newly diagnosed

[KwajMike]

I'm 59 and was diagnosed two months ago with a PSA of 7.7 and Gleason of 3 plus 4 with two positive cores and low volume (5%) I have been researching options for the last few months deciding between surgery and radiation. Just had another PSA and it jumped to 13.9 after just four months where before it had gone from 5.4 to 7.7 over 8 years. My urologist wasn't too concerned other than to say I wasn't a candidate for AS. I'm kind of freaking out now thinking maybe I've waited too long and feel like I need to do whichever I can get scheduled first between radiation and surgery.

[Darryl Partner]

Hiya. We all wonder when to "act" and if we waited too long. You are not alone in that. Unless you have your prostate removed at birth, you'll never be certain if you waited too long. Take a day or two off, do some sports or exercise and then refocused on making a treatment choice. You have all of us to bounce questions to

[KwajMike in reply to Darryl]

Thanks Darryl, I really appreciate the support and info I have received from others in this situation. At this point I know that I need and want to act soon but feel conflicted between radiation and surgery. My urologist (and most of the recent literature I have read) say that both offer fairly equal "cure" rates or outcomes, with slightly different potential side effects. The radiation seems slightly less invasive to me with some what better side effect outcomes but it also seems to limit other potential treatments if necessary down the road. I go back and forth between the two.

[adlerman in reply to KwajMike]

cryosurgery is the only treatment that is repeatable.

[GARunner in reply to adlerman]

I understand that Focal Laser Ablation can also be repeated.

[Burnett1948]

I made the decision to have Robotic RP after my PSA was 7.6 and Gleason of 3+4 when I was 57 in 2005. When my surgeon saw me after the operation he said my prostate was big in size; I didn't understand the implications of that on the operation and I wasn't told. I had 6 core samples at biopsy; all positive and a MRI before surgery to confirm the cancer was still inside the prostate gland. However the pathology showed that the surgery missed 6mm on one end. I had read that surgery gives you more years and I also read that Prostate cancer early in life has a bigger chance of being more aggressive. Impotency and incontinence are possibilities after surgery. I don't know to what extent radiation effects impotency and incontinence. Given that my operation missed some cancer my thinking is that if I had my time over I would had had radiation. But I am a layperson and one thing I understand now is that every prostate cancer is different. Burnett

[Olman]

Well, I guess I'll jump in and balance the scale. I was diagnosed in 2001 with a PSA of 8 and was given about five minutes to make up my mind about what treatment I wanted, surgery or radiation. I felt radiation was less invasive, so went with that way. Long story short about a year later with my PSA steadily raising it was declared a failed treatment and I've been on Lupron ever since. There are just no guarantees either way. My life long buddy had his prostate removed, yet died of prostate cancer a couple years later with it in his brain. This disease just has too many variables.

[rudolph10021]

To begin with, let me emphasize that I am not a doctor and can only share my experience. However, I think it is important to speak with trusted practitioners of both surgical and radiation approaches. Hear what they have to say GIVEN THEIR ASSESSMENT OF YOUR CONDITION. The side effects do differ as between surgery (i.e., radical prostatectomy) and radiation (brachytherapy or external beam, or a combination of the two), but they actually differ most, it seems to me, in sequence. I don't know anything about cryotherapy.

A key assessment is whether the cancer may have spread. If it has not, or most probably has not, as in my case, I concluded that surgery had the greatest probability of a cure with moderate side effects. The key problem with any radiation treatment is that it is very difficult to aim the radiation so that nothing but the cancer or the prostate is affected, and there can be impacts on the urethra and the rectum.

At your age (I am 68), I would hope that the impotence risk and the incontinence would be relatively low, or, put another way, can be dealt with within a moderate period of time.

I had robotic laparoscopic radical prostatectomy by Dr. Laudone at Memorial Sloane Kettering, which I highly recommend. MSK also has an extensive sexual health program which goes along with the prostatectomy and radiation treatments and is very good. I am in relatively good shape physically, and I think that this made a major difference in my recovery from the surgery.

Also, TRY to get a sense from your urologist about whether it is likely that the cancer is fast growing. Most are not, and you should not pick the treatment which you can schedule first unless your physicians feel that your cancer is very fast-growing.

I hope this has been helpful. Good luck I making the right choice for you and in the results.

[KwajMike in reply to rudolph10021]

Appreciate the response. The feedback I have been given was that I was in the low to moderate risk group and had time ( 6 months according to my original urologist) to make a decision. After talking with experts on both sides I felt there were pros and cons for me with either radiation or RP. With my latest big PSA jump I am way more anxious to move forward with some treatment but to be truthful I'm afraid to pick and go forward with one or the other and am afraid to keep waiting and not do anything. Sleepless nights for sure.

[adlerman in reply to rudolph10021]

"I don't know anything about cryosurgery" and that's the problem. I was told by a urologist that if I had cryosurgery I would have to get a new urologist. Luckily he wasn't my urologist. I don't need dumbasses in my life.

