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Delaying prostatectomy 6-12 months, PSA 2.49, 1 of 12 biopsies positive

Scumcrode
Posts: 15
Joined: Mar 2017

So I'm soon to be 47. My PSA is 2.49 and my biopsy a month ago result is 11 of 12 biopsies showing no cancer with 11% of the other being positive. The Gleason score is a 3+3 (low risk). Onco DX testing on the positive specimen is still pending. My situation is that my wife and I have a 2 year old girl and we are expecting a boy August 2. Our original plan was to have radical prostatectomy in autumn, allowing a few months to make sure the newborn is okay before closing up shop so to speak. Two kids are all we wanted anyway, but adding to the dilemma is that we just discovered that the baby will need open heart surgery within his first week for a condition called TGA (Transposition of the Great Arteries). Our plan is the same, but I think I'd rather the newborn be at least 6 months old, which pushes the prostatectomy back to 10 months away. The only specific information about TGA infant mortality is that the initial surgery is at least 95% successful and that the baby would be home in 2 weeks. The 6 month time frame is purely my own. I've had 4 urologists recommend prostatectomy because of my young children, of which I concur, and all 4 agreed that waiting until November would be fine. I haven't asked them about waiting until February yet as the news of the new baby is fresh. Is waiting until February (or November for that matter) for the RP surgery wise in my situation? We want a second child, but the thought of this spreading with young kids is dreadful. 

hopeful and opt...
Posts: 2218
Joined: Apr 2009

Where I am treated (click my name to the left to see what my treatment for the last 9 years) several years ago, before I entered the program,  a man who was less than 35 was admitted to the program...............since then he has had a child, and is still in the Active Surveillance program

i suggest that you seek out a specialist in Active Surveillance, at a high volume center of excellence to look into your case.

 

Scumcrode
Posts: 15
Joined: Mar 2017

Thanks for replying. What would an AS specialist do differently than my urologist, and how would I go about finding one? Also, any opinion on that I've heard that side effects of RP being less the younger it's done, at least in part to less scarring that multiple annual biopsies can cause? 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3207
Joined: May 2012

Scumcrode,

Waiting 6 months or even a year with your particulars should be easy, even without A/S.

I hope you have seen a Radiation Oncologist to look at radiation options.  I myself had DaVinci surgical removal at 58, but still recommend that guys in your low range of cancerous involvement speak to a rad guy before deciding, as I did. You owe it to yourself.

max

Scumcrode
Posts: 15
Joined: Mar 2017

Thanks. Based on the feedback I've received today I'm leaning away from surgery now and more towards AS with plans of finding both a high quality AS specialist and radiation oncologist. Cyber Knife sounds like a great alternative to prostatectomy, although I feel the 4 docs I spoke to were all considering my 2 year old and yet to be born son as rationalizing removal of the prostate as the safest way to guarantee a "30 year cure." 

VascodaGama's picture
VascodaGama
Posts: 2939
Joined: Nov 2010

S,

I am sorry for your situation. Young with family and many years of life expectancy. Your next steps must be planned carefully and with more considerations than what you describe above. I wonder why are you posting here. Do you have any inquire or just are looking for opinions on your decision?

By the info you share above I cannot understand why you have chosen surgery or even why you have been recommended surgery, not only by one but four doctors (vultures?). Gleason (3+3) 6 is the lowest in aggressivity and some in particular (those lower rates of 1 and 2) never cause trouble along the life of an holder. One positive core out of 12 with just 11% of contamination (a tiny 1 x 1 mm piece) cause no urge in the treatment of a Gs6. Apart of that, I do not think that having young children is the reason that made you to choose surgery. You are worried and freaking out for the diagnosis. This is typical with all us at the beginning. We become blind and just want to get it out.
Still more, exactly because you have young children and with one needing heart surgery, you should pounder if you (in fact) need treatment at all. Will you be there while they are young?
Postponing a case with the details you post above is logic and acceptable in all corners of the medical care. Each PCa case is unique, however, guys with worse status that yours have managed more than 5 years without treatment and without worsening their cases. They follow AS (active surveillance) to supervise their condition.

