New to the Forum and PC

I was diagnosed with Gleason (3+4)=7 PC the end of November. Needless to say it was a kick in the shorts. Now accepting this I need to find out what to do and I have no clue where to start.

70 year old, white male, insulin Type 2 Diabetic, Fracture Cervical Spine stabilized with issues through the lumbar. I am still very active and in overall good health if I don't over do the spine issue.

PSA History: '08-2.5; '09-3.0; '10-3.1; '11-4.1; '12-4.2; '13-4.9; '14-5.3; '15-7.2; 12/15-6.4
PCA3: 104
MRI without contrast results: 11/15
Total volume: 36.1cc
One lesion total score =3
Biopsy Pathology: 11/15
Notable: 1) High grade prostatic intraepithelial neoplasia (high grade PIN); 2) Adenocarcinoma, Gleason 7 (3+4), involving approximately 60%, 55%, 40%, 35% and 25% of the biopsy length, of 5 out of multiple cores. The remainder of the sites were benign or no sample.

I am 100% disabled by the VA so a majority of my treatment must at least go through them but I also have Medicare and Gap insurance so I have options. The first words from my Urologist was Radiology and from there I really heard nothing. I visited the VA Oncologist 12/15 and she recommended External Radio Therapy and/or Seed Implant. I've heard of AS and studied the side effects of the others. I'm lost and almost need some non-professional input about treatment plans taking into account my age and other physical ailements.

Just wanted to wish you a welcome, you have definitely come to the right place. Sorry about your diagnosis, but as you will see as the time goes on, PC is definitely a chronic issue, not something that is short-term threatening. So it is good to save energy and breaths, like a long-distance runner, balance out your PC with everything else in your life.

You sound like you are in good shape, despite your other conditions that seem to be well controlled. It is difficult to give advice based on age, but, if it were me, as long as I was willing and healthy otherwise, I´d give it a good try at trying to cure PC. If you do nothing, you will also live a long life, but the question is if you are willing to risk it with Gleason 7, because eventually (could be a decade) this type of cell has a potential to spread. Most doctors advise against AS with a Gleason 4 pathology present.

Please get several opinions. Urologists tend to push surgery, radiation oncologists tend to push IMRT and seeds therapy, so get several opinions. Take your time, this type of cancer allows you to take your time to research and decide. We are here for you.

Hi mannings3 and welcome,

First read the sticky on the first Page:
Newly diagnosed with PC? – read this thread first

That'll give you a good layman's background. It also has a recommendation to get a second opinion on your biopsy slides from Bostwick or Epstein - it's really a good idea, even if you have to pay out of pocket.

I'm sorry your health is poor, and especially with your diabetes, I can see why they'd steer you away from surgery.

The term "active surveillance" means there's an intent to treat with surgery or radiation at some future time if the cancer shows signs of progressing. There's a related idea called "watchful waiting" that means you watch the progression closely, and if it does progress beyond some point, you only treat it with non-curative hormone therapy. A man can live with prostate cancer and hormone therapy quite a long time before it progresses to a point where it is fatal. So especially when there are other diseases at work, watchful waiting can be a good option. It's something to consider carefully and discuss with your family and your doctor.

You might be a candidate for brachytherapy - there are two kinds - low dose rate also known as seeds, or high dose rate also known as temporary implants. You have to find and talk to an expert in each kind.

As far as external beam radiation goes, the traditional course is 40-44 treatments (called IMRT), but some doctors are doing it in fewer treatments (called "hypofractionated IMRT"), and you can even get it done in just 5 treatments (called SBRT or sometimes known as CyberKnife). The results are equally good. In fact, the side effects may be lower with fewer treatments. Fatigue especially is very rare with SBRT but common with the extended treatments.

The only hard part is that you have to seek out and talk to specialists in each one of those therapies, and make up your own mind about which is right for you. If you tell us where you are, we may be able to recommend specialists in your area.

Welcome to HW, sorry you need to be here.

Likely radiation is the best route for you. Most likely you'll want some treatment. Sadly, AS might not be an option with your numbers. Generally, G4 cells need to dealt with.

To get the second opinion on the slides you have to get the doctor who did the biopsy to send the slides on. Most will do that if you ask and tell them where to send it. I assume you had your biopsy with the VA? Maybe some of the folks who dealt with the VA can answer that.

honestly, you might get better RT at Moffitt Center than through the VA.

Hang in there, and ask all the questions you have,
Andrew

mannings: Sorry you had to come here but rest assured you are among those who have been there and done just about anything PC related. You have been advised to get a second opinion on your slides. If you will look at the sticky note at the top you will see where to get those second opinions. While you are reading through these notes you will have some other questions answered as well. You will see, in my signature, a similar story to yours. I chose the seeds administered by one of the best ROs in the business. External beam, SBRT (cyber knife), LDR (seeds), and HDR brachy thearapy are all good options with similar curative rates. I have had so few side effects from seeds I feel truly blessed. Your final choice will be based on finding and talking to guys who have been through this, more research, and talking to the best Docs you can find. Best wishes and keep us posted.

Welcome Mannings to the club none of us wanted to join. If you're in the Tampa area, they are doing great things at Moffitt. With a G3+4, they probably won't take you for Active Surveillance. Good news is, the standard treatments are all likely to be curative, yes, curative.

You'll be ok. You've got time to do research and find your treatment team. Dig deep and do what's right for you. We're here to help you through the journey. When the questions come, feel free to ask.

Mannings
You're near Sarasota where Dattoli Cancer Center is located. Dr D is one of the best RO docs you'll find anywhere and treats only prostate cancer. You'd do well to look him up and get a phone consult. Guys from around the world use him. He has two IMRT units which are usually fully booked. He's an expert at brachytherapy also.
Bob

With those high percentages of Gleason 3-4 what are the chances that a second opinion will make much difference. It almost certainly will not regrade them all to G6. There is a change in gleason score about , on average 20-30 %of the time, with that original scoring...not sure I would call that often,Ken. Even if some are reduced in grade will that really affect treatment options barring other findings?

I'm in the VA system as well but since I have a choice (Medicare+ supplemental), there was no way I was going to use them for something like prostate cancer mitigation. Please take the above advice about seeing a recognized specialist outside the VA.

Ken,
LOL, maybe so. I was thinking of a lot of the bigger cancer centers. I remember my mother, who was a Navy lieutenant , stationed , as a nurse, at Pearl when that stuff happened, complaining about the VA..that was 50-60 years ago...nothing much has changed?

PS They didn't think a heck of a lot of the Red Cross either, for that matter. :)

Thanks guy's for all the advise. I have appointments scheduled with Moffitt, Dattoli and Sylvester in the next 2 weeks. Doc shopping. The VA has put my on the Choice Program, and Michael_T I'm beyond being freaked out but maybe jinxed. lol

I am using the Va and was told by my urologist that they would no longer except the VA Veterans Choice Card as payment. I only have one urologist in the local area and the next one is 440 miles from my house. Are you on the Va program because of Agent Orange?

Captaindd - you realize that the Choice Program has very strict guidelines. You must receive an authorization from the VA justifying the use of Choice for a specific procedure, that authorization is for one and only only one procedure, each additional procedure requires a new VA authorization. Choice then sends your provider a verification number for that one procedure to bill against. The verification number must be renewed every 60 days if you have extended care for the authorized procedure or it becomes obsolete.