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Newly dianosed, lots of questions and concerns

sr642
Posts: 1
Joined: Nov 2017

Hello everyone,

As the topic says I've been recently diagnosed with PC and have lots of questions.  I realize this probably won't kill me, at least any time soon, but that doesn't keep me from being scared to death.  After all, it is the C word.  

Brief history:  My father was diagnosed with PC in his early 60s, my age now.  I don't know the details but he had his prostrate removed and went on to live another 10 years, passing away from something unrelated.  Due to this I've tried to keep an eye on my PSA as I expected to have PC at some time in my life. 

Fast forward to a few months ago.  My PSA had been slowly going up but still within the normal range.  I had been told this wasn't anything to be overly concerned with as it's not uncommon for it to go up with age.  About three years ago it went up out of the normal range and my uroligist suggested I consider a biopsy which I did with negative results.  This past July I had another test and it had gone up to 8.5 and my new uroligist (the old one retired) suggested another biopsy.  Well, my luck ran out, it came back positive in 4 of 12 samples with a Gleason score of 7 and is considered stage 2 from what I've been told.  The uroligist arranged for an appointment with a radiation oncologist to help me determine the route I wanted to take, but I decided that wasn't what I wanted to do.  Surgery was scheduled for week after next for removal of the prostrate and the doctor recommended not trying to spare the nerves and just take it all out.  

I agreed to this but over the past few weeks it's been pretty much all I can think about and I've spent a lot of time doing research on the web and now I'm througly confused.  I came across some information about focal laser abalation but can't find much about it other than on the websites of the people doing the treatment, who of course benefit it I chose that meathod.  I asked my doctor about it but was quickly told it wasn't a good option for me without being told why, and that no one in our area did it. As "S" day gets closer and closer I'm getting more and more nervious about having a surgery that can't be reversed considering the possible side effects.  If there was some way to know it was in fact the best route for me to take I would I would just suck it up and get it over with, but I don't want to make a mistake I my have the rest of my life to regret.  On the other hand, I want there to be a rest of my life.  

Other than a measure of emotional releaf this is providing my main reason for the post it to inquire if anyone has had the FLA and how did it turn out?  Also, what other treatments could you recommend and would you recommend an oncologist over a uroligist for this specific problem.  My main concern is of course to become cancer free and see my grandkids grow up but the quality of life issues can't be totally dismissed either.  

To everyone reading this thanks for your time, just writing it has been helpful to me, and whatever information and suggestions you can provide would be greatly appreated.

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

I am sorry for your diagnosis and the stress that you are feeling. This extreme stress generally lasts for a few months.

In order to provide best suggestions for you, more informaton is needed about your case.

You mention that your Gleason was a 7, is that a 3+4=7 or a 4+3=7....the first number of the Gleason is most prevelent. Also what is the percent involvement of each of the cores that were cancerous, that is how much of each core was cancerous.

What is the size of your prostate, large prostates lay on the uretha and secret more PSA

What is the progression of your PSAs

What did the digital rectal (finger wave in the anus) indicate.

Did you have any other diagnostic tests, ie. MRI?(may show extracapsular extenstion, if the cancer is outside the prostate), etc

Did you have a second opinion by a world class pathologist of your biopsy slides.....there is a difference in skill and facilities of pathologists.

You mention that the surgeon will remove the nerves; with this erectile dysfunction is certain.

I also wondered if you interviewed various surgeons......................there is a difference among surgeons, and there is a steep learning curve for robotic surgeons....at least several hundred to be proficient...many have done thousands.

You need to do your due dilengence....and interview a radiation oncologist....radiation will provide the same cure rate with less chance of severe side effects.....and in your case, since the surgeon said he would go wide and not spare the nerves, radiation would most likely be more appropriate since the perimeter of the radiation can be adjusted to go outside the prostate and have a wider range of treatment, to include some area outside the prostate.

I strongly suggest that you cancel the scheduled surgery so you can gain knowledge and do your due diligence. Prostate cancer is slow growing and you have some time. You do not want to be treated with a method that you are not sure of and will have regrets. .....treatment choice is crutial and will affect the rest of your life

Come back to us with questions and information requested about your situation

Best

 

jimlu's picture
jimlu
Posts: 2
Joined: Nov 2017

I did exactly as ordered without a thougt of questioning the Drs.  I have Gleason score of 4+5=9, stage 4 metastasized.  You can ask a lot of questions that does not mean you will get a straight answer.  