I had a PSA of 3.6 and a Gleason score of 8 when I was 62. I decided to do cryotherapy. That was 14 years ago. My PSA's since then have been 0.1or less. Early use of cryotherapy was bad- they butchered people and apparently everyone dismissed cryo forever. But those doing it learned from their mistakes and corrected their errors. Not many paid attention. I see so many failures from RP and radiation that I wonder how cryotherapy could be worse. It's repeatable the others aren't - I don't know about Focal Laser Ablation but there are many lies around due to the amount of money at stake.

[KwajMike in reply to adlerman]

Thank you, I know nothing about cryosurgery so will do some research now. Did that result in some of the same side effects (incontinence and ED) that surgery and radiation are known for? Glad it worked out for you.

[adlerman in reply to KwajMike]

I had cryo before they developed a nerve sparing technique. A few years after my procedure I read that they were using nerve sparing- that would have been about 2005- I don't know anyone who had that procedure or what there results have been. Because of the location of my tumors I ended up with ED.

I could have had a penile implant in 2002 but opted not to- last year my urologist said he could still do it if I wanted one but I wasn't in a relationship and they're not guaranteed to work-but they stay in either way- so again I said no.

Everyone would like to have their cake and eat it too but I have to be satisfied with getting rid of the cancer. My prostate was never big- at the time of treatment it was 40grams. Since then my urologist for 14 years tells me (every PSA) if he didn't know better he would think my prostate had been removed because it's so small. There was some incontinence for the first month or so but the past 14 years have been relatively free of leakage- it's not common and it's usually the result of me waiting too long- the spincter is now 78 and might have had some ocnl leakage even if I hadn't had prostate cancer.

[rudolph10021 in reply to adlerman]

The "Bible" of the prostate cancer world, "Surviving Prostate Cancer" [or something close to that] by Dr. Walsh at Johns Hopkins, devotes little space to cryotherapy, and I have to confess that, with all the research I did I never looked into cryotherapy. A guy in my apartment building -- a neighbor, not someone I know well -- asked me how I was doing (following my RP surgery) and then volunteered that he had had prostate cancer 13 years ago and was fine. He's about 73 now, so that means he was about 60 them. He also, by the way, has a girl friend. That conversation started me thinking that I should have looked into it more closely -- although as mentioned my MSK RP was terrific in all respects, was successful in sparing the nerves, which had left me in pretty good shape sexually, and the only real negative is that I continue to experience some incontinence , for which I am working with a physical therapist, and which is improving.

[KwajMike in reply to rudolph10021]

Thanks, interesting about Chryo. How long ago was your RP? I know getting rid of the cancer is the top priority but I have to admit the incontinence side effect is weighing heavy on my decision making about treatment.

[rudolph10021 in reply to KwajMike]

I had my surgery on March 16, so I am about four months out. All the literature says that incontinence can be a problem for a number of months, up to about a year, longer in rare cases. I have been in a snit about it because a friend of mine a few years older said that he had dealt with it within three weeks, and the tech who did my pre-op echocardiogram (admittedly probably around age 50 - 55, younger than me) said that it was never a real problem, that it just naturally resolved itself. So I had probably unrealistic expectations. And, while no level of incontinence is ok, I have been experiencing a modest level of leakage from the start, and, while you would never know it from all my bitching about it, it has been improving steadily. I feel sure that I will get it under control, and am especially happy that the nerve-sparing surgery Combined with the MSK sexual health program hS left me already very functional sexually

[KwajMike in reply to rudolph10021]

Well I hope you continue to see improvement. The incontinence side effect has been a concern and seems to be less problematic for radiation based on recent research. But of course other things to consider. I am usually pretty good about making decisions but I am really vacillating on this one.

[rudolph10021 in reply to KwajMike]

I don't know the statistics, but there are consequences to both approaches which affect urination. But I would urge you to focus on the diagnosis and the potential for spread, the approach which offers the best chance of a full and complete recovery.

[adlerman in reply to rudolph10021]

It sounds like your decision worked for you- which is great. I never went to see Dr. Walsh but at the time of my cancer he was one of the big names. This is just hearsay and might have no real basis in truth but I was told that Dr. Walsh cherry picks his patients- if that were true I wouldn't have been picked by him because I had tumors near the base- I don't think anyone would have used nerve sparing on me- and Dr. Walsh may really be a great surgeon. With all the different opinions everyone has you really have to block most of them out and make the decision that you think is best for you. I met a guy at a Prostate Support group in 2002 and his priority was continuing to have a sex life- so he did nothing- he was in his early 80's at that time- not sure how he ended up but he was already past the average life span

so watchful waiting worked for him.

[ng27868168]

In response to your post. First of all, I am not a doctor or medical professional. I am a PC survivor and facilitator for our local PC Support group and an American cancer Society Mentor. In those capacities I have heard the stories from dozens of men who have experienced both the good and bad results from the various treatment OR non-treatment options available for PC patients. As I stated earlier, I am a 23 year PC survivor, diagnosed at age 52, with a PSA of 10.9, followed by a biopsy which showed the presence of PC. I choose radical surgery over radiation because of my relatively young age and because my Urologist and my personal Doc told me, when radiation is the first choice, later surgery if necessary, is really not an option. Things may have changed, but several men in our group have said, "if I had it to do over, surgery first would have been a better option. But times and research may have changed in the 23 years since my diagnosis. But be vigilant, Prostate Cancer isn't like a cold. It ain't going away by itself. Good luck.

