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just diagnosed with prostate cancer, what to do?

SteelsMaster
Posts: 2
Joined: May 2011

My Doctor just informed me that I have prostate cancer. PSA was 7.5 and after a biopsy my Gleason Score is 7. I was recommended that my options are surgery to remove the prostate or radiation.
I am 58, and not really wanting the surgery but I do not know what other choices are out there. The side effects are a worry.
Wondering if removing the prostate is the best way to get rid of it.

Trew
Posts: 892
Joined: Jan 2010

A few of the guys have had a near normal life after surgery. Some of us, well, not so normal. You are in a very scary place right now.

I hope you take a serious look at proton therapy. to begin your search for answers go the Loma Linda Medical Center and search around and find the prostate Cancer Proton Cancer link/ info and request the book they send out. IF with a gleason of 7 you can qualify for just proton treatment you would have the fewest symptoms after treatment. Some of those guys have even fathered children after proton treatment which is something no guy who has had surgery can say.

I do wish you well.

-Trew

VascodaGama's picture
VascodaGama
Posts: 1589
Joined: Nov 2010

Steels

Your diagnosis is typical in prostate cancer. Gleason score 7 is considered an Intermediate case and your PSA 7.5 is just at the limit of being considered high.
These two pieces of information are not enough to decide on a treatment.
Your pathologist report hold information in regards to cancer volume, primary Gleason pattern, existing extra capsular extension, number of positive cores, PIN, etc. Your “pathological stage” is important because it is considered in all the charts accessing recurrence risk (possibility of recurrence after a major treatment), which you should take into consideration too.

There are many ways to handle prostate cancer cases. However none of them can assure you cure. Unfortunately there is no “silver bullet” yet and all the treatments have side effects, which may cause permanent disabilities. After educating oneself on the type of possible side effects, one should consider which would be acceptable (can live with it or without it), in case things go wrong.
Our first reaction is in finding ways to get rid of the cancer, but we must be sure where the tumour is located because if any microscopic portion is out of the prostate (in case of surgery) or not in the target of radiation rays, recurrence is most certain.

A reliable diagnosis is important when deciding in a treatment. You should be confident on the information given to you and it is common to obtain second opinions from other specialists. Surgeons will recommend you surgery, radiologists will recommend you radiotherapy, oncologists will add hormonal therapy, etc. You have to find a doctor you thrust and you should know about the matters regarding diagnosis and treatments.

I recommend you to get copies of these books;
A “Guide to Surviving Prostate Cancer” by Dr. Patrick Walsh; which may help you understanding options between surgery and radiation.
“Beating Prostate Cancer: Hormonal Therapy & Diet” by Dr. Charles “Snuffy” Myers; which informs on diagnosis and treatments for systemic cases. This oncologist is himself a survivor of a challenging case on his 12 year of survival.
“A Primer on Prostate Cancer, The Empowered Patient’s Guide” by Dr. Stephen Strum and Donna Pogliano; which explains well the whole process of diagnosis.
You can obtain used copies from Amazon site.

Here is a video on Dr. Walsh interview;
http://www.charlierose.com/view/interview/9016

I was diagnosed with PCa eleven years ago (2000) when 50 years old. I had surgery, then recurrence, then radiation, then recurrence again and now I am on hormonal therapy. Surgery could be also your choice and so it is radiation or a combination of hormonal with radiation.
Both treatments, surgery or radiation, (including all their modalities; robotic, open, IMRT, pronton, CK, brachy, seeds, etc) are successful if the cancer is contained and localized. If any possibility exist for metastatic cancer (extra capsular extension), then you should consider adding hormonal treatment which is proper for systemic cases.

Wishing you a “stable” judgement in this bumpy road.

Welcome to the board.
VGama

PS: is your name Steels? So it is my wife’s. Where are you from?

Swingshiftworker
Posts: 650
Joined: Mar 2010

There are a lot of men here who have been successfully treated by surgery BUT I am very vocal in stating that I think that the risks of surgery for early stage PCa are just too high.

All men suffer some ED and urinary dysfunction after surgery (up to a year or more) and some men NEVER fully recover from these "side effects; ie., some men never get an erection or have normal urinary function again. There are also the normal risks of surgery -- infection and malpractice (including perforation of rectum which is most common because it is so closely aligned w/the prostate).

You can read some post-surgery horror stories right here on this forum. Do a search for "pads" (as in the diaper pads you have to wear after surgery), "AMS800" (for the artificial urinary sphincter that some men have to have installed if their bladder control never returns following surgery) and/or "penile implant" (for the device some men have to install in order to have sex again).

There have been tremendous advances in radiation treatment over the past 5 years. CyberKnife (a form of SBRT - stereotactic body radiation therapy) can deliver radiation to the prostate with extreme precision that minimizes the side effects reported w/BT (brachytherapy), IMRT (intensity modulated radiation therapy) and EBRT (external beam radiation therapy).

CK is appropriate for men w/early stage PCA (Gleason 6-7, PSA less than 10). It is offered at various locations around the country. Insurance coverage may or not be available depending on your carrier.