Best wishes in your child heart surgery.

VGama

Scumcrode
Posts: 15
Joined: Mar 2017

Thanks for the reply. I'm glad to hear that waiting using AS seems fairly safe. All 4 docs have mentioned that my CA might possibly never cause a problem, but that they don't want me to be the rare case of having it spread during AS. I've worked in an OR for 15 years, so the 4 urologists are doctors I've either worked with in the past or work with now, so I don't think the vulture theory applies. I would suggest that it is possible they are being overly cautious to avoid having the entire staff see a co-worker die under their care,  except that I always ask what they would do themselves if it were them. All four are roughly my age, 35-50. Other reasons to do this sooner, however, are the better results the younger the RP is done, at least partly due to the less scarring multiple annual biopsies cause. I do have an appointment with a big name surgeon next month, unknown to me. 

Clevelandguy
Posts: 410
Joined: Jun 2015

Hi,

One thing I would want to know is where the cancer was located inside the Prostate.  If it's close to the edge of the gland it would bother me more than being in the center of the gland(I assume the cancer grows outword from the source).  Might want to check the location of the positive sample to see where in the Prostate the sample was taken.  Once the cancer escapes the gland it's much harder to treat. Just my 2c worth.

Dave 3+4

Scumcrode
Posts: 15
Joined: Mar 2017

Thanks for that info. It was the "6 o'clock" specimen on the diagram printout of the results. Not in front of me now but I'll check that again for precise location. Two docs didn't ask about location (these were not office visits) and I don't recall the location being acknowledged by the biopsy doc as significant, nor did one of the surgical consult doc. Makes sense what you are saying though. I'll keep it in mind

hopeful and opt...
Posts: 2218
Joined: Apr 2009

AS speicalist..........this person is also a urologist, however he is knowledgeable about the requirements for active surveillance and generally manages many. I am treated in an active surveillance program  where state of the art equipment exists. Along with other diagnostic tests, they provide a T3 MRI and three dimensional biopsy based on the MRI. (click my name to the left to see a record of my case, along with other pertinent information about active surveillance). Other major institution also have personnel who treat patients in an Active Surveillance protocol.....where are you located? I might be able to direct you.  

As far as your statement about scarring. I have not been aware of this, or have ever been aware of side effects from scarring if in fact this occurs,..... but I would discuss this with your doctor.

RP...yes you are right. If a surgeon does a perfect operation on a 47 year old, the patient may show no side effects, however if the exact same operation was done on a 67 year old side effects are more likely.

If you are able to continue with active surveillance there will be no side effects at all. You can go on with your life.....(approximately 30 percent of patients who start AS, have to have treatment, while 70 percent do not)  In my case this is the 9th year that I have been in an active surveillance program....no active treatment with possible side effects......Studies have shown that a man in an active surveillance program, where the cancer has progressed  may still choose the treatment that he would have at initial diagnosis.

By the way, you mention that you spoke with four urologist and are seeing a big name surgeon(anothe urologist), and your biopsy was of course done by a urologist....(kinda getting the message!)  There are other forms of treatment, ie IMRT, Bracky, SBRT(of which one form of delivery is cyberknife, so I strongly suggest that you do research, visit docs in these specialties, read book, keep posting here, asking question, go to a local support group (ustoo is an international organization that supports and provides a listing of local support groups...go to their site)

Scumcrode
Posts: 15
Joined: Mar 2017

Thanks for the input. I'm going to seek out a reputable AS / treatment option practice. 

Scumcrode
Posts: 15
Joined: Mar 2017

Cyber knife sounds like a great option, as does continuing with AS. If you know of sone good doctors in each field here I'd appreciate it! 

Swingshiftworker
Posts: 1013
Joined: Mar 2010

I am not sure that you have been fully aprised of the options available to you for treating your cancer.  So, FWIW, I have posted my "Choices to Consider" sticky on the topic just to make sure that you know all of your options.

