Age 55 w/ Gleason score of 9 - Latest Update

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.

I had a high PSA test one year ago, after a biopsy was performed I was diagnosed with PC.  They rated it G8, with a T1c rating on the tumor.  I hadaradical prostatectomy operation last August and the post op biopsy gleason score was raised to 9.  But this was all of the bad news.

Good news now is that they considered it localized still to the prostate, with no nodes extruding, no detected occurance in a selection of lump nodes, and negitive on the bone scans.  All good news.  Now I have to live with the shadow, every three months of testing hopefully will remain negative.  There are happy stories out there though, do not let it over shadow you living with the stress.

I opted for the surgery, as they looked at this option as a cure of the cancer, and am glad of my decision on this.  It is a very personal choice though, and what ever you choose, do not have regrets.  I have done various readings and research on different things, from marijuana usage, to different diets, to restricting my chemical exposure in everyday living.

I think all have merts and at worst can not hurt but in the end, I live as I did, with the shadow now, but I do not let it rule my life.  Hope yours turns out well for you.  I did find that having support can be the biggest factor in having a less stressful continued life.

cheers,

Hi I am wondering, if anyone who posted here 5 years ago did survived this cancer?

I am in a horrible situation just came from urologist office diagnosed with prostate cancer (Adenocarcinoma) right lobe score 9 (4+5) and left G score 8 (4+4).  Will do bone scan soon.  I am 51 year old with 2 children...scared and shaking....

Hope someone is cured out there in this group!!!

Ralph

Yes there are guys that survive the more aggressive cancers for many years. With the newer treatments and earlier detection (even in your case) outcomes are getting better. If you want hard number you can input your stats into the MSK formulas to get an idea on average, where you stand but keep in mind that those outcomes are averages and by definition are based on older studies with older treatment modalities. I personally know of a man with metastatic disease going on 15 years. The key for you is the best possible diagnostic information and the best doctors and facilities that you have access to. MSK, JH, Mayo, UCSF, MDA, etc. 

for those reading this older thread I have a couple of comments. Scans are very common to rule out obvious metastatic disease early on as that would change the best options for you. With the current state of imaging, even the best that we have, it is common to find nothing until PSA has progressed to double digit numbers and beyond even with primary treatment failure. Regardless of conversations about micro metastasis and so on, clear imaging is still better than the opposite  and higher Gleason scores are less good than lower but not the end of the line. While it is natural to be fearful upon diagnosis, get to a proactive place as soon as possible because your best possible outcome regardless of your starting point will come from:

a positive and constructive attitude

a connection to your spirituality or religion

support here and elsewhere

removing toxicity from your life

education about you cancer and treatment options

using the best doctors and facilities that you have access to. I didn't relish surgery five states away or eight weeks of radiation 3 hours a away but I wanted the best chance at cure or significant delay.

living life as fully as possible every day

in the end fear and the five stages of grief are natural starting points but the best process forward is acceptance, balance and constructively working the problem. Cancer and other death defying problems are overcome every day. Those that overcome great adversity have a different attitude and process than those who succumb to it. Life is not about being dealt good cards, it's about playing the hand you are dealt very well. Imagine being cut from your rope to save the rest of the guys on the line when an Everest climb went bad only to fall hundreds of feet into a crevasse and being left for dead in the most brutal weather on earth. That real guy dragged himself with two broken legs down the mountain to the safety of a staging camp under the most terrible odds imaginable. I figure if that guy can beats those odds, I better get to work stay focused And even if I can't get to the best possible outcome, I will go through the process with the most grace as I can not only for me but the ones around me.

all the best,

George