Post Surgical Pathology Shows Gleason 9!

Dadsman

I am a 56 male, living in Ontario Canada, who was diagnosed with Prostate Cancer in March 2013. I had an elevated PSA (about 6.5) and my urologist suggested a biopsy. The biopsy came back showing that 5/12 needle cores were positive for cancer. The 5 were all on one side and they showed Geason 7 (3+4). I was told that I had disease in about 10% of the prostate. I managed to get my first appointment with a surgeon on May 1, but as is generally the case with Canadian doctors the wait list exceeds the available O.R. availability and so I was put on a waiting list.

Not being one to sit on my hands with a cancer diagnosis I began an extensive research program and looked at all kinds of treatment options from HIFU, to Brachy to a radical prostatectomy (both open and robotic) and at the same time I elbowed my way into a follow-up MRI (against my doctor's orders ... I may add). Well the MRI came back showing definite cancer and the possibility of "extension into the capsule".

With this new information I just could wait no longer for the Canadian medical system to smile upon me and get me into surgery (by this time I had decided on a RP done robotically) and so I called Dr. Samadi in New York and at great expense relative to what it would cost in Canada, I booked surgery with him. I had my RP surgery on September 5th, 2013 and all went well according to Dr. Samadi and I thought ... finally I have taken charge and dealt with the problem.

A week later while getting the catheter out, the nurse went over the post-surgical pathology report and I was shocked to learn that I actually had Gleason 9 (4+5) and that I had extra prostatic extension. I also found out that I had disease in 31% of the prostate. That's the bad news. The good news was that the surgeon had removed the seminole vesicles and two lymph nodes on each side and both the seminole vesicles and lymph nodes both came back completely negative for cancer (ie clean). As it relates to margin ... this is what it says ... "Tumol ertends to the left posterior capsular resection margin (slide 1M). The remaining resection margins including apex and base (bladder neck) are negative for tumor. It lists the pathological stage as pT3a, PN0.

The surgeon told me that what this means is that there was good positive margin throughout except that in one small spot the tumor approached the margin but did not actually reach it?

 

I have done plenty of research on Gleason 7. This has hit me like a ton of bricks. The surgeon said that he thinks he got all of it but won't be sure until I start getting my PSA tests back and that if need be I might need some follow up radiation just to "clean it up". I would appreciate any thoughts that you may have.

 

Thank you.

 

lewvino

First let me say I'm sorry

First let me say I'm sorry that you had to find our forum on the web but there are plenty that have been down the rozd before you and face this challenge.

I was age 54 when I had Davinci surgery for my Prostate cancer (Gleason 7) and had a positive margin post surgery. First of Sept started IMRT Radiation since my PSA had started to slowing rise 4 years post surgery. Today will be treatment Number 12 of the IMRT radiation.

As you all ready know that a Gleason 9 is not good news. I would continue your research and find a specialist that deals in the higher grade Prostate Cancers. They will most likely monitor your PSA every 3 months to see what happens.

The upgrade on the Gleason in your case was most likely due to them being able to look at the entire prostate. In my instance post surgery I was changed from a Gleason 7 (4+3) to a Gleason 7 (3+4).  You may want to also see if you can get a second opinion on your Gleason Score. I am not a medical professional but being in the high risk category I think I would want a second look.

Also I wanted to give you another resource. I like the format of this forum but sometmes I feel the need to use another forum also. It can be found at www.healingwell.com under their prostate cancer section. They have a huge amount of very active members on that forum with many that are very knowledgable about the higher grades in prostate cancer.

You may also find it of interest that they are having an informal weekend get together of those that want to attend I believe in Rochester NY area this year. I have not attended any of these events they call GFMPH (Good for my prostate health) and can not attend this year due to being in the midst of my radiation treatments.  I have heard they are a great resource for support at these gatherings they have. I believe its in about 1 - 2 weeks from now.

