I am 50 as of this writing and I will be undergoing a robotic prostatectomy on April 9, 2014.

If you are reading this, the chances are good that you have already been diagnosed with cancer and you're wondering what to do next. I was misinformed and uneducated about prostate cancer. I have no family history of cancer (I was adopted so I have no family history of anything). I thought it was an old man's disease (70+). I thought there were obvious symptoms like intermittent flow, frequent urination, getting up at night to pee, etc. With my type of cancer, there are NO symptoms until it is almost too late to do anything. Encourage your friends to get at least one PSA test in their 40's to set a base line for future tests. If it starts creeping up, have the digital exam (no computers, just a cold finger for 5 seconds). Yes, the DRE is embarrassing and uncomfortable but it may have saved my life.

My first PSA reading three years ago was 4.0 and I blew it off. I had no external symptoms and chalked it up to recent sexual activities or a test anomaly. My PCP didn't push me to take any action. Little did I know, watchful waiting had begun. This year in January, my PSA measured 6 and I went to a Urologist and the DRE detected nodules. I got a biopsy a week or so later (under local anesthetic) and the results came back that I had four out of twelve samples positive for cancer (Gleason 7/3+4).

I am a workaholic so I was leaning heavily toward brachytherapy combined with external beam radiation (there is a clinic a mile from my house that does this and calls it ProstRcision). One day out of work to get the seeds implanted, one day with a catheter then 7 weeks of daily treatments. I met with the radiation oncologist to discuss it. My FLOW metrics were poor (I was still healing from the biopsy). I went to a seminar at the clinic about the radiation process. You have to have a full bladder and empty bowels for every treatment so that the radiation can focus on the same target area and minimize damage to surrounding tissue. The treatments take about 20 minutes to get positioned and then you get the zap. Their goal is to neutralize the prostate completely along with killing the cancer. There is a $50 per treatment co-pay with the insurance I have. The results are not immediate. The PSA should reach a low point (the Nadir) after about 27 weeks. It should be below 0.2 or undetectable and then you are pronounced "cured." I have heard from several older men who have done well with radiation treatments.

I had a CT scan and there was no detectable spread of the cancer yet. I did not have a bone scan.

After talking with a family member who had an open radical (back in the 80's) and a friend who is a family physician, AND reading Dr. John McHugh's book (via Kindle), THE DECISION, I chose to proceed with the robotic radical prostatectomy. I am young (yes, I think 50 is still young), I am in fairly good health (I have high blood pressure but it is under control). I would rather get the cancer completely removed and get more immediate results than wait for it to possibly spread. I did not want to risk having the radiation cause cancer in my bladder or bowels (even though they go to great lengths to protect those areas, there is still a risk).

My understanding is that the surgery will last about 5 hours (I'm also having a hernia repair and having the local lymph nodes removed). I will stay overnight and be sent home the next day after the drain tube is removed. I don't look forward to a week (or more) with a catheter. I don't look forward to having to learn how to control my bladder all over again. I don't look forward to wearing pads. I don't look forward to possible E.D. issues. I DO look forward to surviving this to see my daughter get married (in 20 years) and give me some grandkids.

I have found that humor is a great coping mechanism. I have been keeping the mood very light in my discussions with co-workers, friends and family. I post funny stuff on Facebook about it. The darkest period during this time was the week between the biopsy and getting the results but I was resigned to the fact that something was wrong so it wasn't a great shock. The hardest part up to now is responding honestly when people ask, "How are you?" For acquaintances, I just say fine. For people I know well, I give them the short answer of what's going on. I wish people would figure out some other small talk besides "How are you?"

If the surgery goes well, I will update my post here.

This is my first post since the surgery I had on April 9, 2014. Everything went very well. Dr. Msezane was wonderful to work with. She kept me informed of every action and all the possible consequences. I was up walking by midnight. I have been able to eat just about anything. I came home at 11:00am the next day with the catheter in. No narcotics were administered. I only took Advil and Tylenol alternately and there has been little to NO pain (just soreness in the incisions). I am pleasantly surprised by that. The cath, while mildly annoying was not painful at all. Tying the tube in the "up" position temporarily to restrict movement while walking was a great discovery. The nurses gave me the tip to use Neosporin on the "exit" to avoid infection and keep it lubricated, minimizing discomfort. I used Miralax and have had no bowel issues. The cath was removed after 6 days. It took my breath away but it did not hurt. I started leaking immediately (have some paper towels ready!). I have only had to use one pad per day so far (I use the Depends Guards max surge protection type). I do not leak while sleeping. I have good control for the most part and can feel the urge to void and the stream is fairly good.