 

VascodaGama's picture
VascodaGama
Posts: 2958
Joined: Nov 2010

SR,

Welcome to the board. Hopeful above gave you a sincere and good advice. It may be difficult for you to understand the meaning of his post without knowing details about this cancer, the meaning of the diagnosis and the pros & cons of the various treatments.

Initially we all go through the same scaring period post diagnosis and become very worried in committing an error in our choice and decisions. Once diagnosed, we must do something but such must be done in coordination with the findings and information available in hand, all done timely. It is absolutely normal and typical to do a treatment three, four month after diagnosis (some take even six month). Cancer does not spread overnight and you got the example of your dad.

Surgery or FLA or Cryo/Thermal-surgery treatments are a good choice when the cancer is contained (totally inside the gland). The answer of your doctor turns the data you share above and your status ambiguous. Why is surgery good but not FLA?
Either he is selling his trade "surgery" for being a surgeon or in fact he found that you got high probabilities of having extracapsular extensions (a not contained case). If such is true then you should opt for radiation. Moreover, if you got metastases even radiation alone may not be feasible as a single treatment. Each option depends on the real status of the patient which turns the diagnosis as the most important step to properly deal later with the bandit. The best diagnosis will weigh in the decision and outcome of a therapy. A due image study is required.

You comment above of rejecting a meeting with a radiologist and I wonder if you are against radiotherapy. You may want surgery just because your dad did so but even if the cancer is the same (genetic) each case is treated differently depending on the status. At this moment, postponing surgery seems to be the best till you decide on something that you feel totally comfortable and confident with. You may get second opinions while building knowledge. Any treatment will always be there to be done by the doctor you most trust.

Best wishes and luck in this your journey.

VGama

Tech70
Posts: 50
Joined: Nov 2017

As stated above, PCa is not as virulent as many forms of cancer.  It's essential that you take your time to feel comfortable with the treatment you choose.  I strongly suggest reading "Invasion of the Prostate Snatchers:.  The somewhat whimical title of this book is unfortunate, in that it contains a wealth of information on the various forms of treatment.  I found the section on cryotherapy especially enlightening.  The NCCN also has an online guide that can be downloaded and contains lots of good information. 

Clevelandguy
Posts: 415
Joined: Jun 2015

Hi,

Make sure you do your homework and this will give you the knowledge & piece of mine that you made the right choice.  Both surgery & radiation each have their own side effects.  Good doctors & good facilites are a must when you decide on your treament, I can't say that enough.  It's your body, your choice what ever the outcome is.  Might sound kind of basic but it is just that.  Once you decide what path to go there are several people that can guide you the rest of the way.  Good luck....................

Dave 3+4

Old Salt
Posts: 720
Joined: Aug 2014

As the name implies, Focal Laser Ablation (FLA) attempts to eradicate tumors that have been identified (foci). The problem is that (very) small tumors in the prostate may not have been identified and thus, will not be treated. Once these 'grow', they will need to be treated again (and again).

The American Urological Association has the following to say:

Clinicians should inform intermediate-risk prostate cancer patients who are considering focal therapy or HIFU that these interventions are not standard care options because comparative outcome evidence is lacking. (Expert Opinion).

Here is the link:

https://www.auanet.org/guidelines/clinically-localized-prostate-cancer-new-(aua/astro/suo-guideline-2017)

 

MK1965
Posts: 162
Joined: Jun 2016

 

My understanding is from original post that it should be 3+4 because he mentioned Stage 2 .

4+3 would be Stage 3. As per stage 2 all 4 positive cores should be 3+4.

That sounds wY better then it would be other way.

IMHO, anything less aggressive thab surgery would be good choice. FLA is certainly one of the good choices with good preservation of sexual function and easy recovery.

MK

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3228
Joined: May 2012

sr,

It seems you have mostly decided upon surgery.  It is good that you met with a radiation oncologist first, and do consider his imputs.   I wholly agree with what Old Salt wrote regarding FLA. We are not doctors and cannot give medical advice, but do read further before going that route.

But I absolutely would not let a surgeon say before even beginning that not attempting nerve sparing was ok.  Depending on what he finds, nerve sparing may be quite possible, and even relatively simple.  It just depends on what he finds.  Scanning before surgery to establish staging is much better than it was years ago, but still relatively primative.  It cannot provide certitude of negative involvement outside the gland, although it can prove movement outside the gland.  That is, it cannot prove no metastasis, but can prove that there IS metastasis (or at least a mass that is reasonable for metastasis, which would require biopsy for confirmation).   I would not trust a surgeon who was of the attitude to "just cut everything out."  Surgeons vary greatly in skill and even in attitude. Speaking to another surgeon might be well advised. But do not go to another guy in the same practice, since they will be under some pressure to agree with their coworkers.

