm sure it's the same for many other guys with PCa. Anyway, things are pretty good in that area. Ejaculation is a really weird feeling now. There's not as much ejaculate and it just feels different up inside. Hard to describe -- but just different, not necessarily worse or anything. But it's all good, all the "hydraulics" seem to be up and running! Of course, they say that with radiation, ED problems happen over the next year or so -- so we shall see.

First PSA test and follow up visit with urologist comes in April.

Good luck to ya'll! I doubt many folks read these things (there's a lot of stories here!) but if you have any questions be sure to give a yell!

[This website has over 20,000 visits every month, so these stories ARE being viewed.]

UPDATED

April 2017

Had my first PSA test and visit with Urologist this month (April 2017). The 3.54 PSA kinda freaked me out 'cause I've a friend who had similar treatment and his PSA dropped to 0.5 on his first visit after treatment. However, apparently, there can be a lot of variability. Me, being "younger," things may not drop as fast. According to Uro, a 50% drop is just fine and I'm right on track where I ought to be. Whew!

I think I was a bit premature in my last update though, as far as the numbness of the penis being gone. It seemed better for a bit but never really went away completely and actually seemed to get worse. Then E.D hit me. Sheesh, I was expecting that further out, timewise. They tell me that I may have suffered some (pretty rare) nerve damage, either from needles or otherwise. Lost nocturnal erections and ability to get a decent erection. My wife and I have still been very active after nearly 35 years together, so that was not the best side-effect to get hit with so soon.

Good news on that front too though. Sildenafil (generic Viagra) works wonders! Whoot!! I was pretty skeptical that it'd help at all -- You know, those commercials with the 30-year old supermodel cajoling us guys with her sultry voice into trying out those single-packs and all? I kinda feel that if your product is crap, you throw a supermodel into the advertising to distract from reality! But it really does work for me -- super well. I (we) are smiling again on that front! By the way, rather than paying 30-60 bucks per pill, it is currently possible (here in the USA and probably elsewhere as well) to obtain generic Sildenafil Citrate (the active ingredient in Viagra) as a generic 20mg pill. Brand name Viagra comes in 25, 50, or 100 milligram sizes so I ended up pill-splitting and taking a 30mg dose of the generic and it works great (at least for me -- I understand that it doesn't work for everyone). The cost is 75 cents per pill so I'm spending about $1.15 a dose -- about the price of a condom these days? WAY more affordable than the brand name version. I can actually afford to have intercourse with my wife LOL! I wanted to mention it here, 'cause I'm not sure that many folks know about the generic option, and so many of us end up in the same E.D. boat together.

Next PSA and visit with radiation oncologist comes in early August. I've still got to work out a more proficient way of reducing the anxiety of those dang tests. Screw the cancer, I'm gonna have a dang heart attack waiting on PSA test results!! Not going to worry about it now -- gonna enjoy a great spring and summer with my family. New grand-daughter is on the way!

Best of luck to all my fellow cancer survivors. Here's to hoping that you stay positive, happy, and fighting the good fight! :)

UPDATED

June 2017

Went for a physical today, unrelated to any prostate issues. Last years physical resulted in my cancer diagnosis so I was hoping for a more positive outcome this time. Everything's fine, although they did do a PSA check while there and that came out to 3.18. Dayum! I keep hoping for a quicker drop on that, but at least it's going in the right direction. It was done at a different lab then the others so I guess that can be a factor too.

My next official appointment with radiation oncologist is set for August. I'm considering skipping it as I don't much see the point. PSA is dropping slowly and nothing's going to be done whether it continues it's slow drop or if it rises a bit. I'm considering just going with the scheduled November test and skipping the August one. As much as I try for it not to, it always causes such anxiety.

Side effects have finally dropped off. Being one of the unfortunates to have suffered some nerve trauma from all the needles they jammed up my bottom-side, all kinds of wierd things were happening for awhile. When soft, my penis looked like I'd just gotten out of a freezing-cold glacier-fed lake, for example, and I no longer had nocturnal erections. Urologist was concerned about "penile atrophy" and she put me on low dose tadalafil (active ingredient in Cialis). I had some acid-stomach problems with that so had to fool around with doses but have finally settled in on a formulary-pharmacy-supplied dose of 9mg tadalafil along with 10mg L-arginine, every other day at dinnertime. WOW! Night and day difference. I'm totally back to my pre-treatment condition. Full potency and no more glacier-fed-lake syndrome! Insurance won't pay for such meds but the cost is now down to $45 per month so it's probably about what my copay would be anyway. Freaking Cialis brand name would have been setting me back $320 per month. Ouch!

