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Old 11-30-2011, 03:49 PM   #1
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Just got diagnosed - Gleason 8 (4+4)

I guess I hit the jackpot!

In 2008 I had a PSA of 1.10, and then up to 1.80 in 2009, and then 3.40 in June 2011. Although my doctor didn't advise, I pushed for a TRUS since my father was diagnosed with Prostate Cancer at 53 (I am 53). The results came back this week and I was told I have cancer, with a Gleason of 8.

Who is this guy Jackie and what's a Gleason? I've done some reading last 24 hours and I now have a better idea of what I am up against, and I'd be lying if I said I'm not scared. My Dad died when he was 64 (he survived for 9 years after prostate cancer, but lung cancer ultimately claimed his life), and I lost my eldest son to brain tumour when he was just 9.

I guess I have cancer in the family genes. What can you do.

I go for a bone scan next week, and then a CT scan of the lower pelvis in two weeks. If they both come back negative the doctor wants to operate, and I'm being asked to consider participating in a clinical trial called "A Randomized Phase III Study of Neo-Adjuvant Docetaxel and Androgen Deprivation Prior to Radical Prostatectomy versus Immediate Radical Prostateectomy in Patients with High-Risk, Clinically Localized Prostate Cancer,

I guess I have some work to do.

 
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Old 12-01-2011, 11:07 AM   #2
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Re: Just got diagnosed - Gleason 8 (4+4)

Hi 2229,

Welcome to the club that no one really wants to belong to.

You are not alone though. I too have a gleason 8 cancer and there are a few other people that hang around this board that are in the category of 8-10. It's not a nice place to be but there is nothing we can do about it except fight it as best we can.

I had a radical prostatectomy in 2005 and the cancer returned in 2008 and I went through salvage radiation, which finished in Mar. 2009. Since then ( 32 months ), my cancer is undetectable. You might be asking yourself why I say that I still have a Gleason 8 cancer when so far it's been undetectable after the salvage radiation. Unfortunately if you are in the Gleason 8-10 category, there is a very strong chance there will be a recurrence. My oncologist where I had the treatment told me that in this category there is only a 25% chance of a cure. Not good odds.

I also lost my oldest son to brain cancer, but he was much older than your son. Sorry to hear about your young fellow.

I hope everything turns out okay for you and please keep us informed as to how you are doing. Everybody on this board is here to support everyone else who has to endure this insidious disease.

Good luck....Lionel

 
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Old 12-01-2011, 11:17 AM   #3
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Re: Just got diagnosed - Gleason 8 (4+4)

Thanks for your reply Lionel. Very sobering. I better look up "salvage radiation" to see what that means. If you don't mind me asking, where did the cancer return to after the prostate was removed?

 
Old 12-01-2011, 01:50 PM   #4
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Re: Just got diagnosed - Gleason 8 (4+4)

I too am 53 and was diagonosed with 4+4 on April Fools Day 2011 (of all days). After the initial shock, I did my research. I chose the Radiation/Hormone Therapy route with a clinical trial of chemo therapy at the end. So, first I had 25 EBR Treatments, then had Bracheatherapy, and I just finished my 4 chemo treatments yesterday. I felt great through the radiation portion with no side effects. Chemo was not bad. I did lose my hair and felt tired ocassionally. But was still able to workout regularly. Now that the primary treatment is complete (except for the 2 years of Hormone Therapy), it is wait and see... as would be the case with any course of treatment.

I opted for this course of treatment over surgery for two reasons: First, I was told that no matter which course of treatment I chose, they all had similar outcomes or similar prognosis of cure. Second, since the outcomes were the same no matter which treatment, I chose the least invasive approach which would give me the best chance of sparing incontinence and ED. So far, so good on BOTH of those even with Hormone Therapy.

My advice: Take your time and get a second or third opinion. Also, make sure the Gleason Score is correct. Have that evaluated again by a specialist. Another piece of advice I recieved, and I found it sound: consider going to a "not for profit" facility for your treatment. I went to a university hospital for my second opinion and found them to be more direct and forthcoming about what course of treatment I should consider. In addition, the non-profits, I belive, have greater access to clinical trials. Not 100% sure about that, I heard it 2nd hand. Regardless, I have been very satisfied with my treatment program. Do not make any quick decisions. Research all of your options first.

