recently diagnosed

[dmlock]

Hi - Recently diagnosed with Prostate Cancer. 7 out of 12 cores were positive. Gleason score is a 6. Clinical Stage is T1c. I have met with a surgeon and radiologist. Leaning toward surgery due to my age - 58. very interested in similar experiences.

[David1958]

I was diagnosed at 52 due to symptoms of urinary frequency and urgency. PSA 5, My prostate came in at 31ccs with a PSA density of 0.14. Gleason score of 7 (3+4). I had 6 positive cores with cancer in both lobes. Stage T2c. I chose surgery (the R.A.L.P method) on June 20, 2011. When it came out, the pathology reported it to be T3a but had not extended beyond the surgical margin. Previous hernia surgeries (one traditional the other laparoscopic) prevented harvesting the lymph nodes on the left side. I did not have radiation therapy as a follow up. My PSA has been undetectable since the surgery.

I am sorry you have joined this fraternity of men. Life itself will never be the same once you get treatment for PC. Incontinence is the first side effect you will have to deal with. Men are born with two urinary sphincters. One in the bladder and one in the prostate. It is the reason men can hold their pee for so long. You may have noticed that women cannot hold their pee for long. They have only the bladder sphincter. You are about to join their ranks. The first order of business is learning how to use that last remaining sphincter. Kegal exercises is the order of the day. Do them often. It took me 3 months to learn how to pee again. Dry as can be unless I ignore the urge to go for any length of time. You will be sitting there happy as a clam and then decide to get up. Ding ding ding ding! Time to go, have to go NOW!

I save the next indignity for last. Impotence. Only a few men are lucky enough to escape PC treatment with no effect on their ability to have an erection. Hell, I was having trouble getting Mr. P to perform to his usual standards before I had surgery. Dropping T levels is a man's form of menopause. It was no stretch to find that Mr. P was DOA after surgery. You will find yourself trying to inflate him with a pump, stick him with a needle full of tri-mix which will give an erection for up to four hours. I found that to be unbelievably uncomfortable. I have tried the little blue pill to no effect, at least where it was intended. One of the reported side effects is atrial fibrillation. Yup, I can verify that. So no blue pills for me.

One more tidbit of news. Mr. P shrinks with lack of use (erections). I understand that Urologists prescribe some form of the blue pill right after surgery to keep blood flowing to the comatose Mr. P.

[evreca]

Although from the info given, you appear to be eligible for Active Surveillance. Consult with the PAACT guide for the newly diagnosed:

paact.help/newly-diagnosed-...

Even at your age, you should take some time to determine your options rather than jumping right in for surgery. Consider: a. Getting a multi-parametric MRI to determine the location and size of the relevant tumors (or an alternative MRI-ultrasound fusion biopsy), b. Make certain your Gleason score is accurate - send sample through your lab to a reputable lab that specializes in prostate cancer tissues, such as Johns Hopkins or Bostwick Lan, c. Get a biomarker test, such as 4K score or Oncotype DX to determine if there is a large or little likelihood of an aggressive form of prostate cancer, d. Consult with a prostate cancer oncologist for a second opinion rather than any urologist - many physicians will tend to guide you to treatments that they specialize in rather than for your long-term benefit., e. Try to get familiar with all the options and side effects; has your urologist discussed these with you? For example, for surgery, about 10-20% have long term incontinence, maybe 20% have penile shortening, if not done effectively to minimize nerve damage, may produce ED. Just my thoughts to get greater awareness and confidence in your action.

[Hidden in reply to evreca]

I agree with the above advice. You do know that a biopsy (and so the gleason score) may miss areas of cancer. The mpMRI is fast becoming the diagnoastic tool of choice to rule out more dangerous cancers. I am not familiar with Ocncotype Dx or its success rate. Makes sense to do something like this. That is its entire purpose (hence the Dx in the name).

[dmlock in reply to evreca]

thanks. MRI scheduled for Wed. Second opinion at Memorial Sloan Kettering on Friday. Met with a surgeon and radiologist (radiologist recommended surgery)

[Neathuh1]

Hi dmlock. You have a wonderful gift, the gift of time. At your stage you do not have to rush into anything. Not that you should dilly-dally, but take time to read and learn as much as you can so that you arrive at decisions made from knowledge, not panic. Many are not so fortunate and are left second guessing as to whether they did the right thing. It's sad that there are no firm guidelines as to what course to follow with our disease. Each of us, with our doctors, does what we think best. Best of luck to you and God bless.

[Hidden]

I was Dx at 50, and since the PCa was in my lymph nodes, I was not considered a candidate for surgery. So, I had IMRT, and have been on ADT since. Fast forward seven years, and in hindsight, I would have pushed for the surgery. Either option would lead to sexual dysfunction anyway. I think the key here is to be prepared for the end of old one-eye lookin' up at ya. As a matter of fact, if you take the ADT route, expect ol' Henry to shrivel up to...never mind. Say good by to your nut sack too, you don't need one to hold a couple of peas. I don't know if I would have been better off if I elected surgery, but it seems to be used more frequently these days.