So all is well at this point ... just hoping, of course, that PSA continues it's downward trend, even if it is a slow drop.

Good luck to you (us!) all!!

UPDATED

August 2017

Went for a 6 month post treatment follow-up with the radiation oncologist. Really nothing exciting to report, all is well. PSA is down to 2.07. Side effects? Still taking 9mg Tadalafil every other day. Not sure that I need it, now that nerve trauma is past, but there's a bit of research showing that it can help minimize ED that occurs later with treatment via radiation. Of course there's research that shows it does nothing too! But some of the research was for pretty short-term doses. I think I'll finish out the year with it at least. Anyway, I've no ED (even if I've forgotten to take a dose of the Tadalafil) but it's a bit weird in that I still do not have any nocturnal erections that were common before treatment. **Shrug** IDK!

Bowel wise, I used to be a regular one-a-day kinda guy and that has increased to 2 or 3 a day. Oncologist recommended I try a "Metamucil" type fiber supplement. It's not really a problem, rather more of an inconvenience, but I'll probably try it for a bit just to see.

Urinary wise, I have to be careful what I drink after dinner. Diet Cokes, or any of those flavored water drinks, and I'll be up pissing half the night! Stay away from 'em and I'm pretty much back to my pre-treatment condition (up once a night on occasion, but often sleeping right through a full night).

So, thus far, the PSA counts are as follows:

Pre Treatment = 6.88; 3 month Post Treatment = 3.54; 5 month PT = 3.18; 7 month PT = 2.07

Feeling awesome -- back at the gym regularly trying to lose the 7lbs or so I gained from all the stress of the last year!

I hope that you all are doing and feeling as well as I am. Gonna beat this thing!!

UPDATED

October 2017

Back in for 9 month PSA yesterday. Hate the damn things! It's at a nice lab though, in that I can just go in unscheduled, take the thing, then drop back by in a couple hours for the results. Beats waiting for the nurses to call me with the results two or three days later while I stew over the thing.

So I think I've misreported my starting PSA a bit in that I've been going off the PSA present at the time that I started this journey, which was 6.8. By the time they actually started treatement, and did an updated PSA, I was at 7.08. So my ongoing results thus far are:

  • Starting = 7.08
  • 3 month = 3.54
  • 5 month = 3.18 (different lab)
  • 7 month = 2.07
  • 9 month = 1.08

So I'm pretty pleased with it thus far -- hoping for continued drop, of course, but it's getting there.

One of my minor complaints was bowel irregularity. Rad Onc recommended a "metamucil" type supplement which has actually worked great.

Another issue which has popped up between 6 and 9 month checkups was peeing issues. Not being able to go at all, especially if urgency hit me. Just a lot of dribbles. Or if I had sex with the wife and didn't orgasm? I'd be dribbling for hours and unable to empty things.

I had to switch Rad Onc's due to insurance issues (a sad state of affairs here in the U.S.). New Doc recommended that I go back on Tamsulosin (Flowmax generic). I'd quit Tamsulosin a couple of months post treatment, back when I started Tadalafil due to the nerve trauma I'd experienced. At that time, it didn't change a thing when I quit. Went back on it now though and holy cow, a world of difference! Totally back to normal now.

Doc thinks that maybe my prostate is in the last throws of its life and is swollen up irritated. Hopefully that'll fade soon and I can drop the Tamsulosin again. Actually, in my mind (and that's a small matter!), it seems to me like my 1.08 PSA reading is pretty dang good for now, considering the irritated, swollen condition of the prostate.

Anyhow, all is going well. I do still have numbness in the end of my penis and still seem to have some numbness in shaft as well. I was kinda pissed at treating Radiation Oncologist for not even warning me about such a side effect but new Rad Onc said he has actully never seen such a condition occur in his practice either, at least on a permanent basis, so I guess I'm just a bit unlucky there. He thinks that feeling may still come back a bit more, much like a radical prostatectomy patient's ED can continue to improve for a couple years. It's really not a huge issue (there's a pun there if ya think about it! LOL). Just makes it a bit harder to reach orgasm at times. My wife teases me, telling me that I now have the orgasmic response of a woman! It'd be a definite cure for PE, if ya had that!

So everything seems to be working great although I'm still on a couple of meds for now. I hope that ya'll out there are coming along just as well. Keep up the fight and appreciate every day. That's one thing this disease has given me -- a jarring appreciation for each and every single day. Can't take it for granted anymore.

Jon's e-mail address is: utahjon AT outlook.com (replace "AT" with "@")


RETURN TO INDEX : RETURN TO HOME PAGE LINKS