 
Old 12-01-2011, 08:47 PM   #5
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Re: Just got diagnosed - Gleason 8 (4+4)

Assuming your PC has not traveled beyond the local area of your prostate, there is a lot of controversy over whether prostatectomy is a good idea in men with high risk features like yours. The reason for the controversy is that RP by itself is often ineffective and must be followed up by radiation therapy (either adjuvant (now) or salvage (later)) -- so why not just have radiation therapy in the first place? especially since it is less toxic than RP plus salvage RT, and the results are at least as good.

If you decide to consider radiation, often a couple of months of neoadjuvant hormone therapy is given prior to radiation therapy -- it has been shown to increase the effectiveness of the radiation in high risk cases. The radiation therapy may include something like IG/IMRT (or CyberKnife, which is now becoming available in Canada) to the entire area around the prostate with a high dose rate (HDR) brachytherapy boost to the prostate itself (a LDR brachy boost is a possibility too). I think HDR Brachy is now available at the University of Toronto (where in Canada are you?).

You may want to enter your biopsy results into the MSK nomogram to see what your risk is of locally confined disease, recurrence following treatment, etc. They are just statistical averages, so keep in mind that a lot of men do better than that, especially with today's updated treatments.

There are many highly regarded Radiation Oncologists in Canada -- I suggest you talk to one before you reach your treatment decision.

- Allen

 
Old 12-02-2011, 07:02 AM   #6
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Re: Just got diagnosed - Gleason 8 (4+4)

Quote:
Originally Posted by BLuds View Post
My advice: Take your time and get a second or third opinion. Also, make sure the Gleason Score is correct. Have that evaluated again by a specialist. Another piece of advice I recieved, and I found it sound: consider going to a "not for profit" facility for your treatment. I went to a university hospital for my second opinion and found them to be more direct and forthcoming about what course of treatment I should consider. In addition, the non-profits, I belive, have greater access to clinical trials. Not 100% sure about that, I heard it 2nd hand. Regardless, I have been very satisfied with my treatment program. Do not make any quick decisions. Research all of your options first.
Thank you for sharing. The more I read the more confused I get. This looks like a full time job, so I better quit my Day Job and spend more time researching my predicament. I am in Canada so not sure where to go to have my Gleason confirmed. I asked my doctor and he said not to second guess it as the "best of the best" evaluated my tissue sample. Also, being in Canada I don't think we have University Hospitals I can access. I went to my regular doctor yesterday to tell him what is going on, and I asked him if he could connect me with another prostate doctor for a second opinion, and he said that was not a good idea as it would take 3 months to see one. I think I'm stuck.

Last edited by theweb2229; 12-02-2011 at 07:08 AM.

 
Old 12-02-2011, 07:19 AM   #7
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Re: Just got diagnosed - Gleason 8 (4+4)

Thank you TA.

I am in Toronto and I've been assigned to a Dr Alexandre R. Zlotta, Director of Uro-Oncology at Mount Sinai Hospital.

If my bone scan and CT scan come back negative, I believe his approach is a RP followed by radiation. That's what he told me, but he was brief as I guess doesn't make much sense to discuss options until we know if it has spread. I'm not sure how I go about talking to a Radiation Oncologist, but I'll dig and figure it out.

 
Old 12-02-2011, 01:04 PM   #8
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Re: Just got diagnosed - Gleason 8 (4+4)

Unfortunately, it is a truism with prostate cancer that specialists almost always recommend only what their specialty is: urologists recommend surgery, HDR brachytherapists recommend HDR brachy, CyberKnife specialists recommend CK, proton beam therapists recommend proton, etc. Therefore, it behooves us to gain an understanding of all the appropriate therapies that may apply to our particular case.

While I can't recommend a particular doctor in Toronto, I can share with you the method I use to find them. The way I look for doctors is I do a pubmed search for research conducted on the particular disease and treatment I am interested in learning about, and also the city that the researchers are in. Doing this in your case, I notice that several names keep popping up as leading investigators of cases like yours.

Many seem to be at the Odette Cancer Centre of the Sunnybrook Health Sciences Centre: Drs. Gerard Morton, Cyril Danjoux, Andrew Loblaw, and Patrick Cheung.

