Trying to decide between EB radiation and surgery

[Arjayel]

Trying to decide on surgery or EBR. 61 yrs old, PSA=6, Gleason=7, fully inside prostate, no symptoms whatsoever, in good health. I am worried about urinary problems with surgery and bowel problems with radiation. Awful choice between which problem I want to have for the rest of my life. I would like radiation but am worried about the possible bowel issues. Any suggestions on how to figure this out? Yes I have read dozens of papers and checked all sorts of statistics but none of it seems to help me decide.

[Arjayel]

Thanks Bob. I have to say reading about EBR side effects here scared me, I really feel for those guys and hope it gets better for them. I know incontinence is the big issue for RP and maybe I can handle that. My brother has been very successful with EBR but can I be that lucky as well, I don't know. Still getting used to the idea I have this.

[Darryl Partner]

Hi Bob. May I ask about your Erectile function and quality of orgasm?

[Roger2Dodger]

Hi Arjayel,

I just finished 43 fractions of EBRT. I will tell you their will be side effects. And if you choose surgery, deal with them also. So, I can only speak for EBRT. The bowel problem I had w

[Arjayel in reply to Roger2Dodger]

Thanks R2D, appreciate your words. My doctor says its a coin flip for me as either way will work for me. He also said you choose one and focus on overcoming any side effects. I guess like everyone else I am trying to find a method to decide. It seems the same as showing up at a garage with your car and the mechanic telling you to go home and study how it can be fixed then come back and tell him which way you want it done.

[Roger2Dodger]

My reply continued, don't know why, I didn't hit reply. The bowel problem was not a big issue for me. You can manage them easily with over the counter meds. My biggest issue with EBRT is fatigue. I f you lay around and do nothing you are okay. Any physical activity will bring the fatigue on. Then their is ED. you cannot escape that with EBRT or surgery.

G'Luck what ever you choose.

Roger

[Hidden in reply to Roger2Dodger]

Hi Roger,

That arrow down button, next to Reply and Likes, is where you can go back and edit or update without doing a new post.

Joe

[jal1954]

I was diagnosed almost 10 years ago, Gleason 4+3, and had the option for robotic surgery. I also considered relocating to Houston for a couple of months for proton beam therapy at MD Anderson. The radiation oncologist in Baton Rouge told me there was no clinical difference between protons and standard EBR. I think that they now know that protons have better outcomes. I was adverse to surgery and conferred with my urologist who confirmed that EBR could cure me. And so, I went with IMRT from the hospital in Baton Rouge.

All good for a few years, then a gradual creep in the PSA by the end of 2012. Early 2013, I was at MDA for a consult, and learned that the cancer was back in kick ass mode, Gleason 9, with some extension. I underwent surgery there in April 2013 and it settled down for a bit, except for enduring incontinence - a result of requiring salvage prostatectomy. After you've had radiation, it's tough for the surgeon to get it out. I had an AUS installed in 2014, which was a Godsend.

However, now I have metastatic cancer, due to residual margins, I believe. At this point, now I have all the advanced treatments to take, as discussed in this forum. Many's the time that I wished I had had surgery, and maybe this wouldn't have happened. But that's not a sure thing, and there's no good in regretting a decision that was made with the best information available at the time.

My EBRT was effortless, with few side effects other than fatigue. The salvage surgery had plenty of side effects - the norm. Incontinence, check. Erectile function - really? The choice of treatment is a crap shoot. You pays your money; you takes your chances.

Good luck.

[Arjayel in reply to jal1954]

Thanks Jal. I wish you the best. Its like a line up, you always think you picked the wrong line but in the end its the same. I guess we all try to pick the 'right' one but noone can tell us what that is. That to me is the hardest part. I have been told either will work for me as I am T1c so i am trying to figure out the least damage and best longivity. Uro said no to active surveillance, said fix it now and move on.

[jal1954 in reply to Arjayel]

Arj, one option you may want to consider is the Cyberknife. This wasn't available to me back in 2007 that I was aware of. Similar to EBRT, but it compresses it into a very short schedule. To my little knowledge, it seems like a good fit for your staging. See cyberknife.com/.

Best, John

[Hidden]

Hi Arj,

I'm seven + years since St, 4, Gl. 9, PSA 68 diagnosis. I was 50 1/2 at the time.

I had 45 rounds of IMRT, Lupron, now full time, Xgeva, for bones, and Zytiga, which appears to be failing now. I was in the ER twice for bowel problems, and had three plus years of agony from a diagnosed bladder blockage, that "I" was not told about, that put me it too.

I also have all the side effects from not having any Testosterone; boobs, weight, fatigue, ED, and some depression. I would never, ever, ever, go through it again. I feel like a giant white, smoldering turd. You probably don't want my kind of life.

On the other hand, BobJ is doing a bang up job of beating the crap out of his disease.

I wouldn't think twice about having it removed, and the hell with the nerves. If you go my route, you may be able to do something to get it up, but there's no feeling. There's no connection to the brain that says this is supposed to feel exciting. And, if you do "pop", there's nothing there, aaahh. Look it up, "dry orgasm".

