Newly diagnosed - little - no alot nervous

Newly diagnosed with prostate cancer and to say the least more than a little anxious. Had no symptoms at all but PSA jumped from 2.5 to 5 in one year - took a biopsy (12 samples) and found 3 positive for cancer - Gleason 6,7 and one 8. Bone scan and MRI have shown it is confined to prostate still (96% sure - from what I am told) - Had 2 opinions and both suggest robotic surgery (should mention I'm 56) - To this point have never been sick and have shown no symptoms - hard to wrap my head around having surgery when you feel fine, but I guess the alternate is really not a choice. Surgery is set for October 2 and I am lucky that I am at the number one hospital for this disease (Cleveland) and surgeon has performed over 400 of these, but.....any comforting words would be helpful from those who have been through it. More concerned with after effects - most notably continence and recurrence - My busy time for work is January to April and I'm hoping to be back to normal - or somewhat anyway and then wonder if I'll always be looking over my shoulder for this thing to raise it's head again - I'm sure I am rambling, but just looking for somewhere to maybe get me through all this

Thanks in advance

you'll get lots of advice, support and information here. What I want to say to you Ron...is....you'll make it through this.....I'm so sorry you have to be here. It's not something any of us have wanted to have to deal with. Probably not much comfort....but there ya have it. Good luck and take care..

David

You may want to see a radiation oncologist as fiddlecanoe mentioned. Did the 2 opinions you get come from surgeons or from a urologist? It is also a good idea to have your biopsy slides sent to Epstein at Johns Hopkins to have him read them. He is tops in his field. Even a slight change in the GS level can mean a different treatment plan. From what I have learned, the number of surgeries a doctor has performed is very important. A number in the thousand or higher range would be a good starting point. 400 is up there but 1000 or more shows a lot more experience.
Just some advice. This is your life. You need to be your own advocate. You have to take control of what treatment you will be getting. As fiddlecanoe said, there are differing side effects associated with surgery and radiation. Ask questions, find the best doctors, find the best hospitals. Get opinions from both sides. Surgery and radiation. Then decide what treatment plan you want. In some cases, like mine as a GS9, ADT, brachytherapy and SBRT is the path I took. My urologist pushed surgery because thats what he was trained in. But with my GS level, i more than likely would have needed radiation after the surgery. Why do two when one will work.
Whatever you do, take a breath and do some research. Find out what your best option is. Dont get pushed into something when a different plan maynbe better for you. Find out first

Hello Ron and welcome. Sorry you have to be here but we will help you through this. First of all...slow down a bit and get educated about our disease. If you are "new diagnosed" and have already made a decision it probably means you have not thoroughly researched all of the options. There are many facets to this and many options...make sure you explore them before making a potentially life altering decision.

We have a thread at the top of our forum that is designed for newly diagnosed patients. Please read this. One of the things you will find are instructions about how to get your biopsy slides to an expert prostate pathologist. This is very important. Dr. Epstein and his team at JHU specialize in reading this complicated pathology so go to them and make sure you know what you are dealing with.

After that you should make sure you speak with multiple specialists in both surgery and radiation options. There are many options that may cure you and side effects are real and can be important depending on your perspective. Learn about this and be your own advocate. Don't be rushed into anything.

Good luck and let us know how we can help.

Jim

Ron with all due respect to your relatives and even an oncologist you may not have yet talked to all of the right experts. You need a second opinion on your biopsy slides and, based on those results, should speak with experienced doctors in various radiation specialties such as SBRT, HDR Brachy and LDR Brachy.

And, your understanding about the salvage issue is incorrect. Yes, salvage radiation is possible after a failed surgery. But there are also equally effective salvage options available after a failed radiation treatment. Understanding this will help you sort thru the BS from the truth.

Finally, if you are concerned about side effects you should know that the radiation options provide equal cure rates but with significantly less chance of the onerous side effects of ED and incontinence.

You can search our site for facts on the above two paragraphs. Look, if you are going with surgery good luck and I wish you the best. But, treatment regret is real and the best way of avoiding it is to make sure you consult multiple experts and get informed...

Jim

Sounds like you are making a possible life altering decision, without really knowing what your options are.

Do not make a decision on a primary treatment until you have completed your "due diligence"

Find out what treatment would be curative with the least chance of side effects, and go there, do not base a primary treatment on salvage options, which you are misinformed about anyway, this is where most of started..

Ron,
A surgeon with only 400 procedures is at the low end of the acceptable experience scale. A thousand surgeries would be better. I'll also echo the others in that you should only make a decision after you evaluate all other options. Over the years we have had way too many patients reporting that they did not take enough time evaluating all options. Please take advantage of our wealth of experiences.
JT

Ron-

It is a horrible thing to be diagnosed as high risk, especially at 56 when your urinary and sexual function is doing just fine.

First - please do not rush into treatment. Even high risk prostate cancer is a slow growing cancer. Men who take more than 3 months to make a decision have the same outcomes as those who take less time. Time will allow your inflamed mind to cool off enough to allow for more thoughtful decision making. The first reaction, and because the first doctor we all saw was a urologist, is "just cut it out." Unfortunately, with high risk disease, that is usually a suboptimal approach.

