Need input : AS or Treatment ?

Hey guys, 

I was originally diagnosed in September 2012.  Age 53. 

I posted here a couple of days ago regarding a re-read of my biopsy, but I forgot to include a few details that are important. So I'm posting again to get as much fully-informed feedback as possible.

Here's the scoop ( sorry if it's a repeat for some of you ) :

Age 53. DX  7/12.  

Biopsy read by 2 different labs.  Second lab was at a "urology top 10" university-affiliated hospital.

Original lab :  Gleason 6.  2 of 12 cores positive, one 15% one 5%.  3 other cores "atypical glands". 

Second  lab :  Gleason 6.  1 of 12 cores positive, less than 5%.  3 other cores "atypical glands". 

And...the 15% core on the original read of the biopsy slides is the same core the second lab says has NO CANCER, but is instead "atypical glands".  Both labs agree on the other core being positive, but the second lab says less than 5% vs 5%.

To add to the confusion.....DRE was ABNORMAL last September...supposedly a "small nodule", so I was staged T2A.

Also, father DX PcA at age 62, was into bladder neck, had RRP, followed by salvage, but he is now 84 and doing great.  And he also had Gleason 6.

I know biopsies are not perfect, but as I see it, the second lab ALMOST told me I did not have cancer.  And knowing that makes me hesitate about jumping to surgery....until I start thinking about the nodule and family history.  I know some experts say AS is fine for both T1 and T2A guys, but even if AS is ok in my case, at age 53 I assume that all AS is doing for me is postponing the inevitable. 

Thoughts / suggestions appreciated.   Thanks again !

yes, would like to see your psa trends before making a suggestion

if it wasn't for your "family history", i would be willing to say, consider AS safely for awhile. that would be a close call. definitely doesn't make it sound like you need to rush into a treatment deccision. if you choose to be treated, then go for the least invasive method suitable for you. Radiation Seeds might be a good choice to consider. Surgery would probably take care of the cancer for you, but comes with the risks of incontinence and ED issues.

david

Almost :

I know I'm starting to sound like a broken record on this forum...... Please look into CyberKnife if you decide on treatment. IMHO, anything else (especially surgery) is not worth the risk of greater side effects.

Go to the Accuray website for more info about CK and Dr. Katz's site :

http://www.cyberknifeprostateradiosurgery.com/

Surgery is no guarantee that CaP won't re-occur. You can already have some cells outside your prostate. All treatments have roughly the same chance of this happening - about 4%. Good Luck on your journey.

Sounds like you guys generally agree that AS would only be a delay in my case, and I feel the same way. 

FrackMe,  we're almost the same age with a similar Dx, and I have the same thoughts as you regarding surgery.  The sooner I do it,  I figure the more likely it is that I can return to at least a somewhat normal sex life and hopefully not have incontinence issues. 

I've also considered either sending my biopsy slides to a top pathologist such as Epstein at Johns Hopkins, and / or getting another biopsy.  But that may not really get me anywhere, or it may just add to the muddle.     

You got a tough one there. Delaying treatment also means delaying side effects. The question is when to start treatment and what treatment to do. You've got a number of choices, AS, surgery, radiation, etc.

In your place, I'd be very tempted to go into AS until there was a clear trend of rising PSA.

Getting another expert opinion would be very good. What I wouldn't do is to rush into a treatment right now.

Almost, This is a decision only you can make.  Everyone here has gone or is going through the decision process.  Each individual has there own reason for choosing the path they take.  In my case some say I am following AS but actually I am just taking my time, doing my research and not rushing into anything.  Like you I feel I will need treatment at some point.  By not rushing into anything, research is advancing, more information is coming out on Cyberknife, Proton therapy and more sensitive MRI's.  In my case waiting a year or two may lead to a better treatment and at anytime I can pull the trigger and have treatment

robertC said...
There are a few places in the USA that do Targeted Focal Therapy, using MRI to find the tumors using focused cryotherapy or laser. I don't know if insurance would cover this.

There is a trial of NX-1207 involving injection of medicine into prostate tissue as experimental treatment.

Just thought I would add these as intermediate treatments. Good luck.

