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Diagnosed with prostate cancer and worried!!!

John-Can
Posts: 13
Joined: May 2018

Dear all,

I was diagnosed with prostate cancer a few days ago and my urologist says, after introducing the results of the biopsy, that I need treatment. My last PSA was 5.76 and out of 12 cores, I have 6 cancerous cores. All are grade T2 and their Gleason scale score is 3+3=6. My urologist says all these cores are located on the right lobe of my prostate gland and they are confined to prostate gland. I requested a CT scan, MRI scan and bone scan to make sure that there is no spread, but the doctor says there is no need for MRI and bone scan and only CT scan is needed. I am extremely worried and confused because I don’t know what to choose for treatment, radical prostatectomy, radiotherapy (external beam, brachytherapy) or cryotherapy. Please help me, I want to hear your opinions. Any comment or advice will be highly appreciated.

 

Grinder
Posts: 442
Joined: Mar 2017

First John, let me say you are one of the lucky ones if you caught the PC while still confined to the prostate gland.

If you read some other recent posts, many guys did not catch the PC until it had escaped the capsule, or even metastasized. That greatly complicated their treatments and prognoses.

If you read many of these other posts and threads, you will find quite a controversy raging between AS Active Surveillance, Radical Prostatectomy including Open, Robotic and Nerve Sparing, Radiation in various forms, External Beam Radiation, Brachytherapy, Sterotactic Body Radiation Therapy, Radioactive seed implants, and ?

There are many treatment options available to you since you caught it early. I cannot speak for any of the other treatments except Davinci Robotic Nerve Sparing surgery in which incisions are cut into the abdomen and the robotic appendages remove the prostate. I was very successful for me, so of course I recommend it, but you may want to consult primarily with your doctor to determine which course of treatment you want to pursue... and also go back and read the many posts concerning treatment alternatives.

John-Can
Posts: 13
Joined: May 2018

Hi Grinder,

Thank you so much for your reply. Actually I'm scared of AS and may choose robotic surgery after I discuss that with my doctor.

hopeful and opt...
Posts: 2226
Joined: Apr 2009

I am sorry for your diagnosis.

First, about the biopsy, please let us know what the involvemnt of each of the cores that were positive, that is, the percent of the each core that was found to be positive? Any othe information presented in the pathology. PSA history? Any other diagnostic tests?

Your doctor is simply guessing when he says that the cancer did not escape the prostate. You will want a T3 MRI. This test can indicate if there is extracapsular extenstion, that is, if the cancer has escaped the prostate. The T3 MRI uses the most powerful magnet in clinical use and provides very good definition. The CT scan does not provide great definition.

The American Urological Association does not recommend a bone scan for men who have Gleason under 8 since it is very very unlikely that it has metasized to the bone.

You need to have a copy of all medical information pertaining to your case, so it will be available for discussion, and as you speak to various specialists.

We are here for you.

 

 

John-Can
Posts: 13
Joined: May 2018

Hi hopeful and opt,

Thank you so much for your reply. I did not get the biopsy report yet. I asked for a copy of the report and the hospital promised to send me one in a few weeks. So I have no ideal about the percentage of each positive core. My PSA was up and down since 2016 from 4.51 to 7.59 in January, 2018 then down to 5.76 in April 2018. I will ask my doctor for an MRI when I meet him next week.

MK1965
Posts: 179
Joined: Jun 2016

Welcome to forum no one wants to join.

From your post, you mentioned 6 of 12 positive cores with 3+3. Like H&O said, it would be good to know percentage in each core. If percentages are low then you really don’t  need to worry much.It is known that Gleson 6 does not metastasize so one less worry for you.

If you decide for treatment, all options are open. Take time and do your own research. Surgery is not always best option for Gleson 6.

You will hear all kind of input on surgery because this is heavily pro surgery forum. 

I did not see your age but since you cought it early, I assuse you are in your early fifties.

Take your time, no need to rush into anything.

MK

John-Can
Posts: 13
Joined: May 2018

Hi MK1965,

Thank you so much for your input. I have no idea about the percentage of each positive core. I just asked the hospital to send me a copy of the biopsy report. I have already decided for treatment and may choose robotic surgery or radiation therapy. As for my age, I'm 67.

VascodaGama's picture
VascodaGama
Posts: 3045
Joined: Nov 2010

John,

I wonder why your doctor did discarded important and better image exams for prostate cancer, giving preferences to something that is at the bottom of the list of exams, regarding capabilities in identifying cancer. Surely a surgeon eager to operate would prefer to have negative image results. Either he is from the old guard or he is not aware of the newer recommendations/guidelines provided by urological associations around the world.

CT is linked to many false negatives when diagnosing prostate cancer. PET scan is the latest and more specific in image exams and surely important in staging a PCa case. In your shoes I would give up the farce of a CT scan and go straight to the operating theater if you trust your doctor. Why bother with a scan if your mind is already set in a treatment as you comment to Grinder above. By norm, PCa patients receive firstly a clinical stage before deciding on a therapy.  

You have not tell us your age, but I recommend you to research on the consequences of any treatment, their risks and side effects before engaging in anything. Young fellas with long life expectancy have lot to lose in quality living and old fellows may give preferences to palliative treatments. You should get second opinions (starting with the diagnosis data) and only decide after consulting your family. Do things coordinately and timely without rushing.