Good Luck, Joe

[ng27868168]

Sorry as well that you have become a member of our clan. After reading several of the previous comments, I will say this, I agree with most of them, however....., after having been diagnosed at age 52, with a PSA of 11.4 and a positive biopsy (I am now 76 and have experienced most, if not all the side effects) I opted for radical surgery after both my urologist and general Dr. recommended it rather than "watchful waiting or active surveillance" or radiation, as PCa tends to be more aggressive at a younger age which you still are. First of all, let me say this; I AM NOT A DOCTOR OR MEDICAL EXPERT, but, since my experience with PCa 24 years ago, I have been an active member of our local PCa Cancer Support group serving as a facilitator and as an Amer. Cancer Soc. mentor. During that time I have seen and talked by phone with more than a few men who, having been diagnosed at a relatively early age, chose "Watchful Waiting" which in far TOO many cases meant they basically ignored the symptoms and "Active Surveillance" means, which in many cases, waiting and having to do what should have been much earlier, but with less positive results. As you may have figured out, neither "WW or "AS" is on my recommended list, but again, I am not a Dr.

Yes, the side effects of surgery are something very important to consider, but PCa is NOT like a cold, it's NOT going away by itself but luckily for us, it is fairly easy to cure IF taken care of early. And having watched men eventually pass away from advanced PCa which usually ends up being bone cancer or other organ affected Ca, it must be taken serious.

Sorry to be less than sunny, but that's the reality of our disease.

[azcanuck]

Hi DM,

sorry you are joining this fraternity, but as you can tell many here have very helpful information which can aide you in deciding your best course of action. In my case, 53, rising PSA levels reached 6.5 in the fall. Biopsy uncovered 10 of 12 core samples +'ve with Gleason 4+3 in one core, 3+4 in 9 cores, MRI showed prostate encapsulated, prostate volume was 25 cc, PC was stage T2c. I had familiar history and had a hard time accepting that I was not more direct in diagnosing the cancer earlier on. The repercussion of waiting was a significant limit in available procedures to treat the cancer.

I consulted with 2 urological oncology surgeons, 1 urological oncology radiologist and 2 High Intensity Focused Ultrasound (HIFU) surgeons. Each had their opinions about why their method of treatment would be advantageous, but I was somewhat surprised that after in depth conversations the radiologist and HIFU Docs admitted surgery would be their choice if it was them being treated with my symptoms, nice to know Docs have integrity!

For me, the risk of recurrence played a big role in my decision to go ahead with Robotic surgery. I considered Calypso Radiation, which uses implanted beacon transmitters in the prostate to improve the accuracy of the radiation dose. The advantages with radiation are that it is less invasive, recovery is quicker, sexual side effects can be less and the cure rate is similar to surgery and HIFU. The drawback is if the PC recurs the treatment options are quite unpalatable, salvage surgery not usually an option. Since my PC had spread significantly to both sides I decided against this option.

HIFU has been around for years but is not an AMA accepted form of treatment in the US. There are a number of practices around the country that perform hundreds of HIFU treatments but it will be an out of pocket cost of $25K. The advantage of HIFU surgery is again it is not nearly as invasive as surgery, promises quicker recovery with minimized sexual and incontinence side effects. Statistically it is as effective as both radiation and radical prostatectomy surgery and has the advantage of radiation treatment or surgery should recurrence occur. Here is the link to one organization if you want to look into HIFU, hifuprostateservices.com/, I personally found Dr Peretsman knowledgeable, experienced and professional. For me, the deciding factors were money and my symptoms being a little advanced for HIFU to be completely effective.

So in the end I went with Davinci surgery, robotic RP. Davinci surgery gave me slightly better peace of mind that the PC could be cured with removal of prostate, seminal vesicles and all lymph nodes, (even though the side effects of surgery were more pronounced than HIFU or radiation). At least if there is recurrence I can still have promising salvage treatments with radiation and/or drug therapy. I had surgery 18 days ago, performed in Denver, and so far so good. The first week of recovery was rough, (I have pericarditis which was agitated by the surgery). After catheter removal regaining control of urine is also somewhat challenging, kegels are the name of the game to put an end to depends!

The good news for you is that you are early stage diagnosed. If you do opt for RP the chances of your Doc being able to spare your nerve bundles will be much better, which means you have a higher percent probability of regaining sexual ability. And you also have many more less invasive equally effective options to choose from.

One tool I found somewhat informative is a site that summarizes 3 different prostate recurrence probability calculators. If you want to have your eyes opened a little to see how different stages of PC affect recurrence rates....hopkinsmedicine.org/brady-u...

Good luck in your endeavor to find the right cure for you,

Chris

[dmlock]

very similar experience with blood in urine and semen after the biopsy. it eventually went away.

[David1958]

Bob. like you I have arrhythmia which, for me, led to atrial fibrillation. One of the side effects of pills like viagra is atrial fibrillation. I can verify that. As a consequence, I could not use pills like that for penile therapy. I tried every other method out there. The only step I refuse to take is roboprick. Or zombieprick is another favorite. I have expounded before on my objections to this approach. That is just me and my opinion. Kudos to those who love the on demand hardon.

[dmlock]

Thank to all for your thoughts and responses. As a follow up to my post - I went to Memorial Sloan Kettering for a second opinion. After reviewing the biopsy slides and MRI, in addition to a physical exam, the physician is recommending Active Surveillance. I'm going back in April for another biopsy that will target the cancerous area to validate the Gleason score. If those result come back with a score of 6 he will most likely continue to recommend Active Surveillance. His reasoning is the PC is over treated, my cancer is slow growing, no reason to risk side effects just yet and technology is rapidly changing.

I'm somewhat relieved, but will wait for the biopsy results before I make a decision.