59 Year old recently diagnosed with Prostate Cancer seeking advice

[jazz2cool]

Hi, I am 59 years old, married 40 years, two children and three grands. I was diagnosed two days ago with localized Prostate Cancer. My Gleason Score is 6, Prognostic Grade Group 1 on the right side of the prostate. I am trying to educate myself on treatment options. My number one personal value is not to have to live with incontinence (quality of life would be zero for me if I had to wear a diaper the rest of my life). Second value is to avoid ED and loss of sexuality. Some of these symptoms may be unavoidable at least temporarily. Some of you have been through this process and have recommendations. I would appreciate any advice based on your experiences. I live in Central Florida.

[Hidden]

Sorry to hear of your diagnosis. First, you say your cancer is localised. Presumably you have had tests to show this. Here in the UK this is done by a bone scan and MRI. If definitely localised then you have a great chance of being cured.

There are different treatments you may consider. Here in UK under the NHS we are offered a limited number of choices. I believe in the U.S. you may have more choice depending on your medical insurance or ability to pay.

Gleason 6 presumably is 3 + 3, this is intermediate risk. If it were 2 + 4 or worse still 4 + 2, high risk, but that combination is extremely unlikely.

Intermediate risk means you should seek some treatment. Your options might include temporary hormone therapy, radiation, surgical prostatectomy and or if available cryosurgery or ultrasound. Usually for localised cancer it's radiation or prostatectomy. Some specialists recommended hormone therapy temporarily, this I guess is to increase the chances of a cure.

Apparently both radiation and prostatectomy are equally effective in treating the cancer.

Pros and cons

Radiation pros. It Is effective and avoids the risks associated with surgery, the anaesthetic, haemorrhage etc. With radiation the chance of erectile dysfunction is less, but not zero. Incontinence is unlikely.

Cons - radiation can cause collateral damage, e.g. to your bowel. Chances of this lower with proton beam. You may not have access to proton beam. There is only ONE machine in the whole UK. Radiation kills cancer cells but damages the whole gland. If the treatment fails, you can repeat the radiation a limited number of times. You cannot have it surgically removed. Treatment takes weeks and you won't feel good. After treatment, if successful, you will still have prostate tissue and cancer could recur. You will have positive PSA which will need monitoring.

Surgery pros. Surgery lasts a few hours, you can go home after 1 or 2 days. Endoscopic technology means no large surgical wounds, very little pain. The whole gland will be removed. If any cancer cells are left behind, you can have salvage radiation. PSA after surgery should be zero and should stay zero. It will still be monitored regularly.

Cons. In surgery they inflate your abdomen with gas. If it doesn't all get out again it can be very uncomfortable. About 60% chance of infection. May need antibiotics. You have a tube in your penis for a couple of weeks and a urine bag. It's inconvenient and a little uncomfortable especially if you put it somewhere then walk away without taking it with you.

After the tube comes out, at first you may have difficulty peeing. When you start you may have little control. This will be due to inflammation and or damage to the 2 sphincter s. You will need diapers. Hopefully this will only be for a few weeks. You will need to do Kegel exercises. If incontinence persists, further treatment is available.

Prostatectomy can cause ED. Traditionally the chances of this was 100%. You must make sure the surgeon carries out the "nerve sparing" procedure. This reduces the chances of ED. This is even more effective if the surgery is "robotic". Robotic surgery also reduces the risk of chronic incontinence.

You WILL have ED after surgery. It could be up to two years before you recover function. This will also depend on your erectile function BEFORE surgery.

Even if you recover function, it will never be as good as it was, but can be adequate for its purpose. The other downside is because your urethra will be shorter, (part of it was in the gland and the two ends will have to be stretched to fill the gap), so when you have an erection, it pulls on your bladder sphincter and you may leak or ejaculate urine. If so, you will find ways if managing this and must remember urine is NOT dirty, it is sterile and even has antiseptic properties.

Incidentally, even if you have ED, you can still have orgasms. The nerves involved are different.

