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denistd's picture
denistd
Posts: 505
Joined: Apr 2009

Today I learned that I have a very low grade prostate cancer, I have, in the past, had both larynx and early lung cancer, had chemo and radiation on the larynx in 2009 and all there is really doing well. Had a small nodule removed from my lung in 2012 that turned out to be cancerous. They found it on a one year scan for the larynx, iy was only a one and a half centimeter nodule. I had the biopsy because my dad, brother and Uncle all had prostate cancer, all survived that. My PSA, which has been elevated for years due to BPH, last PSA was 5.6, up from 5.0 last year. Anyway doc said we could do nothing and watch, I am 70, or radiation, I chose the rads only because treatment has worked on larynx, stage 2, and surgery on the lung ? stage no one ever told me if the lung thing was staged. Did I do the right thing going for the surgery? the doc said I would not get any symptoms for at least 5 to 8 years and it was not going to kill me.

 

hopeful and opt...
Posts: 1313
Joined: Apr 2009

As I understand you have been diagnosed with prostate cancer today, and need to make a decision about treatment.

In order to provide direction specific to you, more information is needed about the specifics of your diagnosis.

How many cores were taken in your biopsy,

How many cores were positive?

For each core that was positive, what was the Gleason score and the amount of involvement (percent cancer) of each core that was positive?

Any other pertinent information from the biopsy, perinial invasion, etc.

What did the DRE examine(finger wave) show, abnormalities? Normal?

It is important to have a second opinion of your biopsy slides by a world class pathologist that specializes in prostate cancer. Determining Gleason score is subjective and you do not want to be under or over treated. 

denistd's picture
denistd
Posts: 505
Joined: Apr 2009

There were 12 cores taken, 2 were positive. The doctor was showing me the results on his paperwork, gleason for both was 2, I saw this but did not know what it meant. DRE showed nothing abnormal. Don't know about the percentage of involvement only that he said there were a few cancer cells in the two cores. I am seeing a radiation doc in a couple of weeks. The urologist I saw is a professor of Urology at Penn State Hershey Medical Center. I have had two runins with cancer before and both were treated at Hershey, they did a fantastic job. I will ask about a second opinion when I see the rad guy.

 

hopeful and opt...
Posts: 1313
Joined: Apr 2009

Dear Denistd,

It is important that you have a copy of all your medical records, and be informed. Specifically you need to have a copy of your pathology report so you can refer to same.

 

The Gleason score generally ranges from a 3+3=6 to a 5+5=10. This Gleason score indicates the aggressiveness of the  the cancer that is found. A Geason of 3=3=6 is a less agressive cancer while a 5+5=10 is very aggressive. Also there are scores such as 3+4=7 and 4+3=7, the first number that is mentioned is more predominent.

As far is involvement, the percent of cancer in the core that was found...this is important to know since it is an indication of the extensiveness of the cancer found in the prostate, and somewhat of an indication if the cancer has gone outside the prostate or not.

The critieria for "Active Surveillance with delayed treatment if necessary" varies just a little at various institutions.

I beleive that at JohnHopkins, for example the criterial is for a low low aggressive cancer is

less than two cores out of twelve with a 3+3+6

less than 50 percent involvement or less in each of the cores

PSA/Prostate size ratio 0.15 or less

PSA 10 or less

I was diagnosed in March 09 with a low low aggressive cancer. I have been on Active Surveillance for the last 51 months. Like you I am currently 70. I plan to continue with this program for the rest of my life if I can.

Please click my name. You can see what I have been doing, and some sources of information that is good for you to read.

PS. I suggest that you see a doctor that specializes in Active Surveillance, hopefully at a major academic center of excellence.

PPS. A hobby of mine is to play the Ukulele, but unfortunately I am a poor singer.

PPPS. Get back to us with the details of your situation after you receive the written biopsy report from your doc.

 

 

 

denistd's picture
denistd
Posts: 505
Joined: Apr 2009

 In my original post i asked if I had done the right thing opting for surgery, I meant opting for no surgery.

denistd's picture
denistd
Posts: 505
Joined: Apr 2009

gleason was 2=3=5 in bith cores. Will do all of the other stuff you said, thanks for help, really appreciated. Denis

denistd's picture
denistd
Posts: 505
Joined: Apr 2009

Had my 3 to 4 month psa taken. the psa I had back in May was 6.00. WE have done nothing. The Latest psa was 5.5. Seeing the urologist tomorrow to see what all this means. I was surprised that it went down. Denis

hopeful and opt...
Posts: 1313
Joined: Apr 2009

The PSA basically shows a trend over time. There are various factors that affect the PSA on a short term basis, sex before the blood test, exercise, hard stool, etc. Do not pay too much attention to each PSA finding. The critical information are the results of the biospy.

