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decision time for me

golfnut
Posts: 2
Joined: Apr 2011

I have been reading everyones story and feel ready to share.
I am a 63 yr old in excellent health. I am treated for BP with Cozzar with excellent results.
Do use Cialis as needed and do well.
My PSA was 3.57 when we did the biopsy.
10 Cores with 4 findings on the right side: 2 at 5%, 1 a 20% and 1 at 25%
Prostate is 35cc and measure 3.3 x 4.4 cm.
Bone and CAT scans negative. MRI indicates disease within the prostate with some abnormality near the edge but not outside the capsule.
I have met an outstanding robotic surgeon and a very talented radiologist. Both have doen more than 500 seeds, or 700 surgeries.
I understand what i have ben told about side effects with each, but am strugglig to decide whats best for me, like many other men. I am lookign for some keys to reaching a decison soon, as i dont think i wiull be any smarter a month from now.

2ndBase's picture
2ndBase
Posts: 220
Joined: Mar 2004

You can learn a lot in a month and come to the right decision for you as to what plan of action you might take. Taking Cialis, I believe, would be a bad idea at this point. I know I was told not to take such drugs when I was first diagnosed as they increase the testosterone levels upon which the prostate cancer feeds. My cancer had already spread by the time it was discovered and I took radiation treatment which killed all the cancer in the prostate. I had a second biopsy years later which confirmed this. I wish you the best as you come to terms with this problem.

mrspjd
Posts: 689
Joined: Apr 2010

Golfnut,

Welcome to the PCa forum but sorry you have to be here. Appreciate you sharing your story and decision dilemma.

I agree w/ 2ndBase that you could learn a lot in one month. For instance, one critical part of your PCa staging (that can impact your tx decision options) is your Gleason score. Perhaps it was just an oversight but, I didn't see it included w/the PCa profile you posted.

Another bit of important info lacking from your post is the results of your 2nd opinion pathology report (on your biopsy lab slides), obtained from a nationally respected pathology lab specializing in reading PCa lab slides, such as Johns Hopkins. If you haven't already arranged for that review & report, that's something that can be done in the next month. Have you attended any face to face PCa networking groups in your community?

These are just a few (of many) educational suggestions to consider & learn about in one month before making a tx decision--one that will be right for you based on your pre-tx accurately staged PCa and your lifestyle. I'm sure others will offer more educational recommendations as well as share their PCa journey.

With all due respect, I hope you reconsider and take some add'l time to educate yourself about PCa. While you are wise to seek lay opinions on this site, ultimately it will be your decision (no easy task), and obviously, what may work or be right for one, may not be appropriate for another. No two cases of PCa are alike.

Even those of us that have been posting about PCa for a while will be the first to tell you that we are still learning. The PCa learning curve is high.

Wishing you all the best.

PS: @ 2ndBase - Happy Birthday!

VascodaGama's picture
VascodaGama
Posts: 1535
Joined: Nov 2010

Golfnut

Both treatments (seeds or surgery) may give you permanent debilities (side effects) which it seems that you are aware of already. Your choice therefore, will be on the side effects that would work better for you.
Nevertheless, both treatments are appropriate and aim at cure if the cancer is in fact localized within the prostate.
MRI is not a definite test to consider that cancer is “within the prostate” as you posted. Your comment on “some abnormality near the edge but not outside the capsule” is more likely to indicate of a higher possibility of perineural invasion.

In such setting, recurrence is probable and you may consider about the need of a salvage treatment in future, such as external beam radiation, which applied AFTER seeds will worsen the trouble of side effects from radiation. In this case, the worse reported effect is “vesicorectal fistula” which is caused by damage to the inner wall of the rectum which connects to the bladder, causing continuous drain of urine into the rectum.
Often seeds present success results when combined with other external beam radiation and hormonal therapy at treatment.
If you consider the possibility for a needed salvage treatment, surgery may be the best choice between the two.

The major problem from seeds (brachytherapy) is reported as urinary urgency and weaker streams. I recall reading a patient comment saying that “…can’t start it, stop it and I never know when I am going to excrete urine, so I have a permanent supra pubic catheter with collection bag…”
Erectile dysfunction is also present but it usually lasts until the nerves (around the prostate) are repaired or replaced by others in a short period. Patients with rectal ulceration (pancolitis or ulcerative colitis) report experiencing nasty relapses from brachy which I would advise you to check for any past problem with you, before making a decision.
Surgery’s major reported side effects are erectile dysfunction and incontinence, which have been reported very serious in some cases, but that depends very much on the surgeons practice experience in handling the robot.

Many patients choose brachytherapy because it is a one-day treatment while robotic surgery requires 4 to 7 days. External-beam therapy like IMRT/IGRT requires eight weeks of daily treatments but it has been reported to have lesser side effects than bracky alone.

