Recently diagnosed, am I intermediate or high risk?

Hello, I was recently diagnosed with PCa after my PSA jumped from 3.1 to 7.04 in 18 months. Biopsy shows 6 of 12 cores 3+4 (30%) on left side and 1 3+3 on right with PNI on both sides. Bone and CT scans clear. Staged at T1c. Had color Doppler US done by Dr. Duke Bahn where he found a possible extra capsular extension (ECE) and suggested T3a staging.

My urologist at Kaiser suggested surgery, but Dr. Bahn suggested a combo therapy of ADT, HDR BT, and EBRT, and not surgery since the chance was high of positive margins. The Kaiser radiologists suggest a mono therapy of LDR BT (seeds) since my PSA is low and no one can feel anything on a DRE. The Dr. at Kaiser who does the BT only does 3 per month, so I am leery of his experience. They can offer only conformal 3dRT with IGRT for EBRT, which is somewhat older technology

I have consulted with Loma Linda for proton beam therapy and with Dr. Rossi at Scripps for the new pencil beam proton treatment, but these would both require a long drive with overnight stays and iffy to get insurance to cover it.

I have also consulted with Dr. Demanes at UCLA for HDR BT, who has a very good track record, but I would have to change insurance in November to a much more expensive plan (through my wife who works at UCLA medical center). He is on the fence whether he would combine it with EGRT and lymph node radiation. I am next considering consulting Dr. King at UCLA for SBRT since I want to avoid all the nasty SE's from all these treatments. Plus my wife is pushing me to start ADT to buy some time while making a decision.

It is possible I could have HDR BT through Kaiser by Dr. Subir Nag in Santa Clara, but there is very little on the web about him, so I am leaning toward changing insurance in November so I can pursue these other options. The proton people say that it would be all I needed and SEs would be little if at all. Dr. Demanes feels that the HDR BT would have few SEs but the EBRT and ADT would create more, but that I would recover fairly well.

I started out thinking I was low/intermediate risk but now I may be more high risk. I am very confused. I have a very active sex life with my wife of 21 years and want to go with the treatment with the least SEs. At the same time, I have 2 young sons and I want to be around as long as I can.

Everyone on this forum seems to stress getting the best person you can for treatment, so that would mean switching insurance and delaying treatment for 4-6 months, in which case going on ADT might be prudent. Then in January, I can see if insurance will cover Dr. Rossi's proton beam or I can go with Dr. Demanes or Dr. King at UCLA.

I have read almost every book on Amazon kindle, researched hundreds of papers, read every survivor story on Yanonow, and am still confused. This is the best forum site I have found and am hoping someone here can help guide me in my decision. Thank you!

As to the thread title, Gleason 6 is not Intermediate nor Advanced. [edit - jacknsan - Sorry I misread this post and saw the 3+3 but missed the 3+4. Better than 4+3 but still worse than the Gleason 6 I misread. I agree that moves you into a higher risk category. I thank the posters below that pointed out my error- Jim]

Regardless you have the information and seem to be taking the prudent steps to deal with it.

Time is on your side, so do not rush your decision.

If you can afford all the consults I always recommend a team of two urologists/surgeons for a second opinion, one radiation oncologist and one medical oncologist with the latter and as many as possible from a national PCa center. They should not all be from the same practice either.

The medical oncologist should be your quarterback since in theory MO has less bias on the surgery versus various forms of radiation question. The decision however has to remain yours after input from all of them.

For different reasons I am on hormonal therapy for 24 months, and feel the more time I buy the better the chances that technology and research outpace my advanced PCa.

You can tell I have been on Lupron as previously I would never have used the term "I feel", but rather "I think".

What is considered state of the art today will be considered barbaric 10 years form now, as is the case of today versus 10 years ago.

Good luck

LupronJim

He's not Gleason 6, he's definitely Gleason 7 with a possible extra-prostatic extension. That, to me, qualifies as at least intermediate risk, possibly higher. Under those circumstances, I would decide on a course of action sooner rather than later, and my concern would be more on eliminating the cancer than on worrying about side effects. If EPE is strongly suspected, I would think some version of radiation treatment would be my choice. Obviously, I'm not a urologist or a medical person, but I would be acting quickly.

jacknsan - Sorry I misread this post and saw the 3+3 but missed the 3+4. Better than 4+3 but still worse than the Gleason 6 I misread.

