New Diagnosis

Welcome to our little corner of the internet. So sorry about your husband’s diagnosis. When you get a chance, try to create a “signature” with his stats and your location. The knowledgeable guys will be along soon to offer suggestions. Right now, I’d recommend reading the sticky notes at the top of the page. Also, it’s a great idea to have his biopsy slides sent to Johns Hopkins for a second opinion. There’s information on how to do that in the sticky notes. Before you decide on the treatment plan, it’s a good idea to confirm the Gleason scores. You’ve come to the right place for friendliness and knowledge abounding, with a touch of humor when needed. Sue

Welcome to HW, sorry you need to be here.

It's a shock for sure. Just remember that today we have lots of treatments and every reason to hope for a positive outcome. Won't be easy and normal will change, but you two can get through it.

Learn all you can and do look at more than just surgery. You have lots of options and sometime to make an informed decision.

Keep us updated on your progress and ask all the question you have - we're here most days.
Andrew

Welcome to the forum. Sorry you find yourself needing to be here but glad you found us. Hope we can help. If you haven't already you might want to read through our "sticky" thread for the newly diagnosed. (It is "sticky" because it is always the first item listed on every page. It sticks to the top and doesn't move down as newer postings are made.) It contains information for getting second opinions on biopsy results and the like.

Yes, the word "cancer" does knock your breath out, doesn't it? But since you are a healthcare professional, perhaps you already know that much, perhaps most, if the damage that prostate cancer does in men's lives these days comes from the side effects of treatment, not from the cancer itself. There are a number of treatment options available that are all very effective but which can differ strongly in the type and severity of the side effects they involve. It's nice that you know of several good surgeons but surgery isn't the only option for most men, nor always the best. You should also talk to radiation oncologists, especially those proficient in some of the newer treatment modes (SBRT, for instance) and possibly some who do brachytherapy.

I'm glad you appreciate the information we hand around here but the main benefit we offer is to simply help newly diagnosed men and their loved ones to calm down enough to make better decisions, despite the scary "C" word.

Welcome to our club that none of us volunteered for. You're not the only wife or SO in this group, there are some fine partners who ask questions on behalf of their spouses.

Wow, that is a tough diagnosis to hear. As others have said, first things first...ask the urologist to have the slides sent to Johns Hopkins for second read. Dr. Epstein's group there is the very best at prostate pathology. about 30% of the time, his second read will be different from the first read. And about half of those result in lower scores.

Then, as others have suggested, get in to see radiation oncologists who specialize in prostate treatment. And remember, radiation is getting really specialized in it's own right: each sub group has it's own experts. Make sure you talk to all of them.

Surgery is an option--IF other tests confirm that the PC is still organ contained. Radiation therapies also seem to have better overall side effect profiles. On the other hand, with surgery you know when it's over what you're really dealing with. By the way, don't let a surgeon throw the half-truth at you that says, "surgery is best because you can always follow up surgery with radiation if needed, but once you do radiation, you can't do surgery" which is true, as far as it goes, but it also suggests that there are no follow up options to radiation--which is totally not true.

Besides, the goal of primary treatment is cure, not planning for secondary treatment. And, yes, with PC, even high risk PC, cure is part of the language. Not remission, not long term management--but cure is actually possible.

Best of luck to you. If you tell us where you're located, then someone in here probably can aim you at the best local treatment options. (it might not be at the most familiar hospital)

Welcome aboard the voyage you didn't sign up for.

My brother in law's diagnosis was the same. That was three years ago. (his psa was 20). He's been off of Lupron for several months and his last psa was undetectable. (I don't know that his story is out of the norm)

You're in the teeth of the tiger stage.. Hang tough Nytngale.

Please keep us posted. Take care....