You could try to certify the perineural invasion or any metastasis before making a decision doing the recent test USPIO (Ultrasmall Superparamagnetic Iron Oxide high resolution MRI) which is done at Sand Lake Imaging in Orlando.
Your Gleason score and pattern of cancer cells also would give you more insights to perfect your decision.
http://www.nejm.org/action/showImage?doi=10.1056%2FNEJMoa022749&iid=f02

Wishing you get to a satisfying conclusion.
VGama

golfnut
Posts: 2
Joined: Apr 2011

first, thanks for responding to my post. My Gleason was 3 plus 3 =6 for each core finding. There were 4 out of 10. I will ask for a second opinion path report. In your experiecne what may the second opinion show?
Best

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

Golfnut,

Welcome to the forum. You've received some good advice from others. I would just like to add that your decision isn't really a robotic or seeds choice unless that is what you have narrowed your options to.

As you may know, there are several other types of radiation that have been developed and improved in the past several years that include SBRT, IMRT, tomography, IGRT, proton therapy and so forth. These newer types of radiation treatment generally have less frequent and less severe side effects than seeds because of their technology that allows them to deliver a radiation dosage with sub millimeter accuracy as well as compensate for the movement of the prostate in real time. All of these techniques serve to minimize dosage to surrounding organs and tissue which is frequently the cause of recorded side effects. In my own case, I chose SBRT radiation (CyberKnife) which is a five-session regimen that delivers hypo-fractionated radiation very precisely while it adjusts in real time for the movement of the prostate. I have experienced zero side effects since my treatment last June. (My dx was 1 of 12 cores positive with 15% involvement, Gleason 3+3=6, PSA 4.3, stage T1c, normal DRE, no symptoms, no family history, age 59)

Many of the statistics regarding radiation versus more invasive methods like surgery are skewed by data from radiation treatments delivered before the newer computer aided technologies were developed in the last several years. These older forms of radiation while often successful were accompanied by some side effects such as near term urinary irritation or frequency, long term erectile function decline, and some rectal toxicity. All of these symptoms resulted because the dosage was delivered to a broad area of the pelvic region and radiated uninvolved tissue and organs in the vicinity of the prostate. I would encourage you to investigate some of these newer radiation techniques, look at their success rates, discuss them with your medical team, and factor that into your decison process.

One thing I found useful in narrowing my potential treatment options was to build a matrix where I listed the treatments under consideration and rated them based upon my own priorities for efficacy and quality of life. Factors I included were recovery time, risk of urinary incontinence, risk of ED, convenience, insurance coverage, long term effects, recurrence rates, doctor rating, and so forth. I then rated each treatment according to my own priorities as to what was important.

Keep in mind that you don'g get a Mulligan on this choice so please take advantage of the time you have now to consider the widest possible range of treatment options before you commit yourself.

Best of luck to you and hoping that you score a birdie on this hole.

Best,

K

Swingshiftworker
Posts: 626
Joined: Mar 2010

I agree w/Kongo that your choice is not simply between surgery or seeds. Kongo is very good about trying NOT to appear biased in his responses. I am not so restrained. He & I both chose CK (Cyberknife SBRT radiation) for treatment because it has reportedly had the LEAST physical side effects for men -- like us and like you -- w/early stage PCa. Neither of us has reported any ED, urinary or any other dysfunction following treatment and both of us (he more rapidly than I) are progressing towards lower PSA levels indicating the success of the treatment.

IMHO, robotic or open prostate surgery is simply NOT necessary for men w/early stage PCa, especially given the very HIGH incidence of impotence and urinary dysfunction for at least a year (and in some cases, permanently) following surgery. The precision and effectiveness of radiation treatment has also advanced far beyond what brachytherapy treatment (seeds) have to offer and IMHO CK (and similar methodologies) are currently the best possible choice for treatment for men w/early stage PCa. You have the time, so take the time to investigate CK and other raditation treatment options before opting only for surgery or seeds -- your quality of life is at stake!!!

BTW, Active Surveillance is NOT a form of treatment. It is an approach that involves close monitoring of your PCa (quarterly PSA tests and annual biopsies) and in some cases, food & lifestyle changes made by men who want to avoid treatment as long as possible given the "hope" that their PCa is not aggressive and will not advance sufficiently in their lifetime to require treatment. Chances are that you may never need treatment -- at least not w/in 5 years, based on statistical data. However, if the PCa is later found to have advanced, it could be more virulent and less treatable than expected because PSA and biopsy testing are not perfect at detecting the precise stage of the cancer. Also note that biopsies are feared to be associated w/PCa cell migration, which is also something to be considered if you're interested in active surveillance.

Best wishes and good luck to you in your journey to become a PCa survivor!

mrspjd
Posts: 689
Joined: Apr 2010

Golfnut,

Re your question: The importance of obtaining a 2nd opinion on your biopsy lab slides cannot be stressed enough. It is the first of many crucial steps in understanding your unique PCa risk before making any tx decisions. As previously indicated, there are a few nationally known, well-respected pathology labs that specialize in analyzing prostate biopsy core samples. It is recommended that only these labs be used when obtaining the 2nd opinion path review as they specialize in reading the variant PCa cell growth patterns (unlike local labs that read all types of cancer specimens and may not be as familiar with those of PCa).

