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mikedayton62
Posts: 22
Joined: Sep 2016

I received my diagnosis last month (on my birthday of all days). PSA = 12, Gleason = 6 in 1 of 12 biopsy samples. The urologist said that there is an 8mm tumor completely contained within the prostate. He recommended three alternative treatments:

1. Robot Assisted Laproscopic Prostatectomy (total removal of the prostate). He said his partner does these, and has a lot of experience.

2. External Radiation - Eight weeks, five days per week of targeted radiation treatments.

3. Internal radiation ("seeds").

 

I'm 54 years old and otherwise in good health. I would appreciate if anyone could provide advice or tell of their experiences with any one of these treatments. My urologist told us that all three have similar chances of successfully eliminating the cancer, and he expects that I will likely not have a recurrence afterward.

A personal note - my wife lost her father to lung cancer in 2007 - on my birthday. To spare her more grief, I might need to get a new birthday. haha

Old-timer's picture
Old-timer
Posts: 196
Joined: Apr 2011

You are a newbie, I'm a 25-year prostate cancer survivor. That does not mean that I know answers, and I do not intend to tell you what you should do. Just a few thoughts now; perhaps more later.

Sorry you must be here--but welcome. This is a good place to get encouragement and informtion. Your numbers suggest that you have time to learn about prostate cancer and your choices for treatment. You are 11 years younger than I was when I began this journey. Likely, this makes a huge difference.

The major thought I have at this time: don't make a hasty decision regarding a treatment choice. One other thought of encouragement: keep your spirits as high as possible.

Old-timer (Jerry)

mikedayton62
Posts: 22
Joined: Sep 2016

Thank you Jerry. I appreciate the welcome and the encouragement.

MEtoAZ
Posts: 37
Joined: Feb 2016

Hi Mike, Sorry to hear about your diagnosis.  The good news is that with a Gleason of 6 and only 1 core being positive, you have a ton of options AND a lot of time to sort things out. 

I was diagnosed in January of this year with 2 cores, one gleason of 6 and one gleason of 7 (3+4).  After reviewing histories of others on this and other forums, I opted on doing Cyberkhife radiation instead of surgery or regular external beam IMRT radiation.  Cyberknife requires only 4-5 treatments of 45 minutes each and is much more focused than IMRT external radiation.  An overview of radiation types here - https://www.cancer.gov/about-cancer/treatment/types/radiation-therapy/radiation-fact-sheet

I would not recommend you get IMRT radiation (the 8 weeks option) as at your age, there is a higher likeihood that you could have problems later on over time as IMRT doesn't just radiate the tumor, but everything around it gets a dose as well.  I suspect if you talk to more radiation oncologists who to IMRT that they will tell you the same thing, the two I spoke with told me that at 52, they would recommend surgery as long as cancer was contained in the prostate.

The seeds are another option, but when I compared that to Cyberknife, I felt it was a better course, at least for me.  That depends in part of if Cyberknife is avaialble where you live, I live in Phoenix-area.

As urologists diagnose Prostate cancer and are the ones who would perform a prostatectomy, that is the most common option, especially for younger patients.  

I opted against surgery after visiting this and other forums and seeing the side-effects of surgery and deciding that at 52, I didn't want to risk having incontinence and/or erectile dysfunction for the rest of my life.  Note, that isn't the "normal" outcome, but it happens and while the doctors downplay it, they certainly cannot guarentee the outcome.

Spend some time evaluating your options and talk to mulitple doctors, in the end, this is a decision you and your wife need to be comfortable with the decision.  You can also pursue active survelliance as well and wait for a period of time and see how slow it is progressing but with a positive identificaiton of the location and size of tumor, I would be prone to just deal with it but it is certainly not something you have to do immediately. 

Good luck and keep us posted and jlet me know if you have any other questions about my experience or the process in general.  I am sure you will have several other chipping in as well.  While any cancer diagnosis creates a ton of anxiety, this is one that at this early stage, is deifnately beatable!

mikedayton62
Posts: 22
Joined: Sep 2016

Thank you for your response and encouragement. Yes, this has caused a LOT of anxiety, especially with my wife. I have an appointment next week with a radiation oncologist. I will definitely ask about the CyberKnife.

MEtoAZ
Posts: 37
Joined: Feb 2016

Hi Mike, one thing I may have neglected to mention, if the oncologist you see does not do Cyberknife, it is very likely that they will either play dumb or not recommend it.  You are going to get exposed to the "marketing" side of disease management where the recommendations will mirror closely what the doctor specializes in, usually as the sole recommendation.  This was likely one of the reasons for the later recommendation by Max of more doctors just adds confusion.  He is not incorrect, but I recommend you filter through the noise.  Also I noticed a comment that once you radiate, surgery is not an option.  That is another lie that the urologists use.  Most urologists lack the skill required to remove a radiated prostate.  There is a more solective list of doctors who can perform such a surgery but it absolutely can and has been done.  

