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Diganosed Gleason 9 Today

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Posted 8/19/2008 10:11 AM (GMT -6)
Well I got the results of my biopsy today and I am in shock to say the least. A Gleason score of 9. All twelve samples positive.

The doctor said surgery is not a viable option and that targeted raidation and hormone therapy is the only option.

I am going for a Bone Scan and a CT Scan this week to see if there is any spread.

Any help or recommendations would be appreciated.

Jack

Posted 8/19/2008 10:57 AM (GMT -6)
Jack,

Don't give up!  I was a Gleason Score 10 and my story is on my website.

If I can help or you need to talk send me an email.

Richard

Posted 8/19/2008 11:16 AM (GMT -6)
Stay positive, Jack,
I have read many books and articles abut this hideous disease. A Gleason 9 can very well by kept under control for a long, long time. As I say to all, get yourself real educated on this. You have some treatment decisions ahead, probably some more tests too. Like my friend Richard says, there is always hope, no reason to give in. This may even still be very locaized, strong probability given your PSA. So hang in there. again Stay Positive!

Tony
Posted 8/19/2008 11:40 AM (GMT -6)

Hey Jack...I was biopsied and rated as a gleason 8 (4+4).  After my surgery the path report was Gleason 7 (3+4).  Point being that nothing is certain about these needle biopsy as to the severity.  Be positive about all of this.  I am curious as to why the doctor said surgery was not a viable option.

Posted 8/19/2008 12:03 PM (GMT -6)
I have to agree with Salty,
There is not enough information to eliminate surgery at this point! I know the doctors experience in statistics probably say no surgery, but there needs to be proof that the cancer has spread outside the prostate before making that assessment. Even still, I have seen localized spread ~ Stage III cancer operated on with good results. I was able to get to undetectable from surgery alone and I was borderline Stage III/IV after surgery. Just because statistics say a trend one way or another, does not mean that applies to everybody. If a nomagram indicates 65% chance surgery or treatment would fail, that means 35% chance it will work. You need to be your own advocate. It's time for that second opinion. Any major centers close by?

Tony
Posted 8/19/2008 5:00 PM (GMT -6)
Jack Z -

Welcome to the club you didn't want to join.  Being in shock is normal for anyone who finds out they have cancer.  It will take some time to mentally adjust to things.  My recommendation to you is to learn as much as you can about PCa so that you can make the best decisions.  Also, find the best doctor at a top notch hospital (MSK, Johns Hopkins, etc.).

The folks who post here are the most informed and supportive people on the net, so ask a lot of questions and stay in touch.

- John

Posted 8/19/2008 5:36 PM (GMT -6)

Hi Jack,

Sorry to hear that the biopsy was positive. My story is similar to your own and I am on no 31 of 45 radiation treatments. My urologist pretty much gave me the same recommendation as yours gave to you. I felt that I should get a bit more advice so I got a second opinion at a Midwestern clinic of some reputation and a track record of PCa treatment and research. The doctor there recommended surgery, radiation and hormone. Point is if you want surgery there is probably someone willing to do it but you may still need to do the radiation and hormone. After much research and posting questions on this board and another I decided to do just the radiation concurrent with hormones as recommended by my local physician. If you would like to know more about my decision process or just some things about the treatment I am more than willing to share. I hope your scans come back clean. I also had a chest xray in addition to the bone scan and CT with contrast. You may want to ask about that as well. There are other tests as well but I would wait and see what you get back from these. You will get the results from these tests much quicker than the biopsy. I had mine before I walked out of the hospital that day.

Offer is good if you just want to talk as well. Sort of a dark day when you first get this news but there is hope.

Best regards,

Don

Posted 8/19/2008 5:51 PM (GMT -6)
Dittos on learn as much as you can about this disease. You are your best advocate. Hang in there!
Posted 8/19/2008 6:15 PM (GMT -6)
i agree with the other posts. hang in there and stay positive. i know it is easier giving advice than taking it. when i found out i had cancer, i couldn't say the word "cancer" without crying. i went to so many websites and always landed on what the worst outcome could be. i am a worrier, stresser and all the things that are bad. i found this site and some sites like the mayo clinic website. i had surgery on may 9 and had a gleason 8 and so far so good. never give up and never stop talking to someone. like the others have said, be your advocate and push you doctor hard on with questions, etc. my suggestion is to take a tape recorder with you with written questions in hand. trust me, i was a basket case when i met with doctor and when i left i kept saying i wish i had asked that and what did he say...
Posted 8/19/2008 6:52 PM (GMT -6)

Thank you all for your words of encouragement and for the great advice.

