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Posted 5/3/2019 10:36 AM (GMT 0)
This was posted on a zombie thread. Please join me in welcoming a new member, Oldv8fords. Jim

Good stuff here. Jan 2019 PSA 7.9 previous yr 3.5. Biopsy 6 out of 12 positive for cancer. Chose surgery for game plan. Blood pressure a problem heart doctor would not clear me. Had some chest pains too. They ordered a stress test along with other test and scans. Next a fricken angiogram. Cleared that given some isosorbride for the chest pains now back to Urologist. Good to go until his anest hesiologist said I was too high risk. Going on 2 months now. Referred to Iowa city University Urology dept. Anxiety big problem. Worry, gloom and doom daily. Lorazepam only thing takes edge off. Doctors don't want to give me any more,try to give me some long term psych drugs instead. I don't take em. Current Urologist scheduled MRI and more visits with his cardiac people as well as his anesthesiologist. Then a visit with his colleague that does the procedure IF I get cleared for their surgery. I have had major abdominal surgery before. Main issue here is the waiting. Going on 4 months now. Oh ya I'm 66 ,2 previous stents . Thanks for all of the feedback here, it does help. Warren
Posted 5/3/2019 10:44 AM (GMT 0)
Hello Warren and welcome. Hopefully you will get some more responses on your own thread rather than the old one where you initially posted.

If you could give us some more specifics about your case it would help members respond to you. In particular what was your Gleason score from your positive biopsy? But, just based on your initial post, I would suggest that you consult with a radiation oncologist about your case. Given the concerns that your medical people seem to have about surgery, radiation may be a better route. There are many forms of radiation and they are likely to cure you as well as surgery but perhaps with less onerous side effects.

Anyway, tell us more and you will get some more responses. Finally, you might want to send your biopsy slides to Dr. Epstein at Johns Hopkins to make sure you have the right diagnosis.

Jim
Posted 5/3/2019 12:55 PM (GMT 0)
Hi, Warren, and welcome to our little club that nobody volunteered to join.

I think Tudpock has raised some good questions. I, too, had heart issues and previous open-heart surgery, etc., before I was diagnosed. I made the decision that another major surgery was not for me, so I investigated the other non-surgical treatment options.

For this research to be truly meaningful, you need to know your Gleason score and biopsy details. Given that information, we may be able to recommend some other non-surgical treatments that could be appropriate for you. Of course, the docs make that final official determination as to which treatments are applicable for you, but at least we can help you choose which ones to look into. If you are graded as low or intermediate risk, there are probably several possible treatments, and these generally have similar cure rates to surgery. Yes, they do have risks and side effects, but you can compare the risks and side effects of these treatments to those of surgery to help decide what is right for you.
Posted 5/3/2019 1:22 PM (GMT 0)
Oldv8, welcome. I join you and Paxton as members of the “heart club”. As others have said, your stats would be very helpful in giving you recommendations. Also recommendations here are recommendations from laymaen, albeit experienced ones. They should be used to foster good questions and discussions with your doctors.

Btw, I was diagnosed with coronary disease and scented 6 months after my prostate surgery. So I had the heavy plaque load at the time of surgery, it just had not been discovered yet. I often think how lucky I was.
Posted 5/3/2019 1:38 PM (GMT 0)
Hey oldford ol'boy, A bit off the subject at hand, but I had a call yesterday needing an accelerator pump for a '56 Sunliner. If I'da known about you I coulda sent him your way. Glad to have another car guy here. Not real glad, but you know. If I've learned anything on Rt.66 I've learned it's the journey not the destination that's important. Hope yours is a long one.
Posted 5/3/2019 7:57 PM (GMT 0)
Hey thanks for getting another run going on this topic. In laymans terms my psa was 7.9 from 3.5 the previous years. Having an uncle had prostate cancer ,died of colon cancer, biopsy recommended. 6 of 12 cores found with cancer of the non aggressive type. Further testing of these samples showed some were actually a wolf in sheep's clothing as he (urologist) put it. He then indicated to me that the option of observation was off the table as an option. This left radiation or surgery. The Gleason score from what I remember was 3 - 3. 6. Other particulars of the test findings I would have to find my sheet, not handy at moment. Had MRI today ,visit a anesthesiologist and new cardio DR all in one day. All cleared and good to go. Visit new Urologist on 13th to determine treatment/ surgery date. I am really leaning towards surgery. This because once radiation is used for this you can't go back for surgery. I'm 66 not worried about some things afterwards . Surgery in and out to remove. Radiation several treatments. Don't want to drag this out longer than needed. Anxiety has been the main issue to date. Oh. Pontiacwild ,,! My namesake of oldv8fords is from my Torinos . Thinning out my herd. Have a 70 GT left I am keeping. Just sold 2 others
Posted 5/3/2019 8:36 PM (GMT 0)
Oldv8,

I see your urologist threw out the most common half-truth of PC treatment--which is a sales pitch for surgery: That you can have radiation after surgery, but not surgery after radiation. Which is, in fact true, but not the whole story.