That said, in your situation, I'd agree w/Hopeful that you bascially should do nothing but Active Surveillance in order to deal w/the other problems in your life before you address yours, given that there is NO necessity for immediate of your cancer.  The info I posted may also cause you to reconsider your choice of surgery, which I am generally opposed to because there are much less draconian and potentially harmful treatments available to you.

I wish you and your family the best of luck!

 

The following is a duplicate of one that I have posted in various threads on this forum to give men newly diagnosed w/lower risk prostate cancer (Gleason 6 or 7) an overview of the treatment options available to them.

 

Anyone newly diagnosed with prostate cancer rated Gleason 6 (and usually Gleason 7) has all treatment options available to him and, since this cncer is considered "low risk", he has time to decide which choice is best for him.  So, the first thing a new prostate cancer patient should do is to do research on the available options before he actually has to make the decision regarding which treatment to choose.

The following is my response to other men who asked for similiar advice about the treatment choices avilable to them.  It's a summary of the available treatment options and my personal opinion on the matter.   You can, of course, ignore my opinion about which treatment choice I think is best.  The overview of the choices is still otherwise valid.

 . . .  People here know me as an outspoken advocate for CK and against surgery of any kind.  I was treated w/CK 6 years ago (Gleason 6 and PSA less than 10).  You can troll the forum for my many comments on this point.  Here are the highlights of the treatment options that you need to consider:

1)  CK (SBRT) currently is the most precise method of delivering radiation externally to treat prostate cancer.  Accuracy at the sub-mm level  in 360 degrees and can also account for organ/body movement on the fly during treatment.  Nothing is better.  Accuracy minimizes the risk of collateral tissue damage to almost nil, which means almost no risk of ED, incontinence and bleeding.  Treatment is given in 3-4 doses w/in a week time w/no need to take off time from work or other activities.

 2) IMRT is the most common form of external radiation now used.  Available everythere.  Much better accuracy than before but no where near as good as CK.  So, it comes with a slightly higher risk of collateral tissue damage resulting in ED, incontienence and bleeding.  Unless things have changed, IMRT treatment generally requires 40 treatments -- 5 days a week for 8 weeks -- to be completed.  I think some treatment protocols have been reduce to only 20 but I'm not sure.  Still much longer and more disruptive to your life than CK but, if CK is not available, you may have no other choice.

 3) BT (brachytherapy).  There are 2 types: high dose rate (HDR) and low dose rate (LDR).  HDR involves the temporary placement of rradioactive seeds in the prostate.  CK was modeled on HDR BT.  LDR involves the permanent placement of radioactive seens in the prostate.  1/2 life of the seeds in 1 year during which time you should not be in close contact w/pregnant women, infants and young children.  The seeds can set off metal/radiation detectors and you need to carry an ID card which explains why you've got all of the metal in your body and why you're radioactive.  Between HDR and LDR, HDR is the better choice because with LDR, the seeds can move or be expelled from the body.  Movement of the seeds can cause side effects due to excess radiation moving to where it shouldn't be causing collateral tissue damage -- ED, incontinence, bleeding, etc.   Both HDR and LDR require a precise plan for the placement of the seeds which is done manually.  If the seeds are placed improperly or move, it will reduce the effectiveness of the treatment and can cause collateral tissue damage and side effects.  An overnight stay in the hospital is required for both.  A catheter is inserted in your urethra so that you can pee.  You have to go back to have it removed and they won't let you go until you can pee on your own after it's removed.