 

It’s been 11 hours since I heard the diagnosis and while I am still in a bit of shock hearing all your stories and reading some of your web sites has been very reassuring.

 

I am concerned over the timing of my treatment considering a Gleason 9. Assuming that my scans are clear I am wondering how long I should procrastinate before actually deciding on a treatment option?

 

I did call three of the Proton Therapy Centers today to see what they require. One Mass General said they do not treat unless you ate below a Gleason 7. Of course that is the closest to me here in NJ.

 

Several of you questioned my doctor’s comment about surgery. To clarify he said they surgery could be an option but if he were me he would not do surgery because with a Gleason 9 there is probably involvement in the margins and surrounding tissue and even after removing the prostate I would still probably have to go through the radiation and hormone therapy, and the long term prognosis would be about the same. He is a surgen and does this every day and if he would not do surgery if he had the same diagnosis is somewhat convincing to me. Any comments on this would be welcome!

 

With regard to the type of radiation he said it was targeted using a CT Scan. Is that what most of you have had??

 

I’ll keep you all posted on my progress. Please keep writing it helps!!

 

Thanks

 

Jack  

Posted 8/19/2008 7:53 PM (GMT -6)

Hi Jack,

Glad you clarified your doctor's comments regarding surgery. Exactly the same comments given to me and he is correct that the outcome for radiation is about the same as surgery. At  least from my research.

I am getting Intensity Modulated Radiation Therapy (IMRT) with Image Guided Radio Therapy (IGRT). That is most likely the treatment he is describing to you. Here is a brief summary of the treatment. Prior to beginning the radiation I had three "fiducial" seeds implanted in the prostate. This was after 8 weeks on hormones. The purpose of the seeds is to be a target for the radiation. You can see from my signature the overall treatment so I will not elaborate on that. I will describe a typical session. I recieved a full pelvic for the first 25. A typical session was location of the seeds by xray (IGRT) and positioning of the table for treatment according to the plan. I received two doses. The first was full pelvic aimed at getting the prostate, lymph nodes, and local spreading and the second was only to the prostate.

The remaining 20 treatments for the prostate only start out the same with locating the seeds and positioning the table and then radiating the prostate. Takes bout 15 minutes for the whole thing.

The full pelvic is limited to 25 because the small intestine cannot take more than 40 or 41 gray.

Just in case you are interested the machine used in my case is called the Varian Smartbeam. There are others as well. You may want to ask your doctor about this aspect of the treatment.

I have had some minor diarreha and skin rash from the "full pelvic" in the fourth and fifth weeks. Both cleared up within 48 hours of the last "full pelvic". Imodium kept the tummy under control. Skin rash was only for three days. All in all it has not been that much discomfort and I have maintained an exercise routine for all but the fifth week. Had to slow down on the running portion but picking up speed again this week. Worst part of the treatment has been being tied down to the house for the summer. Only takes a few minutes out of the day but you got to do it every day except weekends.

I will let someone else describe the proton treatment as I can only tell you what I have read but it sure sounds good just has limited availability.

As for timing of treatment my advice would be sooner rather than later. In my case scans were clear but that really does not mean much. I started my treatment within 30 days of the biopsy.

Keep your chin up.

Don 

Posted 8/19/2008 9:03 PM (GMT -6)
Just wanted to tell you that my husband was diagnosed June 06 with PSA of 49 and gleason 5+4=9 and was told surgery was not an option and he started hormone therapy and cassodex.  He is 58.  He feels good and knows he won't die an old man but we also do not sweat the small stuff so to speak and live each and every day to the fullest.  It isn't fair but hang in there and know that for the last 2 years we have lived 10!! 

Posted 8/19/2008 10:48 PM (GMT -6)
 To clarify he said they surgery could be an option but if he were me he would not do surgery because with a Gleason 9 there is probably involvement in the margins and surrounding tissue and even after removing the prostate I would still probably have to go through the radiation and hormone therapy, and the long term prognosis would be about the same. He is a surgen and does this every day and if he would not do surgery if he had the same diagnosis is somewhat convincing to me. Any comments on this would be welcome!

