CSN Login
Members Online: 2

You are here

Newly Diagnosed

bob33462
Posts: 78
Joined: Feb 2016

Had a biopsy three weeks ago with a Gleason score of 8. I was very suprised because the urologist, in performing the biopsy with transrectal ultra sound, stated the prostate looked good except for a few calcium deposits.

I had prostate biopsies two previous times, the last about 8 years ago, and they were both negative.

 Been under the care of urologists for about 15 years and was beign treated for BPH and taking Avodart. I am wondering if it was cancer the whole time?

The Cat Scan, as per the radiologist reading, did not show anything outside the prostate. Waiting on the results of the bone scan, but worried as I did get a copy of the CD and I veiwed some dark spots near the shoulders and knees. Hoping these are just arthritis in my 69 year old body.

If so, I am leainng toward Da Vinci surgery.

 

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3323
Joined: May 2012

Bob,

Assuming your Gleason is accurate, you are well aware that it indicates aggressive disease.

Speak at least to a radiation oncologist also before deciding on prostectomy.  Even with a prostectomy, most likely you will be treated also with radiation and possibly hormones, depending on what an analysis of the gland shows after removal, if that is what you decide upon.  What is your PSA, and how much has it increased of the last few years ?

max

bob33462
Posts: 78
Joined: Feb 2016

 

2-16 -6.2

 

12-15 -6.7

 

5-15 - 4.8

 

12-14 -4.2

 

5-14 -3.2

 

12-13 -4.1

 

6-13 -3.6

 

1-13 -3.4

 

13 of 14 cores were positive

69 years old

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

based on this information I added a comment in bold to my below post.

bob33462
Posts: 78
Joined: Feb 2016

Thank all of you for your feedback and information. Still waiting for my Bone Scan results. Doctor has them, but his office will not release to me until he reviews them. I have called his office two days in a row and I know the radiology lab sent them to his office. I want them for a second treatment opinion.

I have decided this local doctor is not who I am staying with to guide my treatment.

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

 freeI am sorry for your diagnosis.

You did not mention how many cores were taken in the biopsy, and how many of them were cancerous. Also, what was the involvement, of each core that was cancerous, that is what is the percent of cancer in each core that was cancerous. Was there any other pertinent information that was noted in the pathology results.

As Max asked what is your PSA, and history. When did you start taking Avodart....Avodart basically cuts the level of PSA in half, and reduces the size of the prostate.

What other diagnostic tests have you had? results?

There is a better test that measures extracapsular extension...the T3 multiparmetric MRI.. There is greater definition than the Cat Scan. Does your medical plan allow for this diagnostic test?

Generally with Gleason 8's , there is high probability of extracapusular extension, that is that the cancer has escaped the prostate. A prostectomy is localized treatment. Most likely there will still be cancer outside the prostate, and other treatments such as radiation and or hormone treatment will still be required. The side effects of having various treatment types are cumulative.

Also the range of radiation can be expanded so that some area around the prostate can be radiated, and is generally more effective for large volume/aggressive cancers. (This does not happen with surgery to remove the prostate.)

Quite often a patient such as you is first administered a hormone such as Lupron for a couple of months, then receives a radiation treatment such as IMRT or SBRT, while continuing with hormone treatment.

You did not mention your age?

It is important to research, attend local prostate cancer support group(s), (USTOO is an international organization that can give direction to a local support group.) .

Feel free to ask questions. We are here for you.

H

PS In answer to your question. Since the bipsies that you previously had were random, and only biopsied a very small amount if your prostate, it is possible that prostate cancer could have existed at that time. That is the problem with random biopsies, even if none of the cores indicate that cancer exists, the cancer may still exist.

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

response to your second post......since the cancer is extensive and aggressive, and most probably, the cancer has escaped the prostate, the most effective treatment as mentioned above would be a combination of hormone and radiation. Generally the hormone treatment will last about two years. I would make an appointment to see a radiation oncologist. There are various type of radiation treatments that are available, IMRT, SBRT Proton. I would research SBRT..aka cyberknife, novalis, etc depending on the name of the various machines that can deliver this SBRT therapy. Although all of the external radiation treatments are precise, SBRT is most precise , and the sessions for delivery are only 4 or 5 while the other external treaments can have many sessions. IMRT forty sessions.

