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Treatment choice based on Age, Family History, PSA, Biopsy, MRI, Treatment facility, and Surgeon's experience

ufknkidding
Posts: 36
Joined: Aug 2019

Are you fning kiddding me...cancer? Ok, now that I got that out of the way.  I was recently diagnosed with prostate cancer and am in my early 50s. I am fit, exercise regularly, eat well, and am in pretty good health. Had an elevated PSA so asked for another test 6 months later that was normal. After a "whew" and a WTF moment, I decided to have annual PSA tests done on my birthday since I have a positive family history. After a couple elevated PSAs over 2-3 years (guess that was my watchful waiting period), I had a biopsy done. Two cores were positive with 1 being 3+3=6 and one being 3+4=7. Had an MRI done which showed cancer in the middle (transition zone) of the prostate near the urethra but nothing in the peripheral zone.  Kinda strange since most prostate cancers (up to 80%) originate in the peripheral zone.  My doctor immediately gave me his treatment recommendation which I considered but decided I would do my homework and make my own decision.  My wife, of course, gave me her treatment recommendation and throughout this journey I've shared all of my learning with her on the pros and cons of all treatment options so now she too is better educated and understands my choice.  Her recommendation is based on I love you and don't want to lose you so please get rid of the cancer.  Guys of course think a bit differently so many of my thoughts were, wow, potential life changing side effects (loss of urine control, impotence, shorter pp, no more sex, no more climax, arse on fire, blood clots, blindness, fistulas, medication/radiation adverse effects, the list goes on and on) no matter what treatment option?!? Then to add to the confusion I read and heard that most men will die from something other than prostate cancer so maybe there is no need to treat it in the first place. But, cancer (lung, prostate, colorectal, testicular) is the #2 cause of death in men so watchful waiting for a guy with a gleason 7 or higher is a bit risky in my opinion. Even if I did active surveillance, my gland would continue to grow with age and/or cancer and I'd have urine frequency and low flow related issues eventually requiring some kind of treatment. And of course the first treatment may fail and the cancer may recur. What a decision I have to make!  And once I make that decision I can't blame my God, my body, my doctor, my wife, my friends, or anybody because in the end I made the decision.  So here is how I progressed to my final decision.  I only considered treatment options available to me and recognize there may be new ones on the horizon which would be a blessing.  Should I even treat since I would probably die from something more exciting like riding my motorcycle or being eaten by a shark or getting hit by lightining on fishing excursions, or being eaten by a bear while hunting.  Plus I would not alter my sex life in anyway by not treating.  But then my AGE became the overriding factor for this option. Because I may live 30 or 40 more years, I can't sit back and wait to see if the cancer metastisizes because with time that chance is higher than somebody who is in their 70s or 80s.  The LOCATION of the cancer also played a factor because cancers in the central zone of the prostate are generally more aggressive.  My cancer is in the transition zone so close enough to the central zone to make me do something about it.  Should I have radiation?  The data shows radiation is as effective as prostatectomy, however, the side effect profile is a bit different.  I figured due to the lower incidence of ED and the fact that my body won't be sliced and diced, I should highly consider this option.  I was a bit alarmed about the potential affect on my arse (i.e. leakage or urgency) and didn't really want to deal with messy pants but the benefit for this option appeared to out weigh the risk for me personally.  I decided I would go with radition IF the MRI showed the cancer was at the fibromuscular band (sometimes called a capsule) or a bone scan showed it had metastasized.  Can't believe I have to consider that word - metastisized.  My thought was, if I am going to have to do radiation anyway because the cancer was beyond the prostate (outside the capsule), why not go with that from the very beginning.  My MRI showed the cancer was not in the periphery so chances are it is totally confined to the gland or also affecting the seminal vesicles.  Both gland and vesicles get removed during surgery so I decided not to do radiation at this point.  I still may have to do radiation if the cancer is found to be in a lymph node or if it recurs later in my life.  Should I do brachytherapy?  Brachytherapy is also an effective treatment but I just couldn't get past the idea of radioactive material being permanently in my body.  They say after five half lives the material has decayed but wow, a live source (radioactive seeds) in my body for the rest of my life made me shudder.  That's just me and it may be a good choice for others.  Should I do surgery?  I decided surgery would be the very last option.  My doctor (a surgeon) immediately recommended this option. You know, surgeons are surgeons so they are pro-surgery. But I was going to make my own decision and rule out all other options. A lot can go wrong in surgery (allergic reaction to anesthetic, complications including blindness, bowel perforation, blood loss, and more including immediate death).  But based on my age with a potential to live 20+ more years, my family history of relatives with prostate cancer, my PSAs, biopsy, and MRIs, surgery really does seem to be my best choice.  I may lose my ability to have an erection, my ability to climax (dry climaxes at the most), my ability to control my urine, and more BUT I should live to see my children get married, meet my grandchildren, continue sharing my life with my wife, family, and friends, and enjoy my hobbies.  I will also be able to continue making a positive impact for my family and society through my relationships and my work. Thanks for reading and I hope this helps others who are recently diagnosed. Treatment decisions are very individualized so please learn as much as you can and consider EVERYTHING in your life before deciding and try to take your time unless your cancer is agressive or metastatic. It is not easy facing my own mortality but every now an again something in life brings back the realization that my time on earth is limited.  I will post again sometime after my surgery which is in 4 days.  Yikes!!