I have lifting restrictions for four weeks.

The path report kept my stage the same T2a and Gleason score the same (7=3+4). Adenocarcinoma of the prostate. It had broken through the capsule so some surrounding tissue was removed as a precaution. That tissue was cancer free. The lymph nodes and seminal vesicles were removed and showed no cancer (I can have climaxes but no more ejaculations--my wife says that is the best side effect ever). I go for my first post op PSA test in 6 weeks (May 21, 2014). If it is anything but zero, we will set up a course of external beam radiation to zap anything left over.

I was given some Staxyn samples which I have not taken yet. I was asked to wait a week post cath to engage in sexual activity. I can say that enough nerves were spared that I am able to achieve a very pleasurable feeling so far. If it is not too explicit to talk about here, I will report on the success with the ED meds.

I had high anxiety about surgery in general going in. All those fears melted away when I woke up in recovery. The hospital staff was great. I did some practical jokes while I was there that lightened everyone's mood. I would not hesitate to do everything the same way if I had it to do over. I wish I had caught it sooner but I am glad we got it now. I have funny stories on my facebook page if you want to read them (they are public and I have no shame (or dignity).

I wrote this poem for my nurses and took it with some doughnuts and flowers a week after surgery:

When my prostate gland took front and center
And the rectum sign said do not enter
Your gentle hands and tireless feet
Brought me apple juice and things to eat

As my Fart Machine was passing gas
I fooled some folks and had some laughs
We shared some time and shared some talks
You helped me down the hall with walks.

You warned me about the little prick
I hope you meant the needle stick
As the airbags on my legs inflated
You made sure my cath was un-manipulated

You gave me tips for sterile home care
And showed me what to put "down there"
You gently pulled the drain tube out
I made it through without a shout

Doctors and surgeons may start the story
Nurses too should share the glory
Unsung heroes doing thankless jobs
Healing hearts and minds with cotton swabs

"Undetectable"

I had the six-week post op blood test for the PSA level on May 20, 2014. I was a little apprehensive since I had positive margins (the lump had expanded beyond the capsule). I got an e-mail of the lab results and a phone message from the Urologist on May 27th. My PSA is now less than 0.10 ng/ml or "undetectable" as the nurse put it in the phone message. YIPPEEE!!! I will have to track it periodically for the rest of time to make sure it stays undetectable. There are super sensitive test for readings under that in the hundredths but I don't see the point in causing needless worry when the threshold to take action is above 0.10. Since it was not "zero," it will likely always fluctuate. I don't think anyone will ever tell me "congratulations, we got it all, you're cancer free, have a nice life," but this was pretty close.

Bladder Control.

I went back to work on May 21 (after six weeks off) and my friends gave me a nice welcome back party. They have made it their goal to keep me laughing (testing my continence). I return the favor by discussing every detail. I use only one shield type thin pad per day most days. I only have minor leaks when I pass gas (the same muscle holds in the gas and the urine, relax for one, the other will follow). I have noticed that I have occasional spurt when I have an erotic thought (that relaxes the PC muscle slightly I guess). I have not had any accidents of leakage at night or beyond what the pads can hold. I don't even notice the pads anymore. I continue the Kegel exercises when it comes to mind. I try not to eat things that will cause constipation. Straining hard for that causes some blood spots in my urine, which is only temporary. I asked the Uro about this and it is because the new bladder connection shares a wall with the colon area and it is still healing in there. I took softeners for the first couple of weeks post op but I don't really need them anymore.

Erectile Dysfunction.

My wife has said that I was more worried about erectile dysfunction than death. Not true. Surgery is risky and there was a good chance (50%) that I would have limited erectile function afterwards. I took that risk because it is preferable to be alive and limp than dead and hard as a rock.