Please feel free to ask us questions.

You will be fine,

 

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3323
Joined: May 2012

Bob,

Hopeful and Optimistic confirmed something I had thought but did not want to mention without confirmation: A Gleason of 8 is assumed in most cases to have escaped the gland itself. This renders (virtually always) surgery a bad idea, a lot of pain, and side-effects for no good reason. As H&O noted, you are probably looking at extensive radiation and HT.  And also as he noted, very often these are very effective, and in some cases curative (if you are not yet Stage 4, the chances of them being curative are actually usually pretty good).  You need to see a good PCa radiation oncologist, and most likely a medical oncologist also.  MOST urologists are less conversant in what you need now, although some are heavily trained in medical oncology themselves (but this is a rarity).

max

Will Doran
Posts: 207
Joined: Sep 2015

Bob,

I was diagnosed with advanced Stage three / early stage 4 Prostate Cancer in October of 2013, at the age of 67.  I had DaVinci  assisted radical prostatectomy in Dec. 2013, followed by Lupron injections and 8 weeks of radiation 5 days per week. I was on the Lupron for two years.   My PSA was 69 when I was diagnosed and I had 40% invlovement of the prostste and a Gleason of 7.  I had one lymph node involved and that spot was so small that it didn't show up on my MRI's that were done with contrast imaging. Thus they changed my statis as a Stage 4.  I was treated as beign an advanced Stage 4.   Two months after the surgery my PSA had gone down to <0.010 and has remained there for over two years.  My surgery took 5 1/2 hours, because of complications with mesh from an abdominal hernia repair, a birth defect in that my prostate was adheared to my bladder, and also I have extreme muscle development in my legs and thighs from road cycling.  The muscle development caused problems as they were trying to remove the lymph nodes that are normally removed during this surgery.   Even though I went through all that, I was sitting up in bed watching a soccer game at 9:30PM when my doctor came in to check on me before he went home for the evening.  I was home the next evening and back on a treadmill two days later, and a month later back on a Spinner Training Bike.  So, the surgery was probably, the "easiest" part of this situation. I use the term "easiest" loosely.   However My doctors have told me over and over that my physical condition and all my exercise has and did help me with the surgery part of this treatment.  The Radiation wasn't a problem.  However the two years of Lupron has been pure hell.  There are the normal side effects that one would have if he were surgically castrated.  However the worst part has been the muscle and bone aches and leg muscle weakness which come from the Lupron.  I am now off the Lurpon and have been for two months.  The side effects will linger for four months and could hang on for up to a year.  We are now watching my PSA with the hopes that it will remain at what they consider "undetectable levels".  I think that is < .2.  I have done 7 weeks of Physical Therapy for my leg problems, and am now working out two days per week at the gym for 1 1/2 hours on weight machines, under the supervision of my therapists and trainers.  My muscle mass is coming back in my my legs and my legs seem to be feeling a bit stronger. 

Our situations are all different.  So what has worked, so far for me, may not be what works for others.  Please make sure and research as much as you can about the Surgery, the Hormone Treatment and Radiation.  Learn all the side effects, so you know what might happen.  Learn all you can and ask as many questions as you can so you are fully informed. 

Physical condition and mental attitude plays a very important part in this battle.  Try and stay positive and fight this beast as hard as you can.  Enjoy all the simple things in life.  The birds, the wild life you might see around you, thunder and lightning storms, sunsets, snow storms (yes, even snow storms),  the light of a new day, drives in the country--- I think you get the picture.

Support from Family plays a big part in this.  My wife has been and still is my best "Cheerleader" and support. 

May we all,( here on this site), hear, soon that you are making progress in this battle and I Hope and Pray that you find the same type of results that I have had. Even though I've done rather well at this time, The beast is and will always be hanging over my head, and we all live with that fear everyday.  But like I always say,--- "Take it one day at a time and fight like the devil." 