 4) Surgery -- robotic or open.   Surgery provides the same potential for cure as radiation (CK, IMRT or BT) but which MUCH GREATER risks of side effects than any method of radiation.  Temporary ED and incontinence are common for anywhere from 3-12 months BUT also sometimes permanently, which would require the implantation of an AUS (artificial urinary sphincter) to control urination and a penile implant to simulate an erection to permit penetration (but would not restore ejaculative function).  Removal of the prostate by surgery will also cause a retraction of the penile shaft about 1-2" into the body  due to the remove of the prostate which sits between the interior end of the penis and the bladder.  Doctors almost NEVER tell prospective PCa surgical patients about this.  A urologist actually had the to nerve to tell me it didn't even happen when I asked about it.   Don't trust any urologist/surgeon who tells you otherwise.  Between open and robotic, open is much better in terms of avoiding unintended tissue cutting/damage and detection of the spread of the cancer.  Robotic requires much more skill and training to perform well; the more procedures a doctor has done the better but unintended injuries can still occur and cancer can be missed because the doctor has to look thru a camera to perform the surgery which obstructs his/her field of vision.

 4) You may also want to consder active surveillance (AS), which is considered a form of treatment without actually treating the cancer.  You just have to get regular PSA testing (usually quarterly) and biopsies (every 1-2 years, I believe) and keep an eye out for any acceleration in the growth of the cancer.  Hopeful and Optimistic (who has already posted above) has already mentioned this and is your best source of info on this forum about it. 

 I personally could not live w/the need to constantly monitor the cancer in my body.  Like most other men, I just wanted it delt with.  Some men gravitate to surgery for this reason, thinking that the only way to be rid of it is to cut it out, but I did not like the risks presents by surgery and opted for CK, which is a choice I have NEVER regretted.  I am cancer free, there is no indication of remission, there were no side effects and my quality of life was never adversely affected.  Other men on this forum have reported similiar results.

 So, for obvious reasons, I highly recommend that you consder CK as your choice of treatment.  The choice seems obvious when you consider the alternatives but you'll have to decide that for yourself.

 Good luck!

Grinder
Posts: 437
Joined: Mar 2017

If you need a record of the number of operations and complications and side effects for your local surgeons and hospitals, look for the website listed in the Surgeons Scorecard post in this forum.

Here's the problem that we all faced at one time or another. According to the American Cancer Society, nearly all men nearing age 50 have cancer cells present in their prostate. They may remain dormant for a man's lifetime, like my father who had prostate cancer left untreated and he died at age 90 of organ failure. Others, like my next door neighbor, out of nowhere the dormant inactive cells abruptly metastasized and he passed away of PC after a grueling year of unsuccessful treatments. It is nearly impossible to tell who's will activate, and whose will remain inactive, except for family history if there is occurrence of PC deaths in the past.

There is one advantage to DaVinci robotic surgery that should be mentioned. Do you have a family history of chronic prostatitis or severe BPH symptoms? If not, the less invasive procedures are the way to go, if you even need a procedure. In my case, robotic surgery was the way to go because my other symptoms were out of control. In your case its just the opposite, unless you develop symptoms of chronic prostatitis or BPH during your active surveillance. BTW... Naturopathic remedies and OTC drugs like Saw Palmetto and all the other snake oil remedies didn't do squat for me, except spend my money. But if you don't have those symptoms and have no family history of prostatitis or BPH, then robotic surgery may be unnecessary.

Scumcrode
Posts: 15
Joined: Mar 2017

Thanks for your insight. No hereditary prostate issues. My Dad died at 67 of complications 3 months after having his bladder removed for cancer, although he smoked, drank, ate whatever and hadn't exercised since he was in the Navy 45 years earlier. My grandfather on mom's side succumbed to stomach cancer at 58, although he had ulcers "forever" treated only with OTCs. I feel both were preventable. I'm a pretty healthy guy. Eat organic and exercise more than most, non smoker, social drinker. Since the diagnosis I have added flax seeds, increased the greens (tea, juices, leafies) and tomato intake. I believe BPH was ruled out by the prostate sizing done at the biopsy ultrasound, and the absence of symptoms. There is the positive biopsy, but I never thought to ask if prostatitis could be going on too. That I'll ask.  

hopeful and opt...
Posts: 2218
Joined: Apr 2009

Eigen manufactures the three dimensional artemis machine to target prostate cancer. NYU has this system. There may be one in Philidelphia as well...contact Eigen, the manufacturer to find out if there is an Artemis machine in Philly. Also there are other competitive machines that target prostate cancer, in the bore, that is, it is done in real time. You might wish to contact University of PA. You may also wish to contact Johns Hopkins, which is a two hour drive on I-95S. 