Just something to put in your cap until later when you're able to deal with all this better... about 3 hours east of Columbus is Wheeling hospital. Gregory Merrick can set him up to have low dose rate brachytherapy (seeds) in conjunction with external beam radiation (which he can get closer to home). about 3 1/2 hrs north of Columbus, you can meet with Alvaro Martinez at 21st Century Oncology in Detroit. He is one of the leading specialists in high dose rate brachytherapy (temporary implants), which would also be given in conjunction with 15-25 external beam treatments (which he can get closer to home.) Either of these would be an excellent choice for oncological control. However, the heavy combined doses come with a higher risk of urinary side effects (mainly irritative - incontinence is seldom a side effect of primary radiation).

So sorry you need to be here- however there is not a better place to find current information and really good support. We all have been exactly where you are in the process. Know that I will pray for you and your husband tonight. Peace, strength and knowing what todo next and where to go to get it done.
Let us know how you are doing for sure.

At the PSA levels you're reporting, it's doubtful that the scans will show anything.

and this is an emotional game too. In fact there is often as much emotional/mental impact as a physical one. Take care of body/mind/spirit.

Andrew

Greetings from another native buckeye (I live near Philly now). Within a relatively near drive, you have Cleveland Clinic (I'm reasonably sure they have satellite centers nearer you) and, as TA has mentioned, Detroit. Cleveland Clinic is world class in every respect, and there are several guys in here who were treated at Henry Ford in Detroit.

Always remember that a Urologists are surgeons-that's what they know, and that is almost always what they recommend for treatment. Don't ask them about radiation options--generally, they don't know much about them.

One nice thing about PC is that, compared to other cancers, it is relatively slow growing, so even with the G8 diagnosis, you have time to calm down and explore the options. I'd suggest you do plan on going with him to the various consultations--and take notes. Write down questions before you go. You're going to be presented with massive amounts of information to process, and it's really easy to stress out and miss important things.

Nytngale, I was diagnosed earlier this year and after doing my homework opted for RALP. I have a running friend who went through this a year or so ago and he is a doctor at our hospital. He went out-of-state for surgery and when queried he said that with this procedure you want someone who has done LOTS of these. I talked to my uro and she does about 4/month and has done maybe a couple hundred total. I did my research and based on what I found I selected Cleveland Clinic. My uro concurred as she'd done 6 years there in her training and gave me a doctor's name who she considered the best one there. I contact them, had my slides sent for a 2nd opinion, and flew there for a consultation. When I asked the doctor how many of these he's done he said he didn't know but he does 3-4 per day, 4 days per week and has been doing the RALP for a decade or so. That was good enough for me. So, a few weeks later I flew back again and had the procedure. I stayed in a nearby hotel for week until the drain and catheter were removed. I flew home (First Class, why not?) and healing has proceeded pretty much normally.

That's what I did and it worked for me. The only thing I'd recommend is that if you do go someplace other than local, go early and take a few days to do some sightseeing. I did that on my two trips to Cleveland. The Rock and Roll Hall of Fame, their art museums, their downtown, Case Western Reserve campus, and Great Lakes Brewing were all worth the visit alone. And their public transportation system is great, inexpensive, and easy to use.

Good luck!

Welcome to the forum, and to the club no man wants to join.

However, here you are. You've already received a lot of good advice. I didn't get to this forum until I had chosen surgery and had the operation. I've done well. I understood the side effects of my treatment, and all in all, have done better than I expected.

What I will say is since I've been on this forum I've read a great deal about radiation treatment options and the advances being made in that area. I read that radiation may be a better option for high risk patients. Of course I'm not a doctor, so read, listen, and discuss with medical professionals experienced in treating PC. Make the best decision for you and your family.

Take your time. You should do fine. Good luck.

FWIW, I was so shell-shocked after getting my diagnosis that as I was trudging out to the parking lot with my wife I said, "That's it. I'm not getting any other opinions. Let's go ahead and schedule the surgery." It was only a week or two later when I started doing my research, getting other opinions and becoming my own advocate. I only mention that since your husband may be in a different state of mind in a few weeks or so. (Or maybe not...)

Re the second opinion on biopsy slides, remember he could also get a downgrade and you'd go from high to intermediate-risk.

Good luck with the scans--I'm betting they'll come back "unremarkable."