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Confused

mitchden
Posts: 4
Joined: Jul 2016

At the end of May, I had a 12-core biopsy and 1 core was diagnosed as prostatic adenocarcinoma with a Gleason 7 (3+4), less than 5% of the tissue. An adjacent core was high-grade PIN and was suspicious for cancer. I sent the slides to Dr. Epstein and he said:

"Although these findings are highly atypical and suspicious for adenocarcinoma, there is insufficient cytologic and/or architectural atypia to establish a definitive diagnosis. Follow up is warranted with serum or urine tests, imaging and, in some cases, repeat biopsy with relative increased sampling of the atypical site may be recommended."

Based on the 2 different pathology reports, my urologist said the protocol is to repeat the biopsy in 6 weeks to 3 months after the first biopsy. I know that Dr. Epstein is a world renowned prostate pathologist and would have thought his report would have more credence than the original pathologist report.

Does anyone know the basis of the repeat biopsy protocol (i.e. 6 weeks to 3 months after the biopsy)? I was hoping to wait a year.

About 6 months ago, the NCCN practice guidelines for prostate cancer were changed to include active-surveillance as an option for my pathology. Has anyone read about this? My urologist told me that treatment is recommended for Gleason 7 (3+4) cancer (intermediate grade).

I am meeting with my urologist next week and will discuss the other tests (i.e. serum or urine tests) that Epstein suggests. Unfortunately, I can't have an MRI because I have a defibrillator. Will these tests help me decide when to have the repeat biopsy?

In May 2014, my PSA was 2.1. Oct. 2015 it was 3.4 and it was 4.0 in April 2016. A DRE was done in April and the doctor said the left lobe was "rubbery". The Gleason 7 was on the other side of the prostate.

Mitch  

 

 

VascodaGama's picture
VascodaGama
Posts: 2933
Joined: Nov 2010

Mitch,

I wonder if Epstein's has examed the whole 12 cores. You can call the laboratory for information. In any case, if you are aiming AS then repeating the biopsy is logical. Both pathologists (yours and Epstein) identified cells atypical (not benign) and your doctor indicates positive DRE.
The PSA (serum) and urine test does not substitute the biopsy. These markers can increase or decrease but only the biopsy can identify cancer. The biopsy can be done whenever you like. AS patients do check annually to verify any change in cancer aggressivity. The doubling (PSADT=24 months) is not short so that you do not need to rush.
You may discuss with your doctor if your situation permits image studies using PET, in case you wish to add more data to improve the diagnosis.

Best wishes,

VG

 

 

mitchden
Posts: 4
Joined: Jul 2016

Thanks VG. I had asked the pathology group to send the slides to Epstein, however, they only sent the "questionable" slides to Epstein. I learned that after I received Epstein's report. I never imagined that they would only send selective slides to him. I decided against asking them to send the other slides to Epstein and ask him to look at the slides that were not cancerous.

Before I sent the slides to Epstein, I had decided on surgery - mainly because of my psyche (i.e. not being able to sleep at night knowing I have cancer). I agree that the serum and urine tests (i.e. PCA3, phi, free PSA, Epifamy, 4K Score) do not substitute for another biopsy, but I was hoping to wait a year to do another biopsy and I'm hoping those tests may help me decide if that's appropriate.

With my pathology, I'm a little surprised that my doctor didn't suggest a second pathology review. The thought of having surgery and then learning there's no cancer is fightening. I hope that never happens, although, I guess that's why doctors/pathologists have mal-practice insurance.

I will probably listen to my doctor and schedule the biopsy at the end of August - 3 months after the first biopsy. I will certainly ask Epstein for a second opinion of the pathology.

Mitch

VascodaGama's picture
VascodaGama
Posts: 2933
Joined: Nov 2010

Mitch,

Before deciding on a treatment you should know about the options at your hand and their risks and side effects. I do not know your age or if you have any other illness/condition that is prohibitive to some of the options but you need to explore what is available. You need to verify if cancer is contained to avoid recurrence. The good of AS is that we can postpone a treatment without loosing the possibility in cure, but the regimen is not a walk in the park. You will be under constant vigilance. Surely one status must be proper for the modality.
Living with an unwanted guest is not for every one but living with permanent side effects may be worse. Treatments involve a deterioration of the quality of life of the patient.

I think you doing it well in checking all the samples. So far they found only one core positive which may be questionable. I would wait for more tests to draw conclusions.

Best,

VG

Rakendra's picture
Rakendra
Posts: 198
Joined: Apr 2013

I totally agree with VG.  Often when one thinks of cancer, the least scary decision is to get rid of it ASAP.  It seems logical.  However, those of us who have suffered the severe effects of treatment and loss of quality of life have learned that treatment effects can be worse than the disease.  Tread lightly here, my friend.  Everyone has a tendancy to unerestimate the problems of treatment and has the tendancy to think that the side effects will not affect them.  And, sided effects can be a real horror.  love, Swami Rakendra

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

Dear Mitch,

I am sorry that you are in a challenging situation that is threatening to you, but you have come to the right place for help.