If you are going to check out Cyberknife, you likely need to find someone who does it and yes, they will have their marketing jazz like all the others but, check out the various forums on men who have done Cyberknife to get their experience. 

Surgery will work and likely the side effects will be temporary BUT not guarenteed and you will have to work at restoring "function".. take a look at Amazon on books related to restoring sexual function after surgery.. wake up call for me after reading a couple of them.

VascodaGama's picture
VascodaGama
Posts: 2938
Joined: Nov 2010

Mike

I would suggest you to read about the treatments risks and side effects. Many of us suffer more from these effects than the cancer it self, and some of these risks can become permanent nightmares. I wonder what lead you to do the biopsy. Was there any symptom or was it just the high PSA?

Do you have more PSA tests previous to the one of 12.0 ng/ml? What about image studies, have you done any CT/MRI/PET scan or Bone scan? Why is the urologist so sure that the 8mm tumor is completely contained within the prostate?

One core out of 12 with Gleason 6 is indicative of low risk. With these results you could choose Active Surveillance instead of a radical therapy. I would suggest you to read details on the matter too. In any case I would be looking for second opinions in other specialists not from the same group of your doctor, even including a second look into the biopsy slides by a PCa pathologist (JH laboratory, etc). 

I believe you do not need to rush. Do your researches before commiting.

Welcome to the board.

VG 

 

mikedayton62
Posts: 22
Joined: Sep 2016

Thank you for the advice. My wife and I have been doing a lot of research, and I have an appointment with a radiation oncologist tomorrow.

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

Vasco gave good advice.

He asked excellent questions.

Do you have a history of PSA tests. Did you have any other diagnostic tests?

Except for the high PSA you may be a candidate for Active Surveillance. I would interview an expert in Active Surveillance, hopefully at a major institution of excellence.......one that can provide a mulitiparametric MRI with a three dimenisional biopsy machine such as an Artemis.

Not saying that you qualify but I have been in an Active Surveillance program for almost 8 years now.

.....................

Generally surgery has the greatest side effects from active treatment, to include but not limited to erectile dysfunction and incontinence. If you choose an active treatment a type of radiation such as SBRT would have less side effects

As others have mentioned, take your time to make the best decision for you.

mikedayton62
Posts: 22
Joined: Sep 2016

I have had a PSA of 6 on two exams in the last 3 or so years. Both times the urologist put me on antibiotics. When I went to my GP for my annual physical in June, my PSA was 10, but I had not been celibate, so two weeks later the urologist tested it again. I was celibate for a week and was certain that my PSA would go back down, but was shocked when it came back at 12. DRE at GP and the urologist did not reveal anything. Both said it felt normal.

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

 

 

There is an MRI scan for prostate cancer that is very effective in indicating if there is any nodule involvement, if there is involvement in one or two lobes, will show size of prostate, may show evidence of extracapular extension, will stage the disease. An MRI with the 3.0 Tesla magnet, is the gold standard. There are certain major hospitals that have MRI machines with a 3.0 Tesla magnet. 

In my layman’s opinion it is advisable to have such a test before any treatment. If the cancer is outside the prostate you may wish to reconsider a treatment decision.

Basically the MRI provides finer resolution than the bone and cat scans, and is more effective in determining if the cancer is outside the prostate.

An 3T MRI will do the job for you.

here are some studies from pubmed about mri's and a high tech pet scan

multiparametric mri t3 

The impact of Magnetic Resonance Imaging on prediction of extraprostatic extension and prostatectomy outcome in low-, intermediate- and high-risk Prostate Cancer Patients. Try to find a standard.

http://www.ncbi.nlm.nih.gov/pubmed/26154571

The impact of multiparametric pelvic magnetic resonance imaging on risk stratification in patients with localized prostate cancer.

http://www.ncbi.nlm.nih.gov/pubmed/24785987

Preoperative 3-Tesla multiparametric endorectal magnetic resonance imaging findings and the odds of upgrading and upstaging at radical prostatectomy in men with clinically localized prostate cancer.
http://www.ncbi.nlm.nih.gov/pubmed/23040223

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

Mike,

A minor point perhaps, but worth mentioning: doctors differ on how much sex prior to a PSA draw will affect the results.

Some think it is significant, others think not. There are studies done to support both opinions.  My surgeon believes that the affect is very minor, and will not dramatically alter anything.  My GP is of the same opinion, and even told me once years ago that he felt my worry on the subject was "foundationless."

Half of all newly-diagnosed PCa patients have completely normal DREs. This makes sense, since a DRE only feels the back of the gland, leaving the other half unfelt.  With Stage II involvement, all of my DREs were totally normal.