At Princess Margaret Hospital, my search technique came up with the following names: Drs. Juanita Crook, Neil Fleshner, Robert Bristow, and Padraig Warde.

I have no personal knowledge of any of them, but it may be a good place for you to start to see if you can get a timely appointment.

I think your doctor is right that if there is evidence of metastases, it will change the treatment plan. However, hormone therapy begun soon is probably a prudent first step no matter what treatment plan eventuates.

- Allen

 
Old 12-03-2011, 08:20 AM   #9
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Re: Just got diagnosed - Gleason 8 (4+4)

Quote:
Originally Posted by theweb2229 View Post
Thanks for your reply Lionel. Very sobering. I better look up "salvage radiation" to see what that means. If you don't mind me asking, where did the cancer return to after the prostate was removed?
Hi 2229,

To answer your question, it would seem that the cancer was still in the area of the removed prostate. My radiation concentrated on that area and then the last several treatments focused more directly on the prostate bed, where an MRI showed an area that looked suspicious.

I have read on the internet that there are some doctors that feel if a Gleason 8-10 cancer returns, there isn't much point in doing any further radiation, because they feel that it would probably have gone somewhere else and is incurable. I'm glad I didn't have any of those doctors!

I have been going to the Juravinski Cancer Centre in Hamiltion ON ( about an hours drive from where I live ) and I have been pleased with the level of expertise that I found there. I had my prostate removed by a doctor in Niagara Falls, who is considered to be one of the best urologists in Ontario. He didn't push for any particular kind of treatment, but he gave me a book to read all about prostate cancer and the different types of treatment and let me make up my own mind. I checked in Toronto for a good urologist, thinking that a city like Toronto would have the best and I was told " Why would you come to Toronto when you have one of best urologist available in Nia. falls?"

When the cancer returned, he sent me to the cancer centre in Hamilton. The doctors there are top-notch and I can't say enough good things about them.

After I had salvage radiation in the pelvic area, the cancer became undetectable as I mentioned and has been that way for 32 months now. I know that my chances for a cure are only about 25%, but my oncologists keeps reminding me that he has had paitients that are now in their 20th year after salvage radiation and they were Gleason 8-10 as well.

I hope this gives some encouragement and I'm sure something else to think about!

Take care....Lionel

 
Old 12-09-2011, 07:28 PM   #10
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Re: Just got diagnosed - Gleason 8 (4+4)

2229,
I'm recovering from LRP surgery right now, surgery was on December 1st. My Gleason was also 4+4, my psa was 6 and I was a T1c.

I met with my Urologist/Surgeon today to have the catheter removed and go over the final pathology report. My Gleason score was changed to a 7 with negative margins, doctor said all contained to the capsule.

I have no regrets so far with my choice and I like the idea that the prostate was able to be looked at again after it was removed.

Good luck with your decision, I did lot's of searching and was able to talk daily to a friend my same age that had the same surgery this past August. It's good that there are choices!

Jeff

 
Old 12-09-2011, 07:42 PM   #11
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Re: Just got diagnosed - Gleason 8 (4+4)

Jeff,

Congratulations on your successful surgery, negative margins and the downgrading of your Gleason score, and I wish you an uneventful and quick recovery of all functions.

Your Gleason score downgrade serves as a reminder to us all that we should get a second opinion on our biopsy from a lab that specializes in that. While it might not have affected your decision, some men might have chosen different treatments based on that, so it's good to have the correct information beforehand.

- Allen

 
Old 12-10-2011, 06:03 AM   #12
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Re: Just got diagnosed - Gleason 8 (4+4)

Quote:
Originally Posted by abc40kids View Post
2229,
I'm recovering from LRP surgery right now, surgery was on December 1st. My Gleason was also 4+4, my psa was 6 and I was a T1c.

I met with my Urologist/Surgeon today to have the catheter removed and go over the final pathology report. My Gleason score was changed to a 7 with negative margins, doctor said all contained to the capsule.
Jeff
Thank you for the feedback abc40. I wish you continued success. It will be two weeks this coming Tuesday since my diagnosis, and things seems to be moving sloooolwly. I'm pushing hard to move things up. I did have my bone scan and I am meeting with my urologist and oncologist early next week. I will have the results of my bone scan on Tuesday. I am also meeting a Naturopathic doctor to radically change my nutritional intake. There's been talk of cleansing, colonics and coffee enemas. Not sure if anyone here has done anything like this?