Survivors in this forum can help you to understand the facts but you need to share mode details of your case.

Best wishes and luck in your journey.

VGama

lighterwood67's picture
lighterwood67
Posts: 219
Joined: Feb 2018

First let me say you are still John.  You are the same John you were yesterday with the exception of that you know you have PC.  You will weigh out a lot of treatment options.  Take your time.  Write down questions that you have for your medical folks.  The final decision is yours.  A lot of folks base that on quality of life and treatment options.  All options have their side effects.  Pretty much you will read the stories on this site to see what side effects folks had.  There are success stories and horror stories.  No 2 PC's are alike.  Wish you the best of luck on your journey.  Stay positve and keep in touch with your human side.  Do not let all the options overwhelm you.  Sometimes you can analyze to paralyze.  Good luck.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

Welcome to you, John-Can.

Lighterwoods put it so well. Prostate cancer (PCa) differs dramatically form most other cancers in having numerous treatment options. Many, perhaps most, other cancers have one preferred, first-line response. Lymphoma (which I have had) is like that: Treatment is chemo. Period. Chemo or nothing. Not a lot to discuss or talk about. And no arguments over side-effects. Live with the side-effects or die. Not complicated there either. Leukemia is the same way.  No arguments over radiation vs. surgery, or anything else.

"Analyze to paralyze."  In other words, worry over options until you can't do anything. That is a keeper, lighterwood !  I have seen it happen to guys here more than once.  Or, they make a choice and then second-guess what they did for life. No peace in their hearts, ever.  Don't be those guys.

Do your research, make a decision, and then go with it.  Often the best choice is simply the one that most fits you emotionally, the one that you just "feel good about."  And very often guys will state that they made a choice because of a doctor whom they liked, felt confident with.  It happens that at times the best surgeon or radiaton oncologist on earth is just a turd in personality. Only you can prioritize all of this and make it fit you and what you want.

Do not let the microscopic, technincal stuff overwhelm you. There is never a perfect choice, and no one size fits all.  And none of this comes with a warranty, no guarantees.  But your results sound like you have minimal, incipient disease, that should be readily beatable.

max

 

 

John-Can
Posts: 13
Joined: May 2018

Thanks a lot to everyone who answered.

I met my radiotherapy oncologist today and we discussed the risks, advantages and disadvantages of radiotherapy. I wanted to make sure that the cancer has not spread outside my prostate. He performed DRE on me and said it is impossible for a G6, PSA 5.7 cancer to have extra capsular extension. I asked for an MRI to confirm his opinion, but he said there is no need for that. He said my cancer is T2a. As for my N and M grades, he said the biopsy report doesn’t show that, but we don’t need it at this time. I also asked him about the effect of radiotherapy on cells and tissues (prostate, bladder, urethra, semen vesicle) and he said radiation stops cell division and I wonder when a cancer cell stops dividing and eventually dies, it is ok, but what about normal cells and what may happen if they all die?

 

I’m also not sure if an oncologist can decide that my prostate cancer is T2a by just performing DRE?

Is an MRI really NOT unnecessary for me at this time?

Best wishes for all.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

John-Can I agree with V and Cleve that your most recent doctor (the R.O.) used part facts, part a bit of bluster or overstatement.

It is not a clinical dogma that Gleason 6 "cannot have escaped the gland."  But it is profoundly uncommon for such to occur. What the doctor undoubtedly meant was that it was virtually impossible, not literally impossible.  A DRE only yields results for the condition of about half of the gland, and says nothing about the other half. But be aware, we read about virtually impossible stuff here all the time.

The doctor establishing Staging on no more than a biopsy and DRE is also a bit presumptous, due to the many false negatives that 12 core biopsies yield.  It is an educated guess, and probably reasonable, but not certain.

After IMRT or SBRT, the gland is in effect charcoal...my R.O. told me that himself.  This is harmless to the body, assuming all of the disease is killed, but there remains slight (uncommon) prospect of urinary stricture (constricted flow ability) later on.  But even if stricture occured, it is treatable after radiation.  Healthy tissue that is irradiated is simply killed like the cancer cells. But current radiation technology is extremely precise, and usually effective in avoiding any significant amount of healthy tissue.  Decades ago, this was not so, and colon and bladder damage was more common then than now.

So, what the two doctors have told you thus far is fairly mainstream, although some doctors would demand the further scanning the others have recommended.  My potential Radiation Oncologist (the head of the RO department), my surgeon (who did my RP), and an independent medical oncologist (the man who treated me for lymphoma) all told me that MRI, bone scan, and CT were not probably necessary in my case, but they knew I was going to choose a first-line therapy within weeks.  The RO and surgeon in fact told my wife and I that "they would not do further scanning prior to treatment."  One issue involved here is that PSA 6 suggest so little cancer that the tumors, IF outside the gland, would NOT be detectable by most scanning technologies currently in use.  So, the situation as to what to do is a bit murky.