I'm sure you will get some more responses on this forum also.

larry

 

 

 

Samsungtech1

Doctors

Dadsman,

I hope you are dealing with an oncologist as opposed to a urologist.  A nine usually means it is very agressive.  The MRI is encouraging, but cancer can go to the organs as well as the bones. Cat scans help detecting this.  For awhile I was getting cat scans every month, then three months, and finally six months.  First six month revealed it had spread to lungs.  I am on my second six month break in CT scans. Feel like I need to become more proactive with Oncologist.  

PI have said before that you are the only one. Who knows your body.  It will tell you what is going on. 

You mentioned it had gone to the bladder neck, I believe.  Usually when they take the prostate any spread is there.  Normally they give you about 38 radiation treatments. You do not mention any additional treatments.  So,  where did it spread to?

One other thing, no matter what you do, "Do not surf the web for survival stats, or listen to too many negative postings".  This will really stress you out.  I did it and according to the web I should be dead now.

Good luck,

 

Mike

hopeful and optimistic

lewvino said:

First let me say I'm sorry

First let me say I'm sorry that you had to find our forum on the web but there are plenty that have been down the rozd before you and face this challenge.

I was age 54 when I had Davinci surgery for my Prostate cancer (Gleason 7) and had a positive margin post surgery. First of Sept started IMRT Radiation since my PSA had started to slowing rise 4 years post surgery. Today will be treatment Number 12 of the IMRT radiation.

As you all ready know that a Gleason 9 is not good news. I would continue your research and find a specialist that deals in the higher grade Prostate Cancers. They will most likely monitor your PSA every 3 months to see what happens.

The upgrade on the Gleason in your case was most likely due to them being able to look at the entire prostate. In my instance post surgery I was changed from a Gleason 7 (4+3) to a Gleason 7 (3+4).  You may want to also see if you can get a second opinion on your Gleason Score. I am not a medical professional but being in the high risk category I think I would want a second look.

Also I wanted to give you another resource. I like the format of this forum but sometmes I feel the need to use another forum also. It can be found at www.healingwell.com under their prostate cancer section. They have a huge amount of very active members on that forum with many that are very knowledgable about the higher grades in prostate cancer.

You may also find it of interest that they are having an informal weekend get together of those that want to attend I believe in Rochester NY area this year. I have not attended any of these events they call GFMPH (Good for my prostate health) and can not attend this year due to being in the midst of my radiation treatments.  I have heard they are a great resource for support at these gatherings they have. I believe its in about 1 - 2 weeks from now.

I'm sure you will get some more responses on this forum also.

larry

 

 

 

Larry

I hope that you will also be able to provide this forum as a research source at healingswell where you regularly post now.

Dadsman

lewvino said:

First let me say I'm sorry

First let me say I'm sorry that you had to find our forum on the web but there are plenty that have been down the rozd before you and face this challenge.

I was age 54 when I had Davinci surgery for my Prostate cancer (Gleason 7) and had a positive margin post surgery. First of Sept started IMRT Radiation since my PSA had started to slowing rise 4 years post surgery. Today will be treatment Number 12 of the IMRT radiation.

As you all ready know that a Gleason 9 is not good news. I would continue your research and find a specialist that deals in the higher grade Prostate Cancers. They will most likely monitor your PSA every 3 months to see what happens.

The upgrade on the Gleason in your case was most likely due to them being able to look at the entire prostate. In my instance post surgery I was changed from a Gleason 7 (4+3) to a Gleason 7 (3+4).  You may want to also see if you can get a second opinion on your Gleason Score. I am not a medical professional but being in the high risk category I think I would want a second look.

Also I wanted to give you another resource. I like the format of this forum but sometmes I feel the need to use another forum also. It can be found at www.healingwell.com under their prostate cancer section. They have a huge amount of very active members on that forum with many that are very knowledgable about the higher grades in prostate cancer.

You may also find it of interest that they are having an informal weekend get together of those that want to attend I believe in Rochester NY area this year. I have not attended any of these events they call GFMPH (Good for my prostate health) and can not attend this year due to being in the midst of my radiation treatments.  I have heard they are a great resource for support at these gatherings they have. I believe its in about 1 - 2 weeks from now.