On the ED front, the Staxyn samples have done their job when I use them. Without meds, I am at about 75% of what I used to be. I can reach a climax but in order to be firm enough for penetration, I need the medication. My Cowpers Gland was left intact. It secretes small amounts of a clear, sticky liquid during the stages of excitement (the previous function of this was to prepare the way for the other stuff to find its way safely to the ova). With the meds, I am back to full size and firmness. The climaxes feel just as good as before but take longer to achieve. The medicine side effects are a bit unpleasant -- facial flushing, sinus headache, and sensitivity to light -- so I am going to try some of the other brands. I take the Staxyn along with some aspirin to prevent the headache. I have also requested a VED to try and avoid medicine all together if possible.

Please feel free to write to me if you wish to discuss in further detail anything I've mentioned.

Life is good.

Here is a new poem I presented to my doctor with the gift of a wooden da Vinci robot to go with the Prostate model I made:

Prostration
There's a little gland
in every man
Controlling flows of water
It makes us squirm
Expelling sperm
If it's working as it oughta

Now fifty years
Of brats and beers
Have brought me to this moment
My genetic code
Led down this road
To face a fierce opponent

Music in my life
Brought me a wife
Though I never was a dancer.
She's stood by my side.
I almost cried
When I told her I had cancer.

My doctor, kind,
Would help me find
My happy ever after
The fight was fought,
New life was bought
With robots and with laughter

The moral here
If not quite clear
May hit you in the morning
Check your PSA
Without delay
Sometimes that's the only warning

I had my surgery in April of 2014. I went for my one-year post op PSA test in April 2015 and my doctor went on vacation the next day so I put off getting my results back until today (August 27). Part of it was not wanting to know (If I don't know, it doesn't exist) and part of it was just being a slacker. Anyway, I got it back and it is still "undetectable."

I was told that doing the Kegel exercises would help with the leakage. I have been a slacker there as well. I wear a protective liner most days because I don't trust my bladder. I have had no major accidents and I don't have to get up at night to pee. I have had very minor drips when trying to pass gas quietly. There must be a zen art to that which I have yet to master.

I got the VED (a model down from the down from the electric unit the sales person had but a few steps up from the ones in Adult Novelty stores. It worked well for blood flow purposes but I could not use the constriction bands. They were too painful. I tried some ED meds and Cialis worked the best during recovery but now I don't require any medication for ED. Little Paul stands at attention as needed. The dry climaxes have good intensity and no mess to clean up (my wife says that is the best side effect ever).

I have no regrets about my treatment course.

Please write me if you have any questions about anything I have written.

I went for my two year post-op PSA test this week and rather than being undetectable, the PSA has shown up again. This means there were cells left behind after surgery that are starting to multiply. My doctor wants me to see a radiation oncologist and determine a plan.

The tumor in my prostate had begun to extend outside the wall before removal (positive margins) so this is not unexpected. It is, however, disappointing, disheartening, and frightening. The 6 month and one year tests were undetectable.

I still wear a small "liner" daily in case of the dreaded leakage. Sometimes there is a dribble or drop when I wait too long to void. I do not require any pills or pumps for the other function.

I will update my story when I decide what course to take for the recurrence. The double check blood test results should be back soon.

I will begin salvage radiation therapy tomorrow (6/13/16) to try and destroy the remaining cells that were left behind from surgery and have started to reproduce. After testing undetectable at 3 months, 6 months, and one year, the PSA has come back at the 2 year mark (0.18). I had positive margins and a palpable tumor so it is disappointing but not unexpected. I will check back in after the course of treatment (5 days a week for 7 weeks) to report on side effects experienced.

I had external beam radiation treatment starting back in June of 2016 thru August (39 week day treatments). The hardest part was keeping my bladder full for the treatments. I had to drink a lot of water every day. That is probably the best I've even been hydrated in my life. Having the bladder full is how they aim around the area and avoid hitting the bladder. You also have to have the colon empty too. I made it through most days OK. My appointments were always at 8am. There were two times when I had to stop right before we started and go empty a little bit. I drew funny things on my abdomen to try and get a laugh from them every day. I didn't miss any work days.

You get some tattoo dots to line you up to be hit in the same place each time. You lie on the table (they call it a couch but there is no cushion). You lower you clothing from the waist down and they cover you with a large paper towel. They take three X-rays to put coordinates in the computer for where the beams need to go. The beams are set to stop and not go through you like traditional radiation. The machine makes a 180 degree arc across your belly stopping every so often to emit the radiation and in about 13 minutes, you're done.