My Gleason, like yours, was 6 also, and my PSI never got above around 4.4. I showled 5% volume, and only in one core.   But the pathology report following surgical removal showed that what was believed by all of them to be Stage I disease was actually a significant case of Stage II.  I know, "more murk."

max

TMoore
Posts: 3
Joined: Jul 2018

A urologist argued about ordering an MRI and kept pushing me to do a biopsy.  I wanted an MRI before any biopsy, so I asked my primary care doctor if he would write an order for an MRI of the prostate, with and without contrast (a dye that gets injected in your arm part way through the imaging procedure).  My insurance would not cover it, so I cash paid and it came to about $1,500.  If you go to a stand alone radiology clinic like RadNet they will charge about $1,500 and will sometimes discount it if you pay cash up front.  The images are read by a radiologist who works on contract for them, and is likely employed at a hospital.  If you get the MRI done at a hospital, it will probably cost around $4,000 to $5,000, so some of the stand alone commercial radiology centers can do a good job at a reasonable price.  Make sure the MRI is done on TESLA 3.0 equipment, and not on TESLA 1.5 which is older equipment.  If you want, you can get the images downloaded and burned onto a CD, then deliver the CD to another radiologist for a second opinion on the interpretation of the images.  For me, spending $1,500 out of pocket was worth the peace of mind, and I changed urologists afterwards.  The doctor you saw cannot tell you there is no extracapsular extension based on a DRE.  He can only feel part of the prostate gland.  Unless you had an MRI Fusion Biopsy, then the TRUS trans rectal ultra sound biopsy is really just a random sample of 12 or 15 cores where your prostate is stuck with a needle with the hope that if cancer is present, the biopsy needle will stick you in a spot that is cancerous.  But the biopsy needle with 12 or 15 samples can actually just punch around a cancer lesion and miss it, and your biopsy come up negative when a lesion is actually growing.  The TRUS without an MRI is random. 

VascodaGama's picture
VascodaGama
Posts: 3045
Joined: Nov 2010

If what you write is what the radiologist told you then he is not to be relied upon. I think this guy to be in the same group of your urologist trying to convince you that a proper image study is unnecessary. A DRE does not diagnose cancer whatever grade such could be and the biopsy diagnoses cancer with a grade, that in your case was Gleason score 6 (3+3). The T2a element is the clinical stage which is just a guess imagined by your urologist. If your doctor doesn't believe that such stage should be verified with added information from an image study then, in my opinion you should not trust him.

Can you tell us your age and about any other experienced or existing illness?

Your comments are dubious and the responses reinforce the idea that you should go to navigate in other waters. I recommend you to get second opinions from another group of urologists. I am sure that an independent radiologist would not answer with the same negative wording that the one above did.  

Best,

VG 

John-Can
Posts: 13
Joined: May 2018

Hi VG,

Yes the RO told me exactly what I wrote in my previous post. Furthermore he told me "I guarantee that you will live at least 15 years even if you go and live in a jungle (he means without any medical intervention). I'm 67 y/o. and healthy otherwise. I will sure seek a second opinion and will ask him for MRI and other imaging tests.

Thank you so much for your imput.

Clevelandguy
Posts: 471
Joined: Jun 2015

Hi John-Can,

From what I have read so far if I were you I would consult with a completely different set of doctors and hospitals for a second opinion. I feel the MRI is a good choice for helping pinpoint the location of your cancer(is it near the edge or barried deep inside) which could tell you how soon you need to do something.  Good info from a lot of the people above.

Surgery or some form of radiation are two of the most common treaments and yes they all do have their side effects/damage after the treament.  The American Cancer Society has some very good info on their website about the various treatments and their resultant side effects.  Also go to the manufactures website of the various radiation and surgery machines and check them out.

A lot of info the digest but if it is 3+3 you have some time to study and research.  Pick the best doctors and hospital facilites you can afford as I feel that choice does affect the life long outcome of any procedure.  Let us know if we can help with more info once you narrow down your search a little.

Dave3+4

Bill B
Posts: 1
Joined: May 2018

My Name is Bill. I was Dx with advanced agressive prostate cancer three years ago. 3 months of radiation treatment and Eligard. suicide attempt twice. Eligard has destroyed my entire life. Not only 100 % impotent. Constant suicidal along with other things. If you are with the VA. Run!! They dont want to hear about things like that. Viagra will not help and neither do the injections. You will be left as a empty shell of what you were before. Your Brain is never the same! they will tell you it will come back. From extensive reading most research tells you that is not true. For most men you will never be the same. I am alive for now but not living.

If just being alive is more important then living get the Eligard. 5 years ago I was at the top of Mt. Everest now Im lucky to be able to run around the block.

Good luck and get informed. Dont let the medical Team decide what is best for you. For me im no longer living I am just alive.

Bill B

Grinder
Posts: 442
Joined: Mar 2017

Bill... The more you can elaborate the better. Eligard I am guessing is an Androgen Deprivation Therapy that suppresses the production of testosterone thereby depriving prostate cells of androgen to stimulate activity.

What went wrong? Side effects? Dosages? Improper diagnosis or administration? 

I feel terrible for you if you are suffering for it, and it would help to pinpoint the cause so the more expert members can give you advice, and perhaps warn others to avoid similar circumstances.

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

I was diagnosed two years ago, had a prostatectomy that left me totally incontinent and have been on Leuprolide injections ever since.  Yes, there are some very troubling side effects.  Zero libido, zero interest in anything sexual.  And the brain fog seems to get continually worse. My doctor has informed me that these will improve eventually but will never be the same as before.

