Forest For The Trees

Good day,

Although diagnosed June 30th, with clear CT & Bone scans on July 19th, I was just introduced to this site by a friend at work who went through the process (surgery) about 4 years ago. I'm overwhelmed by the sheer volume of expertise and shared knowledge here. Having trouble memorizing the acronyms and have to keep peeking at the list!

On June 30th, my urologist recommended prostate surgery as best answer. He is expert in robotic microsurgery and therefore this would be expected. Because a long time friend in San Diego had success with cyber knife, I started looking into that. After researching a while it brought me back to Nashville, where it is performed at Centennial hospital. I met with the radiologist (my urologist arranged this consultation for me; they work together which I'm relieved about) on July 25th. We hit it off and I was impressed by his game plan of hormone, seeds and radiation. I'm leaning in this direction, unless my case for some reason isn't a good fit? I will get real numbers today when I follow up with my urologist and fill in my signature below.

In summary, I felt I knew what I was doing but now have to re-calibrate by processing as much as I can here! Problem is my mind doesn't want to cooperate with this as fully as I would like. For example, tell me anything about audio or music and I'm very likely to remember; if it's about photography or sports, it goes in one ear and out the other! This is my current dilemma. I thought I would finalize a decision this week but see now that I need a little more time to try to know the best course of action.

Best wishes to all. Tim

Being high risk favors a radiation based approach as surgery alone has a fairly high failure rate which then requires radiation. This double whammy treatment is best avoided due to the increased significance of side effects.

You are serving yourself well by expanding your research with the radiation based treatments. As Peter mentioned the most effective of these is the external/internal approach. That very effectively covers an area greater than the surgeon can cut. It can also cover the pelvic lymph nodes which is often advisable in high risk settings as this is often the first place the PCa will travel. You having the nasty G5 in the mix would encourage me to treat the nodes.

You will see by my signature that I took this approach nearly seven years ago (HDR-BT, IMRT and ADT) and am presently undetectable for PSA/cancer and have no negative side effects from the treatment.

While removing the primary tumor MIGHT be worthwhile, even though your chances of needing salvage radiation are high, (G-5 can be a handful, I would get a second opinion on that from an expert lab as others have mentioned..) The people who do surgery and the people who do radiation compete with each other for your business..They will try and sell you their product. Both products have equal standing as far as producing cures goes, much depends on the skill of the practitioners...YOU will have to do your homework and decide which method of treatment will work best for you...Also know that while surgery has not changed much over the last 10 years, radiation treatment has made big advances in the equipment and techniques used to treat prostate cancer. The combination of seeds and beam radiation, performed by experts, is very hard to beat when it comes to producing cures in high-risk patients..

With both surgery and radiation, success depends on whether or not the horse has left the barn..When getting second opinions, visit with a Medical Oncologist, they have seen it all and can provide valuable insights....Learn all you can, make up your mind and do it......Never look back. Just go forward and play each hand as it is dealt..Best of luck to you....

Hi Real Name

Wanted to let you know that I was treated by Dr. Jim Gray at Centennial in Nashville last year. He is great to deal with. I was very satisfied with the care I did the same treatment that you are considering. So far everything is going well. Next PSA read in late October.

I don't think they do SBRT or HDR there.

Whatever you decide, good luck.

Al

Wow! Thanks for all of the replies and recommendations. Work has been busy but the mailman just delivered a box of books from the kind fellow that directed me to this site so I'm declaring an all stop for a minute!

I celebrated after the consultation because I may have to go through some (hopefully minor) hell, at least now I have some consensus on *which* hell I'd be going through. The UNKNOWN factor has weighed on me heavily, so having the two principals agree on the radiation approach meant we're all on the same team! They'll be working together on my behalf.

My relief is that the urologist didn't pushback with anything about surgery being the only answer for my case. I really didn't want conflict and none was offered, only encouragement that my choice was completely valid. Dr. Gray (mentioned above @ Centennial) made a very persuasive case a few weeks ago that really appealed to me, so I really wanted Dr. Hassan to buy in and he did. My stress level has dropped considerably!

Hormone shots + seeds + radiation (forgive my lack of proper nomenclature for now)

I'll be back soon. Thanks again for such a wonderful resource.