After surgery you should start erectile restoration as soon as the tube is out. The longer you leave it the less likely you will recover. Start on PHE5 inhibitors, sildenafil, tadalafil etc. Also get a penis pump and use it daily. Get a good medical pump, not a cheap one. This will help prevent the venous occlusion and hypertrophy of erectile tissue which occurs when you have ED. Carry on with the PHE5s even when spontaneous erections return. You may need to see a psychosocial counsellor, because it will really knock your confidence and it could seriously affect your relationship with your wife.

If you still have ED then there are other options.

DON'T give up.

Hope this helps. I had Gleason 7 (4 + 3), high intermediate risk Bone scan and MRI negative. I had surgery in March 2012. I had bad infection, so delay in taking tube out. After tube out, needed nappies, (diapers) for about 6 weeks.. Had "stirrings" after about 3 weeks. Recovered full erectile function and confidence after about 2 years. Could function within about 3 months but unreliable. Leak. A little when aroused especially when standing. Sometimes ejaculate urine. Actually a little wetness can be fun!

I remarried 4 years after surgery. It's good. I am now 6 1/2 years, PSA recurred but staying under 0.1. I have never had hormone therapy. I had increasing back pain last year so had MRI, it showed I have spinal arthritis, no metastases.

Good luck

[docdiamond]

Hi Jazz. Sorry about your diagnosis. Please provide more info on your Gleason 6 diagnosis. Is it 2+3, 3+3 or 4+2? Some Gleason 6 will likely never cause problems and can be safely monitored rather than treated and removed, (commonly called active surveillance). The previous post was very good, so I will focus on a couple of other alternatives, assuming that you need any treatment at all. If your cancer is very small, there are two treatments that you should consider. One is call HIFU (high intensity focused ultrasound) and the other is called FLA (focused laser ablation). Both of these options are much less invasive, and are less likely to cause incontenance and ED. I suggest that you do some research on your own, and then talk to your doctor about these as possible treatment of your disease.

More than anything, please be sure to take your time and consider your options. Don't let your urologist rush you into anything. They make lots of money on surgery, and likely will need to refer you to other providers for the latest treatment options. So he may really push you to use more conventional treatments.

If you are having trouble getting responses on this website, you may want to post on inspire.com on the me too prostate cancer group. They are also very knowledgeable and are also very responsive.

[Hidden in reply to docdiamond]

Good, I didn't know about the laser ablation, but Ultrasound and laser sound good. Can't get it in UK. Certainly follow docdiamond advice and don't rush into anything. Depends on how high your PSA is, but doesn't sound too urgent.

[Hidden]

So sorry to hear about your diagnosis. I think the only way you are ever really going to have peace of mind is to have surgery-my dad didn't and he spent the rest of his life worrying it would come back/spread, unfortunately he was right. Most men recover really well from surgery and only have incontinence temporarily-even if it was for life it'd be a walk in the park compared to what advanced prostate cancer can do to you and if you have the aggressive type this could be in only a few years. My dad only had a gleeson score 6 too but it turned out to be very very aggressive prostate cancer and he died within 8 years of being diagnosed so you can never know how the cancer will progress if at all. He gladly would've swapped incontinence and impotence for what he suffered in that last year. His father also died of prostate cancer so there was a genetic element-if you do not have close family who have had it then that might make a difference to your decision.

Obviously you have a lot of things to think about right now, you have a family and they will be affected by your decision too of course-they don't care if you have to wear diapers they just want you to be healthy. Sorry if I sound harsh, just some things I wish I had said to my dad when he was first diagnosed.

[Abiathar]

Jazz2cool,

A Gleason 6 is about the best prostate cancer news you can receive. How many positive cores did you have? If you have only a few, I would suggest the only therapy to continue with is active surveillance. There are major centers that specialize in this. This involves potentially improving your diet, having your PSA monitored and getting a confirmation biopsy in a year. Gleason 6 cancers rarely metastasize. Studies have shown that mortality is not improved with immediate treatment vs. years later. A high percentage of these patients do not require any further treatment. Gleason 6 cancers are considered low-risk, Gleason 7 (3+4) is a favorable intermediate risk, a Gleason (4+3) is an unfavorable intermediate risk and anything higher than this would be a high risk. Before you do anything, give your stats to the Healing Well website and see what your responses are. I can guarantee that no one will recommend surgery out of the gate without having more information.

