Age 55 w/ Gleason score of 9 - Latest Update

Kongo said:

Welcome
Welcome to the forum but I am so sorry to read about your diagnosis of a Gleason 9 prostate cancer on top of all the other troubles you've encountered.

As your doctor undoubtedly informed you during your initial consultation, a Gleason 9 cancer is very serious. It's normal to go through the battery of imaging exams you received but even with such an advanced diagnosis they frequently fail to find imaging evidence of the spread of prostate cancer so soon after it is initially detected.

Even without imaging evidence of metastasis, I would strongly suspect that your cancer is not contained entirely within the prostate. There may be some clues to this in your biopsy report. Was there any mention of PNI or extra capsular extension? Something else that I would look for in your biopsy report is the type of cancer you have. Adenocarcinoma is the most common form of prostate cancer and is usually rather slow growing, particularly in a man your age. Given the apparent rapid onset with quickly rising PSA I'm wondering if another, more aggressive form of prostate cancer was detected.

Certainly you want to hold off on any treatment choice until your medical team has the opportunity to review your CT and bone scan. If there is evidence that the cancer is not locally contained (and it's hard to imagine that it is with a Gleason 9) removing the prostate will not do anything to slow the growth of prostate cancer elsewhere in your body. At the end of the day, it is not cancer in the prostate that kills us but prostate cancer that has spread to other organs like the bones, liver, lungs, and so forth. In other words, why remove the prostate if it's not going to stop the spread of cancer?

Ask you doctor about the likelihood (he should be able to cite statistics to you) of recurring cancer in a Gleason 9 patient after RP. My impression is that eventual recurrence is almost a certainty. When this occurs you are going to face other treatments such as hormone therapy or radiation treatment or both. You will also have to deal with the potential side effects associated with surgical removal of your prostate in the areas of erectile dysfunction and urinary incontinence in addition to any side effects that will occur with radiation and hormone therapy.

You might also want to talk to your doctor about any medical trials underway for initially diagnosed advanced prostate cancer patients.

You have some very tough choices ahead of you as you learn the extent of your diagnosis and the available options to treat it. Best of luck in sorting out a way ahead that works for you. Please keep us up-to-date on your progress.

K

dwhite1031 said:

Update to update :-)
Feeling progressively more fatigued each day as well. But with my iron, platelette, & red cells levels dropping, I don't know if it's that, the PCa, or depression. I barely get thru a day at the office and when I get home, I just want to sleep. Asked this question during Hematologist visit yesterday since he is also an Oncologist, and he feels it's the PCa causing it & not my blood levels.....sometimes I wonder...are they just guessing?

Samsungtech1 said:

Fatigue
Dwhite,

Been there with fatigue more than once. For the most part I would say depression. What's worse is that most dr.s are guessing just as mucg as you. I use to stop taking my new meds to see it that was it, but basically depression will knock you out. I would be so sleepy by 2:00 that I could hardly stay awake. When I got off work I wanted to sleep. Funny but I would start coming out of it around 7:00 or so.
Have you discussed this with your doctor? Understand that just because they prescribe a medicine that does not mean it is the right one. You need to sound off if it does not feel right. Do not wait. They are guessing and you are the only one who knows if they got it right. Do not expect miracles, just know you should feel better and not tired all the time.
I am dealing with changing meds. Eventually, when you have multiple things wrong it is hard to decide exactly what is doing what, but if you are tuned to your body you can figure it out.

Good luck,

Mike

jmikew said:

Good luck and hang in there
First let me say how very sorry I am that you have to go through this....It is no fun but hang in there...there are better days ahead...I am 50 and underwent robotic RP at MD Anderson about 4 weeks ago....What I thought was a moderately aggressive cancer (3+4) turned into a very aggressive cancer after the pathology report...(4+3+ some 5) so you don't really know what you are dealing with...and while I might have done things differently based on this knowledge I didn't have that chance...I did read this article after the fact that gave me some comfort...it is about surgery improving survival rates for aggressive prostate cancer.

http://www.medicalnewstoday.com/articles/202732.php

I am very new to all of this so please don't base any decisions on my comments...but I do think knowledge is power as is a good doc...we both have a long road ahead...but I have a 6 year old daughter that I need to be around for...and that's my plan...I wish you all the best and you will get some great feedback from people here....hand in there my friend.

dwhite1031 said:

Back from MD Anderson
We just returned from the MD Anderson Cancer Center.  Everyone was great and though it was non-stop since we arrived late last Sunday, it was worth it. We have seen more doctors, nurses, technicians, and such in the past 5 days than I've seen in years.  LOL!  Everyday we have had to arrive at 6:30 am and have gone to about 4:00 or 5:00 pm everyday as well.  Exhausting.....
We were at the MDACC Mays Clinic and our primary clinic is the Genitourinary Cancer Center.