In my case my PSA recently went down from 4.3 to 3.8, after rising from a 2.5 . Click my name to see the results of my psa's and other pertinent information about Acive Surveillance.

denistd's picture
denistd
Posts: 505
Joined: Apr 2009

I have not posted for a long long time. I have been on AS since June of 2013. I had my biopsy in the fall of 2013. It showed 2 cores out of 12 with gleasons of 6. The involvement was one core 15% the other core 40%. All of my psa's since then have been in the 5's. The doctor decided to put me on avodart to help with the urination stuff, before biopsy urinating was pretty normal, post biopsy get some difficulty, it is much better with the avodart. My last two PSA's were 2.9 and 2.5 respectively. I know that avodart will reduce the number. I have not seen the doctor since April. I see him in October but he wants to schedule another biopsy. Does anyone think that maybe I could forego this biopsy and wait till we see a rise in my psa? Thanks, Denis

hopeful and opt...
Posts: 1313
Joined: Apr 2009

Generally the PSA is about half the number resulting from the drug Avodart.The information that you posted about your situation, confirm this.  Remember the PSA is an indicator only, the results of the biopsy is the critical information. By the way the size of your prostate will be smaller with Avodart.

Here is information about biopsies that may prove to be valuable for you.

The biopsy that you had in the fall of 2013 ( or is that 2012?)was a (stratified) random one. There were 12 cores taken, each in a different section of the prostate. Since the machine is two dimentional, the placement of the cores cannot be exactly duplicated in a future biopsy. About 99 1/2 percent of prostate biopsies are done in this way.

 

There is new technology available  in some centers of execellence where a directed biopsy can  be done. First a multi-parametric MRI is done, suspicious lesions are located, ranked by potential aggressiveness; then a either the MRI machine is used again to target these lesions, or the information is locked into a three dimensional biopsy machine. So the biopsy for the most part is more effective, additionally, these procedures give the ability to go back to the exact same spot in a future biopsy to determine how extensive the cancer is.

Also the MRI can give indication of extracapsular extension, can show if the cancer is outside the prostate.

 

I've been doing this in my active surveillance program....feel free to click my name.

 

VascodaGama's picture
VascodaGama
Posts: 1550
Joined: Nov 2010

Denis

Most probably the biopsy will cause again inflammation which may lead to urination problems again. You are worried with that, so you want to avoid it as much as possible. You can in fact skip the biopsy and monitor any progress with a solo non invasive multi-parametric MRI exam, commented above by hopeful.

You were diagnosed with a low aggressive Gleason grade of 2 and 3 (Gs6) and negative DRE which made your doctor to postpone any radical treatment, recommending you Active Surveillance (surely he took into account your age too). AS includes a series of monitoring events to check progression in cancer spread and aggressivity. My lay opinion is that the type of cells (Gleason rate) will not alter because cells replicate equally, so that the monitoring will be done for the spread of cancer (volume, size), which can be done with the sophisticated 3t-MRI exam.

However, 12 needle biopsies only analysis less than 1% of the gland and that may miss to identify cancer in other areas of the prostate which in fact could have a more aggressive tertiary type of cancer (Gleason grades of 4 and 5). That could lead your doctor to recommend a different treatment.

The choice in doing additional biopsies is yours. The PSA is now under the influence of Avodart that is treating the hyperplasia causing relief in urination. Typically doctors consider 50% reduction meaning that your PSA would represent a double value (5.8 and 5.0 respectively). Even though, this marker should not be used to trigger another biopsy but to judge progression.
I think your choice in radiation is proper if any aggressive progression (doubling of PSA in less than 14 months) is detected.

In this link they say this about the 3t-MRI;

“Benefits of MRI for assisting in Watchful Waiting and Active Surveillance are:

• Multparametric MRI’s are non-invasive. Patients who elect WW or AS can get a baseline study performed to make sure they are truly a good candidate for expectant management. While in AS or WW, the Multiparametric MRI can be repeated if there is a change in the DRE or PSA to determine if there is a higher risk of progression of the prostate cancer.