I'm wondering if you are a combat veteran, which may have predisposed you toward your suicide attempts?  And are you on any antidepressant?  I know tha VA is not the greatest place to be treated especially in the area of mental health.  But whenever I call the VA the first thing they ask is if I am having thoughts of suicide.  So you are certainly not alone in your situation.

I too had radiation in August thru October last year because the cancer had spread, and I have been told that they won't know if all of this has actually worked until probably 2020... about another year and a half away.  I have no energy and everything seems like it's a struggle, so yeah, I kind of get what you're feeling.  But suicide is not the answer.  If you could tell us about the stage of your cancer then we could maybe offer more guidance.

Whatever is going on in your head, please realize that there are thousands of other men who are far worse off than you are.  I know that doesn't help, but as I said, just to let you know that you are not alone in your struggles.  I hope you come back and participate in the forum. Also there is a live chatroom here... it's in the pink box at the top left of your screen.  There are several other PCa fighters who are regulars there. People come and go all day, so if the chatroom is empty try again later. It gets very busy around 10PM eastern. Good luck Bill.

Grinder
Posts: 442
Joined: Mar 2017

". I also asked him about the effect of radiotherapy on cells and tissues (prostate, bladder, urethra, semen vesicle) and he said radiation stops cell division and I wonder when a cancer cell stops dividing and eventually dies, it is ok, but what about normal cells and what may happen if they all die?"

John...

 That is the good thing about both radiation and Prostatectomy. The means of targeting radiation has vastly improved so targeting the prostate cells with mutated DNA is far more precise so "collateral damage" to normal cells and neaby tissues is greatly reduced than in times past. Similarly, nerve sparing Davinci surgery also targets only prostate for removal, sparing surrounding nerve bundles and tissues , unless migration of cancerous prostate cells have escaped the capsule and migrated into surrounding tissues. That's why it is essential to know whether the abnormal mutated cell growth is confined to the gland. 

Like Max mentioned, prostate cancer can be easily targeted, unlike other forms of cancer and treatments that cannot distinguish between healthy cells and cancerous cells, and end up killing both normal cells and mutated cells... like chemotherapy.

I think what your doctor may be conveying is the danger of cancerous cells lays in their reproduction, not in their individual existence. 

A normal healthy cell replicates and dies at a regulated rate. Some cells live a long time, some are programmed with very short life spans. This regulated cell death rate is called apoptosis.  However, cancerous cells with mutated DNA are not programmed to die at the regulated rate of apoptosis. They stick around and keep replicating... more cancerous  cells. And so a mass of unregulated cells forms. Since prostatr cells grow, replicate, and die at such a slower rate than other orgsn cells, most men have SOME cancerous cells in their prostate and never know it in their lifetimes.

But what if some of those unregulated cells escape the capsule? they can start reproducing more mutated prostate cells in the nerve bundles, the surrounding tissues, etc. 

Cancer cells dont "attack" other cells like a virus does. .. it crowds them out. If a mutated prostate cell  metastisizes, what Vasco calls "the bandit" , it could ride the bloodstream to any part of your body. If it invades bone tissue, it will multiply more unregulated prostate cells,  growing prostate tissue in  your bone or  marrow... that becomes a serious and painful problem. Same with invasion of any other tissue or organs. 

But, prostate cells are also famous for inactivity, unless stimulated by androgens in testosterone. Testosterone is the body's way of "waking up"  the reproductive system, such as  prostate cell activity.  So ADT deprives the bandits of stimulation in hopes of keeping them dormant, since the real danger of a single mutated prostate cell is its muliplication in unrelated tissues, such as bone, or other organs, where their growth by replication will interfere with normal organ function.

So  when does a cancerous cell finally die on its own? Maybe someonevelse can answer that... I dont know. It may atrophy from inactivity. Your immune system may recognize its proteins as foreign and attack it. Or the bandits ' location may be discovered and targeted with radiation.

Now you see why it is so important to discover whether the cancerous cells are near the margins of your prostate gland, or if they are deeply buried and confined to the gland.  And why a DRE that cannot detect growing cell colonies of prostate cells that  replicate without dying is insufficient since it cannot access the far side of the gland, which I did not know until Max pointed it out.

 The confinement to the capsule is absolutely essential in deciding what course of treatment you take. That is why, if it is  totally confined, you are very fortunate because all treatment methods are available.

 

Swingshiftworker
Posts: 1013
Joined: Mar 2010

OP: Here's my long standing "sticky" on the available choice that I post for men newly diagnosed w/PCa. 

Started posting this message over a year ago and my opinion has not changed.  It mainly addresses the choice between surgery and radiation but does not deal w/cyro.  So, I'll just add that, if ED is a concern of yours, cyro is even worse than surgery in terms of the potential risks.  Every doctor I spoke w/about it told me that you are almost 100% certain to become impotent after treatment w/cyro and the probably of success would be no greater than that achieved w/surgery or radiation. 

In any event, here's my recommendation as far as the primary choices for treatment available to you.

 

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 [8] 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!

 

 

ASAdvocate
Posts: 117
Joined: Apr 2017

SSW, This "sticky" is great!  I'm tempted to copy and save it ;)

BTW, as far as the personal choice to live with cancer in my body, it's always been an easy decision for me. All I have to do is read a few threads every day from men complaining about the effects of their treatments, and then I know that as long as my pathology stays low risk, that I never want to join them. Everybody is different, and that's my viewpoint.