I agree that moves you into a higher risk category.

Think I better put myself on a few hours timeout so I do not read anybody else's posts wrongly.

I apologize for the error and by no means meant to minimize your plight. The rest of my post about how to deal with it I still stand by.

Good luck.

LupronJim

LupronJim,
No worries on the misread. Your advice (as well as the others) is good and i will be calling Kaiser today to get an appointment with a medical oncologist and talk to them about starting the ADT sooner rather than later until I sort it all out.
Then I can begin feeling what I should do rather than over-thinking it all... Thank you!

Hi Jacksnan,

So sorry about your diagnosis and sorry you have to be here. But you'll find some great support and sharing here. I'm no expert on staging, but it sounds to me like you're on the high end of intermediate.

A couple of thoughts. Since you're in Los Angeles (as am I), I would see if you could get an appointment with either Dr Sholz or Dr Lam at Prostate Oncology Specialists in Marina del Rey. They are among the best in the world at sorting through your treatment options and giving you unbiased direction. It sounds like you've already seen several doctors...I had as well, but the quality of information I received from Dr Lam far surpassed anything I had before and gave me the confidence to make an informed treatment decision.

If you do go for HDR brachy, I can vouch for the quality of Dr Demanes' team as I had my HDR brachy at UCLA. I think you should go for the best no matter what treatment you choose and if you go HDR brachy Demanes is definitely in the top 2 or 3 on anyone's list. That said, the November date for insurance is a problem--with one exception--if you have hormone therapy as part of your regimen. Often HT is used in conjunction with radiation since it makes it more effective. I started my HT in November 2012 and had my brachy in Jan 2013.

If you have any questions about HDR at UCLA or anything else, you can click on the envelope under my name and send me an e-mail. All the best to you and do keep us posted.

Michael

From articles I have seen, Proton treatment is not more effective than some other radiation techniques. I would not wait months to get proton treatment.
Good luck on your decision and health.

I just moved to Los Angeles from Huntsville AL. I recenlty had a visit to City of Hope Cancer Research Hospital in Duarte CA (just north east of LA). I would get an appointment with the urology department there and get their opinion. They have several top urologists as well as surgeons, radiation oncologists and medical oncologists. City of Hope has an excellent reputation and a strong prostate cancer focus. My advice is to seek the best medical experts and find one you have confidence in. Best of luck.

I had similar stats, with PNI and ECE. Your PSA is slightly higher. I was considered intermediate to high risk, 8 of 12. with tumors in the apex.

chose, or chosen for me because of the above, short term ADT, DART and Brachy

I tried to find good studies on proton therapy and the only data i could find came from the people who make the machines or from their spokes docs.

Hardly unbiased...

IMHO, go with proven , studied and accepted therapies administered by highly experienced and nice doctors.

I am thankful for my zeroes, but I sure would love to have my sexual function be better.

Dave

You are definitely intermediate risk with a possibility to be high risk with that staging assigned. This is assuming you are not upgraded after a primary treatment.

Still see no need to rush a treatment decision, and I know you are not, but wouldn't want to sit around a year thinking about it either.

Good luck, and please ask all you need of us, we are here for you regardless of what you choose to do.

David in SC

"Medicare reimbursement for PRT is 1.7 times that of IMRT, note Dr. Yu and colleagues. The median reimbursement was $32,428 for PRT and $18,575 for IMRT."
&
Ezekiel Emanuel, MD, an oncologist , criticized the Mayo Clinic for building 2 proton-beam facilities, at a cost of more than $180 million each. He referred to it as being part of a "medical arms race," and noted that PRT, which costs taxpayers billions of dollars, has not been proven to be better than less expensive options for many patients.

Jacknsan,
Proton does work, no one is disputing that fact. Every comparison study I have read is that it works no better than standard IMRT and there is no difference in side effects.
Proton does have its advocates and for many it borders on religion. I think this comes with the experience of being with like minded patients undergoing the same treatment while being away from home all undergoing stress from having cancer. Kind of like going to an EST seminar.