Several men on this forum who were diagnosed w/early stage PCA, including me, have chosen CK over surgery and have so far had good results. No significant side effects have been reported by any of us. One member had a serious infection following the placement of the fiducials in the prostate (the same risks exists w/biopsies and any other procedure that requires a transrectal penetration of the prostate) but this was not a result of the treatment itself. That member recovered from the infection and was successfully treated w/CK later.

A word search for Cyberknife on this forum or on the Net will reveal various threads and links where CK is discussed. Check it out!!!

BTW, your only recourse if surgery fails is radiation and/or hormone and/or chemo.

One of the myths associated w/the recommendation of surgery over radiation is that "once you have radiation, you can't have surgery later." Technically, that is not true. You can have surgery after radiation but it is generally not recommended because of the tissue damage that occurs after radiation BUT also because if the initial treatment fails (either by surgery or radiation), that usually means that the cancer has migrated beyond the prostate capsule and that surgery would be unwarranted.

So, why bother suffering the effects of surgery if you may ultimately have to resort to radiation anyway -- especially if you can avoid all of the risks associated w/surgery and still effectively treat it w/radiation?

For me, there is no reason to consider surgery UNLESS you are not eligible for CK at the outset. Take some time to study the issues and decide for yourself.

Good luck!!!

pookie63
Posts: 1
Joined: Dec 2010

I recently completed forty IMRT radiation treatments, and most of the side effects have essentially subsided. Before learning more about radiation therapy I was headed toward surgery, with great misgivings. I learned that doctors don't necessarily know everything about the alternative treatments that they should. My urologist was also a surgeon who specializes in open radical prostatectomy and seed implantation; his partner specialized in da Vinci robotic surgery for radical prostatectomy. They both knew almost nothing about the radiation alternative. I read a few things about it and it didn't look like a good alternative -- nasty side effects like rectal burning, bladder burning, radiation induced cancer, etc. Then I learned about proton therapy and drove up to University of Pennsylvania medical center to meet with the chairman of the RT department. I wanted to take the proton therapy but my health insurance wouldn't cover it. Also the long distance from my home was a big problem. So I went to the local hospital to learn more about IMRT. I discovered that it has a cure rate comparable to surgery and Proton therapy, with much less side effects than surgery and modestly worse side effects than proton. So I went with IMRT, and I'm very glad I did. No cutting. No risk of infection, scar tissue growing inside the place where they would have sewn what was left of my urethra back onto the neck of my bladder, etc etc.

I discovered a few things along the way. DON'T JUST GO WITH YOUR DOCTOR'S ADVICE. Doctors know surprisingly little about alternatives; they advise you on what they know about. Even recently published books written by doctors have old, incomplete, and inaccurate information. I found that the performance of the IMRT technology has advanced greatly in the last few years, and the doctors who provided information about it were dead wrong in a number of cases. You must acquire and assimilate as much information as you possibly can about the alternatives and reach your own judgment, weighing the risks, the benefits, the cost, etc. For me, the watchful waiting alternative wasn't right, not just because I didn't want to live with fear of progression of the cancer, but because a medical research study I found revealed a substantial number of men who had gone that way had their cancers progress. It was something like twenty percent or more. I judged that this probability was too high. There are two types of prostate cancer -- the type that remains indolent for your whole life and never progresses past a certain stage, and the type that progresses. The doctors don't know how to distinguish between them yet. The biggest thing I learned was that it's all about RISK. You have to manage the risks. There are risks of surgery, risks of radiation, risks of watchful waiting. Understand the risks as well as you can and make your own decision.

I had suffered from chronic prostatitis for thirty five years before getting prostate cancer. Amazingly, the IMRT treatment seems to have cured it! It's about ninety-five percent better. I wondered whether it's really the inflammation that's gone or the radiation just deadened the nerves and I just don't feel it any more. However, another side effect, not anticipated by the oncologist, is enormously intensified orgasms! This argues against the deadened nerves possibility. So there you have it -- two side effects of radiation therapy that are BENEFICIAL.

Feel free to contact me for more discussion.

Bill Curry's picture
Bill Curry
Posts: 10
Joined: May 2011

You’ll notice that all alternatives to open, nerve-sparing radical retropubic prostatectomy always market themselves as “comparable” to that surgery. That means surgery is the standard that other therapies seek to achieve. Then the alternatives market themselves as having “reduced” side effects -- not *no* side effects, just reduced chances.

My PSA was 6.2 and my Gleason was 7 (3+4). I chose nerve-sparing surgery for one blunt reason: I wanted the cancer out of me. Gone. Just a personal preference. But because of a pre-surgery scan indicating possible penetration of the prostate capsule, my right neurovascular bundle was removed. My erections are thus impaired, not as some damnable side effect of surgery but as a deliberate effort to protect my health. A benefit of surgery is that surrounding tissue is removed and sent to pathology; my pathologist found a tiny tumor in each of two nearby lymph nodes. So I went on androgen deprivation therapy (Lupron); nine months afterward, my PSA came back. I’ll soon restart Lupron and then follow with radiation.