• MRI-guided biopsies can ensure that the Gleason Score is accurate so that patients may be correctly directed to WW/AS or definitive treatment.”

http://deserthealthnews.com/stories/multiparametric-mri-for-early-detection-and-active-surveillance-of-prostate-cancer/

 

Best wishes,

VGama

hopeful and opt...
Posts: 1313
Joined: Apr 2009

Dear Vasco,

Thanks for the article that Dr. Feller wrote. By the way he uses a 1.5T MRI, not a 3.0 T. The statement that you quoted  is appropriate for either a 1.5 or a 3.0 MRI.

 

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

 

 I wonder if Denis urination problem is due to the biopsy? Are there other things going on?

Second, if it is due to the biopsy, I wonder if the doctor may have biopsied wrong, doing a biopsy of the wrong part of the prostate?

 

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

You make an interesting comment about using the MRI to determine what is happening. Although to biopsy is the standard of care, and the MRI determines suspicious lesions only; I heard of doctors who before an initial biopsy  view the results of an MRI....if clean, they don't biopsy, but if there are suspicious lesions they do biopsy. ...To be honest, I have a different viewpoint....in my lay opinion, I believe that it is always best to MRI and biopsy. In Denis's case, he had only one biopsy of the prostate in the past....one does not know what is going on in the rest of the prostate that has not been biopsied

 

Best,

H & O

 

 

 

VascodaGama's picture
VascodaGama
Posts: 1550
Joined: Nov 2010

Hopeful (Ira)

In 2011 Dr. John F. Ward from MD Anderson CC did a presentation on biopsies comparing the traditional 12 cores with the Saturation 30 cores type. His work has nothing to do with the requirements in AS of periodical biopsies but he questions the benefits in having many cores covering the whole prostate in terms of adding additional information in a diagnosis.

The contents of the presentation may be of your interest and you can see the slides in this link;
http://ebookbrowsee.net/26-1-4-ward-pdf-d162259130

Surely AS protocols include periodical biopsies with intent in monitoring but the length of these periods seems to vary among the experts. Some recommend yearly and some every two years. It seems that in low aggressive diagnosis the tendency is to extend those periods. Denis is a Gleason score 5 (Gs6 in the new standards) with negative DRE. He needs the biopsy to secure the initial diagnosis but the 12 cores is almost the perfect “shot” to achieve the real purposes for having a biopsy. Sextant was the standard in my times many cancers were missed. These newer techniques can provide a secured outcome.

Nowadays there so many non invasive “tools” to identify lesions that it takes some doctors to diagnose cases without biopsies. In fact, treatments are done equally no matter the grade of the cancer but the extent of the spread. Image studies become more important in the decision process. In other words, the way to grade a cancer and its importance may turn different of the present Gleason score process. Will biopsies become obsolete in future? Probably. Though, for the moment AS patients have to follow the standards of their doctors.

Biopsies cause temporary inflammation of the prostate. Denis commented that he had BPH problems from previous years which status may become worse in case of an infection. Patients without BPH are usually ok. You know that I am not as knowledge as you in AS matters. I would recommend Denis to trust your suggestions.

Best regards,

VG

hopeful and opt...
Posts: 1313
Joined: Apr 2009

Dear Vasco,

As I understand Denis had a 12 core biopsy, that I think was in 2012, two years ago. He also had PSA tests and DRE's. He did not have any other diagnostic tests.

 

Eventhough I am enrolled in an Active Surveillance protocol, and have an interest, I am not a medical professional and can only talk from my experience and some obsefrvations that I have made.

Whe I was diagnosed, I was very concerned about how I stood with respect to extent of my cancer, if the cancer was more extensive than indicated in the 12 core biopsy. At that time targeted biopsies were not available.

The majority( approximately 90%) of men at that time with similar numbers as I (and "Denis) chose an Active Treatment such as surgery. These men were not comfortable with the chance of the cancer being more extensive and possily gorwing outside the prostate.

After I was diagnosed, my doctor ordered a 1.5T MRI combined with a Spectroscopy ($900.00) that did not show any suspicious lesions, within the prostate or outside the prostate, which brought some peace of mind. I continued with AS, although I still had concerns. At that time I read lots of books, attended support groups and researched the Internet to include this site. I was focused on finding appropriate diagnostic tests that would give reassurance to the path of AS that I chose. Since I have had gene tests, enrolled in a research program that uses multiparametric mri's to target biopsies.. (these are not saturation biopsies, but targeted biopsies that take less cores and are less instrusive.