Continuing to wish you an easy treatment experience and fast cure,

max

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

Welcome, Mike.

My case was quite similiar to yours: I was 58, Gleason 6, one core of 12 positive at 5% involvement. I never had a PSA of over 4.6, however.  A PSA of over 10 can sometimes countersuggest seeding according to some sources.  You will find that oncologists are a lot like lawyers: no two will have identical takes on a situation, although each take is reasonable.

After a lot of reading and consultation with three oncologists I chose DaVinci (robotic) removal.  For early stage, first-line treatment of PCa in the US today, right at 50% of all men choose surgery, the other half choose some form of radiation .  Both modalities have statistically identical cure rates.  It really comes down to which doctors you most feel comfortable with, and your priorities.  The more I studied, the less certain I was about what to do. PCa has more sound alternatives than most other cancers, a good thing, of course.

The pathologist's analysis of the gland after it was removed showed more involvement than the biopsy had suggested -- also not uncommon, I have read.  I was a Stage II at the time, not Stage I.

For what it is worth, 2.5 years later, I have normal continence, and sex about as good as prior to surgery, although once the gland is removed, ejaculate fluid is a thing of the past (orgasm and ejaculation are actually distinct phenomenon, I learned).  'So what' is my reaction; I'm a 60 year old man, not a surfer at Malibu.  Actually, my continence post surgery is much better than prior to surgery, since I had been dealing with significant BPH for a few years. Go figure.,.

Bless your decision. With your numbers, you should achieve a cure with relative ease.

max

mikedayton62
Posts: 22
Joined: Sep 2016

Thank you for relating your experiences. I neglected to mention that my one positive core had 35% involvement. As of this moment my wife and I are leaning toward robotic removal, but will not make a decision until after my appointment with a radiation oncologist tomorrow. I understand that surgery and radiation have similar chances of a positive outcome with regards to eliminating the cancer, and that surgery seems to have a higher chance of negative side effects. One side effect not mentioned, however, is the long term anxiety of recurence if we opt to leave the prostate in place. Intellectually we understand that there really is no difference in the odds, but from an emotional standpoint, we would have more peace of mind if it were removed.

My urologist's partner does all of the robotic surgeries, and he has tons of experience, so I'm optimistic about the outcome if we opt for that route.

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

You are correct on all of the particulars, Mike.

I had a career in submarines, in which there is a manditory backup for every system.  Surgery has RT as a backup, and surgery also has the advantage of, after the pathologist has the gland on the table, knowing EXACTLY what the situation was in, and outside, the gland.  No scan matches the pathologist cutting slices, and putting it under a microscope.  Yes:  surgery can (rarely) be done after initial radiation, and even re-application after radiation is sometimes possible, but both of these options are rarely suggested by doctors, and are problematic  (the gland become fiberous after radiation, similiar to a sponge that has been put in a microwave).

Virtually all surgeons today do erectile nerve sparring, when possible.  But, if the nerves were determined to need removal during surgery, it also means that they would have needed irradiation.  Recovery of potency, even with nerve sparring, will take months in most cases, if not a year or more.

Good luck.  As I mentioned before: The more doctors I met, the MORE confusing it got, not less.

Take your time, as many have suggested.

max

CC52
Posts: 101
Joined: Nov 2013

Mike,

Welcome to the board. Please...as VG says, your numbers would indicate several options, the first being Actice Surveillance (AS). AS candidates usually have no more than 2 of 12 positive samples, and with your Gleason 6, AS seems a real possibility. That's what I hoped for when I got the news, but I had 3 of 18 positive with a 3+4=7 Gleason. At 61, I decided the time was right for treatment.

After about a year of research, I decided on CyberKnife (SBRT). Some advance work, including placement of gold markers (fiducials) in my prostate prior to receiving 5 treatments over 1 1/2 weeks. Looking back, it was no big deal. I'm celebrating two years since completing my treatments as I write this, and while I have had some side-effects for the most part I feel I'm much better off for having chosen SBRT than any surgical option. Of course, we all have to decide what's best for us.

Here is a thread I began after my treatment for those considering CyberKnife: http://csn.cancer.org/node/292915.  

All the best as you proceed.

 

mikedayton62
Posts: 22
Joined: Sep 2016

Thank you for the encouragement. I fully intend to ask about CyberKnife at my oncologist appointment tomorrow.

Swingshiftworker
Posts: 1013
Joined: Mar 2010

Mike: 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 what 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 had 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!

 

 

Joe B 70
Posts: 3
Joined: Sep 2016

It sounds to me like you can expect a long, cancer free life after treatment. 

I had four cells involved, two 6's and two 7's with a PSA of 4.8. I chose RT. But I am 71 years old. If I was 54 I would have found the best surgeon I could and gone for prostate removal.