lighterwood67's picture
lighterwood67
Posts: 207
Joined: Feb 2018

Good luck to you on your journey.  Always keep that quality of life issues in front of you.  I had a RARP 3/18.  At this time my PSA is undetectable;  I am fully continent;  I would say I am about 75% recovered from the ED.  This is a tough decision that only you can make.  I will be 69 in September.  Again good luck to you.  I will be looking for your follow-up posts.

VascodaGama's picture
VascodaGama
Posts: 3013
Joined: Nov 2010

You seem well prepared.  Best wishes and success in your surgery.

Let us know more details when you return.

VG

Clevelandguy
Posts: 456
Joined: Jun 2015

Hi,

Looks like you did what everyone should do, review the treatments available and make a decision.  Hope all goes well with your surgery. Not letting a doctor push you down one path is very wise, deciding what is best for you is the best path based on the doctors advice and you gaining knowledge by studying on your own.

Dave 3+4

Josephg
Posts: 158
Joined: Jan 2013

I believe that you did your research well, and you have made a decisdion, based upon your research and your own particular situation.

More important, you are in the right frame of mind, in that you will own the decision that you make, and you won't subsequently waste time and energy second-guessing your decision, after you made it.

I wish you the best of outcomes!

ufknkidding
Posts: 36
Joined: Aug 2019

I'm on my third day after surgery.  Per my medical team, all went well. During pre-op (before being wheeled to the OR) the surgical team said hello, the nurses placed 2 IVs, and then anesthesia arrived so I had them tell me the names of the drugs they were going to be using and fortunately I heard them include Midazolam (versed) among several others. Midazolam is reported to cause some retrograde or anterograde amnesia so a patient can "forget" some of the experience.  The anesthesiologist reappeared about 15 minutes later with a syringe and told me he was administering the midazolam through my IV.  I watched the med go in and then my next memory was waking up in my overnight bed.  I was mentally out of it from the first med through the OR through the PACU and woke up in my bed for the night. My nurses were great and told me everything they were giving me or doing to me. My doctor wanted me to walk a little the first night. My stomach had six small areas where the robot did it's job so it went through skin, muscle, etc.  The majority of my pain came from and is still coming from these six areas. In the hospital they managed my pain with ketorolac and acetaminophen.  I have a pretty high tolerance to pain so am managing with ibuprofen and acetaminophen.  I have lots of new respect for women who have cesearean sections.  OMG! The pain is improving day by day so today (day 3) I am doing a bit better.  However, coughing or sneezing intensifies the pain so I try to gently clear my throat. I don't like the foley cath that I have to keep in for 1 week partly becasue I've never had one and it's just weird having it in my urethra.  Guess I'm used to things coming out intead of something going in but I am glad all that was done after I was under anesthesia. Mentally I am doing OK. I am grateful to be alive. I do have some negative thoughts some times but haven't allowed them to become regrets.  I am glad I had the procedure done at my fairly young age (low 50s) because I see my body is healing pretty quickly.  One final point, remember, everyone's situation is different so do your homework, ask lots of questions, read lots of information, and consider ALL of the facts. One reason I chose prostatectomy was because of my positive family history for prostatic cancer.

