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Welcome new member Restofmine: Newly diagnosed G9 looking at options

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Prostate Cancer
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Posted 8/21/2014 10:50 AM (GMT 0)
Found a first post by a new member. Starting a new thread for him so folks can say hello.

restofmine said...
My first posting. I'm still deep in the woods. Four of my cores were cancerous, a 6,7,and two 9's. One 9 was 4/5 the other was 5/4. My highest PSA was 4.4. DRE found a hard spot near the apex. I also had a low grade bladder cancer which was removed, they tell me not to worry about that at this time. My first thought was to get that thing out fast. I scheduled my robotic surgery at KU Med Ctr for September 8th. I decided to go to John Hopkins for a second opinion on treatment. Dr. Alan Partin advised not to remove the prostate as with my numbers as I would require radiation anyway. He put that requirement at 100%. That gave me a jolt. This just occured yesterday. I have made an appointment with a Radiation Oncologist for September 10th and have no idea what I am facing. I was told at JH that I would need 8 weeks of radiation and possibly hormone therapy. Chemo was a maybe. I thought removing my prostate was going to cure me now I'm concerned that I am in for a much more complicated treatment situation.

_______________________________________________________________

DOB October 1942

Prostate biopsy June 2014

Bone Scan June 2014 - no outside cancer found

Post Edited (PeterDisAbelard.) : 8/21/2014 4:58:39 AM (GMT-6)

Posted 8/21/2014 11:12 AM (GMT 0)
Hello Restofmine. Welcome to the forum. Sorry you need to be here but glad you found us. Hope we can help

Hopkins is one of the best institutions in the world for Prostate Cancer so you are probably on the right track. From what you have told us your JH doctor's suggestions sound spot on. With surgery a cancer in the apex tends to increase the chances of side effects such as incontinence and impotence. Also, the usual rule of thumb is that radiation is a better choice than surgery for most men over 65. They don't recover as quickly as younger men do and radiation can offer similar results with fewer side effects.

The radiation/hormone combination has quite good results and the treatments are usually well tolerated. The usual side effects that men mention for radiation are fatigue and hemorrhoids. The side effects of the hormones kind of suck but most of them can be offset with exercise. The addition of chemo to the mix isn't part of the usual standard of care but with the results that patients are seeing with it, perhaps it ought to be.
Posted 8/21/2014 12:54 PM (GMT 0)
Welcome Restofmine. Good call on the second opinion. Most patients want the cancer cut out and then be done with it. But as you probably already know, surgery will not be successful unless the cancer is completely (or mostly) contained with in the gland. You are going to have a lot of treatment options and that is good, but can be confusing. Especially, you will see not all Dr.s will agree on your best path, so you have to be your own advocate. That is where maybe we can help you find all of your options, so YOU can choose what is best. Keep in mind, we are not Dr.s, but just patients who share experiences and knowledge. You will also find some very knowledgeable members on here that sometimes amaze me and hopefully you also. Welcome and good luck!
Posted 8/21/2014 2:01 PM (GMT 0)
Restofmine,
Welcome to the forum. I trust you'll find some good information here. I wanted to be sure you check out the thread devoted to the Gleason 9 crew, started by Redwing and which can be found no more than about a dozen entries below this one. Entries in the forum appear chronologically, and you should be able to find the Gleason 9 Crew thread's last post at 10:31 p.m. last night (Wednesday, Aug. 20th).

I'm pretty sure you'll find some really good info there.

Best of luck to you as you work your way through the difficult options that will be presented to you as you make your way through the prostate cancer morass.
Posted 8/21/2014 2:57 PM (GMT 0)
AS a fellow G9 in my case (4+5), have you had any bone scans done to confirm or deny bone metastasis? The answer will determine the range of radiation options you have.

I would recommend a team of doctors approach, your urologist, your new radiation oncologist plus a medical oncologist who specializes in Pca. The latter has no vested interest in surgery versus radiation and can be the quarterback of your team, but you reserve the right to overrule whatever plays he calls.

You will likely start out on hormone therapy and the Lupron or comparable drug is tough on your cardio metrics. So keep your cardiologist in the loop. Next comes either Xgeva or Prolia to prevent so called adverse skeletal events like spinal compressions and bone fractures. But before you take them, make sure your dental work is up to date as tooth extractions while on Xgeva can sometimes cause a lockjaw type symptom.

Good luck and keep us posted ere and on the G9 thread Redwing started.

www.healingwell.com/community/default.aspx?f=35&m=2863652

LupronJim
Posted 8/21/2014 3:04 PM (GMT 0)
My first PSA , at age 52, was a 511, two weeks later I'd had another opinion and PSA, 495, bone and CT scan and was told surgery was out of the question after the 12 core biopsy showed 12 out of 12 positive and a Gleason 9. They put me on Lupron and Casodex which lowered the PSA to 2.3. All the rest is in my signature. Welcome to one of the most informative PC boards around . . . Q
Posted 8/21/2014 4:37 PM (GMT 0)
I was too high risk for surgery with high PSA. I have been successful with Hormone Therapy (ADT3), External Beam radiation and High Dose Rate Brachytherapy. Many studies show in the intermediate and high risk cases that radiation therapies are better at controlling the cancer and have fewer and generally less severe side effects than surgery. It sounds to me that you are getting great advice from your second opinion doctors and your friends here.
Posted 8/21/2014 4:51 PM (GMT 0)
Hi restofmine,
You had a lot of bad news piled on. I hope they can control the bladder cancer with BCG. You were very wise to get a second opinion from Dr Partin at JH. As you may know, JH is known for surgery, so when they tell you that radiation would be better, that is something worth paying attention to. Your "just cut it out" is a very natural first reaction, but for 30% of men, just cutting it out does not get rid of the cancer. Radiation may have a better chance of eradicating any cancer that is already outside of the prostate capsule -- in the prostate bed and pelvic lymph nodes.

The stats for recurrence-free survival are especially good for a combination of hormone therapy + external beam radiation + a brachy boost to the prostate. The brachy boost provides an extra measure of cancer-killing power to the prostate, without a marked increase in urinary and rectal side effects. With your high Gleason score, they will almost certainly want to give you whole pelvic radiation so as to kill any cancer cells that may have already moved to the lymph nodes there.

Please keep in touch as your treatment moves forward.

- Allen
Posted 8/24/2014 9:44 PM (GMT 0)
TY to all responders. I will transfer over to Redwing post as recommended. I have many questions and expect to see answers someone else has received with numbers like mine.
Posted 8/25/2014 4:14 PM (GMT 0)
Hey restofmine -

You don't need to "transfer" to that G9 thread, it's really meant as a reference collection of information primarily. Our stories, and so on. I responded to your informative post there, too. (Congrats on reading through the whole thing, it's getting pretty long!). We're here to support you wherever, and as you may notice when you make a post it puts that thread at the top of the front page forum topic list.

For personal feedback, this main forum is the best place. Carry on, my friend!

By the way, you do carry the distinction of being our newest addition to the G9 5+4 group, entitled to all honors, rights and privileges pertaining thereto. The last one added was in September of 2013. Fortunately for most, it's a rather uncommon diagnosis; but for you and I it's just something we have to deal with. The good news is just about everyone I've found for that smaller list is still around and still plugging along. The bad news is you do have tiger by the tail there, and it requires aggressive follow up.

Internet info about that diagnosis can be pretty discouraging, but be careful about the age of a lot of it. Things keep getting better in the treatment arena.

Jerry
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