Peace Brother, Joe

[Jimraz]

Look into Proton Radiation Therapy. I had it done seven years ago and had absolutely no side effects! No diapers, no ED, no burnt bladder or rectum and no pain. The investment of time and travel was well worth a wonderful life cancer free and Medicare paid for it all.

JR

[Arjayel]

Does it help to do these pre-op?

[ng27868168]

My PC decision making occurred back in 1993 at the age of 52. My PSA was 10.4 and biopsy showed the presence of PC. Since that time, both the surgery and radiation procedures have changed for the better. Both surgery and radiation are acceptable options. I decided to go with surgery after discussions with 2 other docs. Their input went like this..., "both procedures work, but once radiation is used, surgery becomes much less of an option IF NECESSARY in the future because the prostate gland and base is basically gone due to the radiation treatment." It is always realistic to assume there will be some issues with both ED and incontinence with either procedure OR no procedure as age sooner or later becomes a part of life. The MOST important decision you have to make, in my opinion, is to do something OTHER than "watchful waiting" which really means "doing nothing until it's too late". As a facilitator for our local PC Support Group, I have seen more than one person who decided to "watchful wait" and regret it later on. PC is not like a cold, it will not go away on its own and only gets worse. Good luck.

[AlanMeyer Moderator]

I'll add a few comments to what has already been said:

First, and most important - Get a good doctor! I believe that the best surgeons and radiation oncologists have higher cure rates and lower rates of adverse side effects than the average surgeon or rad onc, I'd rather have a top surgeon than an average rad onc, or a top rad onc than an average surgeon. The first treatment is the one that has the best chance of curing the cancer. It's important that the attempt be made by the best doc available.

Here are some thoughts on how to to evaluate a doctor.

EXPERIENCE. How many prostate procedures does he do. A doc who does, say, 50 prostatectomies per year is averaging about one per week. He's not getting rusty and he's seeing a lot of variations in the patients. When he opens up your prostate, he's less likely to be surprised by what he sees than the guy who does half a dozen per year. Radiation is different in that the rad onc is more concerned with planning than with execution but, hopefully, he's learned from looking at x-rays, CT scans and MRIs what different patients look like and has some experience with what has been successful and what has failed.

CURRENT KNOWLEDGE. This is probably easier to judge with a medical oncologist than with a surgeon or rad onc, but it's valuable to have a doctor that keeps up with medical journals. Sometimes you can ask about a current issue, e.g., for a rad onc: What do you think of CyberKnife? Does proton beam have better outcome than x-rays? What do you think of brachytherapy? Does neoadjuvant ADT improve radiation outcomes? i'd hope for intelligent answers or at least honest ones. I'd rather hear the doc say "I don't know" than have him try to baffle me with BS or just change the subject.

PATIENCE. I want a doctor to listen to my questions and answer them. I have some hope that a doctor who is patient in the office will also be patient in the operating room. I want him to take his time and do a good job.

INTEGRITY. i hate it when a doctor lies. I've heard of doctors who claim that 98% of their patients are cured, or hardly any have side effects. I don't believe it. It makes me wonder what lies he is telling me about the treatment he is offering and what corners he's cutting in the treatment.

COMMITMENT. I want a doctor who has a calling to practice medicine. I'm not impressed if I see him getting into a Mercedes in the parking lot, or see photos of himself with celebrities on his office wall. I'm not impressed if he rushes me through his office in order to process ten patients every hour.

Doctors have technical knowledge that most of us patients don't have and it can be hard for us to evaluate. However we all have experience evaluating people and we should use that. If your "gut" tells you that this guy is focused on money, not patients, or that he's got a big ego and doesn't think he ever makes mistakes, listen! Find somebody else.

Alan

[Umpire20 in reply to AlanMeyer]

I would choose a surgeon who had done a minimum of 500 laparoscopic prostatectomies albeit the skill of the surgeon (and hospital) are more important than whether it is Robotic surgery or traditional.

[Umpire20]

I have Gleason 6 PcA and have been on Active Surveillance since Dec06 diagnosis. Second Opinion on the Biopsy slides from a World-class expert Pathologist Dr. Jonathan Epstein at Johns Hopkins was critical. He determined that my PcA was Not Gleason 7 (3+4). I have avoided Incontinence or Erectile dysfunction.

[MikeMit]

Have you looked into CyberKnife? I had 5 treatments over 5 years ago and have been cancer-free ever since. Absolutely No Side Effects. If you haven't already, check it out.

[AlanMeyer Moderator in reply to MikeMit]

I (and others) have noticed that one man's view of side effects can be quite different from another's. However, the key thing here is that you are completely satisfied by the outcome.

From what I know of CyberKnife, I think it's a good treatment. However, if it cured your cancer and left you free of side effects, I would be inclined to give as much credit to the radiation oncologist as to the CyberKnife machine. A poor rad onc can probably do as much damage with a CyberKnife machine as with any other kind of x-ray generator. A good one might achieve the same outcome you got with IMRT or brachytherapy.