My urologist and RT Oncologist both said if I was younger, and had a longer life expectancy, surguery would be their recomendation. Mainly because after RT, if the cancer returns, surgery on the protsate is not done because of scare tissue. That limits your options down the road.

If you do chose RT, I would find a location that has Image guided external radiation systems or other newer methods of delivering the external radiation. Also, I would look for a facility that did a space-oar type of implant prior to radiation to protect the rectem from damage. 

 

 

Swingshiftworker
Posts: 1013
Joined: Mar 2010

It is often suggested that surgery is the better choice "because" you cannot resort to surgery after RT.  Frankly, this argument is irrelevant. 

I have heard of no one on this forum who has ever had a failed RT.  However, even if that occured, the patient would not need resort to surgery BECAUSE further radiation treatment after a failed RT is the better option. 

However, I can't count the number of men who have reported here that they had to resort to RT and hormone treatment as a result of a FAILED surgery.  So, the whole notion that one should choose surgery to increase you future treatment options is simply BOGUS!!!

hunter49
Posts: 210
Joined: Oct 2011

Hey man welcome to the party.  Sorry you got an invite.  I was 49 had a PSA 4.1  biopsy 1 of 15 posative Gleason 3+4 PNI present.  When I had surgery I was up graded to a 4 +3 and it was in both sides much more than biopsy showed and was luckily contained.  No Seminal or lymph nodes with any signs.  My first thought is with a PSA 12 you have more going on.  Was there a lot of BPH present, any idea of the prostate size?  A PSA of 12 is high for your dignosis .  At a young age as we are both 54 2 things I believe firmly.  First remove it, get it out and see what you are actually dealing with.  Second, nobody can ever predict re-occurences. I have 3 friends all good outcomes now after 5, 5  and 4 years all are getting radiation for slavage treatment.  You need to go to a good oncologist and if you do surgery go to a place that specializesin it.  MAke sure the doctor has done hinreds of them at least.  Good luck man and stay posative. 

Will Doran
Posts: 207
Joined: Sep 2015

Mike,

Sorry to hear of your diagnosis.  I was diagnosed in August 2013, with a PSA fo 69, Gleason 7 and I had no symptoms.  Doctors sent me to Chemo,  Radiation Oncologists as well as Surgeon to make my decision.  I decided to have the surgery.  It was good thing, since I had a birth defect, where my prostate was adhered to my bladder.  Thus the Radioactive seeds could not have been place where they needed to be.  My post surgery results came out as me being a Stage pT3bN1. One small spot in a lymph node.   My doctors told me they were going to be aggressive and they were.  I was treated as a Stage 4 and had two years of Lupron and 8 weeks of radiation after the surgery.  So far, after three years, my PSA is considered undetectable.  It's been a rough three years, but it's getting better.  They had my testosterone knocked down to 17.  Normal is 250 - 1,100.  My "T" levels are back up to 320 at this point.  That part of this was rough.

All of our cases are different, so what has worked for me will not be what others would do or have done.  Make sure a research all the options and side effects of treatments and decided what makes the most sense for your situation.  Think about quality of life.  This is a hard battle, but there is hope.

Fight like the devil

Love, Peace and God Bless

Will

desperate for hope
Posts: 44
Joined: Oct 2016

HI Will, 

Thanks for sharing. When did you begin the Lupron? Also, how many weeks after surgery did you begin the radiation?  Did you have extracapsular extension or SVI? We are thinking of the same 3 treatments. 

Clevelandguy
Posts: 408
Joined: Jun 2015

Hi,

I had my prostate removed two years ago via robotic surgery.  My doctor said it's always good to have a backup with that being radiation.  From what I was told the radiation makes it harder for the surgeon to remove the prostate after radiation tratments.  I have just a little stress leakage(one pad per day) and no ED(but it took took years for me to gain a good erection back).  I guess its up to you to decide after talking with your surgeon and radiologist.  Look around, ask questions, and get your doctors opinions.

Dave

3+4

Swingshiftworker
Posts: 1013
Joined: Mar 2010

You DO NOT need to remove the prostate after a failed radiation treatment.  You can just hit it again w/radiation.   It is and has always been an irrelevant argument against the use of radiation to treatment PCa.

Clevelandguy
Posts: 408
Joined: Jun 2015

Hitting whats left of your prostate tissue with more radiation can only degrade everything in the whole treatment area(bladder, bowel, ect) .  Each person must make up there own mind on what threatment options to choose.  Some people will choose surgery, some will choose radiation.  If you look at all the message board posts you will find out about how successful the various types of treatment are.  I felt that surgery followed by radiaiton if needed was my best option cosidering my PCA and that it was all contained inside the prostate.  If its outside the prostate surgery may not be the best answer, you need to talk with your doctors(all doctors) to get your best treatment.  I can only speak from my experience, each person has their own path to follow.  This board did help me reviewing all of the various treatments for PCA vs long & short term side effects.

