Newly diagnosed - treatment options being weighed - What next?

I think that the side effects of surgery and radiation are the same. But with surgery, it starts with the full effects, which usually get better with time. With radiation, there may be few side effects at first, but they may appear after a few years. So, from what I have read, the long term outcomes are the same.

It's your choice of treatment. Your doctors have given you good advice. Pick one and do it.

Welcome to HW, sorry you need to be here.

The arguments of surgery vs. radiation can drive you nuts. I doubt you could make a clear scientific case that one is better than the other. You should see a radiation oncologist for a second opinion. I think you'll find that radiation isn't as bad as you fear and might be the better choice for you.

While you should decide soon, you have time to consult with a couple of doctors and treatment centers to get more information. Make an informed and not an emotional choice.

Check out the sticky threads at the top of the forum and learn all you can about this thing.

Hang in there and keep us updated on your progress,
Andrew

You're going to hear recommendations for every type of treatment. There's no one right answer - choice - which fits everyone equally. I and many of us here were at the same point you are right now. It's all so weighty and confusing, at first. I had the benefit of a primary care physician with whom I had a doctor/patient relationship for probably a decade before the cancer was diagnosed. He helped me understand the options, arranged for a Urologist/Surgeon in whom he had confidence, and he was with me every step of the way. I can't emphasize how important having that relationship was as I struggled to understand it all, working through the fear, etc. Best of luck as you research this and move forward to resolve your situation.

Thanks Mavica for your comment. I too have a personal physician that referred me and I have to use that as a positive. We are so at the mercy of doctors for their integrity and doing the best thing for us physically and not for them economically. A little bit cynical I guess but always goes through the mind. A lot of suggestions to get 2nd or 3rd opinions but does that really help? You are going to believe the better of them, but what if they were the wrong ones! Like they say , getting old is not for the faint of heart or sissies!

I have almost decided to go the da-vinci surgery route too. One Dr. said to avoid radiation at all costs due to high risk of bowel or urinary trac issues post-op and the mon-Fri sessions for over 2 months.

Post Edited (Texan_2015) : 9/28/2015 12:54:11 PM (GMT-6)

Texan:

You have the correct information.

Have you visited with a top-notch surgeon and then a top-notch RO guy?

We have had assorted arguments -- sometimes even heated -- about the pros and cons of one tx. vs. another. Frankly, if one was significantly better, there would be no arguments. It is a very individual decision.

Also, did you get a second opinion on your biopsy?

Often, the slides are sent out for such an opinion.

Jon Epstein at John Hopkins is as good as any around and it is easy to have the slides sent out.
Google it

Mel

Mel

Hi Michael T - Located in Dallas area. My biopsy was diagnosed by Bostwick in NY. Urologist explained it was reviewed by 2 different pathologists. he had suggested a nuclear bone scan and CT scan due to the G8s. Many good treatment centers here. Seems the greater issue is not the center nut which doctor is doing the surgery / treatments Mulling continues..

Texan_2015 said...
in_the_shop - this is my first time to use the site. what are the 'sticky notes' on the top of the page you referred to?

I meant stick threads - the two top posts with the lock icons:

www.healingwell.com/community/default.aspx?f=35&m=2652250
www.healingwell.com/community/default.aspx?f=35&m=1019612

Very useful information here.
Andrew

If you've checked the box with Bostwick, then you're all set with the biopsy slides and your G8 diagnosis. I myself have no specific Dallas insights, but I'm sure others will.

The scans make sense as a G8, although they are unlikely to show anything with a G8. (Well, they'll actually show a lot of wear and tear, which can freak some people out. But they're unlikely to show anything related to prostate cancer.)

If you do surgery, you're absolutely correct that it's the surgeon much more than than the facility that matters. For radiation, hopefully you'll get some recommendations on who to talk to about brachytherapy and SBRT. FYI, an increasingly common treatment for high risk guys is IMRT with a brachytherapy boost, generally along with hormone therapy. I'm not one of the guys here that can quote studies, but I know that combo approach has very good results with high risk cases.

Hello Texan and welcome to Healing Well. I'm sure you will find lots of help here...just ask us anything.

It appears to me that you have arrived here with the all-too-familiar "get it out" syndrome. May I seriously suggest that you switch to the "get it cured" syndrome instead? It may be that you'll end up having surgery but please, please, please do your due diligence and get educated about our disease.

Re some of the comments you have made:
1. The cure rates for surgery and the major forms of radiation are essentially identical. You will be cured or not cured at the same rate.
2. Yes, radiation after a failed surgery is possible and surgery after a failed radiation is problematical. But, do you know that is only part of the story? If you had been to an experienced RO, he or she would tell you that there are salvage options after a failed radiation treatment that are equally as good as salvage options after a failed surgery. You would have to be lucky for your uro-surgeon to know this information.