Conventional wisdom has  been that local treatment like surgery is not an effective treatment for PC which is no longer local or is at high risk of not being local, and there's often been a reluctance by some doctors to operate in these situations.

I always suggest anyone with high risk PC read the book by Dr Myers.  After reading his book and information published by Mayo Clinic where surgery and hormone treatment has been used for many years in certain higher risk and locally advanced situations, I can not agree with your surgeon's statement that long term prognosis would  necessarily be about the same.

Every case is different, but  their published data indicate that their approach provides a better outcome for certain situations.

 

Posted 8/20/2008 7:14 AM (GMT -6)
Just a quick note about me:

I was biopsied at a Gleason 7. Post surgery I was a Gleason 9 with a pT3a tumor, negative margins. Only 15% of my prostate was involved, so maybe they think you are beyond that point. But I was told by 3 different surgeons that they could not REALLY tell what was going on until they took the prostate out and diced it up.

In my very limited experience, it is unusual for a surgeon to say, "You are beyond surgery."

With a Gleason 9 and 12 positive samples, my uneducated advice would be to do something as soon as possible. With a Gleason 7 I was told not to wait more than 60 days.

There are some fantastic survival stories on this board. Do as much research as you can, and talk to as many doctors as you can. Good luck and...

Live on!
kcragman
Posted 8/20/2008 9:21 AM (GMT -6)
Just one more word about surgery not an option...as explained to us..a gleason 9 tells him that cancer has most certainly spread, let me do a lymph node biopsy to tell for sure...ok, now that is possitive he explains removing prostate would be so invasive recovering from such a surgery would not benefit the remaining years left.  That is what we were told and believe.

Posted 8/20/2008 2:22 PM (GMT -6)
Jack-
Sorry to hear about your dx, but happy that you found us at HW. You can see from the previous posts, this site is an incredible source of information and support. I hope you are able to draw both during your journey with PC.
The best advice that was given to me during this process was: "Cancer is gray, no black and white. Surround yourself with people you trust and make a decision you believe is best and don't look back".
Let us know how we can help and when you beat this thing, please stick around! Good luck with the scans this week!! You will be in our thoughts!!
Posted 8/20/2008 3:04 PM (GMT -6)

Wow, you folks are fantastic! Thanks for all the great information and advice. It gives me comfort to have found such a super resource.

I had my CT and Bone Scan today. Hope to have the results by Friday or Monday. Once these are in then I can begin to decide on a course of treatment.

I'll keep you all posted.

Jack

Posted 8/22/2008 9:16 AM (GMT -6)

As others are saying, education is essential at this point. In addition, I believe that the single most important thing is to find a doctor who specializes in dealing with prostate cancer. Talk with everyone you can and find out who is first rate in your part of the country. Look around for a urological center associated with a leading hospital or perhaps a university medical school. (Check their web sites. They like to publicize these things.) I'm in Pittsburgh and I was able to find someone who does nothing but prostrate related research and surgery. Read on this forum and look for the names of hospitals/centers that are highly regarded. When you find a place, call them on the phone and make an appointment to see one of their specialists. If there is a leading guru, ask to see him/her. Don't be shy or passive about this. At this moment in time, you need the best person available. That's what they're there for.

Good luck.

Posted 8/22/2008 10:07 AM (GMT -6)
Hi Jack,

Sorry to hear that you have joined the "club" that nobody wants to belong to, however it's not the end of the world and there are many treatment options available. Our cases are somewhat similar, I was biopsied because of a 4.7 psa up from 2.8 the year before. I was told by my Urologist that my gleason score after my biopsy was an 8 and that a majority of the core samples came back malignant. He recommended that I have something done soon as this appeared to be an aggressive cancer. I immediately had a bone scan which was negative and then contacted my new urologist who was a da vinci surgeon. After reviewing my information he thought I was a candidate for surgery. After the surgery the post op biopsy indicated a positive margin and seminal vesicle involvement and a gleason of 4+5=9. I was then referred to both a medical oncologist and a radiation oncologist. My med oncologist recommended HT immediately then radiation as soon as I became continent. This took around 3 months after surgery and I was zapped with 35 IMRT treatments. Since that time I suppose you could call it that I am in remission as my psa results have been considered undec
table since finishing the radiation. I am glad that I had the surgery as it at least confirmed what the original biopsy indicated, aggressive disease. I now know that the source of the cancer is gone and that the adjuvant treatment is working on what remnants were left. I have one more year of HT treatment then hopefully many more years of undectable psa scores. I wish you luck with your choice of treatment....keep your chin up!! JWB
Posted 8/22/2008 12:53 PM (GMT -6)