 

Dave

bob33462
Posts: 78
Joined: Feb 2016

Mike -

Please don't rush into a fast decision. Go and see more Urologists and Radiation Oncologists to get more opinions. Learn all you can about the disease.

As mentioned above you may be a good candidate for active survelliance. However, if you want to cure it, surgery and radiation have about the same outcomes.

I had surgery, but would have had radiation if not for my voiding issues.

Best wishes!

Bob

Old-timer's picture
Old-timer
Posts: 196
Joined: Apr 2011

I notice that you have taken part in an active discussion on this board with several people. I trust that this has been helpful and that things are going well with you. I now think it might be worthwhile for me to give you an outline of what has happnd during my 25-year sojourn with what Vasco calls "the bandit." Here it is:

 July 1991, at age 65: PSA 4.0, biopsy Gleason 3+4 = 7.0.

September 1991: radical prostatectomy.

December 1991 through 2003: PSA .0.

Early 2004: PSA 0.2. Then at 3-month intervals my PSA rose: 0.39, 0.61, 1.11.

Feb.-Mar. 2004. Radiation sessions (35).

July 2004: PSA 1.20. (Informed that radiation was not successful.)

October 2004 to June 2008. PSA see-sawed a bit while gradually rising to 20.4.

June 2008. Began hormone therapy.

September 2008 to October 2015. PSA undetectable <0.1.

September 2016. PSA 0.1. Urologist says this is detectable. but not a cause for concern. Check it again next year.

 I am 90, feeling good, remaining relatively active, and enjoying life.

 Good luck to you.

 Jerry (Old-timer)

mikedayton62
Posts: 22
Joined: Sep 2016

And I am also glad to hear thet your recurrence responded to the hormone therapy. I think that my wife and I are both leaning toward the robot assisted laproscopic prostatectomy. I have read that RALP and brachytherapy have similar success rates, but for purely emotional reasons we both will feel better if the tumor is gone from my body. My urologist told me that his partner does all of the RALP's, and he has done a zillion of them. I also have a cousin who is a surgical nurse, and she told me if it were her husband, she would push for prostatectomy all the way. She told me she takes care of these patients every day and in general they do really well.

Old-timer's picture
Old-timer
Posts: 196
Joined: Apr 2011

In 1991 my choice was prostatectomy or radiation. There was no discussion board and, frankly, I was ignorant about what I was up against. I knew I wanted the thing out. I chose surgery because the urologist had better bedside manners than the oncologist! Joking aside, I am satisfied with the choice I made. And I am exceedingly happy about the 25 years of good life I have enjoyed as a survivor.

You young folks have more options from which to choose. And with your "moderate" readings, you have ample time to study, discuss, analyze, and select. The journey is a challenge but bearable.

Personally, I claim that my life in old-age is richer as a result of having to cope with "the bandit."

Best of luck to you.

Old-timer (Jerry)

CowboyBob
Posts: 31
Joined: Oct 2013

Each PCa patient approaches their treatment decisions from their own personal perspective. However, everytime I hear that someone is leaning toward surgery to "get the prostate cancer out of their body" I cringe.  The goal of radiation therapy is to remove the cancer from your body, just like surgery. They are equally effective in removing cancer confined to the prostate. So basing a decision for surgery with this rationale is illogical.

My father's course can be instructive. He had the same cut it out attitude. He underwent robotic assisted prostatectomy, required radiation anyway and is still dealing with the resultant incontinence and ED. 

Please don't make any decision from an emotional standpoint. Get the facts. Take your time to understand the different options. There is no rush to make a decision at this point. And remember, that to a man with a hammer, a lot of things look like nails that need pounding. Urologists are going to tend to recommend surgery, rad oncologists radiation.

tonycue
Posts: 39
Joined: Aug 2016

 

 I read this thread with interest....I think that the surgery vs Radiation argument will just keep rolling on....I think it depends on your personality type as to which option you might favour (assuming you have the option)....Each comes with their own side effects and I'm sure that for every person who has a "horror story" with surgery, there'll be someone else who says it "was a breeze".....likewise with radiation...If you have a large prostate that is causing you grief anyway then the natural reaction would be to get rid of it with surgery....Surgery of course has incontinence and impotence issues, but Rads also have impotence issues (although usually later on) plus bowel incontinence. Plus there is always the old argument that you can have surgery before radiation but not Vice versa.....(although some will argue this is not the case). I'm sure you are aware that with surgery the subsequent PSA readings will at least give you an idea of how you are doing, whereas with radiation you can get the dreaded radiation "bounce" which can frighten the "bejesus" out of a person.....At the end of the day it is down to the individual to do as much homework as possible ....Fortunately in these days of the internet there is so much more info available to sufferers .....How on earth did people do their research 20 years ago??