The story suggests that there is no follow up available for failed radiation. Which is totally untrue. And, a surgeon told you this. It's kind of like asking a Ford dealer about the drawbacks of a GM vehicle. Would you trust that judgement?

When were you diagnosed? With a G6 you can afford to slow down and really investigate all the options. Please do so.
Posted 5/3/2019 8:43 PM (GMT 0)
Bear in mind that I am a radiation patient, so I "could" be biased, but. . .

With the cure rates of most of the first line monotherapies (surgery, IMRT beam radiation, SBRT beam radiation, brachytherapy, etc.) being so high (most studies put these in the 90%-plus range), why would you limit your treatment decision based upon the choices for a "Plan B" that you have a less than 10% chance of needing?

Just sayin' -- do the research and make sure you are at peace with your choice. I won't quote the horror stories for any form of PCa treatment, but I will share with you that after my open-heart surgery, I was the certified poster boy for post-op complications. It wasn't fun at all.
Posted 5/3/2019 10:01 PM (GMT 0)
Was diagnosed back in Jan this year. Going on 5 months now. Truth be told local original Urologist was leaning towards surgery But first also have observation as an option as well as radiationThe idea of a biopsy every 3months did not appeal to me on that . I did feel better about being sent to Iowa city University anyway. They in turn asked for some of their own tests and scans etc. from their people which was fine.. Now will have final visit with IA city UR and discuss all options and hopefully set a date to get going which ever direction I go . I will make sure and ask all pertinent questions and options . This is a teaching College University hospital. I will feel better after that visit I am sure. Thanks for all of the heads up ideas and thoughts that have been shared, duly noted. Warren
Posted 5/3/2019 11:33 PM (GMT 0)
OldV8ford,
Back in the day I did a lot work my GM cars - especially tweaking up the Quadra Jet carburetors. They’re great carburetors, in spite what some folks believe. I won’t hold your love of Fords against you.🙂

The biggest thing I see hurting you is your anxiety. Slow waaaaay down. It’s cancer, but it’s a cancer you most likely can get a handle on.

So, if I understand your post you have Gleason (3+3) = 6. If you’re going to have PCa that’s the one you want. What I don’t understand is the stuff about retesting to find the cancer is a wolf in sheep’s clothing. Can you elaborate on that?

If you’ve got your mind firmly set on surgery it probably won’t do any good for me to implore you to slow down and check the other options. With a G6 you’re very likely looking at a cure by whatever method you use.

Relax man, you’ve got this.
Posted 5/3/2019 11:49 PM (GMT 0)
OldV8ford.. I am just gonna go by my experience dealing with PCA, With that being said one of the first things you learn is you have to be your own advocate, With your low psa you have some time as the guys have said. Make sure you find a great team of doctors, and a great facility and then go forward with a plan that you and your family feel 100% comfortable with. I'm not pushing any kind of treatment that is up to you and your team to decide I will tell you that surgery is an option after radiation but not very common. Wishing you the best in whatever treatment you decide keep us in the loop.

Larry
Posted 5/4/2019 12:01 AM (GMT 0)
Not much to add other than welcome. I have lots of prostate cancer experience but no heart issues. On the Ford issue, I'm proud to own a 2009 F150 with a 4.6L V8 - not the kind of Ford you're thinking of, but it just pulled my trailer over the Appalachians 6 times in the last two thousand miles. In my youth I was a Chevy guy. What did I know?
Jim
Posted 5/4/2019 1:27 AM (GMT 0)
You are in a good place, should be no reason to hurry or be worried based on what you described. The university setting should be about as good as it get if you live in IA and they should give you all the appropriate options to consider.