[KwajMike in reply to ng27868168]

Thanks you. From my research and discussions with radiologists the machines have gotten much better and way more focused and therefore less side effects then before and with equal results to RP. My urologist said she could recommend either but her first choice was RP to maintain the radiation option afterwards.

[ng27868168 in reply to KwajMike]

KwajMike..., that's exactly what every one of my doctors told me 23 years ago. I elected to have the surgery and still needed 36 treatments of radiation 2 years later. They told me back then if you have radiation first, there really is nothing left to radiate except the prostate bed and many times that is AFTER the cancer has moved into other areas. it is always best to get rid of the cancer which is confined to the prostate BEFORE it get out. Once the cancer gets out of the prostate capsule, it's a whole new and much more difficult battle. Prostate cancer is one of the easiest cancers to cure IF you get it early enough. Good luck.

[Stevedl]

Hello KwajMike, I was diagnosed with prostate cancer at 60, PSA of 5.1, Gleason score of 6 or 7. With a family history of enlarged prostate (brother, fraternal Uncle and two cousins); prostate cancer (Uncle), an Uncle with cancer and cancer with both parents and a sister, a RP was an easy decision. Best of luck.

[KwajMike]

How has that worked out for you? My number one concern obviously is to get rid of the cancer but the incontinence side effect is weighing on my mind and I've read and heard some very sad stories.

[maack1]

Please take the time to read through information in this paper:

Newly Diagnosed – Some Basic Considerations: tinyurl.com/kysjny8

[KwajMike]

Wow, incredible amount of info thank you. Part of my problem is wanting to research everything before choosing a treatment and I'm beginning to realize that is not possible. I feel like I need to make decision between surgery (Dr. Ahlering or Dr. Bui are the two I have spoken with in Orange County, Ca) or radiation (Dr. Puthawala and Dr. Syed). Appreciate all the work you have put into your site.

[AlanMeyer Moderator]

I'd like to add a couple of points to the good advice already give.

First of all, your jump in PSA may possibly be misleading. I'm no expert but it seems to me that a biopsy and/or rough digital rectal exams can introduce irritation or infection and consequent inflammation to the prostate gland leading to a jump in PSA that is not due to cancer. I think that happened to me. If you're lucky, that's what happened to you.

My other thought has to do with treatment modality - surgery, radiation, or cryosurgery. The key choice may not be the treatment so much as the doctor and the hospital that do the treatment. The National Cancer Institute in the U.S. did a study and found that outcomes for treatment of all kinds of cancer were significantly better when done by good practitioners at "centers of excellence" than at average hospitals, not to speak of low performing hospitals.

I suggest that you have a look at:

cancer.gov/research/nci-rol...

You can find an NCI designated cancer center in the U.S. by clicking on "Find an NCI-Designated Cancer Center" on that page.

At those kinds of university and research hospitals you'll find doctors who are true specialists in prostate cancer, not just general urology or general oncology. You'll also find people who study the disease intensively, and read, understand, and participate in the latest research.

If I were going to a top cancer center in the U.S., like Johns Hopkins, M.D. Anderson, Sloan-Kettering, University of California at San Francisco, etc., I'd ask for an appointment with a prostate cancer specialist and ask that person what treatment he'd recommend for my specific disease, and who he thinks would be the best doctor to apply it.

Best of luck.

Alan

[rudolph10021]

I met with both Dr Laudone, a surgeon at MSK who has performed thousands of these operations over his career and now does about 600 a year. I was also fortunate in meeting with Dr. Zelefsky, head of the radiation practice there, with similar experience, who recommended either external beam, with fewer, more intense sessions than usual, or a combination of brachytherapy and a limited amount of less intense external beam.

The point is that it is critical to get whatever treatment you elect done by someone who has LOTS of experience doing them. MSK*, like some of the other institutions mentioned, focuses only on cancer and follows patients for 15+ years afterward.

Hope this is helpful and that you find your way to the right treatment for you.

* NB, at MSK, all of the doctors are on salary, so it'll they are not in competition with each other, trying to "sell" their specialty to make more money.

[KwajMike]

Thanks, I feel like I have good options either way. My in network Surgeon has a great bedside manner but looks very young. He says he has done several hundred RP's and was confident about mine but only does 1 or 2 a month. I've also met with a Dr. Ahlering who seems to the most well know surgeon In my area (Orange County, Ca) and has done about 1,500 (about 10 a month). That's his specialty and he has published extensively. On the radiation side I've spoken with Dr. Puthawala and Dr. Syed who have been doing this about 30 years and have also published a lot. They recommended brachytherapy followed by 4-5 weeks of IMRT/IGRT or possibly cyberknife. So I feel I have good practitioners either way I go. I like that they are both confident but I afraid they are minimizing the side effects.

[Jimraz]

Hi