Clevelandguy
Posts: 408
Joined: Jun 2015

+1  Good post Tonycue

tonycue
Posts: 39
Joined: Aug 2016

Hi Mikedayton, noticed your post and thought I'd ask a question....I am awaiting results of a saturation template biopsy because of a "something" seen on a 3T MRI scan.....I was under the impression that any cancer that showed up on MRI had to be "clinically significant" ie G7 or above....could you give me more details re your G6 please....I'm currently sweating out a 2 week wait

     Thanks in advance

         Tony

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

The suspicious tumor found can be non cancerous.

If cancer is found, it can be any Gleason level.

Also please note, not all radiologists contain enough expertise to read the MRI correctly.....so it is entirely possible that the radiologist who read your MRI did not read the MRI correctly..............

mikedayton62
Posts: 22
Joined: Sep 2016

I believe that the MRI and the Gleason score indicate two different things. The MRI can see the size of a tumor, but the Gleason score is actually an estimate of how aggressive the cancer is, how quickly it will spread, and how aggressive the treatment plan should be. So in my case it appears that I have an 8mm tumor (from the MRI) comprised of cancer cells that were rated Gleason 6 under the microscope (from the biopsy), meaning that it is slow growing, giving my wife and me time to make a treatment decision. With a tumor that appears to be wholly contained in the prostate, and a Gleason 6, it is highly likely that no cancer cells have made their way out of the prostate yet. In addition to this, there are a number of other things factoring into our decision between Brachytherapy and Robot Assisted Laproscopic Prostatectomy:

1. We have ruled out AS due to my age and relatively good health.

1a. My PSA has doubled since last year (6 to 12). This is another factor that leads us to rule out AS.

2. The argument is still out as to which treatment has better long term non-recurrence results. Based on what I have found, this ranges from a draw to a slight advantage for the Brachytherapy.

3. Immediate side effects are probably worse for the RALP, but long term are worse for the Brachytherapy.

3a. I recently spoke to a friend who is still recovering from open prostatectomy. He is very pleased with the result.

4. Should we opt for RALP, the urologist who will perform the procedure has done it many hundreds, if not thousands of times, thus improving the chances of a positive outcome with regard to side effects.

5. Emotional concerns - definitely a large factor in our decision, because I will be living as a cancer survivor, and I want a few unknowns as possible into the future, and I would like to live those years with my wife at my side, not suffering from her own fears. With the RALP, the side effects will be immediately apparent, but also very likely treatable, and the only real unknown going forward is the chance of my PSA going up again later on. Given my numbers, this probability is quite low, but should this happen, there will be treatment options. With the brachtherapy, however, there could be side effects that might not show up for a number of years. Because of this, both of us are leaning toward RALP.

We are awaiting one final piece of advice before making our decision. Through the health plan provided by my employer, we have a service called Expert Medical Opinion. With this program, three separate doctors look at my records and give a report. Once we have their opinions, we will proceed with our chosen treatment.

Sorry for getting long winded, but I hope I was able to at least partially answer your question.

tonycue
Posts: 39
Joined: Aug 2016

hi Mike, thank you for replying, feel free to be as "long winded" as you wish.....Some of my posts have been small novels.....I have a small lesion which has shown up on 3TMRI hence my question....My first TRUS biopsy came up negative, so now I've just had a template biopsy....

whatever route you choose I wish you well

 Best wishes.  Tony

MEtoAZ
Posts: 37
Joined: Feb 2016

Good luck with your next steps!

Just a little point on rad choices.  Brachytherapy involves inserting radiative seeds into the prostate.  Prior to Cyber-knife, it was probably the most preferrable non-surgical option (even Andy Grove chose that path - his story was in Fortune Magazine here http://www.phoenix5.org/articles/Fortune96Grove.html .  It works, but as I younger guy, I wouldn't want to go that route as it will likely cause some downstream complications over time.  Cyberknife is short-term radiation performed in 4-5 45 minute treatments and you are done.

I do not understand all the comments about bowel problems that I read in this thread as it relates to "radiation".  There are numerous radiation options so for those who continue to lump all radiation in the same basket of "issues", please get your facts straight or at least expand your knolwedge beyond what your Uroligist will share to get your business.  Cyberknife is sub-mm precision, is does not impact the bowels or the bladder.  It doesn't lead to immediate incontinence or ED.  It has a 10+ year track record and results that are on par with the best options including surgery for those with early-stage cancer and a normal sized prostate.  I admit complete ignorance for more advance cancer or enlarged prostates. I did not have either issue thankfully. 