Thanks

Abiathar

[jazz2cool in reply to Abiathar]

Three positive cores. One 50% two 5%. But my Prolaris score shows my cancer is more aggressive (4.2). What I struggle with in deciding my treatment options is that a nerve sparing procedure (to be successful) is easier when you are completely localized and no extra encapsulation exists in the area of the nerve bundles. I am still learning and reading. I only recently realized they have to peel the nerve bundle off of the prostate or that they have to physically reattach the urethra to the bladder. I am behind and catching up quick. I spoke to one surgeon and based on my questions he recommended Dr Patel at Celebration Health. He is the most experienced in the world at RALP (Literally does more than anyone worldwide ). Part of me is asking why not be cancer free if I can be vs. deciding later how I treat rising PSA or metastasis? Prolaris suggests that while I can do active surveillance, my treatment decision is going to have to come sooner than most G6 patients.

Prior to the Prolaris score, I was feeling the active surveillance option was a very logical choice. So I don’t know where I will land.

[Abiathar in reply to Abiathar]

What was your PSA? Have you received a second opinion on reading your slides? Check out this address. This guy is the best in the world in reading prostate cancer slides-- pathology.jhu.edu/departmen....

I would also talk to programs that specialize in active surveillance. There is scads of data showing how safe it is to wait. You need to make sure your slides have been accurately read. If Dr. Epstein calls you a Gleason 6, I would check out active surveillance first.

If you do require treatment, you need to talk to experts in surgery (Patel is excellent) and those that use radiation. Radiation is as effective as surgery but carries a lower risk of impotence and incontinence. I chose IMRT and Brachytherapy. I was your age when I decided on radiation. You would not want both since you have a low-risk case. I would choose SBRT, high-dose brachytherapy or low-dose brachytherapy. Like with surgery, I would only use the best. Radiation in the right hands as evolved into a great treatment. It does make a difference, though with the expertise of the operator.

If you are sexually active, all forms of treatment will have an effect on this. Don't go there if you don't have to....at least for now.

[jazz2cool in reply to Abiathar]

PSA is 4.7 and 4.3 with the same lab, different days. I have an oncology nurse with consumer medical arranging for a slide read from an expert. I don’t have that yet. As I mentioned, it is the Prolaris score that takes some of the guesswork out of how long I might be able to wait. I have the paperwork to fill out to get an appointment with Patel, but still considering options. As to Radiation, I have two cousins who are brothers that had different rad oncs and different results, even in terms of how they faired during treatment. I am concerned about getting the best as well. Thanks for the reply and encouragement.

[Baldylocks]

I’ve read the response below from Hidden and given my experience thus far he is spot on with his information and suggestions. My Gleason was 7 (3/4) and confined to left sector. 66 years of age and I am one month out from completion of external beam radiation treatment after six weeks. The BPH is showing signs of improvement. Just about to start daily Cialis which hopefully is suppose to help return stronger harder erections and avert shrinkage. I have had only two climaxes since treatment, both preced by a twinge of pain in my right testicle which lasted only as long as my climax. I’ve put a question concerning this to my urologist and awaiting an appointment. The additional suggestion I’d make is you find an in person support group and bombard them with every question imaginable as well as listen on bent ear. It will help tremendously to make the best decision you can live with. I would leave you with this. You are 59, you have two kids and your grandkids. While no man prefers pull-ups to underwear nor missing out on sex, missing out on seeing your children and grands grow and being in their world may weigh with the sacrifice. I only use the pull-ups when traveling and continue to plug away as best I can. So far, all my loved ones make it happen. Best to you my brother.