What did you do? Regrets?

Leah -

As you might suspect, in the past we have had on this forum numerous threads (discussions) on the topics you mention. In particular, a lot of them on the issue of choice regret, actually.

If you go to the top line on the forum index screen (the one that first appears when you come on to the forum), to the right of the Healingwell logo and "Health Conditions" and "Support Forums" etc. (I assume the browser you are using displays them this way) you will see a search box with what looks like a magnifying glass to the right of it.

If you type

prostate cancer regrets

in that box and then click on the magnifying glass (or press enter) you'll see a number of lines appear on screen that link to these earlier discussions that we have had.

You can read through those earlier threads for some good information.

Also, others may post here now to share their own experiences, which are likely more recent ones.

Leah, I chose to be treated with SBRT (Cleveland Clinic) even though I was low volume 3+3. I chose treatment over AS due to the risk of blood infection from additional biopsies. A blood infection for a guy with three joint replacements could be devastating. W/O the joint issue I would have gone with AS. My urinary and sexual function were excellent so surgery would be like swatting a fly with a hammer. After doing a lot or research the excellent results from SBRT with very low risk of side effects made my choice of treatment easy. Cleveland Clinic is top shelf.

I found the treatment very easy. I was able to maintain my normal life style including cycling more than 100 miles/week. The only side effect was some mild burning when urinating that lasted for 7-10 days starting on the third of five treatments. The first couple of treatments I questioned if the even turned on the radiation beam. I had no other side effects except some reduction in ejaculate. My wife remains as hot as ever.

SBRT was clearly the best choice for us and no regrets. We are currently in the stage of monitoring PSA. With surgery you do get an immediate drop. With RA treatments it can take several years for PSA to drop to nadir; but, in the mean time you get to enjoy a normal life with minimum side effects.

Leah,

For some 'real time' comments, click on "my story"--a thread I started shortly after I was diagnosed.
At the time of diagnosis, I lived in a rural area, so some options were challenges to obtain. My diagnosing urologist was perfectly clear to me: He did open surgery exclusively at the small town local hospital. He was more than willing to recommend experts at other, larger sites if I wanted that.

I investigated RALP and the available radiation options at the nearest large center (Barnes-Jewish/Washington University/Siteman Cancer center in St. Louis). Because of my father's history (diagnosed in 1992, chose whole-gland cryotherapy at Cleveland Clinic as a research subject, died in 2004 of spinal mets), I wanted established, main stream treatment. At that time, BJC was just starting with SBRT, and didn't have a track record with PC treatment. Standard EBRT (40 sessions) wasn't workable due to the two hour drive each way.

Ultimately, I chose surgery, and I had an uncomplicated recovery, and have no long term side effects. ED is a non issue thanks to 2.5 mg of cialis daily. I have an occasional drip, but I don't need pads.

Leah, what I've seen in here, more than anything on the subject of regrets, are that the men who have the greatest treatment regrets are the one who heard the word "cancer" and moved to immediate treatment with the first doctor they talked to. Many men eventually HAVE that treatment from their original doctors--and don't have regrets because they looked at the other options and then made an informed decision.

Even men who had bad outcomes tend to have fewer regrets if they did their research before the fact. There are some who have massive regret--and don't stop talking about it--even with good outcomes because they didn't do any research.

With that in mind: regret is not likely to be an issue for you. You're doing the research, talking to the experts, and I have no doubt you'll make a good decision based on whatever criteria are the most important to you. And you--and he--will do fine.

Leah,
I went through about a year of having PSA tests ranging from 6.0-7.1. Urologist wanted to do biopsy. I had no signs or symptoms so I stubbornly decided to pay out of pocket for an MRI first. The MRI result was a PIRADS 5 (indicative of high probability of clinically significant cancer). A month later I had an ARTEMIS biopsy - Gleason 7 (3+4). Three samples of twenty-one were positive with one being very aggressive. I made the decision to have a Robotic Prostatectomy. Had surgery a week before Thanksgiving this past November. Catheter came out November 26. Incontinence was over by December 31, and ED issues have really not been a huge issue with the use of Cialis, Viagra, a Vacuum Pump, and a very helpful and understanding wife. I did my Kegels religiously, walked twice a day, and went back to the gym and started light weight training four weeks post-surgery. Six week follow-up PSA test on January 10 was 0.0. It's truly been like a new beginning in many ways and I have no regrets whatsoever. I will admit that the first few days post-surgery I wondered if I had made the right decision, but once I faced the facts that it was done and I had to make the best of things, the situation got better quickly. I'm very happy that it's behind me and I'm not constantly waiting and wondering what my next PSA test or biopsy was going to reveal - is it growing, is it spreading, what should I do etc. The whole process is quite and ordeal, no doubt and I wouldn't wish it on anyone. The truth is, however, if your on this board, you're most likelygoing to eventually have to do something . My feelings are the sooner you make your decision, the sooner you start recovery.

Leah.
I was a “get it out “ guy. BUT, I took the advice of many and slowed down. I investigated all if my options, then made an educated decision to move forward with surgery. As Ha;Bert said, as long as you make an INFORMED decision, looking at all options with an open mind, you will tend to not look back.