I chose CK because I didn't like the long-term impact of surgery.  Surgery is what most men are steered to unless they do their own research, that doesn't mean it is the best choice, just the one urologists want you to take.  I concluded that I did not want to have some form of leakage the rest of my life and years of ED challenges at 52 years of age if there was a better alternative that provided similar results without those side effects.  CK gave me an option to avoid those side effects.  That was my decision, I certainly respect others in their choices.

 

tonycue
Posts: 39
Joined: Aug 2016

Hi H&O,

I didn't mean to Hijack Mike Daytons thread, but he did state that he had been diagnosed G6 and that his tumour had shown up on MRI.....Since being told I had a suspicious PIRADS 4 lesion I have read the PIRADS protocol from cover to cover and was under the impression that only "clinically significant" cancer will show up on an MRI. I was interested in Mikes post for that reason (I'm just looking for a loophole here :-) )....I realise that scans can be ambiguous and that radiologists are only human, but after all as someone who is on AS you are staking your health  on their expertise, so I assume that you do have quite a bit of faith in scans and their interpretation

 regards.  Tony

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

I am treated at a high volume center of excellence, where the radiologists are experts and follow the correct protocol for interpretation. Many times at other locations, the radiologist do not follow the correct protocol.

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

Mike,

You posted a very clear and well-written summation of where your decision-making process is at. You are in the ponder and decide moment now, awaiting the review panel's comments.

I would question only one statement that you made, and that regards Brachytherapy.

Dr. Peter Scardino, Chief of Surgery at Sloan-Kettering CC in NYC, in his 2010 edition of his The Prostate Book, writes that Brachytherapy is not suited (per uriological conventions) for a man with either of the following: (1) A single Gleason hit of above a 4 (or composite Gleason over 6) or (2) a PSA of 10 or above. He does not specify a vector limit, but your doubling rate is significant.  For these same reasons, A/S would indeed be a bad choice, so you were correct for eliminating that as an option.  Interestingly, Dr. Scardino preferrs open surgery over DaVinci, for reasons that he discusses elsewhere in the book. He does not "dislike" DaVinci I would note.

The book is available as regular-stock at Barnes and Noble, and any good library would have a copy.  The relevant pages are 345-357, and it gives an excellent summation of BT generally, if you do choose it.  What I liked about the book is that it lays out every modern treatment technique, and lists pros and cons for each.  Except for a few new drugs and some tweeking of Imaging technologies that have come on market since 2010, it is up-to-date.  And those drugs all pertain to HT and Stage IV treatments, which are irrelevant in your case.

I regard the remainder of your critique to be essentially perfect:  It is a toss-up (given your particulars) between RT and surgery as regards cure; open and robotic surgery, as regards cure, are also identical;  cure rate between IGRT and Cyberknife are identical.  And as you noted: side-effects post-surgery are immediate; side-effects post-radiation are usually less than in surgery, and delayed in manifesting.

max

DaVinci, Dec, 2014

mikedayton62
Posts: 22
Joined: Sep 2016

After many long talks with my wife, with doctors, and with friends, I have elected to pursue the Robot Assisted Laproscopic Prostatectomy. I have a consultation appointment with Dr. T. Brian Willard at Carolina Urology Partners, West Columbia SC. He will be the surgeon performing my RALP.

Does anyone here have any experience with Dr. Willard? I'd love to hear about it. He has a 4.4 of 5 star rating on healthgrades.com (https://www.healthgrades.com/physician/dr-thomas-willard-ydwx4) and his office tells me he has been doing RALP for five years, and has done hundreds of them.

 

Thank you in advance.

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

Mike,

Congrats on making a decision after much discussion, meeting numerous doctors, and reflection with your wife.  I hope it serves you very well.

I live just up I-26 from you in the SC Upstate area, not far below the NC line.

You already know this, but ensure that the surgeon plans erectile nerve sparing,and removes the seminal vesciles.   Both of these proceedures are virtually universal today in the US, when possible.

I found the pain in the recovery room to be worse than I anticipated, and I had bladder spasms, which made my bladder feel full, despite a cath in place. The N.P. said this was an uncommon side effect, but treatable with anti-spasmotic drugs. That sensation only lasted a few hours at most. I was walking the next mornng, and went home after only one night in the hospital.

You will wear a cath and bag for about one week afterward.  Any hint at an erection will take a minimum of a few months, although I have read accounts about spontaneous sex a few months later, I found them unbelievable and so outside the normal range as to ignore them.  TRIMIX, a self injection, had me having sex about three or four months later, and within a few months of that, Cialias worked well.  Today I do not even use Cialias at all, and things are working well.  But do expect some "down time" -- no pun intended.

I wore an adult diaper after the cath was removed for two days, and a pad/liner for a few months beyond that, which on average, was pretty fast continence.  I received Kegel exercise instructions prior to surgery, which are very helpful. Men have two urinary spincters at birth; the RP will remove one of these, leaving only the other.  I do not mean to submit "TMI," ("Too much information") but I know these are the real-life questions that guys have.