Attend a local support group, some one would know.

 

http://www.eigen.com/about/InTheNews.shtml

The Smilow Comprehensive Prostate Cancer Center Installs Artemis

Thursday, February 24, 2011

As a world leader in the advancement of the detection and treatment of prostate cancer, the Smilow Comprehensive Prostate Cancer Center at NYU Langone Medical Center is the first medical facility in the Northeast to install Artemis, an innovative image guidance and navigation system for prostate biopsy.

“We are very excited about Artemis,” says Herbert Lepor, MD, Director of the Smilow Comprehensive Prostate Cancer Center. “No major advances have been made in the TRUS/biopsy technique over the past 20 years, except for use of local anesthesia and a 12-core approach. This new device helps the Smilow Center provide the most sophisticated level of prostate diagnosis possible and assists our physicians in providing even better prostate cancer treatment and management, especially for men electing active surveillance and focal therapy.”

Read .

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3207
Joined: May 2012

My center installed Artemis last year -- great device.

max

Scumcrode
Posts: 15
Joined: Mar 2017

I appreciate your help. It sounds like my next move is to get a quality image of the tumor for both sizing and position purposes, but I'll keep this in mind for the next biopsy. One of the surgeons I just saw mentioned that the lone positive biopsy could have removed a nice chunk of the cancer or may have just grabbed a "tip of the iceberg", so it's easy to see why Artemus is a great tool. 

Scumcrode
Posts: 15
Joined: Mar 2017

Newly diagnosed 47 yo (PSA 2.49, 1 of 12 biopsies positive at 11% CA) hoping to do Active Surveillance looking for the best Philly, PA care team to utilize and noticed that the website for Fox Chase Cancer Center suggests that their Active Surveillance Program is "generally" for those with "less than 10 years life expectancy." I'm a little confused as I've had quite a few replies suggesting that AS is a completely viable strategy, despite my fairly young age. Is this just one facility's philosophy, possibly jaded by the increasing utilized long term survival statistics which are obviously better with early prostatectomy? 

VascodaGama's picture
VascodaGama
Posts: 2939
Joined: Nov 2010

S,

I am sorry if my "vultures" expression wasn't appropriate and has upset your coworkers. My mind was fixed on your child issue and the whole story regarding your postponement wishes. I image that these urologists were blind to your demands.

Survivors above have given you good opinions and I hope that you think wisely and find what fits your family situation and that is most comfortable to you. Probably your OR experience, where many things can go wrong and people die, made the coworkers to be overly cautious; in any case you need to believe that Gleason grade 3 doesn't spread that fast. Surely you have time to research, gather opinions and decide on the best. It all starts by guessing the location of the bandit, via the best exams of today (PSA, DRE, biopsy, 3t MRI, gene test). The clinical stage will then facilitate your decision. Your family should also opinion as this disease affects every one in the family.

Procuring cure is the goal but all treatments involve risks and some are linked to side effects prejudicing the quality of life of the patient. Recovery from such is never 100% accomplished even if the patient is young at the time of the intervention. One (and family) learns to live with the situation or gets frustrated for the rest of their life. Young guys are the ones to suffer more.

Active surveillance is very appropriated to cases like yours. AS doesn't mean to give up with treatment but to postpone it till such becomes required or till the time one finds it more convenient. This is a military-like regimen of cautionary tests and procedures supervising the bandit. Not everyone manages to sleep with the enemy in the same bed every night.
It seems that you have easy access to medical care so that I advise you to obtain second opinions on everything. You need to file all retrieved data as these become important pieces in the puzzle as you proceed.

Best wishes for success.