I'm sure you will get some more responses on this forum also.

larry

 

 

 

Larry and Mike,
 
Thank you

Larry and Mike,

 

Thank you very much for your replies. I will certainly check out the other website as well. I guess the troubling part for me is that I went into the surgery thinking that what I was doing was going to be curative and came out with a diagnosis that makes me believe that the chances are very small that I've seen the last of this. My surgeon, Dr. Samadi is also an Oncologist and his view is that there is a chance that he got all of it but that we will know more in 6 weeks when the PSA is done.

I guess my real question is; How much comfort should I take from the fact that the Nodes and Seminole Vesicles came back clean, that there was no cancer in the bladder neck and that there appears to have been positive margin. One more point that I didn't list is that I have had both a CT Scan and a Bone Scan and that they both came back negative for cancer? Am I fooling myself to think that I might be so lucky as to have had organ confined disease at Gleason 9?

Are there follow up questions that I should be asking my doctor? For example I don't know what the ratio of Gleason 4 to 5 there was. I know that the pathology says that I'm 4+5 ... but I don't know how much 5 that means. I went into surgery thinking I was 3+4 ... so the only real piece of information is that there was some 5 in there as well? Also, if I am to have follow up radiation ... what does that mean? Does radiation usually get rid of the rest of the cancer? What are the side-effects of follow up radiation? What does it do to Continance and Erectile Function? I assume it can't be good? How do I go about getting the raw samples that the pathologist looked at to get a second opinion on the pathology report? Mike, I am not yet aware of the cancer having spread anywhere yet?

When you say that I should follow up with a doctor that specializes is high risk disease, do you have any names that you have in mind? What will a doctor that specializes in high risk do that might be different?

Lastly, what should I do to cope emotionally? I am a very inquisitive type that's prone to much research. I wonder at times if I am doing myself any good?

Thank you once again for your help.

Dadsman

Samsungtech1 said:

Doctors

Dadsman,

I hope you are dealing with an oncologist as opposed to a urologist.  A nine usually means it is very agressive.  The MRI is encouraging, but cancer can go to the organs as well as the bones. Cat scans help detecting this.  For awhile I was getting cat scans every month, then three months, and finally six months.  First six month revealed it had spread to lungs.  I am on my second six month break in CT scans. Feel like I need to become more proactive with Oncologist.  

PI have said before that you are the only one. Who knows your body.  It will tell you what is going on. 

You mentioned it had gone to the bladder neck, I believe.  Usually when they take the prostate any spread is there.  Normally they give you about 38 radiation treatments. You do not mention any additional treatments.  So,  where did it spread to?

One other thing, no matter what you do, "Do not surf the web for survival stats, or listen to too many negative postings".  This will really stress you out.  I did it and according to the web I should be dead now.

Good luck,

 

Mike

Mike ... I posted one reply

Mike ... I posted one reply to both you and Larry ... please see above. Thanks

 

Dadsman

hopeful and optimistic

Dadsman said:

Larry and Mike,
 
Thank you

Larry and Mike,

 

Thank you very much for your replies. I will certainly check out the other website as well. I guess the troubling part for me is that I went into the surgery thinking that what I was doing was going to be curative and came out with a diagnosis that makes me believe that the chances are very small that I've seen the last of this. My surgeon, Dr. Samadi is also an Oncologist and his view is that there is a chance that he got all of it but that we will know more in 6 weeks when the PSA is done.

I guess my real question is; How much comfort should I take from the fact that the Nodes and Seminole Vesicles came back clean, that there was no cancer in the bladder neck and that there appears to have been positive margin. One more point that I didn't list is that I have had both a CT Scan and a Bone Scan and that they both came back negative for cancer? Am I fooling myself to think that I might be so lucky as to have had organ confined disease at Gleason 9?

Are there follow up questions that I should be asking my doctor? For example I don't know what the ratio of Gleason 4 to 5 there was. I know that the pathology says that I'm 4+5 ... but I don't know how much 5 that means. I went into surgery thinking I was 3+4 ... so the only real piece of information is that there was some 5 in there as well? Also, if I am to have follow up radiation ... what does that mean? Does radiation usually get rid of the rest of the cancer? What are the side-effects of follow up radiation? What does it do to Continance and Erectile Function? I assume it can't be good? How do I go about getting the raw samples that the pathologist looked at to get a second opinion on the pathology report? Mike, I am not yet aware of the cancer having spread anywhere yet?