Best of Luck

Peace and God Bless

Sincerely,

Will

bob33462
Posts: 78
Joined: Feb 2016

Will, thank you for the information!

bob33462
Posts: 78
Joined: Feb 2016

Received some good news this AM -  no evidence of metastatic disease

Now decision is operation or radiation?

 

 

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

Always glad to read about good news.

Eventhough the bone scan showed no metasisis to the bone, that does not mean that the cancer has not escaped the prostate. You had a CT scan....this scan does not provide the  finest  definition to determine if there is extracapsular extension.  The  T3 multiparmetric MRI (if you click my name on the left, you will see what I have written about the benefits of this MRI) is a better diagnostic tool.

Surgery is an age related procedure; that is a 50 year old man who has an operation, will have good results with no side effects while a man who is 70, having the exact same operation, may experience severe side effects of erectile dysfunction and incontinence. At any rate if you should choose a surgeon, you need one who is very experienced having done at least  several hundred or even a thousand......there is a very steep learning curve.

As I mentioned to you above, it is still highly likely that the cancer has escaped your prostate, so it is in my laymans opinion best for you to have a radiation, procedure, which can radiation the area beyond the prostate, in conjunction with hormone treatment.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3323
Joined: May 2012

Delighted about your good news Bob. 

As Hopeful and Optimistic noted, be very precise:  Did your tests prove no bone involvement, or no escape out of the gland whatsoever . I would suspect the former [clean bone marrow], but you are the guy getting the results from your doctors.

I had DaVinci removal 13 months ago.   ANY form of treatment has potential, even probable, side-effects, but with surgery you will definitely have at least short-term incontinence, and be impotent for at least about a year; many guys become impotent for many years, or life.  Generally, the older the patient, the more likely these side-effects lasting a long time.  Experiences vary for each man.  Some guys report being sexually active a few months after surgery, but their expperience is way outside any known statistical norm.  

To repeat what we have already said in this thread: Even with the clean bone scan I suspect that if you choose surgery your doctors will want to radiate a patient who presents with a Gleason of 8, so factor that in, or better still,  ask whether that will be required now if you do the surgery route.  If you choose radiation then there is which form of radiation to use.  Most radiation modalities are close to equal in effectiveness, with the most common difference being in convenience of treatment.

Again, congrats,

max

Will Doran
Posts: 207
Joined: Sep 2015

Bob,

That's great news that your Bone Scan was clear.  I remember very well how good that felt when I got the news that my scans were clear, and the Cancer had not spread to my bones.  So far there is still no sign that it has spread beyond the Prostate Area, which was given radiation treatments just as a precaution, and that one extremely tiny spot in one lymph node, which was removed at the time of the surgery. As I said, I was treated as an advanced  Stage 4.  Thus Hormone Therapy and Radiation are what is normal to be done, even with the surgery.     My MRI's were all done with contrast imaging and there were no "hot spots" that showed up anywhere in my body, as of recent tests.  I trust and hope that you are in the same situation.  Your Gleason Score is high and thus does tell you that the cancer is aggressive.  Mine was listed as agressive and my Gleason was 7.  As I said before, all of our cases are different and what works for one might not work for another.  So please keep after this.  Research all of your options and fight "the beast" HARD. 

Best Wishes

Peace and God Bless

Will

bob33462
Posts: 78
Joined: Feb 2016

Met with a surgeon today and am going forward with it.

Will be some weeks to wait as have to get many tests, ekg, blood work, lung x-ray, etc, done before I will be accepted by Cleveland Clinic.

Surgeon said radiation may follow depending on what he finds.

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3323
Joined: May 2012

Bob,

You have made your decision following plenty of discussion and are with a great clinic.  Making a decision in this mess is agonizing for many guys (it was for me). At some point the coach just has to call a play and send it out to the quarterback. 

Be happy with your decision and may it be 100% effective.  One advantage of surgery is that when the pathologist starts analyzing your gland on the table, he will be able to say EXACTLY what was going on, and later treatments, if necessay, can be based upon his findings, as you noted.

max

.