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

I was told by several RO's that I was not eligible for cyberknife due to my high PSA and high Gleason score.

Has anyone else encountered this? 

ASAdvocate
Posts: 117
Joined: Apr 2017

It's still in trial stage for HR patients. Not enough experience for general usage.

https://www.practicalradonc.org/article/S1879-8500(17)30341-7/abstract

https://www.redjournal.org/article/S0360-3016(17)32249-6/fulltext

Grinder
Posts: 442
Joined: Mar 2017

"Stereotactic body radiotherapy (SBRT) for high-risk prostate cancer (CaP) remains investigational not only due to undetermined efficacy but also due to concerns for the potential toxicity when the treatment volumes extend beyond the prostate gland itself. "

From this study, it doesn't look like an issue of trial stages. It looks like inefficacy and toxicity are the issues in HR patients treated with SBRT. The article doesnt say whether SBRT is being investigated BECAUSE of inefficacy and toxicity,  or being investigated to REDUCE toxicity and make it more efficacious for HR patients. Judging from Rob Lee's experience it sounds like the former.

Grinder
Posts: 442
Joined: Mar 2017

"Prostate-cancer treatment causes ED because the nerves involved in erection border the gland. Surgery often cuts these; radiation frequently damages them.

A special surgical approach called nerve-sparing prostatectomy can push your ED risk below that of radiation. Studies report "functional" erections in 60 to 80 percent of men who have nerve-sparing surgery. Just don't expect miracles: At best, nerve-sparing surgery leaves men with erections not quite as firm as they were before surgery. In addition, nerve-sparing surgery may not be possible if the tumor is located near a nerve line. "

https://www.aarp.org/home-family/sex-intimacy/info-01-2014/sex-after-prostate-cancer-castleman.html

 "Between open and robotic, open is much better in terms of avoiding unintended tissue cutting/damage "

Not true. Robotic nerve sparing surgery WHEN POSSIBLE shows better incidence of ED recovery than open surgery and radiation.

I have been quoting studies over this issue several times.

Most everything else was accurate... but not your assessment of Robotic nerve sparing prostatectomy.

Even the AARP article I quoted is wrong as well, my  erections are rock hard two years after RP.

mmo159
Posts: 1
Joined: May 2018

Had a Biopsy a2 months ago was going to do another one.Is that need. I have a gleason score of six with psa of 4.82 any help would be grateful.Can to many Biopsy spread the cancer out of the prostate.

 

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

Apparently it is not an issue, however biopsies are not without risk. They can introduce infection but do not cause cancer to spread.  I'm guessing you are on active surveilance and are having another biopsy to determine whether it has progressed?

You should probably start a new thread from the main "prostate cancer" page rather than posting your question at the end of someone else's thread. That way more people will see your question and you will get more (and possibly better) answers.

peterz54's picture
peterz54
Posts: 345
Joined: Feb 2012

This is not encouragement to do watchfull waiting.  But if your cancer is not agressive, you should have plenty of time to educate yourself on the ways in which you want to deal with it.  I know one person who faired quite well with robotic surgery. But whatever standard of care approach you choose do not overlook diet, exercise, and stress control even if it just to reduce chances of recurrence.    

Two oncologists who have researched diet and also employ it their practices are Drs Colin Champ and Dawn Lemanne.    Look up their presentations on YouTube.  Champ has also published on this issue in the medical literature (see PubMed search tool).   

An MD, Dr. Dean Ornish, who did a small study with prostate cancer patients in which all the patients (PSAs around 6 and non-agressive PC) chose watch and wait.   The intervnetion group showed small regression in PSA while the control group showed increasing PSA over time.   You can find hs study in the literature. 

Researcher Valter Longo has mapped out some of the pathways which stimulate growth and has worked with oncologist in several studies.  In this case the intervention is limited fasting leading into radiation or chemo.   Limited fasting puts the body's normal cells in a more protective mode and eakens the cancer cells, makeing the radiation or chemo more effective and reducing toxic side effects.    You can find Dr. Longo in the literature (PubMed) and a number of presentation on line.   Search for Longo Cancer Paris 2017 in Youtube for a short but inoformative talk.

My opinion - If a physician tells you that diet does not matter run, don't walk, and find aother one who is up on the latest research or at least is open to being informed. 

While you're educating youself, drop all simple carbs and make sure you're not eating a lot of starchy foods.  Eat modest amounts of protein, no more than about 1 gm per kilo of your body weight (normal body weight).   Get up and move (walk) if you are sedentary.  Do the things that are stress reducers for you. 

If you have problems finding presentations here are some:

https://www.youtube.com/watch?v=W_diITmOeCM

https://www.youtube.com/watch?v=gIKVsHbW1yQ&t=3018s

https://www.youtube.com/watch?v=v4ame4E1rtE&t=664s

https://www.youtube.com/watch?v=mffGLuctKoE&t=219s

 

 

     

 

 

tarhoosier
Posts: 195
Joined: Aug 2006

Jon there is a difference in diagnosis with T2. cT2 (or any T number) means Clinical, that is from the information collected in the urology clinic with digital exam, psa and patient reports of symptoms. This differs from pT2 which is Pathologically definitive and can be derived from only the sectioning and microscopic examination of the whole prostate after surgical removal. Those who choose radiation are more concerned with treatment than pathology. I might agree with his comment about 15 year survival though it is a crude way to say that men with G6 tend to live for years without treatment before it becomes a threat to their health. In sum I believe that if you are a true G6 and at your age of 67 that with just about any treatment, or maybe no treatment that you will more likely die of something other than prostate cancer. Take your time, read, think, ask and make no decisions until you are satisfied. Time is your friend.