My insurance covered it by cryo. They only balked at the mandatory 3 D saturation mapping biopsty. Once explained  by my doctor it was approved. The only place I know where TFT is available is here in Denver. see link below. It's been a complete success. I still have a functioning be it a smaller prostate. the only side effect is a 60% loss of ejaculant.

http://3dprostate.com/

Looks like I am the only one that chose AS. Dx in Aug, 3 out of 14, all G6. I am 59, my Uro suggested AS.

I am buying time and hope for new treatments that will have less SE in the future. I think you have plenty of time to decide. No hurry. Couple of new tests should be available soon that might help predict how aggressive your PCa will be.

I think that the assumption that you are delaying the inevitable is not correct. The facts are that 70% of men with low risk PC never progress and you are in the very low risk catagory. The UCSF program on AS that includes diet, mediation and group support has a 100% non progression rate compared to the normal 70% for their control group on AS.
You are also forgetting that delayed treatment on any signs of progression has the exact same cure rate as immediate treatment. To me it seems that the trade off of having treatment and having a 50% chance of permanent side effects is far outweighed by going on AS and having a 70% chance of never being treated plus the exact same results if you have to be treated in a few years.

John:

Isn't it a fact that 40% of those who opt for AS end up seeking treatment within 5 years? I know many of these do it for psychological reasons.

We had a member here recently post that after trying AS his disease progressed and he now had to seek treatment. Personally, I'd hate to delay and risk more hardship in dealing with possible side effects.

I know AS is a good option for some and for everyone to at least be informed by it, but I personally think that when one is very young, and still has 30-40 years ahead of him it is not as attractive an option than if one probably has 10-20 years.

There's also a lot to do with AS done properly including many of the steps mentioned above. Not only is that not cheap, but for someone like me, and there are many of us, it means never putting this crap behind us.

I say this while I am trying to convince a dear friend to at least consider talking to an AS expert. He's currently set on surgery or radiation.

Almostretired -- Perhaps my story can help somehow in your discernment process. Like you, I was 53 when Dx’d and my father also had PCa. My DRE, however, only indicated an enlarged prostate. Biopsy results said I had a Gleason 6; 30% in 1 of 12 cores. I also had 2 cores with high grade prostatic intraepithelial neoplasia, one of which also included atypical small acinar proliferation. I had my slides reviewed by Johns Hopkins and Sloan-Kettering who both ungraded the amount of cancer in the one core to 50%.

Not counting my local uro, I had consults with 3 surgeons and 2 radiation oncologists; I went to a regional hospital and to two major cancer centers. I was told that I would do well with surgery or seeds and possibly - AS. The rad onc I would have picked if I had chosen seeds, recommended AS. The surgeon I went with said if the amount of cancer was below 50% he would be OK with AS, but since it was 50% he thought I should have either surgery or seeds; and that I should get treatment sooner rather than later - within a couple of months.

My post-surgery pathology confirmed the G6 score, but I ended up with cancer on both sides contrary to what the biopsy suggested ... and the cancer had escaped the prostate, but not the capsule. The surgical margins were clear, the SV and lymph nodes were clear. My surgeon told me, in his opinion, my cancer would have gotten out within 6 months to a year and that my surgery was “timely”.

What will your cancer do? Nobody knows. But G6 is a slow growing cancer and I believe you have time to explore your options. No need to rush into a decision. It took me 6 months to go from diagnosis to treatment. I would urge you to get second opinions, if you haven’t already - have consults with another surgeon and a radiation oncologist, preferably at a major cancer center. You only do this once; there are no do-overs. You need to be comfortable with your decision. If you do choose AS – make sure it really is “Active”. Starting with another biopsy and follow up PSAs every 3 months. Then a biopsy every year unless the PSA tests say otherwise.

If you choose surgery or radiation, be sure your doctor has plenty of experience. For surgery there are definitive studies that demonstrate better outcomes if your surgeon has done 250+ procedures. You also want someone who does at least 3 per week. A radical prostatectomy (open or robotic) is a very complex operation, one of the most difficult surgeries in medicine.

I feel for you. I’ve been there. It’s a tough decision. There are many choices. There are no right or wrong answers. I wish for you - clarity and confidence in your decision - and success on the path that you take.

-- Tigerfan