My continuing bout with cancer is *not* an indicator that surgery “didn’t work.” It’s an indicator that my cancer had spread even before my diagnosis. I’d be Stage 4 no matter what primary therapy I had chosen. So don’t get caught up in the “cure” game. I went to a prostate cancer symposium and talked to a guy who had had surgery or radiation (can’t remember which) and his PSA had just come back -- after *15* years. I’m not sure we’re ever really “cured.”

My status. Sexual function -- fully treatable with Cialis (and remember, I’m functioning with only one bundle). Urinary function -- most days I wear boxers, briefs with a “light days” pad for days of long or strenuous activity. (Beware emotional words like “diapers” and “implants.” We all have different outcomes for different reasons, including the skill of our doctors and our overall health.)

In looking at your options, don’t get distracted by percentages -- 80% chance of this, 90% chance of that. Those are outcomes derived from large groups of people. For any one individual, like you, the chances are 50%: It works or it doesn’t, you have it or you don’t. If someone tells you that you have, say, an 80% chance of something, ask how they know you will not fall into the 20%.

The treatment decision can be frustrating. You’re not an “expert,” but only you can make the decision -- no prescriptions, just options. But being the decision-maker can be empowering. Take command!

Regardless of your decision, find a doc who’s done *thousands* of your chosen option, even if it's watchful waiting. Make an informed choice, and whatever it is, I wish you a long and happy survivorship!

Onward, my brother!

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Bill, welcome to the forum and I appreciate your perspective although it is different than mine. Each man must make his own decisions based on individual priorities and its impossible for another to properly judge another's decisons.

I believe your logic is faulty when you infer that since other treatments are sometimes compared to surgery that therefore surgery is the standard that other modalities seek to achieve. Today almost all options to treat prostate cancer are compared against each other. If you and your surgeon want to interpret that as surgery is THE standard, that's certainly your perogative but those who choose modern radiation, active surveillance, or some other form of treatment (all of whom have their own expert backing) would take exception to your conclusion.

I appreciate your urge to have the cancer removed from your body. I am sorry that your choice of treatment didn't achieve that goal completely. In my own case, I learned that the very long histology of prostate cancer meant that it had likely been growing in my body for many, many years and I wasn't obsessed with the notion that I had to have it taken out without regard to potential side effects. To me, quality of life trumped an attempt to remove the cancer completely and I chose SBRT radiation. I feel very fortunate to have apparently eliminated the cancer from my body without any side effects, but I had a less threatening diagnosis than you so, again, choices and priorities were different.

I tend to agree with your perspective about percentages but I do believe they are useful in assessing potential outcomes as long as we keep in mind that when the "10 percent chance" happens to you it's 100 percent.

Best wishes for continued progress in your battle with this disease.

K

Bill Curry's picture
Bill Curry
Posts: 10
Joined: May 2011

SteelsMaster,
This whole thread is a case study in why you need to go elsewhere for information on *all* of your options. Visit cancer.org, the prostate cancer foundation and the national cancer institute websites. All have straightforward (non-advocacy) discussions of your options for treatment, including side effects from each. They'll also tell you when specific treatments might be best for your age, health, stage and other personal factors that no one here knows. There's a guy at the prostate cancer foundation who had prostate cancer and he blogs on mynewyorkminute. A recent post has a *long* informative discussion about incontinence. The Patrick Walsh book mentioned above is a super resource -- just understand it's by a surgeon who believes in surgery. But he does cover the range of options. (Last time I checked, the book was getting a bit old.)

Do your research to make an informed decision, one you can live with in terms of outcomes, risks and side effects. Then you might come back and ask guys here what their experience was with that treatment.

Good luck, live long and live strong! B

robert1
Posts: 82
Joined: Apr 2011

Hello SteelsMaster:

I know how you are feeling. My homework has been going on for a couple of months now, and learning has really helped with the anxiety. Knowledge is comforting. Guys make decisions for different reasons. Some want the PCa out immediately and many don't want to even think about surgery if they don't have to. I'm in the middle.

As VGamma suggests, you really need to know exactly what you are dealing with first. Know your staging and do your best to determine if your PCa is localized. Also, put your filter on and get multiple professional opinions from the surgery and radiotherapy sides.

I believe more truth lies with survivors than in the medical community, so talk to as many guys as you can. They are eager to share their experiences. This link has been quite helpful to me:

http://www.yananow.org/exp_data.php?desc=All

Good luck and best wishes,

Robert1

robert1
Posts: 82
Joined: Apr 2011

Hello SteelsMaster:

I know how you are feeling. My homework has been going on for a couple of months now, and learning has really helped with the anxiety. Knowledge is comforting. Guys make decisions for different reasons. Some want the PCa out immediately and many don't want to even think about surgery if they don't have to. I'm in the middle.

As VGamma suggests, you really need to know exactly what you are dealing with first. Know your staging and do your best to determine if your PCa is localized. Also, put your filter on and get multiple professional opinions from the surgery and radiotherapy sides.

I believe more truth lies with survivors than in the medical community, so talk to as many guys as you can. They are eager to share their experiences. This link has been quite helpful to me:

http://www.yananow.org/exp_data.php?desc=All

Good luck and best wishes,

Robert1

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