VG

Scumcrode
Posts: 15
Joined: Mar 2017

Thanks for the feedback. You and this forum have been extremely helpful in my planning. So much information in one place! I find the Fox Chase statement to be out of line with reality from what I'm reading here. With my lack of family history and fairly low PSA and 3+3 Gleason score I at least feel a lot more comfortable with my decision to use AS for at least 6-12 months while I pursue the further testing recommended here. Some very specific "gold standard" tests/procedures and resources have been mentioned here. Again, a great help in planning and thanks again! 

MEtoAZ
Posts: 37
Joined: Feb 2016

I would concur with many on the approach of Active Surveillance as you seem like a great candidate for that.  I am surprised that there was a biopsy performed with a PSA of 2.49 as that does not seem like much of a red flag but perhaps they are lowering the number.  I was 52 and had a PSA of 4.9 when they did my first biopsy. 

I did not choose AS as I had 2 out 12 cores positive, with one 3+3 and one 3+4 and 2 "abnormal" cores that were not yet cancerous and decided not to wait.  I did not choose surgery as even though most younger guys tend to recover without longer term debilitating effects, the types of problems that can occur from surgery were not things I wanted to experience for 30+ years and so I went the Cyberknife route instead.  To date, all is good, my PSA is currently at .7 and should continue to moderate on its way down to near zero ovr the coming 18 months or so.  My radiologist is pleased with progression to date and no problems/complications thus far post-Cyberknife treatment.

Clevelandguy
Posts: 410
Joined: Jun 2015

Hi,

You can go the active surveillance route for a while but the cancer is not going to go away, it will only get worse.  If you were in your 80's then active surveillance might work but your not.  This is just my opinion but why let the cancer grow?  No one that I know of want's to get treated for PCa, but IMHO there is not choice, your going to have to deal with the beast sometime in the future.  As far as I am concerned this is one thing you don't want growing inside of you. 

Dave 3+4

hopeful and opt...
Posts: 2218
Joined: Apr 2009

 

There have been studies that show thatapproximately 70 percent of  low volume, a llow aggressive prostate cancer does not grow, and men die with prostate cancer, not because. Addditionally there were studies where population autopsies have been performed, and many of these men, were found to have prostate cancer, and died with the disease without experiencing any of the severe side effects of active treatment

Major centers of excellence such as John Hopkins treat men with Active Surveillance. Active Surveillance is consider a valid and to add a smart treatment choice, that is why this is my choice..nine years so far....I plan to do this for the rest of my life if I can, otherwise, studies have shown that I would still be able to make the same choice as I would have had at diagnosis.

Scumcrode
Posts: 15
Joined: Mar 2017

Yeah its pretty disconcerting that the PSA level doesn't necessarily reliably track the Cancer growth. When I picture being told a few years from now that it's spread, even under AS (because it does happen), I picture asking myself why? Because I wanted a full erection and full continence? I'm wondering how selfish that will look (and feel) to both me and my little kids. I understand the other side of the issue though, but not many 47 year olds have a newborn and a 2 year old. I'm not planning on AS long.  

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3207
Joined: May 2012

Scrum,

Obviously, AS is not an easy choice to make.  It is not for worry-warts like myself, guys who can't stop thinking of potential bad scenarios.  The data does support AS as viable and safe with some cases. You just have to decide if you are that guy. I was not.

I have a friend who was diagnosed about 12 years ago, at aroound age 60. He went on AS, and is 73 now, and recent biopsies could not detect any cancer in any core.  Almost certainly, this is rare, but possible. 

max

hopeful and opt...
Posts: 2218
Joined: Apr 2009

I'm in my 9th year now

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3207
Joined: May 2012

And those 9 years cause every man here joy.  Certainly it does me.

ASAdvocate
Posts: 110
Joined: Apr 2017

Just joined this forum, but am a veteran of other PCa forums.

I have been in the Johns Hopkins AS program for eight years. Best decision possible for my G3+3 diagnosis. No regrets and no disease progression.

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