With a Gleason 8 there is some chance that the cancer has spread beyond the capsule even though your scans were clear. A combo therapy like Michael T discussed would treat areas just outside of your prostate, killing off any little buggers that may have escaped; surgery will not do that.

While it may seem a bit like I'm making a sales pitch for radiation (which I do sometimes), I'm not doing that now. Rather I'm making a pitch for you to do your due diligence and explore your options correctly. Talk with experienced SBRT, HDR Brachy, LDR Brachy and IMRT doctors so you know the whole story. Then you can make an educated and data driven decision.

Jim

P.S. to ASAdvocate -- actually the long term side effects of surgery and radiation are NOT the same. Radiation, on average, has a much better long term record on incontinence and ED.

Texan, welcome to the club none of us wanted to join. If Bostwick did your pathology, then hang with that, no second opinion is needed. I'll echo the comments to get yourself to the best facility and team you can find. One of the top facilities in the US is in Houston, MD Anderson. A good place to start is to google "top 10 cancer centers" and see what's close by. There are top people everywhere, I got great care in St. Louis.

The decision between Radiation and Surgery is purely individual. Your odds are the same either way. But, the people who can tell you about the latest in radiation therapy is a Radiation Oncologist. The people who can talk about surgery are the surgeons. There IS a strong correlation between quality of outcome and the experience of the lead person, surgeon or radiation. It's OK to ask how many he's treated and what his personal record is for people with diagnoses like yours.

Let us know what else we can do for you. DO take a deep breath and take some time to really make an informed decision. If you run into a doctor who wants to schedule your treatment "right away" on a first consultation, run for the door, as fast as you can.

Texan_2015,
Sorry you have to be here. I would check out Proton Therapy, seems there is one in your neighborhood. www.texascenterforprotontherapy.com/
I know nothing about this facility, but have been very pleased with my results and lack of side effects. Good luck with whatever you choose.
Regards from a fellow G8,
Kris

Sorry to hear of your news. You'll probably want to come to terms with the diagnosis before you start figuring out in earnest your best treatment options. As with most decisions, they generally shouldn't be done in the midst of a crisis or when under high anxiety. Let some time pass, and then dig in.

In answer to your question, there is unfortunately no single doc you can visit who will lay out all the treatment options and the corresponding permanent side effects. Frustrating because that's what usually happens when we get sick. And that just compounds the situation, to put it mildly.

You go to a urologist, and they'll discuss surgery because that's all they know; they weren't trained to perform any of the radiation therapies. You go to a radiation oncologist, and they can discuss radiation treatments but they haven't been trained to perform surgery; plus most radiation oncologists have experience in some but not all of the available therapies, meaning you'll probably have to go to more than one radiation oncologist just to find out about ALL the therapies.

Please know that sometimes radiation is recommended after surgery, and you'll want to find out if that's true in your case.

In the 2 months since I was diagnosed, I have spent countless hours reading forums like this one as well as reading medical journal articles. I have a stack of research 3" high. I wish I could tell you that the docs you'll be talking to will be up to speed on the most current literature, but that's extremely unlikely.

Thus it's up to each one of us to do the research, get educated and then pepper our docs with the relevant questions. Only then will you be satisfied you are making the best treatment option for you.

From my reading, the survival outcomes of surgery vs radiation are very similar. So most people select the treatment option based on which one has the lowest risk of PERMANENT side effects for them. Typically, those side effects concern sexual, urinary and bowel function, the Big 3.

Contrary to what you've been led to believe, the permanent side effect risks between surgery and radiation do not appear to be the same.

Surgery has a poor prognosis for permanent sexual and urinary issues compared with the newer radiation techniques. My urologist candidly said he cannot replicate the lower side effects arising from the NEWER radiation therapies. He explained that radiation had more permanent side effects in the 1990s (as well as recurrence rates), but that the tide has turned with much improved technology in the last 10 years. That opened my eyes and the more I researched and read, the more I found out he was right. Lots of radiation data out there is misleading because it includes the bad results from the early years.

Some things to read and consider on the permanent side effects issue (and there's a lot more out there):

http://www.pcf.org/site/c.leJRIROrEpH/b.5822789/k.9652/Side_Effects.htm
http://prostatecancerinfolink.net/2015/09/23/erectile-function-post-radical-prostatectomy-the-past-20-years/
http://www.prostatecancertreatmentcenter.com/prostate-cancer/the-big-picture/