VascodaGama's picture
VascodaGama
Posts: 3013
Joined: Nov 2010

You are now a survivor. Welcome to the team. I like the way you describe your experience. I hope that all functions naturally and that you tell us about the success once the catheter is drawn off.

I was 50 at my open surgery and everything heeled well in just one week, till the day they pulled out the drainage tube. In my times there were no robots so that we stayed in the hospital longer. During the first three days I walked along the corridors wheeling a tripod for the urine collecting bag and IV medication. I dnever experienced pain. The foley catheter remained in place ten days and I have been continent since it was drawn off.

Best wishes for continued good outcomes.

VG 

lighterwood67's picture
lighterwood67
Posts: 207
Joined: Feb 2018

Well looks like you were not kidding.  Thanks for posting your story.  Be sure and remind your doctors that you would like to know what the Surgical Pathology Report found, if anything.  Good luck on your journey.

Clevelandguy
Posts: 456
Joined: Jun 2015

Hi,

I feel the one thing that helped my recovery was getting up and doing laps around the inside of my house on the ground level. I think a few laps several times a day helps. The catheter was very irritating to me so I did not want to walk very far outside.  Stay active and hopefully you will be feeling better every day, I know I did. The next big step should be the catheter removal which is a big mental boost.

Sounds like your keeping a good mental attitude which is great, hope for a speedy recovery.

Dave 3+4

ufknkidding
Posts: 36
Joined: Aug 2019

Thanks everyone for the advice. I agree with Clevelandguy that walking helps a lot.  I've had to take very small steps to avoid pain but my steps are getting more normal as time goes by after surgery. The pain is also getting more manageable as the days go by so now on day 4 I can feel acetaminophen and ibuprofen doing their jobs a whole lot better.  The cathetor has been irritating so I got some waterproof tape today and taped more of it to my leg to prevent it from moving when I get up and down.  It's the one big thing I am having to mentally work through several times a day which I do by cleaning the tip then applying bacitracin and/or walking.  I'm over 50% of the way to getting the cath removed and keep asking the Lord to help me make it one more day with the damn thing.  I'm sure it's not a big deal for some guys but for me it's been a mental challenge probably because it's my first experience.

ufknkidding
Posts: 36
Joined: Aug 2019

Day 6 is going pretty well.  I feel less pain at my six incision sites each day and have been able to manage through the pain with alternating ibuprofen and acetaminophen every 4 to 6 hours.  I haven't had to use a stronger pain med so am grateful for that.  I don't like being laid up and not being active but am managing.  I walk slowly with small steps many times a day to get in a mile a day.  I don't care if the neighbors see my yellow pea bag while I'm out walking, OK I do so put the bag in a shopping bag but they can still see the yellow tube hanging down.  :-)  Today I've noticed I may be able to stretch out my pain med so instead of 4 to 6 hours may be able to go 8 hours, however, I don't want to get behind on pain control so will probably keep taking regularly until the cath is removed.  Plus my kidneys and liver lab values are in the normal range so I should be fine continuing my pain meds as scheduled.  One more day of catheter!  OMG I can't express how excited I am thinking I've made it this far with the catheter.  That damn thing has been a little painful/irritating but I think the biggest chore is it's like a ball and chain and it has to go everywhere I go.  It reminds me I just had surgery and well... it's been my biggest challenge.  I've been trying to figure out how to shower without getting the cath retainer wet.  I am using syran wrap but a little water always seems to sneak through.  Today I'm getting in the shower first then wrapping the syran wrap which I've done the other way around.  It has been very boring sitting all day and binge watching TV and movies.  But in two days I will be able to do more once the cath is removed even if I have to wear diapers or a pad for a while.  Because just like the fact that I am making it through having this catheter, I will make it through the time I have to wear diapers or a pad.  Thanks for reading and more to come as I recover.  Hope this helps somebody else on a similar journey.