Cleveland Clinic is a great resource. I agree with John T that 400 surgeries is a bare minimum. You have Stephenson and Tendulkar at Cleveland Clinic. You also have Jay Ciezki doing brachytherapy, and Kevin Stephans doing SBRT. Because of your Gleason 8, they may prefer a combination of radiation therapies along with adjuvant hormone therapies. It has the best cure rates for high risk, higher than surgery. But side effects are higher too. Another good choice for brachytherapy combined with external beam (brachy boost therapy) would be Gregory Merrick at Wheeling Hospital (WV), and Alvaro Martinez in Detroit.

Salvage becomes an important consideration for men with high risk PC, particularly if surgery was the primary therapy. You can see for yourself in the nomogram below, that the odds of surgery being successful (i.e., that it is organ confined) is only about 33%. Salvage radiation, with all its extra side effects is successful in about half the cases. That would get your odds of a cure up to about 50%.

/www.mskcc.org/nomograms/prostate/pre-op

In contrast, your odds of a cure using brachy boost therapy is about 85%:
/pcnrv.blogspot.com/2017/02/for-very-high-risk-patients-ebrt-bt-is.html
/pcnrv.blogspot.com/2017/03/brachy-boost-gold-standard-for.html

There certainly are salvage therapies available if primary radiation fails. Salvage surgery is probably the worst of those options, but there are many more. You can read about them here:

/pcnrv.blogspot.com/2017/09/focal-salvage-ablation-for-radio.html

As you can see from the table at the bottom, those salvage therapies are curative in 50-80% of cases, which would bring your expected cure rate above 90% if you start with brachy boost therapy.

Two important diagnostic precautions:

• It is especially important that you get your biopsy results confirmed by Epstein's lab at Johns Hopkins. It's a pretty standard thing to do and costs $250. Just call your urologist and have him overnight the slides.

• I think it's a good idea for high risk guys to go beyond the bone scan to rule out distant metastases. With your low PSA, a bone scan isn't likely to show anything anyway. NIH has just begun a clinical trial of a really great new PET scan for high risk guys like you. It is free, including travel and accommodations to D.C. You have to have surgery scheduled (which you currently do) or agree to a follow-up biopsy. Here are the contact details - just call the contact yourself:

/clinicaltrials.gov/ct2/show/NCT03181867

Stephenson is top rate. Here's a list of the side effects one can expect from surgery, and the approximate incidence:

/prostatecancerinfolink.net/2015/12/14/understanding-the-range-of-risks-associated-with-prostate-cancer-surgery-today/

The most troubling of side effects from surgery, other than sexual, is incontinence. It persists in 10-20% of men after surgery, and stress incontinence is even more prevalent. I was going to say that SEs are less in younger men (that's true for both radiation and surgery), but your ED raises a red flag. The most common reasons for it are CV disease and diabetes. Knowing if you have either of those may affect your treatment decision - diabetes impairs recovery and CV disease may make surgery problematic.

If you are considering radiation, a Lupron shot will give you extra time for your investigations. They would probably start it two months before any kind of radiation anyway. It will stop the cancer in its tracks for now. It will also make it disappear from any imaging, so if you decide to go for a PET scan, do it before the Lupron.

Ron,
Whatever path you choose, stay with us, there are some excellent supporters here. Also, take time to read the Letters to the newly diagnosed.That can be found by going to the top of the Forum page, in the little rectangular light colored custom search box located just under "Forums and Chat", then type in that phrase "Letters to the newly diagnosed" and press Search. Then press that first listing of many listings and I am sure you ill find some comfort and encouragement there in those letters.
Keep the faith;
Wings aka Dan in So Cal

Ron,
You owe it to yourself to investigate all your options. There are pluses and negatives for each treatment and you need to take time and weigh them all. As someone who was recently treated at CCF I can say it's an amazing institution. The Taussig Cancer Center is one of the best in the world. I had a two hour and twenty minute consult with Dr. Tendulcar and his staff and covered alll my options including surgery. You are blessed with great choices here with Ciezki and Stephans as well. The Glickman Urology Center is also one of the best.

The biggest advantage of Surgery is the post op pathology. You have to weigh that value against having major surgery, infection, incontentance, ED, etc. As I follow this and other Pc forums a significant number of posts seem to be guys dealing with these side effects. Good luck and feel free to email me regarding my experience with CCF.

I hear you about being shocked to hear you're a Gleason 8. I was completely prepared to find out I had PCa...my PSA kept going slowly up and I had a brother that was diagnosed a couple of years before me. But I wasn't prepared for the "aggressive" diagnosis. (Of course, it got worse since on second opinion from JHU, I was upgraded to a Gleason 9.)

But you know what? Five years later I'm doing fine. (Almost exactly five years--got the news on 9/12/12, boy do I remember that day.) And in all likelihood, you will do well also. Unfortunately, you have to jump through all the hoops and deal with a lot of uncertainty first, but eventually you will emerge from the other end of the rabbit hole. I remember getting an e-mail from someone here after he had his surgery (coincidentally, at Cleveland Clinic) and said "I got this covered." I have no reason to think that won't be you in the near future.

BTW, your cousin had radiation first and then surgery? That's extremely rare--could it have been the other way around? That's much more common.

Can I ask what kind of work you do? I am a desk jocky (accountant) and work mostly behind a computer- not exactly physical stuff