Briefly - I asked who else might review my slides to seek a second opinion. The urologist said that is typically done when there is some doubt about the cancer definition. "But mine's slam dunk?" Yes he said. I will reference this with radiologist as well for his take.

As for the hormone shots, I will investigate Lupron alone versus combination before I plunge in. Have two big PC books here to learn more.

Thanks

Thanks Tall Allen, it was recommended I listen to you!

This was mentioned by Doctor WHO above:
"They found that using a mixture of Lupron and Zytiga offered better long term survival than just being on Lupron. An article on this is listed below."
http://www.nejm.org/doi/full/10.1056/NEJMoa1702900

^^^^^^
Exactly what Tall Allen and Redwing said. Send the slides.
I have been told and I have also told others, you MUST be your own advocate. This is a disease you are fighting that has varying outcomes. Always look for best hospital, doctor, lab, etc. to get you through this. If a doctor tells you you dont need a second opinion, make sure you get one. Remember that your life can depend on the decisions you make with this. So getting the most information and the best doctors and facilities increase you chances of getting through this.
And also with the second opinion on the slides, one number can possibly change the way your treatment moves forward. A 5+3 may be a 4+3 when Epstein reads the slides. Always look for a positive outcome.
Good luck.

Gary said...
Keep reading this and other Prostate Cancer forums for CURRENT information. Those books are very probably old news.

In the context of this forum, and a few other similar forums this is good advice. But I have to point out that in the larger context of "information from the Internet" it is questionable. There is a lot of bad information out there and you have to be cautious.

TIMRN said...
This was mentioned by Doctor WHO above:
"They found that using a mixture of Lupron and Zytiga offered better long term survival than just being on Lupron. An article on this is listed below."
http://www.nejm.org/doi/full/10.1056/NEJMoa1702900

The caution that PDA and garyi are expressing applies even sometimes on this site. Nothing you hear here is a substitute for a discussion with an expert doctor - we are all just raising issues to explore. Doctors expect that these days.

With very few exceptions, HW attracts a great group of people trying to be helpful. In their enthusiasm, some may suggest things that aren't relevant to your specific situation. One of the more difficult lessons that I'm still learning is that prostate cancer is a very diverse group of diseases. Every man's case is slightly different. We have learned recently that even within a single man, there are many strains of his cancer. That genetic diversity increases as the cancer progresses. They call that "genetic breakdown." Once prostate cancer has reached a metastatic stage, it is a wholly different kind of disease from the kind of disease you have, which is called "high risk." Medicines and therapies that are useful in one setting, may not be at all useful, indeed, they may be only toxic, in another setting. What Dr WHO was referring to doesn't apply to you, as far as we know now - it was about a second-line hormone called Zytiga. They just found out that it increases survival in men newly diagnosed with metastases. Thankfully, you're not at that point. There is currently no evidence that it increases survival in the high risk setting. You couldn't get it anyway, unless you're very wealthy - it's quite expensive and insurance won't cover it for you. I think coping with Lupron is challenging enough, without adding Zytiga to it. But if Lupron doesn't get a great response, your doctor may want to try alternative hormonals. You have to take it one step at a time.

I just updated my signature to signal my anticipated path; hormones + seeds and Radiation at Centennial. I'm gathering up all my related stats tomorrow and have made the inquiry to AETNA regarding the biopsy review by John Hopkins as to whether they want it to come through the physician or whether I can request it be sent direct from pathology group.

Taking a vacation with my younger son next week and getting down to business when I get back.

Thanks and best of luck to you Dogdays.

I'm getting my stats mailed to me as I don't have time to get to their office before flying out tomorrow. Decoding the forms for Johns Hopkins review (second opinion) of Biopsy slides and get that started. I don't see a fax # or mailing address on the forms so I'll need to figure that out ASAP.

Good day, couldn't get it together to send consult request to JHU before we left town for vacation. Returned last week and got a fax machine going. (I pretend not to have one) The send failed three times; fax machine tested good here. I called 410-955-2405 and asked if there was a different fax number I could use or better yet an email address to submit to. The person I spoke to gave me [email protected] to send it by email. Has anyone else used this method of submission?

I submitted this request on Wed 8/23; asked for a confirmation of receipt on 8/25 and heard nothing. Sent another request for acknowledgement this morning with a Read Receipt request. Don't want to be a jerk about this but I am concerned that it's not being addressed until told otherwise.

Thanks, Tim