Surgery has benefits and limitations. But one thing about it that I like is that when the gland is removed and under a microscope in a pathologist's lab, you know EXACTLY what you were dealing with, in a way a scan or lab testing could never establish.  But preserving erectile function should be a priority for any surgeon.  Make it be so for yours.  There is no reason at this point to forfit future potency for no good clinical reason.  It is not really even ethical for a doctor to do so.

Some men agonize over what to do regarding PCa for months or longer before doing anything, others do the first thing their doctor suggests, without ever asking any questons of anyone.  You appear well in the middle, a healthy position to be in.  But do consider what the radiation doctor shared.  There is no rush, but if you are certain of your decision, then neither is there any reason to dally forever.  And you are correct: The more a man studies this, the LESS obvious a decision is.  There are more "statistics" thrown about here than in a TV football commentary; it never ends.

Proceed with confidence and trust, hoping for the best.  After making a sound, outcomes-based choice, hope is all any of us has,

max

Swingshiftworker
Posts: 1013
Joined: Mar 2010
OP:  I'm somewhat surprised that you are asking for advice on available options having already been on AS for the past 4 years.  I would have thought you would have already done your research about those options when you chose AS.  Be that as it may:
 
The following message is a duplicate of one that I have posted in various threads on this forum to give men newly diagnosed w/lower risk prostate cancer (Gleason 6 or 7) an overview of the treatment options available to them.

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

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

. . .  People here know me as an outspoken advocate for CK and against surgery of any kind.  I was treated w/CK [7] 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.

5) 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!

jimlu's picture
jimlu
Posts: 2
Joined: Nov 2017

It's been a year since my stage 4 gleason scor 4+5=9 was diagnosed.  I have followed exactly as directed by Oncologist.  Prostate removed, radiation and ADT.  Just ordered a 68 page patient guide from the Prostate Cancer Foundation.  Best move so far.  The oncologist plan is to now hold tight, do nothing but the Lupron shot every 3 months for 2 years.  At this point we will see.  It's [Content removed by CSN Support Team.], (sorry only way to put it). Chance of survival very, very low so wait then when they are sure go for Chemo.  New evidence shows go for it all now.  I am working to get get Chemo bofore the 2 years is over.  As improtant what you can do now is diet and exercise.  Fasting 1x week for 24 hours, cut out red meat, sugar and all junk food.  When Dr. says just follow their program but do everything else the same it won't work.  

Good Luck and be strong

Jim

Old Salt
Posts: 720
Joined: Aug 2014

Please start a new thread if you want responses tailored to your situation, which, unfortunately, is very different from the one of the original poster (sr642).

Grinder
Posts: 437
Joined: Mar 2017

Do not be afraid to consult with other urologists if you feel uncomfortable with your prognosis. There usually are competing clinics and hospitals in major cities, and you should definitely seek 2ND and even 3rd opinions and recommendations. I myself have gone through five urologists until I stettled on the one with the least manipulation and the most expert surgeon available.

Like Max I am concerned about the "let's cut everything out" approach. In such an instance you definitely need 2ND opinions because of the severe consequences of total nerve loss.

Now I am going to say something that may or may not be relevant in your case, so take it with a grain of salt...

How did you possibly schedule a prostatectomy in such a short short waiting time?! In my area, I had to wait 3 + months because there is high demand for the most SKILLED robotic surgeons. From what I gather, it sounds like you have only a two week waiting time, which is UNHEARD of when scheduling surgery with the most expert surgeons. Robotic surgery is a different skill set than open surgery. So who is doing your prostatectomy and what are his qualifications and how many operations has he successfully done? This is ESSENTIAL in your prognosis and recovery.

I am no expert and cannot give medical advice, and wouldn't dream of attempting it, and have no where near the expertise of others on this forum, as I am constantly amazed at their wealth of knowledge, but those two red flags would cause me to take pause. The problem with some clinics... You get the "next man up" instead of the best available. And sometimes you get the newbie instead of the experienced expert surgeons, who have a corresponding backlog because of the high demand. Are you getting my drift here?

It may be that your urologist has inside information that total nerve loss is necessary, and immediate treatment is paramount, but I would want a 2ND opinion in such drastic circumstances. But that is only my opinion. I would suggest researching into these archives to discover cases pertinent to yours, to gather as much info as possible.

Good luck and God bless.

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