I saw an RO specializing in EBRT, as MSKCC, as well as the head of the Cyberknife program at Winthrop Hospital in Long ISland (now NYU - Winthrop )
In hindsight, perhaps if I’d gone with radiation, I might have avoided BCR , for which I have since been treated. But at the time, SBRT had a 7 year track record and I felt it wasn’t enough. I think even if that was still the case,I would probably choose surgery again. It’s just who I am.

After my surgery, I had full continence and full erectile function with daily Cialis, pretty quickly. Currently, erectile function is not ideal, but I believe that’s due to the ADT I had with Salvage Radiation.

I never considered AS, wasn’t a candidate. But if I was, I still wouldn’t do it. But that’s me, I go with my gut after reading all the science. Doesn’t mean that’s right for your guy

CaptG - You are months ahead of me with the same history. I meet with RO this week. How did you make your decision at PSA of 0.07? How have SE been from all treatments? Sorry to hijack thread but the timing is remarkable for me.

"There are some who have massive regret--and don't stop talking about it--even with good outcomes because they didn't do any research.'

I agree in part. the "cured" have the biggest regrets and most of them had surgery because their urologists are surgeons.

Leah,

In making my treatment decision I was assessed by three surgeons, two radiation oncologists and a medical oncologist that specialized in prostate and breast cancers.

Due to my high risk situation and the significant probability that surgery would fail, all three surgeons said no to surgery. With the radiation oncologists one specialized in permanent seed brachytherapy and the other used High Dose Rate. For a number of reasons Inchose the HDRBT. The medical oncologist also said that for me the best treatment would be HDRBT,IMRT external beam including the pelvic lymph nodes and 18-36 months of ADT.

More than eight years later I am still pulling undetectable PSA, another quarterly draw last week. The only negative treatment side effect I have is reduced ejaculate. I have all the urinary, bowel and sexual function that I had before treatment. I have had three colonoscopies and the GI said there is no sign of radiation damage.

My combination treatment was the best for my situation. It has completely controlled the cancer with the absolute minimum in negative treatment side effects. I and very pleased, have no regrets and am very glad to have found the doctors I experienced and was able to do the proper assessments.

I consulted first with my urologist for many years who advised me not to wait much and treat either by surgery or radiation. My prostate was considerable sized and I assumed surgery was the best way. After asking for some advice here, I decided to consult also with a couple of RO (HSBT and SBRT specialists). Finally, I opted by my first choice, surgery. Fortunately my PCa was prostate contained and I only had incontinence for a couple of months. On the other hand, I had a huge scary upgrade from G3+3 to G5+3 in the path report. Also, not unexpected, my mild ED became almost total ED. Regrets? Not really... I guess I had to do something about this nasty PCa problem and I did it. Other paths would have surely lead me to another different place. I speculate that I would be now ignorant of my high grade, maybe with less PSA anxiety, marginally less ED and probably with significant irritative urinary problems. But there is no way to know if it would be better or worse right now and in the future. So far I do not complain, I would gladly sign to stay as I am now for many years, even with the my current worries.

On reflection, it wasn't the surgery that bothered me. It was the machine. Were I to do it over again, I'd opt for an open procedure. I liked the idea of the intimacy of being held and moved by someone's hands over a piece of machinery being operated through a video screen. It made it seem more real to me. More connection between pt. and practitioner. One less thing. No gas to inflate the abdomen. (which has caused some lingering issues). Those that know me have described me as "earthy". I like natural. I like simplicity. There's an honesty that comes with such things. I also like things I can understand. Radiation? Not so much. It was more abstract. It's difficult for me to "feel" radiation like I can a man or woman's touch. Given those things....

...it's no wonder I chose surgery over radiation. And would again. That said....

…my surgery was difficult. Had I chosen anything else, anywhere else....there could only have been a better outcome. not worse, and not the same.

It's a heck of a thing. Making what's possibly one of life's biggest decisions, with such limited info. My sister jokingly told my family, "If David could operate on himself, he would"

island time said "I liked the idea of the intimacy of being held and moved by someone's hands over a piece of machinery being operated through a video screen."

I certainly understand that. However, I am a tech guy and even had a piece of DaVinci equipment in my classroom (a CNC mill). Also, I went online and watch a video of the entire robotic surgery from the surgeon's-eye view and found it fascinating and, somewhat, comforting.

The decision, for me, to have surgery was based on what research I did beforehand and some of it was anecdotal or philosophical. Two of the guys I know through our running community had PCa. Both are doctors. One a cardio-something-exotic and the other a psychiatrist. Both told me their attitude was, since it was cancer, to get it out of there. Period.

mattamx said...

.....Just one man’s experiences and non-expert opinion.

Thank God, and quite rare in my readings, but who knows for sure. The secondary, long term, effects of radiation are no picnic either. You just gotta wait for them ;-)

While lots of interesting, one-off, personal experiences above, after the fact 'regrets' are about as useless as obsessing about the unknown future, IMHO, but that's just me. That other road, the one we didn't travel, always seems better.

It ain't.