I managed to talk to the pathologist at PMH about my biopsy results which in itself was a miracle as she normally does not talk to patients directly. I asked her if there was any chance she made an error and she replied emphatically "no" (what else would she say). I guess I'll need to start pushing harder although it really seemed to irk my urologist when I asked if we should get a second opinion. The response I get each time is that I will only slow things down if I continue to ask for second opinions as it takes time (weeks/months) to meet specialists.

 
Old 12-10-2011, 07:42 AM   #13
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Re: Just got diagnosed - Gleason 8 (4+4)

2229,
I would agree the first couple weeks were the hardest, I was diagnosed on a Friday and all weekened I couldn't get passed that 4+4 Gleason score and finally I stumbled up on a website that combined psa, gleason, and clinical stage to give the final grade.

I also wondered about a second opinion, not with my urologist but the pathologist. I wasn't trying to rush things but wanted to move forward as soon as I was comfortable with a form of treatment. I met with a radiologist that was wonderful in explaining pc based on my stats. I found talking about my diagnosis was very helpful in keeping my positive attitude and making my final decision. I wasn't looking for sympathy when I told someone, I was looking for everyone I could that could share their experience with me and I was blow away by the number of people that kept popping up that said I've been down that road already.

For me the sooner the better and I made every appointment as soon as I could and when it came time to schedule for surgery I asked for his next appointment which was like 6 weeks out. From the time of diagnosis till the day before surgery I was reading, talking to people, I had 2 apps on my phone with the latest information.

Ultimately what got me thru this was a very positive attitude, VERY comfortable with my urologist who also did the surgery and the group of people he put around me to answer any questions. Also very important was my wife, family and friends all rallied behind me and prayed for me everyday. My family(wife & 3 kids)were my driving force to get passed this as soon as possible. I think the first 2 weeks thats all I thought about was my kids.....I have to be around for them!

My urologist told me final pathology showed the tumor larger than he exspected and was on the move! Your young like me and have several options. For me it was better to move quick and hit this diease head on asap!

Sorry for the long post, good luck with searching out which treatment suits you and your family. If I can help in any way just let me know!
Jeff

 
Old 02-09-2012, 12:29 PM   #14
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Re: Just got diagnosed - Gleason 8 (4+4)

Sorry for not writing sooner. So much has happened since my last writing. I spent Christmas holiday in Hollywood Fla with my wife and son trying to stay grounded as my surgery approached. I gave up all alcohol (was a daily red wine drinker) and began to eat better, reduced red meat inputand focussed on organics. I have no scientific proof that organics help, but emotionally they made me feel better. I needed to improve my diet regardless.

My radical prostatectomy took place Jan 26/12 (two weeks ago today). The few days leading up to the surgery felt like a death sentence. Instead of embracing the notion that the surgery was going to save my life, I felt the opposite. Just the thought of surgery scared the life out of me. If I could turn around and run away I would have....

The surgery was unremarkable and I am waiting on pathology. Overall I feel good, but I did underestimate the annoyance of the catheter and J-drain. The drain wasn't installed properly and was pulling fluid from my bladder. I think they rectified it with a small adjustment. I began to experience spasms from the catheter 4-5 days after surgery that were debilitating. They've subsided somewhat but still happen daily. I have another week with the catheter before they remove. Not sure what else to report. It's been a blur since original diagnosis November 29.

 
Old 02-09-2012, 06:02 PM   #15
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Re: Just got diagnosed - Gleason 8 (4+4)

I know your glad the surgery is over and hope the best for you on the final pathology report. I was straight up scared to death to leave the hospital with that catheter, I was so scared I would move the wrong way and have problems.

I was on bladder spasm medicine when I went home and was told to use all that was given to me which lasted two weeks. I never had the first spasm, are you taking and spasm meds.?

Big relief when the catheter comes out, I felt like a free man! I'm very satisfied with the outcome, still nervous about my blood test thats only a few weeks away. Hope your recovery continues to get better daily, stay in touch. Jeff

 
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