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Posted 5/18/2016 8:58 PM (GMT 0)
Hi,
I am new here, just thought I would introduce myself.
I am a 56 year old male from Canada.
I have CML and now high risk prostate cancer.
I am scheduled for a radical prostatectomy in mid August and am on a waiting list for an earlier date should one become available.

The waiting is making me very anxious, I just want this time bomb removed once and for all so I can get on with my life as best I can.

I am open to any advise anyone can offer.
Posted 5/18/2016 9:12 PM (GMT 0)
Hi CoolHandLeuk (cool screen name!) and greetings from another high risk guy in his 50s. I'm sorry to hear about your diagnosis, but hope we can be of some help. And CML and prostate cancer? That's a tough hand you've drawn.

What can you tell us about your high-risk diagnosis? Gleason score, PSA, number of biopsy scores that were positive? You can see from my signature below and from others on this forum about the type of info that could give us a better idea of what you're dealing with.

As to the waiting, PC is a slow-growing disease so three months is fine for most guys to wait. Of course with your high-risk diagnosis I can see why you're nervous.

Also let me ask you this: did you look at treatments other than surgery? Based on your comment about getting the time bomb removed it sounds like surgery is your preference, which is fine since it's your preference, not anyone else's. But if you do have to wait for surgery, it does give you time to investigate other radiation treatments (of which there are many) that would be equally (and possibly more) curative than surgery.

Last comment: check out the sticky at the top of the page for newly diagnosed patients as you'll find some good info there. Good luck to you and let us know how we can help.
Posted 5/18/2016 10:19 PM (GMT 0)
Hey cool
If indeed you've been defined as high risk, then surgery may not be the best choice. That's why your biopsy results would be helpful to us and a second opinion on your slides is always indicated unless your original pathology was at a center like Johns Hopkins.
High risk means aggressive cancer which may have or will spread so RP won't get it all.
Bob
Posted 5/18/2016 11:03 PM (GMT 0)
Luek, welcome to healingwell. There is a ton of knowledge and support here, from guys who have gone through it, so I hope you'll stick around and take advantage of it. This is a pretty unique place.

Can you be more specific about what you refer to as high risk? As the other guys have said, it would help us help you, if you want help, if we knew the details

Good luck and welcome.
Posted 5/19/2016 1:44 AM (GMT 0)
Luek, I hope you come back and respond to the other comments. I'd add my welcome to our club that none of us wanted to join. If you'll let us know what your biopsy report says, and maybe your PSA history over the last couple of years, we can pass on specific info that might be of help.

With CML, you'll certainly want to get your current oncology team on board with this new diagnosis and the PC team that you put together.
Posted 5/19/2016 3:14 AM (GMT 0)
And...I just figured out the spelling of your handle. Sorry, I can be a bit slow at the uptake sometimes. I still like the name...
Posted 5/19/2016 5:49 AM (GMT 0)
Welcome to HW.
You're one of my favorite films.

More info would help us give better suggestions.

Just remember that PC is slow growing so a little wait for treatment generally isn't an issue. Anxiety generating and upsetting for sure. Know that this game is as much mental as it is physical.

Hang in there,
Andrew
Posted 5/19/2016 7:21 AM (GMT 0)
Welcome Luke,
The time bomb ticks slowly. You found a good place to get support to get through th wait and good advice while you wait. You may even change your direction based upon the wealth of knowledge here. And may the force be with you always!
Beth
Oops, wrong movie.
Posted 5/19/2016 12:37 PM (GMT 0)
Here is my status as of about 2 months ago
PSA 10.2
Size 18.2
Stage T1C
Gleason Score 4+4=8
Posted 5/19/2016 12:57 PM (GMT 0)

CoolHandLeuk said...
Hi,
I am new here, just thought I would introduce myself.
I am a 56 year old male from Canada.
I have CML and now high risk prostate cancer.
I am scheduled for a radical prostatectomy in mid August and am on a waiting list for an earlier date should one become available.

The waiting is making me very anxious, I just want this time bomb removed once and for all so I can get on with my life as best I can.

I am open to any advise anyone can offer.

What province?(I'm from PEI)
Posted 5/19/2016 2:12 PM (GMT 0)
Yep, it's that dang Gleason 8 that puts you in the high-risk category. But...you should know that reading biopsy slides is a very subjective process so our general advice here in the US is to get a second opinion on your biopsy slides. That may not be as easy to do in Canada, but the newly diagnosed sticky explains how to do it. Personally, even if it weren't covered by Canadian insurance, I would pay the few hundred dollars out of pocket to send your biopsy slides to Epstein at Johns Hopkins for a second read. FYI, your grade could go up, down or stay the same. I started as a G8, but (unfortunately) was re-classified as a G9. But if I had gone down a G7, it would have made a difference in my treatment decision.