I was diagnosed with a low grade cancer in March 09, and I have been in an Active Surveillance protocol from that time; I have not had any active treatments such as radiation or surgery, so I have not experienced any side effects from treatments which can be very considerable (especially the side effects from surgery). Please feel free to click on my name to the left to see the results of my active surveillance protocol, and what I have done....you may find this helpful.

Vasco questioned you about your age.....for example at Johns Hopkins, men who are over 70 with a low percent of the core that is 3+4=7 are treated in their Active Surveillance program.

Also you did not mention the involvement, that is the percent of the core that was 3+4=7 in results from the first pathologist.

A few years ago, I had a biopsy and for one of the cores, my initial pathology indicated a low percent of that core was 3+3=6; as you did, I sent my slides to Epstein...he came back with a 3+4=7 (low involvment of the core). .....So what I did was have a genomic test of the slides from that pathology, which showed low chance of progression.........so then, I had a biopsy one year later (instead of two).....( I am in a research program where an MRI is used,,first, and a three dimensional biopsy machine locks into the results of the MRI) and the doctor was able to target the area around the  core that was 3+4=7 the previous year, and take samples  of that area....there was no 3+4=7 at that time.......................Now it is two years since the last biopsy, and I will have another MRI directed biopsy.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3186
Joined: May 2012

Mitch,

A friend tested positive on a PCa biopsy about ten years ago. He was around 65 at the time, and went on AS. His Gleason was 6, and PSA around 4. His PSA has gone down since, and his next biopsy (about six months after the first) did not detect any cancer. Ten years later, he is still in AS, and has no symptoms at all. Not finding cancer on the second biopsy is not terribly uncommon: he just had very little to begin with, and the core pulls failed to hit whatever tumor he has (that is what his doctor told him). 

He is in a rather "loose" followship program, with only DREs and PSA draws over the last several years. I do not know if this is common, but apparantly his doctor feels it is approapriate to do no more biopsies until his presentation changes, if it ever does. It does not look like it will ever worsen in his case.

Conversely, I have had two other friends die from PCa, both after 14 years of therapies, and both at 72 (it has always been remarkable to me, how exactly the same their courses were).  It is impossible, it seems, to guess which patient will do what.  With the suspicious DRE and an intermediate Gleason, I would get the follow-up biopsies whenever the doctor suggests; I would not insist on waiting a year.    Just me.

A/S works for a lot of guys. As several have mentioned, it is best to take one's time and thoroughly research all options, and make an informed decision. You mentioned that you were at one point ready for surgery.  You mentioned having a defibulator, and cardiac health is a factor in getting approved for surgery, but a defib device might not necessarily preclude the possibility of surgery. 

Depending on age, radiation can often be an easier course of action, so research all radiation options as well.

max

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

Max

Of course I do not know the details of your friends case, but I am surprised that after the  last biopsy that was positive, 10 years ago, his physician did not recommend another biopsy.  In my case of Active Surveillance, the results of the biopsies are the critical information. In my program, there is a biopsy upon entering, another one after one year, then every two years afterward. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3186
Joined: May 2012

H & O,

Ben (my friend; I can use his first name, since he has never used the Internet) and I go to the same Urological Group at a regional medical center; maybe 20 urologists, five or so focus mainly on prostate disease, and do surgeries. Ben's doc does RP surgery, but advertises as an ED expert. All of the docs there of course are Board Certified in Urology.

Although I have never studied A/S, I have never understood the lack of much structure in how he has been followed.  I do not know that the doctor is really using an A/S "System."  It is possible that Ben has refused recommended biopsies without mentioning it, since he is a "I don't like doctors" kind of guy.   I asked him several years ago what his doctor had said recently, and he replied that he had not seen him at all in about two years. I asked him why, and he said "He hasn't called to make an appointment."  It might have been more accure for me to have written above that after ten years, he has no known PCa issues, but he is essentialy lapsed in follow up.  His comment set off some alarms in my head, and I asked why he did not take the initive to call, and he said, "I haven't had any problems."  A reminder that we have to drive our own health care, in PCa and every other issue.  I know that I am only getting "his" side of his treatment story, not the doctor's.