They recommended taking cranberry pills to stave off any burning sensations when voiding the bladder. I did experience a mild case and the cranberry helped prevent it.

I made it through to day 39 and we had a sparkling grape juice toast. My tests since then have all been "undetectable."

At some point in 2016, I stopped wearing the liners and now I don't have any leakage problems unless I am really full.

My most recent PSA test was on June 23, 2017 and I did not get the results until today (Oct 4, 2017) because I had to call their results line and it always went to voice mail. I did not want a call back so I kept calling every month until I reached a human.

My result remains "undetectable" (YAY!!!).

The radiation had little to no impact on me physically. I did tire a little more easily. No issues with E.D. and no ED meds taken. Climaxes are every bit as good as before (and less messy). I regret that the surgery did not get everything but I am glad I did that first and was able to do radiation. I am enjoying every day of my life.

Right after the treatments ended, I had a physical and discovered I have type 2 diabetes. I have been able to manage it with Metformin and cutting out sweetened drinks. My A1C went from 10.5 to 6 in three months.

I went for my annual follow up with my Urologist on 4/12/18. It has been four years since the radical prostatectomy and two years since external beam radiation.

I asked my doctor "what if it's not gone?" and we talked about options. Hormone therapy. Androgen deprivation therapy. I got the results back last week and my PSA has started to rise again. It should be zero/undetectable after those two courses of treatment but it is now 0.25.

I do not have any urological issues.

I will go again in three months to make sure this is not some crazy anomaly and decide where to go from there. I do not know what treatment to choose and if it will be ongoing or intermittent.

This has been quote the roller coaster ride of ups and downs.

I got the results back of the latest PSA test done July 10, 2018 and it is up to 0.37. The doctor has requested to have an MRI done of the prostate bed. We'll see what happens now.

Having no symptoms but I never did have any before my diagnosis. I am very concerned now. I don't want to go on ADT treatments. I'd rather have an orchiotomy (removal of the testes) if they are just hanging around trying to kill me.

More to follow.

I went on July 31 for a PET scan using the imaging agent Axumin, which is attracted to prostate cancer cells. I was dreading the PET scan process, having never had one and only reading about it and getting rushed instructions by phone. I was told it would take 3 hours, fast for 4 hours prior, as blood sugar needs to be below 200, and no caffeine for 8 hours prior. I didn't sleep easy for the few days leading up to it. I had nightmares the night before. I did not look forward to sitting on that table for two hours after an hour long IV. ALL OF THAT WAS MISINFORMATION--not necessarily wrong but not applicable to my test. Not sure who I should have asked but the test was pretty much like an extended radiation treatment. I did get an IV port in my arm BUT the injection took 30 seconds, they had to begin scanning within four minutes and had to be done within 30 minutes. I could handle that. The only issue I had was that the shorts I wore had a metal zipper so I had to take them down while on the table. The Axumin is does not use glucose as a carrier so the prep of fasting was pointless. They did not measure my blood sugar on site because it did not matter. I had no reaction to the injection at the time or any time later. I was able to leave immediately upon completion of the scan. I was careful not to drink too much water prior (even though their web site suggest to keep hydrated) because I had a bad experience over filling during radiation treatments. I know my limits now. It was not an issue. The technician who prepped me (Edmond of Northside/Decatur Imaging) was VERY knowledgeable about Prostate Cancer and explained everything about this scan and went in to good detail of what to expect. He was very kind and gave me confidence and hope that this test would help in my healing process. Until that day I had never heard of the Aximun test. It seems relatively new and was approved by the FDA in late 2016 (after I had finished the other treatments). I am scheduled to get the test results at an appointment Aug 7 and I will update then.