Alan

[Hidden]

Is your 7 a 3+4 or a 4+3? Compassionate Oncology/Leibowitz's excellent website says in various ways and places that a 3+4 behaves like a 3+3 ... i.e., it seldom needs treatment, just active surveillance. I'd look into that before risking even the highly likely treatment side effects, let alone the moderate- or low- likelihood SEs.

[Arjayel in reply to Hidden]

I am a 3+4. Active surveillance seems to be just delaying the inevitable. My doctor recommended against it saying a 3+4 treated is the best route to put this behind me.

[Hidden in reply to Arjayel]

Re: "I am a 3+4. Active surveillance seems to be just delaying the inevitable. My doctor recommended against it saying a 3+4 treated is the best route to put this behind me".

Most oncologists define PC "cure" as holding it at bay until something else kills us first, whether it takes 5 or 30 years. Until my doubling time plunged from 30 months and increasing to 4 months and dropping a decade past my surgery, my advanced metastatic G4+4=8 (by definition aggressive) PC was no threat until I reached the age of 150, literally. Nothing but AS made ANY sense in that case. Many oncologists say the same about 3+3 and some say that applies to 3+4. I'd research the hell out of the latter before risking the long list of major treatment SEs vs the risks of G3+4. How do even acute, let alone chronic or even increasing, bowel or urinary incontinence, sexual impairment, pain, chronic fatigue, hamburger ass (Walsh's term IIRC), etc. "put anything behind us" ... at least in a good way? On top of that, what favor does automatically causing terminal mCRPC with permanent ADT do for anyone whose PC is just a number on paper or a couple of cores and which will most likely be displaced by diabetes, CVD, or many of the other diseases and SEs ADT exacerbates, promotes, or even causes? Think of the 50-something horny guy whose 30-something new wife wanted sex all the time -- to his eager compliance -- but whose doctors told him he had to enter permanent (i.e., fatal, CR-producing) ADT simply because he has prostate cancer (like the vast majority of men his age).

[Hidden]

Even before recent studies showed that surgery has a HUGE survival advantage over radiation*, choosing between the two was easy for me, based on three issues:

1. Which would I rather carry in my pants: urine or feces?

2. Surgery reveals a GREAT deal of useful and predictive information radiation destroys. It's like the difference between capturing vs droning a talkative terrorist and his laptop.

3. Once we try radiation, surgery is not a practical option.

* Findings from 15 of of 19 studies that included a total of nearly 119,000 men with localized prostate cancer showed that those who received radiation therapy were twice as likely to die from prostate cancer as those who had surgery. Findings from 10 of the studies also showed that men who had radiation therapy were 50 percent more likely to die sooner of any cause, compared to those who had surgery. The results of the analysis were published Dec. 14, 2015 in the journal European Urology.

webmd.com/prostate-cancer/n...

[Arjayel]

Thanks Back, I saw this as well, one of the reasons I am now leaning towards surgery. Been asking guys I know who have had PC and Most of them has opted for surgery for exactly those reasons. . I'd like to know who the h*ll designed this hardware? Not much thought given to repair and maintenance. Must have been outsourced...

[MelbourneDavid in reply to Arjayel]

I think those results are for non-randomised treatments. Older men and men with more advanced disease are more likely to get radiation therapy, so more likely to die.

[Uxp_d]

Hi I live in England where health care is free,I was diagnosed with PC nine years ago,at age 68,I went through all those concerns,I decided on Radiotherapy which I thought if it fails I can have a removal,Wrong,my PSA started to rise and I was advised to see,probably the best robotic surgeon here,he would not perform it,due to what he described as sticking due to Radiothrapy,I then tried HIFU which also failed,I consider myself lucky,at present I am continent in both departments,I can get a partial ercetion and still enjoy sex at 76.I sometimes wish that I had chosen radical surgery in the first instance,at least you get rid of it ,most of the times !,as Radiotherapy is usually given after surgery.It is the most difficult decision to make ?,in my case its come back anywhay ! PSA now17,I am interested in trying the injected treatment Sidenfil and MUSE do not work for me but a pump with softer rings does,sorry I cant help further than give my own experience or possible mistake. Terence (London)

[Uxp_d]

Hi s most of the posts seem to come from the US and AUS I mentioned HIFU maybe it1s not used there,it!s High Intensity Focused Ultrasound,they are also using Cryotherapy here a cold gas directed at the cancer freezing it.

Terence

[Hidden]

Have you considered HIFU? It was out of pocket for me here in the US but I've had no problem with impotence or incontinence. Not a doctor but I consider radiation a blunt instrument and HIFU a precision instrument.

[Uxp_d]

Sorry Arjayel nothing will, as we are all different, I had Radiotherapy and it failed, so no reasonable options left ,but I am 78 and still here ,so you choose as all treatment has I`ts problems. Terence UK good luck with your choice !

[MINE2]

"Awful choice between which problem I want to have for the rest of my life. I would like radiation but am worried about the possible bowel issues. "

I can identify ... same issue facing me. In spite of all the $$$$ they've made and spent, you'd think modern Medicine would have paused on the profits to make cancer health options more appealing to the patient than consulting a Witch Doctor. As a matter of fact, I don't think Witch Doctors HAVE any side effects with what THEY do.