When you say that I should follow up with a doctor that specializes is high risk disease, do you have any names that you have in mind? What will a doctor that specializes in high risk do that might be different?

Lastly, what should I do to cope emotionally? I am a very inquisitive type that's prone to much research. I wonder at times if I am doing myself any good?

Thank you once again for your help.

I hope that your recovery

I hope that your recovery from surgery is going well.

Dr. Samati is an experienced world class surgeon who is very knowledgeable. I hope that you are recouperating from your very recent surgery.

Most of us by the fact that we visit this forum are inquisitive as you are, and feel that a best decision can be made with the most knowledge possible.

We all have different coping mechanisms; mine is having an upbeat attitute and doing service for others, as well as studying the "beast".

As you mention there is a chance that the cancer has been contained in the prostate.

The results of your PSA readings will need to be closely evaluated to determine additional treatments radiation/hormone or hopefully no additonal treatment.

If there are side effects from radiation, this will be cumulative to any possible side effects of the  surgery. You will need to consult with a radiation oncologist,

A medical oncologist is an expert on hormone therapy. There are about 30 of them in the united states that specialize in prostate cancer. There may be a qualifed one near where you live in

Canada.  If there is progression, it is advisable to find the best that you can afford.

 

There is also another test , a Pet Scan.... that you may wish to investigate...there are a few  new fangled ones under study  that are more concise than the traditional one in determining where cancer exists,

 

iWish you luck...my prayers are with you.

 

PS

Here is a thread that you might find worth reading

http://csn.cancer.org/node/258414

 

 

 

 

 

 

 

lewvino

hopeful and optimistic said:

Larry

I hope that you will also be able to provide this forum as a research source at healingswell where you regularly post now.

I wouldn't say I regularly

I wouldn't say I regularly post at the other site. I like this site better actually but if someone needs fast answers I think the other site is also a good option since they seem to have a very active group.

 

larry

 

lewvino

Dadsman said:

Larry and Mike,
 
Thank you

Larry and Mike,

 

Thank you very much for your replies. I will certainly check out the other website as well. I guess the troubling part for me is that I went into the surgery thinking that what I was doing was going to be curative and came out with a diagnosis that makes me believe that the chances are very small that I've seen the last of this. My surgeon, Dr. Samadi is also an Oncologist and his view is that there is a chance that he got all of it but that we will know more in 6 weeks when the PSA is done.

I guess my real question is; How much comfort should I take from the fact that the Nodes and Seminole Vesicles came back clean, that there was no cancer in the bladder neck and that there appears to have been positive margin. One more point that I didn't list is that I have had both a CT Scan and a Bone Scan and that they both came back negative for cancer? Am I fooling myself to think that I might be so lucky as to have had organ confined disease at Gleason 9?

Are there follow up questions that I should be asking my doctor? For example I don't know what the ratio of Gleason 4 to 5 there was. I know that the pathology says that I'm 4+5 ... but I don't know how much 5 that means. I went into surgery thinking I was 3+4 ... so the only real piece of information is that there was some 5 in there as well? Also, if I am to have follow up radiation ... what does that mean? Does radiation usually get rid of the rest of the cancer? What are the side-effects of follow up radiation? What does it do to Continance and Erectile Function? I assume it can't be good? How do I go about getting the raw samples that the pathologist looked at to get a second opinion on the pathology report? Mike, I am not yet aware of the cancer having spread anywhere yet?

When you say that I should follow up with a doctor that specializes is high risk disease, do you have any names that you have in mind? What will a doctor that specializes in high risk do that might be different?

Lastly, what should I do to cope emotionally? I am a very inquisitive type that's prone to much research. I wonder at times if I am doing myself any good?

Thank you once again for your help.

Dadsman you ask some good

Dadsman you ask some good questions. Again I'm no doctor but from what I understand having clean nodes and seminole vesicles is a good sign. I was told the seminle vesicle is removed since its a easy way for the cancer to escape to other areas.