Basically I tried to limit my risk; explain to as great a degree as possible what is going on. This is what makes me comfortable. The more that is explained about my cancer, the more comfortable I feel.so I can make a best decision.....that's me. ....I am an uptight CEO of medical situation(as if my life depends on this, as it does)...the various doctors work for me, so I can obtain optimum information to  make the best decisions.

Now many others may not be interested in doing what  I do, for  their cancers. ...this is their decision.

If I was in Denis situation, (which I am to some extent,) I would not be happy in doing AS without obtaining all information that is possible. I would especially be concerned by not having a Multiparametric MRI. After a year and half since my first biopsy, I would not be comfortable without another biopsy, This is me.

Best,

Hopeful and optimistic based on research

 

denistd's picture
denistd
Posts: 505
Joined: Apr 2009

Thanks fella's. I was at my family doctors today for  flu shot. I had all of the paperwork from my cat scan to my chest and head and neck (all clear). He came to see me and I asked him. He has been my family guy for 25 years and he said have everything there is, indeed biopsy and MRI as you talked about above. You guys know a lot. I will get the stuff done that needs to be done. Thanks Denis

VascodaGama's picture
VascodaGama
Posts: 1550
Joined: Nov 2010

Denis

I think that our exchanged opinions regard the extent of your biopsy results. How much trust can you have in its correctness?
In principle, a 12 cores exam is the best for the analysis because it maps the critical zones in the gland. But these cores belong only to a very small (tinny) portion of tissue within the whole prostate, so that the diagnosis may not properly identify your cancer status. This is a worrisome situation particularly if one guy knows that he has cancer and chooses a palliative treatment.

Hopeful is my hero in regards to his determination and choice with AS. He got the guts to sleep with the enemy on the same bed every night (and probably still have rosy dreams). I think I am jealous of his courage. However, he does this because he is following the proper routines of the treatment. He has engaged in the highest means to get a real “picture” of the situation and be on the top.

In other words, a biopsy cannot be judged complete if it does not include cores from apparent lesions. The standard 12-cores can still miss some areas. This is the principle of the Multiparametric MRI biopsy, and Hopeful is recommending you to get one done, because from your posts it seem that you have not a reliable image study and your biopsy is already two years old.
In fact, if you are going to get another biopsy why not having cores from lesions that such technique can provide.

We trust our doctors but they may tend to take things “at easy” if we belong to the group of low risk cancers (Gleason score 5). That is why we patient should become our own advocates. Researching and educating about the problem, keeping a register and file on the data and events, and preparing a due list of questions for the consultations, etc. It should become our routines.

Best wishes in your decisions ahead. You have chosen AS and that can be the best weapon to confront the bandit of your case. I would take the same choice were I at your shoes.

VG

hopeful and opt...
Posts: 1313
Joined: Apr 2009

You are not only my hero, but everyones hero. 

When you were faced with this, you put 110 percent into research, to be knowledgeable in your own care. You have been very successful at that. You are a vibrant person. Additionally you know the value of giving, and have helped many, changed some lives and saved others.

Vasco, thank you

 

denistd's picture
denistd
Posts: 505
Joined: Apr 2009

Hey lads, thanks for all of your insight. My first prostate biopsy was done in June of 2013. There may be some confusion as I had a lung biopsy that was done in September of 2102 and revealed a small cancerous nodule in my left lung. When I had the nodule removed by vats in September of 2012, the doctors told me to keep my catheter in for a few days after my release and have my local urologist remove it. A couple of days after it was removed I contracted a urinary tract infection. When they took me to the local hospital here in York the doctor instructed a nurse to put another catheter in, well she screwed up royally and chopped up my urethra and prostate. They admitted me to the hospital and a urologist put in the catheter. 3 days after that the bleeding stopped and they took me to an OR to remove the catheter and do a cystoscopy. Whilst in there the doctor decided to shave my prostate down to relieve the BPH. The tissue that was removed from the prostate went for pathology and it was normal. Thought I was in heaven with a lot of the urination problem going away. Then he wanted to do the biopsy as my PSA was still at 5 something. I was not going to have that done at a local hospital. I went to Penn State Hershey Medical Center, after that, heaven was short lived. I will be talking to the Uro doc at Penn State on Monday and will discuss thoroughly the points you both have brought up. Thanks guys

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