John-Can
Posts: 13
Joined: May 2018

I thank everybody who provided their helpful and wonderful input regarding my PC. And would like to let you know my final decision.

I consulted a few urologists and radiation therapists and they all agreed that I have three options:

1-Surgery

2-Radiation therapy

3-Active surveillance

If I choose radiation therapy and the cancer recurred, I will have just one choice left: hormone therapy

But if I choose surgery, I will have more than one choice available for me.

As for active surveillance, I have eliminated it at this time because I think it is a risk. I’m not sure if the cancer will stay Gleason 6 all the time or it will jump to G7, 8, or 9. No specialist could guarantee that my Gleason 6 cancer will stay Gleason 6.

So for the above reasons I will most probably choose Radical Prostatectomy.

Please let me know what you think about it?

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

John-Can,

It sounds like you have made your decision, and it is R.P.  Deciding can bring a lot of peace of mind.

You met with a R.O., and therefore gave RT a fair and reasonable shake.

I had DaVinci in 2015, and was well pleased.  My experience was mainstream, similiar to what most (but not all) surgery guys here report.  I had regained urinary control pretty well within a week of cath removal (you will wear a cath for 5 to 7 days after the surgery). This never hurts, but is inconvenient.

I was having sex within 2 months post-op, but this required an injectable drug. Then, a year or more on Cialias.  Today I have spontaneous sex with no Cialias, but not ever guy is that lucky.

Use a good surgeon with a lot of experience and everything should go well. For most men nowadays it does (in years past, less so).

Good luck and please continue to ask questions,

max

Grinder
Posts: 442
Joined: Mar 2017

Hey John... Here's what I think about it...

Get the best surgeon available even if you gave to wait 4-6 months. Since you are Gleason 6, that gives you the luxury of waiting for a good surgeon that will be able to work the Davinci machine expertly enough to spare as much of the nerve bundles as possible, making recovery fast and complete. Davinci robotic surgery is an art unlike typical open surgery.

The side effects that are associated with RP are incontinence and erectile dysfunction. Those are eliminated with an expert nerve sparing surgeon unless he discovers more infiltration by the disease, which is unlikely in your case. Both side effects will only be briefly experienced.

But you probably know the prostatic urethra will be removed and the urethra reattached... you will be losing 1-2 inches in the length of your business tool. That is unavoidable.

I had it done, with one of the best surgeons in my area. It was the smartest decision I made prostate wise in last 12 years.

Good luck... that is what i think... only my opinion.

MK1965
Posts: 179
Joined: Jun 2016

Majority of patients, myself included, who had RP just wish everything is thruth what you said about SE related to Prostate removal.

One that you recognized is experienced by about 50% of patients.

Whoever can avoid surgery should use that option for its own best interest.

RP lives irreparable damage and changes life for ever. It will never be same.

MK

hopeful and opt...
Posts: 2226
Joined: Apr 2009

I am unable to provide an opinion of what is best for you since you did not respond to my question of May 19 where you were asked what the involvement, percent cancer of each core that was found positive with a Gleason of 3+3=6.

Did you have a T3 MRI as was recommended at this board, or are you simply rellying on the docs that you are seeing who will not perform a proper diagnostic test?

For you information a Gleason 6 will not jump to a higher Gleason.....when there is a lot of gleason 6 found, which since you did not share here, is unclear in your case there can also be a Gleason 7. When there is small amount of gleason 6, it is unlikely to jump to a higher gleason....Gleason 6 will not go outside the prostate.

For those who qualify the American Urological Association, the American Society of Clinical Oncologist, and the National Comprehensive Cancer Network recommend Active surveillance as a first choice.

I am in the 10th year of an Active Surveillance protocol, that is simply being monitored. I have not experienced any side effects of active treatments that can be life altering.

As you can see I have been posting and reading this board since 2009, and I regularly attend local support groups and meet lots of men who are diagnosed. It is common to want to remove the cancer, get it out of the system, or radiate because of fear, and sometimes led by unscupulous doctors however when a person is eligible for active surveillance which you may or may not be................an active treatment is NOT in the best interest of the patient.

best

Deadmansoon
Posts: 43
Joined: Dec 2016

External beam radiation and brachytherapy should put this behind you. Just my opinion, good luck with whatever you choose. 

John-Can
Posts: 13
Joined: May 2018

Hi all,

Here is my update:

After researching for around 5 months, I decided to go with surgery. The surgery was done on September 5, my major problem now is nausea and acidity which is causing a lot of gas in my stomach. I’m throwing up everything I eat. Doctors gave me medications for this problem, but so far nothing helped. I don’t know how long this will last. Is this normal? Your advice is greatly appreciated.

John-Can
Posts: 13
Joined: May 2018

Hi all,

Here is my update:

After researching for around 5 months, I decided to go with surgery. The surgery was done on September 5, my major problem now is nausea and acidity which is causing a lot of gas in my stomach. I’m throwing up everything I eat. Doctors gave me medications for this problem, but so far nothing helped. I don’t know how long this will last. Is this normal? Your advice is greatly appreciated.