Good luck and hope everything turns out well for you.
Posted 5/4/2019 4:25 AM (GMT 0)
The pro-surgery talking point that "you cannot have surgery after radiation" is misleading, as there are several better options than surgery if there is a recurrence after primary radiation. And, this article does not include the current clinical trials with protons as salvage therapy.

https://pcnrv.blogspot.com/2017/09/focal-salvage-ablation-for-radio.html
Posted 5/4/2019 12:00 PM (GMT 0)
Yes also bone scan indicated PC still centralized in prostate. Aside from the first bomb shell of the original diagnosis, There are the decisions to be made. I have read up on many on line . This forum here is very helpful as well. Will need to get a clearer picture of my standings from next /last Urology visit an go from there. From what I have gathered on the surgery after radiation topic is that it would be difficult in the healing process of operating in an area previously treated with radiation due to tissue damage. Can be done but not without difficulty. Like mentioned above , the University Hospital is about as good as it gets around here, I will feel safe with them. On the Ford side over the years and growing up I too have had many brands of cars. They're all good until they came out with computers
lol. Currently have 96 F250 bought new 96000 mi. 09 Sport Trac 60000 miles and most recently 2014 F150. No more that's it!! Another topic on surgery of prostate I have read on but not seen here yet is percentage of those that lose length in penis area of 20% or so. This due to once prostate is cut out , the cut ends of the urethra on either side of prostate are the joined and sutures together creating tension and pulling or tugging between bladder and penis. This would be the length of the prostate. Not all but some have posted of this on other sites. They also were kind of pissed because their Urologist did not share that possibility side effect with them. I asked my original UR about that and he kind of gave a dismissive answer saying he doesn't know if any. Anyone here care to share their knowledge on this if any. Not everyone I am sure feels like giving up lengthy but in the long run I guess it beats the inevitable alternative. Warren
Posted 5/4/2019 12:59 PM (GMT 0)
Warren - You are also probably not that far from Mayo Clinic in Rochester MN if you are not comfortable with U of Iowa at Iowa City after visiting. What you have described so far should be fairly straight forward and you should get the same options offered at most high quality places.

There is no topic that embarrasses anyone here, we all have had more things done in a few months in the private parts area than most men in a lifetime. You will get mighty tired of every doctor shaking hands with your prostate after a while.

The mechanics are simple, the penis length will be shorter after surgery due to the urethra length removed. Whether it stays that way or not is the subject of some discussions and papers. I am heading towards 6 months after surgery and feel that it has gotten longer but I think using the pump for months has had something to do with that by stretching the parts. Following an ED protocol afterwards seems to help from what I can tell so far. Others will chime in with good and bad experiences so like everything else with PCa, your experiences will be unique to you so there is no way way of knowing where you will end up with each item from biopsy to years after end of treatment. Just general probabilities to give you a general idea and you extrapolate from there.

I will say that my surgery was no picnic at age 66 and the doctors said I was in great shape compared to most. However, I did not have a continence issue after catheter removal like many do, go figure.

Use the search bar at the top and type in things like penis length and you will get plenty of reading material from the last 10+ years. Be careful since most people do not report no problems very often so the info is skewed to the bad like most internet info.
Posted 5/4/2019 1:41 PM (GMT 0)
Yes, some very “robust” discussions here on surgery after effects. I think the official position of the medical community is surgery doesn’t change penis size. Many guys here, including me, report substantial loss of length and girth. Shooting pee at orgasm can be a problem (me also) because of the loss of one of the urinary sphincters from surgery.

My Uro took a wide cut so I lost all my erection nerves (which are different from ejaculation nerves), resulting in complete ED. TriMix injections worked great for me for erections, but I developed Peyronies after about a year (severe penis curvature). This may be more common for RP patients than acknowledged. None of these possibilities was discussed with me by my Uro. Also note that many Uros consider having to wear one pad per day as being continent.

There are plenty of guys on the forum who have had great recoveries from surgery, and plenty who have had less than great. Radiation can serious side effects as well.

I guess my main advice is don’t base your decision on the very faulty idea that you can save radiation for after surgery. If that’s a good idea, wouldn’t it be a better idea to just have radiation in the first place?
Posted 5/4/2019 1:44 PM (GMT 0)
I forgot to add that weekends tend to be slow here. Don’t be discouraged if you don’t get a lot of replies over the next couple days.
Posted 5/4/2019 1:58 PM (GMT 0)
Well, my thoughts initially on surgery vs radiation. Although some of UR most say success rate is close to even . With the technology today I guess. My most compelling thought is what if?? Regarding radiation sometimes the aim can be a little off and organs around prostate target area can be damaged like the colon for one. New a guy that happened to. Then there are other positive results too. Will just have to lean the direction feels most comfortable. Warren
Posted 5/4/2019 2:41 PM (GMT 0)
Oldv8fords,