Swingshiftworker
Posts: 1013
Joined: Mar 2010

I truly hope that it all works out well for you.  Good luck!

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

Best wishes and luck.

 

Josephg
Posts: 166
Joined: Jan 2013

As others have already stated, you've done your research, and now you've made an informed decision that you believe best fits your situation and needs.

Good luck to you in your battle with the Bandit.

Esqeddy
Posts: 3
Joined: Mar 2016

i was diagnosed in September 2015 with a Gleason score of 7 And a 6.4 PSA. I had decided to do the robot assisted RP surgery. As I read up on it I realized that I was definitely facing a period of inconstanence. My research indicates that it takes up to 18 months to regain urinary control with 20% of patients having some permanent level of inconstanence. ED is another issue in that 75% of surgical patients experience it to some degree.

The CyberKnife therapy consists of just 5 days of radiation. No inconstanence, no ED. 

Of course, my decision rests on the fact that I may be in a very different place in my life than you. I'm not of retirement age yet. I'm 57 and a trial lawyer. Inconstance is a no go for me and a courtroom.  Further, the recovery time is too long for surgery and my profession. Being an attorney in a rural area, there is too big a chance of word getting around that I had cancer.  This would likely end my career in that many people would be hesitant to hire me. 

In any event, I wanted to make sure you were aware of CyberKnife as an option.  There are a few preliminary days of imaging and meeting with the doctor and staff, but the treatment was literally done in 5 straight days. You lay on a table and watch TV for about an hour while a robot radiates you from about 200 different angles. You do that 5 times and you are done.  That's it. The only side effect I had was having to take more flowmax for a couple of months.  The radiation inflames the prostate for a while. No cuts, no pain, no peeing on myself.

Good of luck and best wishes. 

bob33462
Posts: 78
Joined: Feb 2016

Esqeddy, Thank you - I spoke to a radiology oncologist and he advised that SBRT, or CyberKnife, would be risky for me, based upon my biopsy results. Even though he owned a radiation practice he advised surgery and then radiation, if needed.

Good luck to you, as well

bob33462
Posts: 78
Joined: Feb 2016
Will Doran
Posts: 207
Joined: Sep 2015

Bob,

Thank you for that link.  It comfirms what I've been told by my doctors and goes along pretty much with what I said to you before.  Especially with the acceptable PSA levels, post surgery. 

I'm glad you've researched and studied all of this and you have made a decision.  Best of luck.  Know that you will be in my thoughts and prayers as you continue in your battle with the "beast".  Keep a positive attitude enjoy the simple things in life, and Fight like "H".

Peace and God Bless

Will

bob33462
Posts: 78
Joined: Feb 2016

I received a surgery date of May 20, 2016.

Not real haapy over a two month wait. I did ask to be put on a waiting list in case of any canceled surgeries.

I feel because of the aggresive nature, Gleason 8, of my cancer I need to explore other hospitals and surgeons to obtain an earlier date. Of course, I would not take an earlier date with an inexperinced da Vinci surgeon. 

Not sure that creates an ethics dilema for me? Keeping the above date while exploring other surgeons.

 

Will Doran
Posts: 207
Joined: Sep 2015

Bob,

Know that my wife and I will be Thinking of and Praying for You.  I remember how it felt waiting until the surgery could get done.  It seemed like forever.  I waited from the middle of October until the first week of December, until they could get the surgery scheduled, all the tests done and finally get the operating room and DaVinci Robot reserved for the surgery.

Hang in there and FIGHT HARD.

Peace and God Bless

Will

bob33462
Posts: 78
Joined: Feb 2016

Will, thank you!

Old Salt
Posts: 720
Joined: Aug 2014

Based on some relatively new info, I wouldn't worry about the 'delay':

http://prostatecancerinfolink.net/2016/03/07/time-from-diagnosis-to-initiation-of-primary-radiation-therapy-does-it-effect-outcomes/

And stick with the, presumably very competent, surgeon you choose originally.

Good luck!

Subscribe to Comments for "Newly Diagnosed"