Jim1961
Posts: 6
Joined: Sep 2019

I guess I should welcome myself to the club noone ever wants to join!  With that being said, I was diagnosed with PC on September 4, 2019.  My PSA went from 3.3 to 4.5 in a little over a year, had a 4K score two years ago, contrast MRI of the prostate with no detection and was getting tested everry 3-6 months.  Decided to have a biopsy.  3 of the 12 cores showed cancer.  scores were 3+3, 3+5, nd 3+5, giving me a Gleason score of 8.  Going for bone scan today and making appontments at MSK and Penn Medicine.  Anyone with a Gleason score of 8 with a similar situation have any advice?  Currently an active 57 year old.  Thanks!

ufknkidding
Posts: 36
Joined: Aug 2019

Well, today has finallly come. Hard to believe its already 8 days after surgery.  Woo Hoo! My incision pain is very well controlled with ibuprofen and acetaminophen but it does hurt if/when I cough.  I will mention this to the doctor today and hopefully can put my fear of a hernia causing the pain to rest.  You know how your mind looks for anything to worry about.  Today is a big day for me because I get the cath removed.  So happy but now mentally preparing for the actual removal procedure.  Since it is my first cath I have no frame of reference for what removal will feel like and I wish they would put me under for it.  LOL.  Ya, I'm a baby when it comes to my friend down there and ya, my friend and I have had a long and wonderful relationship.  We've known each other since the day I was born.  I will also learn how much urine control I have if any.  Already got my pads and briefs (adult diapers) for the ride home and potential leaking.  My current attitude is, Meh, so what if I wear a diaper for a while.

ufknkidding
Posts: 36
Joined: Aug 2019

So my wife decided to share "our" prostate cancer journey with a close friend today.  They were having a great conversation until the friend asked, "So what is a prostate gland?"  After the confusion and silence they tried talking through their limited understanding.  LOL.  I guess I took for granted that my wife would know what, why, and how the gland worked.  So I educated her on prostate 101.  [RIP my dear prostate where ever you may be all be it not in me] Please ladies, do a web search on prostate gland and learn about it.  It's too hard on a guy post surgery to laugh through hearing some of the misunderstandings and OMG two educated women will not figure it out through casual conversation.  Hee Hee.

ufknkidding
Posts: 36
Joined: Aug 2019

So I survived the cath removal. I worked myself up for the worst but it went fine. I had over worked up myself that after everything was done, about 3 minutes later I got flush and almost passed out so laid down for a couple minutes.  My body sure knows how to release natural endorphins but in this case was delayed- thanks a lot body!  The nurse was great and talked me through the procedure as she did it which was a tremendous help.  It was uncomfortable, but not so much in a painful way, except I think she slowed down at the very end so I gently verbally let her know to GET ON WITH IT.  I used a stuffed toy to squeeze during the procedure since I forgot to bring a tennis ball or something more firm and I told my wife her hand may not fair well if I use her hand.  I had also prepared to slap my arm or leg to refocus my brain to a different area of my body which I did not need to do and I realized I hadn't told the nurse that I might do that so didn't want her freaking out.  My surgeon visited me after the cath removal and shared the pathology report with me. From the path report, thank God I elected to remove that cancerous gland. My entire medical team was the best during the procedure and I met a lot of awesome professionals throughout the experience. Now it's time to focus on fully recovering, improving urinary continence, and hopefully getting some erectile function back.

VascodaGama's picture
VascodaGama
Posts: 3013
Joined: Nov 2010

Another step another adventure into the unknowing. ED is now your focus. At my time one of the urologists involved in my surgery was in charge of the matters regarding sexuality and instructed me how a should recover from ED. He recommended me to massage and masturbate frequently and to use viagra (two/three times a week). The issue is to try to get blood into the cavernous of the penis to oxygenate the tissues and avoid permanent ED. He introduced me the pump and injection for using in case of need.
Thought I did not experience incontinence after the foley, many guys here report benefits and faster improvements from daily kegels or use instruments that vibrate the abdomen muscles.  