I won't get into the surgery vs. radiation debate (had surgery and then radiation. No telling what's next). Will talk about the anxiety concern. Last time I had missed a day of school or work due to medical was chicken pox in 2nd grade almost 50 years ago. So, I had no idea about this medical crap. Most anxiety is borne of lack of confidence which can be alleviated by becoming more informed. Consider fear of public speaking. Very few people are naturally comfortable speaking to a crowd. What I've found is the better prepared I am to give a presentation the less nervous I am stepping in front of the podium. This forum can help a great deal in ensuring you're going into this process with an understanding of what you can expect. One thing that helped me was talking to people who had surgery by same doctor I was seeing. it was just dumb luck that in my small circle of friends I knew two guys who had their prostate ripped out by my doctor. Guy on my wife's bowling team had it 19 years ago (before the robotic method) and had huge scar and occasional leakage. Another guy in our church men's group had the robotic surgery a couple years ago with a much faster recovery. Both were very positive about the doctor's skill and competence. Their experience and confidence in that doctor helped me quite a bit in being less anxious going into my first major medical experience.

Good luck in whichever path you decide to take. Important to remember it is YOUR decision. Sometimes it can seem like we have to do what a doctor says, but that is not the case. Doctors make recommendations and usually their recommendation lines up with using their specialty. Surgeons tend to recommend surgery and radiation oncologists tend to recommend radiation. Get well informed and then you decide what path is best for your life.

Bill
Posted 5/4/2019 5:52 PM (GMT 0)
Warren, obviously you will ultimately do what you are most comfortable with but...most of us on this site, surgery and radiation patients alike, will tell you to get fully educated before making a decision. With all due respect it appears that you only have received half of the story and evidently are not particularly open to learning about the other half. Nevertheless, I'll give you two pieces of advice that I've learned from 10+ years on this site and endless hours of study on this subject (which still don't make me a doctor, BTW):

1. Get your biopsy slides re-read by Dr. Epstein at JHU. It's cheap, quick and will give you some more definitive understanding of your disease.

2. Get yourself to some RO's that may specialize in SBRT, HDR Brachy and LDR Brachy. Get an understanding of radiation beyond what your most-likely-biased urologist will tell you so you can make an educated decision.

Hope this doesn't come across as too harsh as that is not my intent. Rather I'm just hoping to speak plainly to you before you make a life changing decision w/o all of the facts.

Jim
Posted 5/4/2019 6:30 PM (GMT 0)

Tudpock18 said...

Get yourself to some RO's that may specialize in SBRT, HDR Brachy and LDR Brachy. Get an understanding of radiation beyond what your most-likely-biased urologist will tell you so you can make an educated decision.

While the advise above is good regarding speaking to radiologists to become better informed, remember those RO's are JUST as likely to be as biased as any urologists or surgeons you speak to. A FACT, sometimes lost in the never ending debate about different treatments. BTW, I've had surgery, radiation and hormone treatment. None are a picnic!!

I know you're going to choose the best path for you Warren. Best of luck on the journey.
Posted 5/4/2019 7:56 PM (GMT 0)
Warren, of course Gary is right...you will likely get bias from any of the specialists so it's up to us as patients to sort thru the info and make an educated decision. One of the problems is that almost all of us start with a urologist who is surgically trained and many of us never get to the stage of visiting a radiation guy to get the other perhaps-biased perspective.

Another thought is that you should also do your own research on our disease so you can ask the right questions of your docs. You can start by reviewing the sticky threads at the top of our forum that are designed for newly diagnosed patients. You can also read some books on the subject. Dr. Walsh's, "Guide to Surviving Prostate Cancer" will give you a lot of technical stuff but has a surgical bias. Dr. Scholz, who is a Prostate Oncologist, has written two excellent books that I like -- and they have a non-surgical bias. Those books are, "Invasion of the Prostate Snatchers" and "The Keys to Prostate Cancer". Please consider reading all of the above before you pull the trigger.

Jim
Posted 5/4/2019 8:09 PM (GMT 0)
Oh I hope to be more enlightened from my next visit to the UR in the university. Armed with the right questions regarding my situation I will look for clarity where I am not very well versed. I have looked up most info I can on this. I appreciate your approach and honesty in sharing with me the areas I need to check and double check. I will get a good gut feeling either way after getting the factors needed to make a sound decision. Will try to bring with me some facts and numbers from the visit. Warren
Posted 5/4/2019 8:57 PM (GMT 0)
Kudos to Tudpock18 for grabbing the newbie comment in that zombie post and bringing it here. If it were up to me I'd bump your salary and add a nice bonus.
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