GeorgeG
Posts: 127
Joined: May 2017

At the risk of making your head explode after all of this good feedback, I have a few thoughts for you:

Cancer can be scary and we would all rather be fishing but you are lucky to likely be be a GS 6, this helps put you in a category of high probability of cure, and its slower growing, and you propbably have all options. AS may even be appropiate to consider.

You will help guide the selection of next steps based on your reaction to what you are learning. Some people want minimal intervention and like AS. A friend who recently went through this said "we have to get that sucker out!". He didn't care about MSK nomograms and long term outcome charts. No cancer at any level for him. Those two guys have very different "best" choices. How old are you, how strong is your ticker, are you fit, are you sexually active? 

If you opt for treatment then your choices are vast and can be confusing. Some are die hard RP fans, some are big fans of one of the many radiation options, with or without ADT, accelerated fractions, etc. One of the best things that you can do is get to the best center/doctor that you have acces to. ANY of these choices becomes a nightmare in the wrong hands. I flew 1,000 miles and braved the all day trip home 2 days after surgery (and removed my own catheter and staples)  to have a surgeon with 4,000 RP's do my surgery. I have 100% urinary continence with improving erectile function and zero complications. Am I a die hard fan of RP? Not necessarily. I thought it was the best option for me and my circumstances BUT I am a huge fan of the world renown guy who operated on me. I needed salvage radiation after and I went to Mayo with the department chair who has been doing this for 40 years. Most of the horror stories that I hear are not because RP or SBRT suck or are inferior, it's because the practitioner was not top notch. Also remember that as you visit doctors and get opinions, RP guys push RP, Rad Onc's push raditaion and radiation centers push what they invested in. What proton shop is going to push an EBRT machine down the road? I wish AS was for me because thats what I would have chosen but I don't care if I have cancer, neither does my wife who is on AS for a different type. All we care about is the probability that its deadly. Remeber that as the probability goes down then the risk of complications tugs at the choice because no intervention is a free lunch - they all have risks.

The single diagnosis of cancer is a diservice to patients in my opinion. A bunch of people die with cancer in their bodies but die of something else so the discovery of every lesion in the body is not necessarily a devastating discovery. Some are so deadly that doing anything is of limited value especially  if your older and in poor health.  Some are so benign that doing something besides monitoring may bring more risks then benefit. The trick is finding out if your in the middle and finding the best possible team to get you the best outcome for your situation. PCa usually one of the more treatable or benign cancers, especially GS 6 contained to the gland.

Try to relax and best of luck.

George

 

John-Can
Posts: 13
Joined: May 2018

Hi GeogeG,

Thank you for your input. I'm 67 y.o. I'm fit and sexually active.

SantaZia
Posts: 64
Joined: Apr 2018

Hi, John sorry you have to deal with this. As some have said you look very much like someone who would qualify for AS. Therefore, I would get a second opinion from John Hopkins on your pathology report. They also have the most conservative AS selection process which might reduce your anxiety. Definitely follow-up with a T3 MRI. If you have a true 3+3=6 the MRI won't really show much, but that is what you want to see.  I would have loved to have been an AS candidate but ended up high-risk intermediate. This statement is from my recent T3 MRI report:  "The prostate gland measures 3.0 x 2.6 x 3.4 cm in CC, AP, and transverse dimensions, for a total prostatic volume of 14 mL. Post-surgical changes of prior transurethral resection of the prostate gland again noted. The prostate gland now demonstrates mildly diffusely decreased T2 signal throughout, consistent with interval hormone therapy. The focal 1.8 cm PI-RADS 5 lesion seen within the right mid gland extending into the base and apex on the prior MRI is no longer visualized as a focal lesion. No other focal prostate lesions are seen." As you can see that is a lot of information.     After 7 months of research, I now realize that there really aren't that many treatment options for PC. At first, it seems there were too many to decide, but as I gained additional information I was able to eliminate many. I hope that folks will take their time in their decision-making weigh cost, the risk of complications, treatment outcomes, diagnostic data, prior health conditions, family longevity and genetics, and other factors prior to selecting any of the potential life-changing treatments for PC. It isn't always black and white.   

lighterwood67's picture
lighterwood67
Posts: 219
Joined: Feb 2018

From your update on September the 7, you had the surgery on September the 5th.  Right?  When I was in the hospital, the first liquid I tried to drink made be nauseous.  This went a way.  I am 5 months and a few days post op RP.  I do feel nauseous sometimes, but I think that was Sildenafil (Viagra).  I quit taking it about a month ago.  I am 99% dry.  I have intimate relations with my wife.  I am 67.  My first PSA was undetectable.  I will have my second PSA test in October.  My Gleason was a 4+3=7.  Good luck on your journey.

John-Can
Posts: 13
Joined: May 2018

Hi Lighterwood67,

Thank you for your input. I hope this nausea and heartburn will go away gradually together with stomach gases. But I'm still suffering from all of this. I'm glad you have returned to normal in 5 months.

GeorgeG
Posts: 127
Joined: May 2017

John

It looks like you posted your update about surgery while I was toiling away writing my long response so my comments were not of much help.