In three weeks you can have already the PSA test to confirm remission. This will be the first value to show about the success of the surgery. The successful threshold to check varies from doctor to doctor but the majority follow a value of PSA<0.05 ng/ml.
Can you share the contents of the pathologist report? What is the pathological stage?

Best wishes for continuing success.

VGama

ufknkidding
Posts: 36
Joined: Aug 2019

Did you really just post massage and masturbate frequently? My mah and pah would slap me good if they knew I was going to do that.  LOL.  I mentioned it to my wife and adult son last night that I was going to follow another survivor's recommendation and they both walked away telling me too much information (TMI).  I appreciate your comments including trying to get blood and oxygen into the penis corpus cavernosum. I wasn't told about a pump and only had dreams of using one as a kid to get bigger.  LOL.  Never did and am glad to know there is another reason to get one.  My path stage was reported pT2 pN0. As another survivor posted on their wall, It appears the horse (bigger one than we thought) was still in the coral and ready to leave the gate.  Sigh of relief for me and the missus.  Well, gotta go take off my evening diaper and get on with my daily pad.  It's a brand new day and gonna be a good one.

VascodaGama's picture
VascodaGama
Posts: 3013
Joined: Nov 2010

Congratulations. Yes, the timing was perfect. Enjoy your day and celebrate.

VG

ufknkidding
Posts: 36
Joined: Aug 2019

Thank you VascodaGama  I agree the timing probably could not have been better.  For those who want to learn more about staging or understanding pT2 pN0, there is good information provided by the ACS at https://www.cancer.org/cancer/prostate-cancer/detection-diagnosis-staging/staging.html

My doctor recommended 14 days of convalescence after discharge.  Well, you know guys, we want to get on with our lives so I decided to try to go to the office on the 9th day.  I parked my car and began making the walk to the office only to find out I was walking way too fast and the distance was a bit much for a guy who recently had RARP.  So I had to slow down, take my time, get to the office and ask myself WTF!  Then I started having difficulty controlling my pain so figured I'd better get my butt home.  I'm just sharing so others don't make the same dumb mistake.  The body needs time to heal no matter how macho or fit a person is, has been, or thinks he is.  So I'll follow the docs orders and take a few more days of rest.

I am going to close my story here, now that I have transitioned from having cancer to surviving cancer.  My journey is now focused on regaining continence and erectile function.  I am following my doctor's advice and appear to be making a bit of progress in both areas even just a week after my surgery.  Some days are better then others and some of the gains are better on some days and not so much on others.  I know some guys have or are struggling in this area (sucks but try to stay focused on what you have (family, friends, life) and not what you have lost) and I am too but it already seems promising maybe because my nerves were spared and I am in my early 50s although I don't know of any studies indicating age is a factor for post surgery hard-ons and pee control.  If regaining continence becomes overly challenging, I will (and so should you) consider getting a referral to a Pelvic Floor Physiotherapist as recommended in ptainter story at https://csn.cancer.org/node/316214

I am also closing my story here because I want the newly diagnosed to get more attention since it's damn scary and we all need lots and lots of support and input from others during the diagnosis and treatment stages.  I'll continue to post on other's stories to offer encouragement and share some of my experience.  Hang in there newly diagnosed friends,  it does feel like life just turned upside down from one simple blood test, but there is hope.  I almost forgot to mention I realized this morning, no more digital rectal exams.  Woot Woot!!

Best wishes to everyone out there.  All of you are champions in my book.

Georges Calvez
Posts: 276
Joined: Sep 2018

Hi there,

Suspend your story by all means but don't go away.
Further reports on your progress are always interesting, we have men who have been checking in for years, updating us on their progress.
So see you at Christmas? :-)

Best wishes,

Georges

ufknkidding
Posts: 36
Joined: Aug 2019

Thanks Georges. Good idea.  I will post another update around Christmas time.  I have lots of work to do between now and then to retrain my body's lower half and upper half to communicate better.  Crazy how we take that for granted but it is doable and I'm a doer so am hoping for the best.

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