We have learned a lot they weren't able to tell us in here at our home medical facilities, not to imply negativity with regard to my local doctors, they just have so many more resources here at MDACC.  After Monday's initial consults, and a day full of exams and tests Tuesday, we were told the cancer is more advanced than we initially thought.  What we didn't realize and the doctors explained to us, is that even with surgery and with cancer shown to be localized in CT's and bone scans, it can be still present on a cellular level throughout the body and the cancer continues to grow and recurr.  That was a "bummer", but the treatment plans we were presented with has reassured us both of a positive outcome.

Also, my doctors told us that my clinical stage puts me in a group they want to study and asked us to consider my being be part of a clinical trial, since MDACC is a research facility as well. That was a no-brainer for us because if it will help with their research and other people someday, then of course we're all in and it reinforces our belief that we were indeed led here. 

The clinical trial is to study a new drug called Zytiga.  Patients are "randomized" into Group A or B. With each under a different protocol. "A" gets Zytiga, steroid, Lupron and surgery. "B" gets Lupron alone and surgery.  Both groups then get radiation and/or another form of chemotherapy if necessary. Zytiga has been proven to be successful in this type of cancer that has become resistant to other treatment, or has spread after surgery or without surgery. They want to see if it in combination with the other drugs prior to surgery will be beneficial.  Kind of using the drug proactively rather than reactively as it is used now.  Doctor said Zytiga is $6000-$7000 per dosage round, HOLY COW!.........but the drug company pays for that under the trial. 

The last two days at MDACC were comprised of tests to see if I meet the criteria for the clinical trial. So it's been scans, labs, more scans with names I can't begin to pronounce, more labs, a very "interesting" MRI, and an some X-rays thrown in for good measure.  :-)
We were told the last morning here that I did meet the criteria but the randomization placed me in Group "B".  We are of course disappointed I didn't get in Group "A" where I'd be getting the drug that may give me that "edge", but it's a random draw and I'm still part of this trial that can help other people & their research! So we're blessed to be a part of that!  I've also consented to be part of two other clinical trials where they will use surgery pathology samples from me in other research, so that's a good thing too!  We have to come back once a month for a couple of days each time and then surgery in December, and then more treatment.

dwhite1031 said:

Back from MD Anderson
We just returned from the MD Anderson Cancer Center.  Everyone was great and though it was non-stop since we arrived late last Sunday, it was worth it. We have seen more doctors, nurses, technicians, and such in the past 5 days than I've seen in years.  LOL!  Everyday we have had to arrive at 6:30 am and have gone to about 4:00 or 5:00 pm everyday as well.  Exhausting.....
We were at the MDACC Mays Clinic and our primary clinic is the Genitourinary Cancer Center.

We have learned a lot they weren't able to tell us in here at our home medical facilities, not to imply negativity with regard to my local doctors, they just have so many more resources here at MDACC.  After Monday's initial consults, and a day full of exams and tests Tuesday, we were told the cancer is more advanced than we initially thought.  What we didn't realize and the doctors explained to us, is that even with surgery and with cancer shown to be localized in CT's and bone scans, it can be still present on a cellular level throughout the body and the cancer continues to grow and recurr.  That was a "bummer", but the treatment plans we were presented with has reassured us both of a positive outcome.

Also, my doctors told us that my clinical stage puts me in a group they want to study and asked us to consider my being be part of a clinical trial, since MDACC is a research facility as well. That was a no-brainer for us because if it will help with their research and other people someday, then of course we're all in and it reinforces our belief that we were indeed led here. 

The clinical trial is to study a new drug called Zytiga.  Patients are "randomized" into Group A or B. With each under a different protocol. "A" gets Zytiga, steroid, Lupron and surgery. "B" gets Lupron alone and surgery.  Both groups then get radiation and/or another form of chemotherapy if necessary. Zytiga has been proven to be successful in this type of cancer that has become resistant to other treatment, or has spread after surgery or without surgery. They want to see if it in combination with the other drugs prior to surgery will be beneficial.  Kind of using the drug proactively rather than reactively as it is used now.  Doctor said Zytiga is $6000-$7000 per dosage round, HOLY COW!.........but the drug company pays for that under the trial. 

The last two days at MDACC were comprised of tests to see if I meet the criteria for the clinical trial. So it's been scans, labs, more scans with names I can't begin to pronounce, more labs, a very "interesting" MRI, and an some X-rays thrown in for good measure.  :-)
We were told the last morning here that I did meet the criteria but the randomization placed me in Group "B".  We are of course disappointed I didn't get in Group "A" where I'd be getting the drug that may give me that "edge", but it's a random draw and I'm still part of this trial that can help other people & their research! So we're blessed to be a part of that!  I've also consented to be part of two other clinical trials where they will use surgery pathology samples from me in other research, so that's a good thing too!  We have to come back once a month for a couple of days each time and then surgery in December, and then more treatment.