The CT and bone scan are good to have clean also. The first number in your Gleason is the primary cell structure they found. So the 5 is the secondary. I personally had 3, 4 and a spattering of 5.

Radiaiton can be given immediately or wait and see. As mentioned I'm now under going the IMRT 4 years post surgery since my cancer started to grow again at the positive margin site.

I will be getting 38 visits to the radiation oncologist. Each treatment consists of them shooting radiation at the targeted area from 9 different directions. I feel nothing during the time on the table getting the radiation shot at me. Side effects have been minimal for me so far, Just now starting to get the 'tired' feeling with low energy.

Following surgery I was lucky and had no issues with continance or erectifle function. I use 20 milligrams of Levitra and it works great for me. I can not comment yet on what will happen as my radiation progresses. Though i have been told that ED could be a problem.

 

How do I cope emotionally? I use this forum and the other forum. I try to answer questions for others facing this. Also for awhile I found a local prostate cancer support group at a hospital my wife works at that I attended for awhile. As allready mentioned though try to stay away from the negative posts. Remember they need support to and are usually posting because they are having issues and need to post, vent, etc.

A good resource is a Book by Dr. Patrick Walsh called Guide to surviving prostate cancer. Its written in laymans terms. Talks alot about the disease and types of treatments.

Another good book is

Saving your sex Life by Dr. John P Mulhall

You can most likely order these from Amazon.com.

 

Research is great and I believe its wise to be an informed patient. The more you learn the better questions you can ask.

 

Larry (lewvino)

 

 

 

 

 

 

hopeful and optimistic

Dadsman said:

Larry and Mike,
 
Thank you

Larry and Mike,

 

Thank you very much for your replies. I will certainly check out the other website as well. I guess the troubling part for me is that I went into the surgery thinking that what I was doing was going to be curative and came out with a diagnosis that makes me believe that the chances are very small that I've seen the last of this. My surgeon, Dr. Samadi is also an Oncologist and his view is that there is a chance that he got all of it but that we will know more in 6 weeks when the PSA is done.

I guess my real question is; How much comfort should I take from the fact that the Nodes and Seminole Vesicles came back clean, that there was no cancer in the bladder neck and that there appears to have been positive margin. One more point that I didn't list is that I have had both a CT Scan and a Bone Scan and that they both came back negative for cancer? Am I fooling myself to think that I might be so lucky as to have had organ confined disease at Gleason 9?

Are there follow up questions that I should be asking my doctor? For example I don't know what the ratio of Gleason 4 to 5 there was. I know that the pathology says that I'm 4+5 ... but I don't know how much 5 that means. I went into surgery thinking I was 3+4 ... so the only real piece of information is that there was some 5 in there as well? Also, if I am to have follow up radiation ... what does that mean? Does radiation usually get rid of the rest of the cancer? What are the side-effects of follow up radiation? What does it do to Continance and Erectile Function? I assume it can't be good? How do I go about getting the raw samples that the pathologist looked at to get a second opinion on the pathology report? Mike, I am not yet aware of the cancer having spread anywhere yet?

When you say that I should follow up with a doctor that specializes is high risk disease, do you have any names that you have in mind? What will a doctor that specializes in high risk do that might be different?

Lastly, what should I do to cope emotionally? I am a very inquisitive type that's prone to much research. I wonder at times if I am doing myself any good?

Thank you once again for your help.

Dear Dadsman,

 

Generally at this site we recommend that a second opinion by a world class pathologist be requested on the initial pathology slides of the biopsy so that one is not under or over treated since determining Gleason is very subjective, andthe  expertise by many  pathologists can be lacking. Apparantly a second opinion was not done in your case.

Now it is my non medical opinion that it is not necessary to have a second opinion on on the pathology of the tissue after surgery, since if the cancer had been localized there will be no recurrance. This true for any Gleason score that you may have . The PSA's that you will have will be the critidal information to determine treatment or no treatment in your case.

I pesonnally think , based on the information that you provided that there is a good  chance of your cancer being localized.