I met with my Urologist today to discuss the results of the Axumin Scan (a form of PET scan). It is the most sensitive scan available today using the radioactive agent Axumin which has an affinity for prostate cancer cells (it finds them and rats them out on the scan). I described the process in my previous update. The result of the scan was negative for any cancer localization anywhere between my skull and my thighs (the range of the scan). It found other items I already knew about (degenerative discs in my spine) but no gathering of cells to indicate prostate cancer anywhere. That is good for the most part. My doctor was pleased to report that. She also said we will keep watch on the PSA. It should be zero but it has crept up to almost 0.4. There is no explanation for why it is rising with nothing revealed by this test. Radiation patients will have a small PSA "bounce" at about 2 years but that is most likely because they still have a prostate. I do not. She does not recommend the orchiectomy route but rather hormone/ADT injections if it comes to that. We will see if the PSA keeps rising and at what rate and go from there.

~~PC (54 and counting)

I just had my blood test for my 4.5 year follow up (4 years post surgery, 2 years post radiation). The PSA has been slowly climbing. It is now at 0.8 (though it should be zero after all I've been through!).

I have to schedule another Axumin scan to see if they can locate where the cancer cells are hiding. Then we go from there with a treatment course (probably hormone therapy).

All the hope I had when I started this adventure, including the false glimmers of hope after each major treatment, has evaporated.

It has been 5 years and 5 months (time flies) since my surgery.

I had another Axumin scan done last week (a CT scan with the agent Axumin which has an affinity for prostate cells and discloses them if found anywhere consipring to kill me). I got the results back today and there was NO EVIDENCE of DISEASE found. On the surface that is a great relief that it is not showing up but there is the nagging feeling that the PSA is going up slightly for some reason. We'll keep on testing every three months fo a while and see if it levels off.

I had a PSA blood test last week on May 5, 2020. I got the results back a week later.

It had been 1.02 on the previous test. This time it has GONE DOWN to 0.87!!! I am not sure how common that is but I will take it as a small victory in this battle. I was dreading it going up again and having to decide on hormone therapy.

God bless you guys and keep clear of that crazy virus going around. If you get it, stay strong and become part of the immunity herd.

~~Paul

When the Pandemic hit, I lost my job and my insurance so I had not been tested since 2020. I got a new job with OK insurance. I got routine physicals in 2022 and this year (2023). They said my PSA was 5 in 2022. I ignored it. This year it went up to 7.5. Now it is worrisome. My first two axumin scans came back negative in 2018 and 2019. I thought I was in the clear but cancer is tenacious and insidious.

I am VERY concerned about further treatment. Lots of negatives surround ADT. My mind is already foggy enough without help from hormones. I have to weigh it all and figure out if it is worth it. Of course, I'd like to have my life extended. There's no guarantee the ADT will work (it seems to just slow things down). I know there are new options since I first was diagnosed in 2014. If surgery and radiation didn't work, why should I trust any other method? We'll see.

I am 59-1/2 as of this writing. I'm fairly healthy. I have type 2 diabetes that is well managed. I have hypertension that is well managed. My cholesterol is high but statins give me a brain fog.

I have not told ANYONE about this yet. It's lonely. Not sure I want to worry anyone until I decide what to do.

I bit the bullet and schedule a Urology visit this year (2024). My Urologist was super kind and she worked me in earlier than scheduled. As mentioned, I skipped a year of testing during the pandemic (2021). First test at my new PCP office in 2022 came back 5.08, in 2023 it was 7.59 and the most recent test (Jan 3, 2024) at the Urology office was 5.92. I'm not sure what to think (is that a significant difference or a statistical anomoly or a lab anomoly?).

I am scheduled for another Axumin PET scan in a couple of weeks. I will check back in if the results show any localization. Still planning to start taking oral ADT meds soon. The side effects, while still very likely, do not seem to be quite as severe according to web site testimonials. My biggest fear other than a miserable death is losing what little sexual function I have left.

I would like to thank those of you who have reached out to me with your experiences. It is very helpful.

I had a PET scan Feb 5, 2024. The results were very promising for limited spread. It only found a tumor that is 0.5 cm in the prostate bed. No metastasis indicated. Nothing in my major organs, lymph nodes or bones.

I will begin androgen deprivation treatments soon. Taking Orgovyx (Relugolix) oral and possibly a second oral med or an injection if insurance doesn't work out.

I was told of the usual side effects to expect (hot flashes, fatigue, weight gain and E.D., etc). I will report back on the severity of any of that.

Paul's e-mail address is: currentappeal AT gmail.com (replace "AT" with "@")