Recently, another user posed the question: "How do I obtain a 2nd opinion on my biopsy?" Here's the link to that thread where several options are discussed: http://csn.cancer.org/node/212732

In general, the 2nd opinion report will do one of three things with regard to your Gleason score, % of involved cores and identification of possible PNI (PeriNeural Involvement): confirm; downgrade (worse); or upgrade the first report from your local lab. This add’l info will be important in considering which tx choices might be most appropriate, and have the best chance for successful outcome, for your PCa staging.

Re MRI: There are MRI’s and then there are Endorectal MRI’s w/spectroscopy using Tesla 3 technology. In the case of the latter, the E-MRI is considered by many in the PCa medical community as the gold standard for pre-tx staging when determining if ECE (Extra Capsular Extension) is present. However, this test is usually reserved for those cases where PNI is suspected/identified on the biopsy report; or nodule findings and/or higher risk is believed to be present. Unfortunately, like most things related to PCa, no diagnostic testing can be relied on to be 100% accurate but, IMO, it’s the best that’s available now.

Hope you're enjoying a day out on the greens. If not, you're probably inside watching the Masters!

Best,

mrs pjd

Swingshiftworker
Posts: 626
Joined: Mar 2010

Just to set the record straight (and w/due respect to 2ndBase who suggested otherwise), Cialis does not have any DIRECT effect in increasing testosterone.

It like the other ED drugs -- viagra, levitra, etc. -- are PDE5 (phosphodiesterase type 5) inhibitors which promote the release of nitric oxide in the penile nerve endings during sexual stimulation which in turn increases the release of cGMP (cyclic guanosine monophosphate -- a cyclic nucleotide) which relaxes the smooth muscles of the penis leading to engorgement of the corpus cavernosum, which is the spong-like erectile tissue in the penis which fill w/blood during an erection, which in turn enables men w/ED to have satisfying sexual intercourse again.

None of this mechanically based physiological process has anything to do w/the production of testosterone.

Interestingly, Cialis has a longer half-life in the body than other ED drugs and men who use it apparently have higher testosterone levels than those who use viagra and levitra because they can have more sex due to the longer lasting effect of the drug. FWIW, I recently had my testosterone levels checked (bound and free) and both readings were w/in the middle of the "normal" range for men age (60) despite taking 5mg cialis daily for over 2 years.

That said, increased sexual activity associated with or WITHOUT ED medication has been associated w/increased testosterone production; ie., if you have sex, your testosterone level will increase whether or not you use an ED medication.

So, if you don't want your testosterone level to go up, the solution is NOT to stop taking Cialis (or any other ED med). The REAL solution is to become celibate -- which for some post-surgical patients is unfortunately not a matter of choice and which for me -- a post-CK radiation patient -- is simply NOT an option.

BTW, your PSA level will also go up after having sex, which is a reason I why I no longer have sex for a couple of days prior to taking a PSA test.

Randall72
Posts: 34
Joined: Mar 2011

Hello,I'm new to this site. I have been dx with this cancer in Feb.2011.My PSA was 2.5 in '09,then went up to 4.08 in 2010. Was retaken in Feb.2011,was then found to be 4.70. My Gleason was 6-7 of 12 cores 3 were 5%, 3 were40%, the others were ok. CAT and Bone scans were good. Confined to the left side of the prostate. Over all I'm in very good shape,I'm 56,with no medical/family history of this. Today we have to meet with the robo surgeon and radioligist, to make decision of best options. We are leaning towards surgery, and know most of the side effects. So wish luck And thanks for all the input and knowledge.

kddh
Posts: 14
Joined: Nov 2010

...with your decision, and don't feel you have to make it any earlier than truly necessary!

RollingHill1953's picture
RollingHill1953
Posts: 1
Joined: Mar 2011

Randall72, In Jan of this year (2011), my doctor told me that I had prostate cancer after taking 12 cores - 2 where at the gleason level 6 and two at the 7 level. The cancer was on both sides of the prostate. I'm 57 with a uncle who had prostate cancer and went with the robot surgery last year. After looking at all the options, I also went with the robot surgery last month (March 2011). It's been five weeks now and I feel fine, the prostate is gone and I will be getting a blood test in June as a follow up just to make sure. Good luck with you surgery and always look forward to a better life without the cancer.

Randall72
Posts: 34
Joined: Mar 2011

WE went to the surgeon this past tuesday,he told us our options, but also threw a curve....gleason was 3+4,but not a stage 2 but a 3 now because 1 core was found to be 95% at the bottom of the prostate, againest the nerves.He did say he always trys to save the nerves.We/I decided to go with robo surgery.Even the radiologist agreed. So now the last waitng game begins......Date and time of the surgery.My concern is that the 95% one doesnt spread b4 to the nerve prior to surgery. Guess normal anxeity.Will keep in touch. Thanx for your input RollingHill.

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