Are you set on surgery as a treatment? If so, that's fine and we have a lot of guys here that can get you advice and support on that. But if you are open to other ideas, I will point out that there's evidence that the brachytherapy/IMRT and HT combo is the most effective treatment for high-risk patients. That's what I had, as well as your fellow Canadian FoxRun, who posted above. We're both doing very well at this stage.

Good luck to you with this and the CML!
Posted 5/19/2016 2:15 PM (GMT 0)
Hello from another 50's year old with advanced prostate cancer winner (ok, maybe winner is not the best word). I am also very new to this sight. It is scary when they tell you that you have cancer. Please know that everyone here is pulling for you. This web page has given me comfort and actionable information. Listed below is my story so far. Hopefully it may give you some things to think about. Most important, there is hope!

A three month wait is long, but even aggressive prostate cancer moves slowly. I had to wait almost three months for my surgery (done on April 18, 2016). While you are waiting, could you ask for a CT and bone scan? This would help rule out if it has spread. During the operation the surgeon may take out a lymph node or two to test to see if it had spread. Traditionally, if if has spread, they would not finish the operation and start you on other treatments, such as radiation. Based on some more recent results from Italy and other places, I requested the surgeon continue with the operation even if it has spread. You may want to discuss this option with your surgeon. I am glad with my decision, side effects and all. My cancer was found in the pelvic lymph nodes but they finished the operation. With the prostate and lymth nodes out they were able to get a better reading on the cancer from the pathology report, the post PSA readings will have more meaning, and I still have a lot of treatment options available post surgery.

No matter what you decide, what choices for treatment you go with, people are pulling for you! I received great information on specialists in my area to help with the advanced form of cancer I have. There are some great people in this group that have a lot of information! Again, three months seems like a long time, but if it the correct treatment for you it is worth the wait.
Posted 5/19/2016 2:37 PM (GMT 0)
Hi,
I am very touched by your concern for my wellbeing.

Just a bit more about me, My father was diagnosed with Prostate cancer in his early 50's, had a prostatectomy but It had already metastasized. he lived to 65 but it wasn't much fun for him. it was 20 years ago that he passed and I think medicine has progress quite a bit since then.

I was diagnosed with Chronic Myeloid Leukemia 2 years ago, I take oral chemotherapy every single day of my life with no end in sight there is no cure other then a Stem Cell Transplant, and none of my family are a good match. I don't clot well and have to deal with other side effects, such as poor circulation ( thus the reason for my handle Cool Hand Leuk) while trying to keep my job in a down economy ( I am from Alberta where things are quite grim these days)

I had the bone scan which thankfully was clear, I have a CT scan scheduled for early July

I just feel that with my family history that I don't want to take any chances. Its quite ironic that 50% of men with CML die of prostate cancer before the CML gets them.
Posted 5/19/2016 2:40 PM (GMT 0)
I have a bit of attention deficit so I didn't read everyone's posts fully.

Since you are waiting on surgery, are you on any sort of hormone therapy?

Before my surgery they gave me a shot of degarelix.
Posted 5/19/2016 2:44 PM (GMT 0)
Hi CoolhandLuek. Sorry for yiour Dx, and welcome to the forums.
A Canadian eh? Me too. I'm in toronto. I am also a Gleason 8. My treatment selection after all my research and consults is of the HT and radiation type.

You're in a good place for advice and learning.
Posted 5/19/2016 2:52 PM (GMT 0)
This is off track to the PC discussion, but you mentioned a Stem Cell Transplant. My brother went through that about a year ago. (It was never clear to me whether he had MDS or CML--when I would ask him he always said "it doesn't make a difference.") I was one of three brothers and none of us were a match for a transplant either, but he did get a match through the international registry. Since you've been living with this for three years I'm sure you know all about that.

BTW, he was diagnosed in the opposite order of you. He was first diagnosed with prostate cancer and then a few years later with CML (or MDS).
Posted 5/19/2016 4:09 PM (GMT 0)
Perhaps your two oncologi can collaborate and decide whether there is a form a chemo where you can get two for one.

I can't eat 50 eggs but do welcome you to the forum. You can check the home page to see if there is another chat room for CML.

While you have to wait for the surgery opening, perhaps you can see a medical oncologist and a radiation oncologist to explore all your options. As you peruse this site you will find many guys who benefited from surgery but also other guys who had success with various forms of radiation.

Having a second disease may limit some of these options, but perhaps something like Provenge Immunotherapy can help you fight each.
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