Hi there

Sorry you have to be here but you have found a great support system full of the most caring people :)

As you might see from my signature, my husband was diagnosed just over a year ago with a gleason of 8. His bone scan showed it had spread to neck, ribs, pelvis etc etc and seminal vesicle - he was told surgery wasn't an option either

Like you, we were in total shock. He was given hormone treatment only

One year later and he is doing fine! Nobody would know there was anything wrong with him, he continues to work at a very physical job and, apart from the odd hot flush, has no side effects at all

Of course the cancer is always at the back of his mind, and every little ache and pain makes him wonder if there is a problem, but his nurse has cut his visits to the hospital from three months to six months

Please know that even if your scan is not good (and I hope that it is good), there is plenty of hope, especially with the recent breakthrough in drugs aimed at prostate cancer.

Wishing you very best wishes

Julia

Posted 8/22/2008 7:11 PM (GMT -6)
I to am a gleason 9 and believe me there is life during and after treatment. It will change your life drastically but let me say this it also brings things into focus. I do not believe that just because you are a gleason 9 that your cancer has spread outside the prostate. Don't wait forever, but by the same token do not rush into a decision uninformed. Whether surgery is or isn't an option there are still plenty of choices available. please keep us posted as to how you feel and any questions you may have.

peace and love
Dale
Posted 8/22/2008 8:04 PM (GMT -6)

Feeling a bit frustrated today!

I went for my CT and Bone Scan on Wed. 8/20 and was told to call today to have my results today reviewed. I called the doctors office and got the answering service. They said the doctor decided to close the office today and will not be back until Tuesday 8/27! Unbelieveable! I asked if the doctor could be reached....no I'm told.

Now to add fuel to the fire I had my biopsy on 7/29 and I was told several times my the doctors "girl" that it takes two to three weeks to get results. Well, I got my biopsy report and the report was delivered to the doctor on 8/1. With a Gleason 9 the office made me wait until 8/19 to tell me the results! That has to show how little this guy. Clearly I'm not putting my life in his hands care

Well he's out...fired...good by!!!

A friend of my wife had PC three years ago and he called me with a doctor he used and loved. I called him today and his office was appalled when they heard the long wait to get the biopsy and then no response today to my CT and Bone Scan. They scheduled me for an appointment on Tuedat 8/26 and will call the hospital where I had the scans done and have them sent to their office. They were just wonderful to deal with. The doctor Dr. Scheuch is the co-chair of the Cancer Center at Hackensack University Hospital and is a robotic surgery expert as well.

So...I'll post here on Tuesday with the results of the tests and his recommendations for therapy.

Again thanks to everyone for your great advice and support.

Jack

Posted 8/22/2008 8:51 PM (GMT -6)
Go , Jack, Go!!!
I cannot believe the way you have been treated so far - glad you fired him.
If it were me, I would make sure you tell him you are firing him and why!!

Good luck, there are many here who can and will help.
I'm one on the young pups around here, but been through a lot that I don't mind sharing....

Good luck and let us know how it goes next week.
Posted 8/22/2008 10:11 PM (GMT -6)
You have every right to be frustrated and it sounds like you are on a better path.  Unfortunately, you had to learn the hard way that you have to be your own advocate with this disease. It does get exhausting, but it is worth the fight. Good for you for taking the bull by the horns and best wishes for good news on Tuesday.  It sounds like you will be in better hands.  Have a great weekend!

Posted 8/23/2008 3:05 AM (GMT -6)
Often I think that these doctors and their office staff see so many patients that they seem to disengage from the patient as a person. You would think that after years of dealing with people with a cancer diagnosis, they would be well aware of the common concerns and anxieties that we all have at one time or another. Instead many seem to adopt a laissez-faire attitude to the anguish patients may feel. I simply do not understand it. It is important that you have confidence and a rapport with your doctor and their staff and that you are shown the respect you are due.
Bill
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