Ben is not unlike a large percentage of men in the US.  I know lots of guys who are in their 60s, and who tell me they have never had a PSA test, or if they have, they have never been given a PSA number that they can recall.

max

mitchden
Posts: 4
Joined: Jul 2016

Thanks for your postings. If it wasn't for Epstein's report, I would be scheduled for surgery next week. I've spoken to 6 people and they all had very good results from DaVinci surgery. My decision for surgery was made because of the Gleason 7 (3+4) and my urologist reommended treatment. Epstein's report slowed me down Smile.  My "decision" to wait a year for the repeat biopsy was arbitary and was based on my not wanting to know that I had cancer. If I do, I will really struggle with the choices. The results of the repeat biopsy will force me to deal with this and make a treatment decision. If the pathology shows low risk cancer or intermediate grade cancer that falls into the "low" risk category (according to NCCN guidelines), AS will be a stong "contender".  I know some people that were able to make their respective treatment decisions quickly and in all cases, it was surgery. 

For those that decided on AS, are you in a formal program at a cancer facilty? I know John Hopkins in Baltimore has a very structured AS program. I don't know if Memorial Sloan Kettering has a similar structured program. The reality is today I don't have cancer. My challenge is to let this go and stop the search for answers. As of today, I haven't been able to do that.

Someone asked how old I am. I'm 67.

Mitch

mitchden
Posts: 4
Joined: Jul 2016

After the first biopsy, my doctor requested a Polaris test. The tissue was sent to them and unfortunately, there wasn't enough remaining for them to complete the test. I had a hear attack 9 years ago. According to my cardiologist, my heart function is excellent (Ejection Fraction is 53%) and he would clear me for surgery. I can't have an MRI because I have a defibrallator and wouldn't interfere with the surgery or for that matter radiation. The Gleason 7 was in less than 5% of the tissue. My PSA was 4 and two years ago, it was around 2.

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

"Hi. Thanks for your posting under my posting of "Curious". I read your Active Surveillance log and was a little surprised that after the initial diagnosis of cancer, the next 2 (I think) biopsy's were negative. Since I think they were targeted biopsy's, where you and the doctors surprised? When you decided on AS, how did you decide which program to enroll in? I think you read that Epstein couldn't confirm the diagnosis of Gleason 7 (3+4) in 1 core (less then 5%). As you can imagine, I was elated. I am planning to have a repeat biopsy in about a month - although, I still am considering delaying that because I'm "afraid" of the potential result. If I have cancer and AS is an option, I'm not sure I'll be able to handle the uncertainty of not knowing if I'll need treatment. Do you stress out every time you have a PSA test and/or any other test? In my case, because of my defibrallator, I can't have an MRI which makes targeted biopsy's impossible. Thanks for your help.

Mitch"

 

First there is a color doppler ultrasound that gives effectiveness to the biopsy which you may wish to investigate. 

In answer to your questions I am enrolled in an active surveillance program at UCLA.

For the most part I go about my life, and do not worry about my case. I have other things on my mind. The longer from the original diagnosis the less I think about PCa. (When I was first diagnosed, I was highly stressed, I know longer feel stress, except on occacasions of testing when I become apprehensive). Since the initial diagnosis, I studied the beast and treatments, and have made decisions on what treatment, and who will treat if the disease progresses. Initially my choice of trearment was surgery, but after having the time for extensive research, I have decided on SBRT if the cancer progresses. This was a very new treatment choice when I was diagnosed, but thanks to the extra time for choice resuting from the AS protocol, this is a viable choice now.  The docors tell me that with the AS protocol, I can still have the treatment that I originally would have picked if I choose.  I am closely monitored and have had no physical problems to my knowledege. My quality of life is good.

Many times the cancer is not found by the biopsy. This is a critical concern of men who biopsy and who are in an AS protocol. "What is really going on??? During my second and third biopsy when no cancers were found, I had concerns about the effectiveness of the the biopsies that were done, since this proceure was new and understudied at the time. My doctor was not surprised,  since many times the biopsy does not dectect cancer, although it may exist.

In my life, I tend to believe that less is more, so I was inclined toward AS, but very sressed and though, that my cancer would spread if not treated, so I interviewed specialists. First I saw a local radiation oncologist who wanted to overtreat my case with both IMRT and bracky, and told me that I have 8 weeks to make a decision, or else.

Next a saw a "world class surgeon, one of the best in the world" who told me I was an excellent candidate for AS, and refused to discuss surgery with me. ...I was extremely relieved. Tears came to my eyes. I asked him to manage my case which he did for a year. At that time I switched to the newly formed research program using MRI and three dimensional biopsies.

I truely believe that AS is by far superior to any active treatment choice, since there are no side effects, and you can go on with your life. Prostate cancer is very slow growing, and you at 67 with other physical problems may die with , not because of PCa.

The results of surgery are age related, so a man who is 67 with exactly the same operation   as a  man of 47 is more likely to suffer severe side effect. 

hope that this helps....i hope that your questions are answered, if not please let us know what else needs to be answered

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