There are no perfect choices, just several very good ones.  Bless your progress and the pathologist's report following surgery,

max

Will Doran
Posts: 207
Joined: Sep 2015

Mike,

Congratulatiosn on making your decision.  It's tough, I know.  Best of luck for all the sucess in the world and God Speed to you doctors. I pray that you will have the sucess that I have had, to this point, by having the Robotic Surgery.

Love, Peace and God Bless

Will

VascodaGama's picture
VascodaGama
Posts: 2938
Joined: Nov 2010

Good news indeed. I hope everything goes smoothly and that you recuperate the soonest. ED is a matter of concern so that try being "active" (all forms) to have everything back to normalcy.
The PSA two weeks after surgery is already reliable so that you can verify success and have peace of mind.

Best,

VG

Old Salt
Posts: 720
Joined: Aug 2014

You have done the homework and gotten an excellent grade (from all of us) for thinking the issue through.

Best wishes for an uneventful recovery from the procedure.

As you know, you will get a detailed pathology report of your 'missing organ'.

Igarza
Posts: 5
Joined: Oct 2016

Hi Mike, I just wanted to wish you well.  I just started a new post....but your story and age are very similar to mine.  And you, and all the goods folks out there have enabled me to come to a better understanding of formulating a decision.  From what I have learned, the skill of the physician is key, and since your doc has done them quite a bit, I am sure it will be successful.  I am going to MD Anderson in Houston in early November...and like you...at least right now I am leaning towards surgery...but will not finalize my decision until after my visit.  Again...god bless and good luck.

Josephg
Posts: 146
Joined: Jan 2013

I, too, wish you good luck and the best of outcomes, as you start a new milestone on your PCa journey.  You asked questions, listened to the answers, your performed your own research, you asked more questions, and finally you made your own informed decistion.  Nobody can ask you for more.

Keep us up to date on your ongoing experiences, and if you ask, we will continuue to provide you with our 'lay' opinions, based upon our own PCa journeys and accumulated research.

Old-timer's picture
Old-timer
Posts: 196
Joined: Apr 2011

Mike: I concur with your decision, I wish you luck, and I expect that all will go well for you and your bride.

I have no knowledge concerning doctors in SC. But I must tell you that I enjoyed spending several days in Columbia and nearby counties during the 1990s digging up family roots.

Old-timer "Jerry"

mikedayton62
Posts: 22
Joined: Sep 2016

Sorry I haven't been here in a while. I had my prostate removed by RALP on October 26, 2016. A week later we got the pathology report back.

As a reminder, my pre-op indicators were:

DRE normal, PSA 12.04, PSA one year prior was 6, Gleason 6, one core of 12 positive at 35%, Prolaris score was +3.3(!)

Based on the pathology report, my prostate weighed 57 grams, 30% of it was cancerous, the cancer was bilateral, Gleason was 3+4=7 with tertiary Gleason 5 present. The margins were negative (this is an indication that I am likely cancer free now). I will receive the results of my first post-op PSA on December 5.

As expected, I am experiencing 100% ED and significant incontinence. I know it is way too soon for the ED to begin to subside, and with the incontinence I have good days and bad days, but the general trend seems to be positive.

My surgeon (who is the partner of my urologist, mentioned below) is keeping me out of work probably until December 5, but based on my longeivity with my employer and their very supportive short term disability policies, I will continue to receive full pay while I convalesce.

My wife was seriously concerned about the difference between the biopsy and pathology reports, specifically, how 6 of 6 cores on one side, and 5 of 6 on the other side can completely miss the cancer in a prostate that was 30% involved bilaterally. Our other concern was why my urologist never mentioned the 3.3 Prolaris score, which indicated a highly aggressive cancer, supported by the tertiary Gleason 5 from the pathology report. We feel like he had us make our treatment decision without all of the facts, especially the one pre-op indicator we had of a highly aggressive cancer. Luckily, we got this information from the free second opinion service provided with the insurance package from my employer. As of right now, my wife and I both like and trust the surgeon much more than his partner who was my original urologist. We are going to switch to him from now on.

I have seen a lot of discussion here and on other sites about the value of the PSA test, but as far as I am concerned, it saved my life.

Old-timer's picture
Old-timer
Posts: 196
Joined: Apr 2011

I just now noticed your November 20 update. Thank you for submitting it. As you might guess, I am sort of keeping tabs on your PC journey. It appears that things are working OK for you. From my experience, the ED and incontinence will continue to improve. I applaud your wife for her support. I am so thankful for my wife's loving companionship during 67 years of marriage and 25 years of PC survival.

May all of our years be brightened by glowing sunshine and glistening rainbows.

Old-timer (Jerry)

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