Everybody reacts differently to surgery and heals at different rates. The effects of the general anesthesia can take a while to completely resolve and everyone reacts differently. Keep you doctor informed about your status but try to relax and get some rest, your body just got pretty beat up and needs some time to heal and recover. I was a great candidate for surgery and heal very fast and don't scar BUY boy did I have problems with orthostatic hypotension. My tall a** could not stand up after surgery without passing out and I had to spend an extra day in the hospital. All of that resolved and my recovery was 100%.

I don't get nauseated from anethesia but my wife has a terrible time with it. Over the years they have figured out the best anti nausea medicine for her and she always recovers fully but there is always a bucket handy for the first few days until it completely passes and we are back to joking around.

Best of luck,

 

George

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

JonCan, I agree with George G that the nausea most likely is from the sedatives, although even people who are anesthesia-sensitive seldom have nausea for over two days.    I had no nausea or acidity at all in my particular post-op days.

I wish you luck. You did a lot of research and made a well-informed choice. Recall that there is no "perfect choice," however.  Be hopeful and rest easy,

max

John-Can
Posts: 13
Joined: May 2018

Dear All,

 

Sorry, I have been unable to post as my situation was so bad. I stayed 6 day in hospital after surgery unable to eat anything because of nausea and vomiting. I was just living on IV feeding. Day 7, I could eat a little bit without having nausea and throwing up my stomach contents. I was sent home on day 8 and yesterday my catheter was removed.

My problem is now total incontinence. That is 100% incontinence. It looks that my bladder got used to the catheter mechanism and is refusing to keep urine. Is this normal? What can I do to eliminate of at least reduce this complete incontinence?

Your valuable advice is greatly appreciated.

lighterwood67's picture
lighterwood67
Posts: 219
Joined: Feb 2018

 I have read on this site where a person regained bladder control in a day or 2.  A person, that I know, who had an RP (open), told me he regained control in a day or 2, but still wears a shield when doing heavy work.  In my case, RP (robotic); bladder neck reconstruction; 8 pelvic lymph nodes removed.  Currently, I wear a Depends thin some of the day, none at night.  I am at the 6 month point.  When the physical therapists checked my kegels, with 3 probes up my rectum, I scored 4 out of 5. This was pre-surgery.  The surgeon checked my bladder pre-surgery and had me exercise my kegels while watching the bladder. He said all looked good.  I still do my kegels.  I still exercise (core strength).  Your body needs time to heal.  I remember the first time I felt no sense of urgency to urinate.  I thought something was wrong.  From that day forward eveything got better.  Good luck on your journey.

Georges Calvez
Posts: 307
Joined: Sep 2018

Hi John,

This is one of those dirty little secrets that urologists like to keep to themselves until after your prostatectomy.
It varies from man to man how much incontinence you will have and how long it will last but most men are leaky for at least a few weeks, sometimes a lot more.
I had a lot, I would guess that the weeks after the catheter came out I would soak two or three pairs of the Tena Active Pants a day so maybe more than 95 %, I then improved over several weeks until the start of the radiation when I went downhill again.
Seven months after the operation I am losing less than 10g a day, I have days that are completely dry.
Kegel exercises are good, so is getting about and doing as much walking as possible, it is horrible at the beginning when you seem to lose some with every step.

Hang in there, it should get a lot better quite quickly,

Georges

eonore
Posts: 52
Joined: Jun 2017

Hi John,

 

The most important thing at this point for you is to be patient and not worry.  The vast majority of men do regain their continence.  Kegel exercises are important and will help the process along.  In my case, my doctor was worried about my long term prospects due to the gigantic size of my prostate and the damage that would be done by in its removal.  Despite that, at the three month point I was able to switch to pads from pull-ups, a real relief, and several months after that, light pads.  

It is entirely normal for you to be incontinent at this point.  Don't worry, it will soon be better.

Eric

MudMan's picture
MudMan
Posts: 23
Joined: Jul 2018

John,  I really can't add too much to what has been said above about the incontinence you are currently experiencing other than I am a week ahead of you on the surgery date (3 weeks post surgery).  I am 100% incontinent presently, but seeing improvement and using less pads inserted in the pull-ups on a daily basis.  I have learned to manually pinch off the urine flow on the way to the bathroom.  My therapist said this is fine for now and think of it as using crutches. 

I just started seeing a pelvic floor physical therapist and highly recommend you do the same.  Learning how to breath properly improved my situation.  Of course, regularly doing your Kegels is a major key.  The therapist also checked my three pelvic floor muscles and rated them 2/2/5 on a scale of 1 to 5 where 5 is the strongest.  I have room for improvement and my therapist said I would get there.

My surgeon told me that I should regain good urinary control within 4 months with the first two months requiring heavy protection.  By month four I should be in thin shields. His statement was based on how he did during my surgery and a vast majority of his patients have had the similar time lines.  He has done thousands of prostatectomies. Of course, there are exceptions.

Good luck on the journey.

John-Can
Posts: 13
Joined: May 2018

Dear forum members,

 

I thank everybody who tried to help me or comfort me and would like to post my update.

My incontinence started to improve yesterday and it is now around 50%. I’m still taking pain killer medications like Oxycodone and Tylenol because I still feel pain. I hope to improve daily over the next few weeks and wish good luck to everybody.

John

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