Newly Diagnosed - Scared & Confused

Guy,

I agree that your URO seems a little gung ho. I would suggest a second opinion also. My stats are not too different from what you have and my URO who was also a surgeon, pushed hard for me to do AS. I decided not to. It is a personal decision and the caliber of the bullet you choose must fit your own pistol. The advice you get here is excellent. But the decision you make is the one you have to be able to live with.

Do be aware, that biopsy results are not perfect. There is a reasonable chance that the gleason is off a tick one way or the other. There is a chance that the biopsy just flat missed the bulk of the cancer as well. Even so, it is very obvious that you ain't eat up with it and you have a reasonable amount of time to work your way out of the woods.

If you do decide surgery, (and don't do it because of what your knothead URO told you, do it because it is the option that best addresses and solves your unique problems), there are plenty of us that have done it and can talk you through it. You are in that class of us that have all the options available, and all of them will usually result in success. You have to determine which is best. Do your own research and talk to guys that have experienced each method. Being here on HW is the best decision you have made yet. So you are off to a good start.

You might also look into high intensity focused ultrasound (HIFU). It is currently not and "approved" treatment in the US but that is expected to change any time now. There are forum members who have had HIFU overseas as their primary treatment and they speak well of the experience. HIFU offers many of the same short-term side effect benefits as brachytherapy but with less possibility of long-term problems.

If you decide to do AS for a while you might look into HIFU as a possible treatment option for a future time when you decide to seek active treatment.

Before I decided to seek surgery I thought about waiting for HIFU to be approved. I did quite a bit of research. Then the second opinion on my third biopsy bumped me from GS6 to GS7 and waiting no longer seemed like a good idea.

There are two main competitors for HIFU equipment. There is an American company that makes a machine called the Sonablate 500 and an French company that makes the Ablatherm. Both machines are in wide use outside the US. As of last year the Sonablate was a much better machine but the Ablatherm people claimed they were making improvements to match it.

And, yes, unless something changes you probably have that kind of time.

guybyny, I’d like to help clarify how Active Surveillance programs generally “work” for you and other readers of this thread now and in the future, and in particular in this post I will seek to clarify how one generally “enters” an AS program.   (Many of the threads at HW each have a potential “legacy” value; it’s amazing how often they re-surface and are re-read by others in the future.   The threads also become useful references for future threads; for example, someone in a future thread might “link” back to this thread, rather than re-typing all this good information, and say “read this thread for more good info about AS.”) So regarding how AS programs “work,” an important piece of background you and others should first be aware of is that there is not one single, unified Active Surveillance “protocol.”   There are numerous similarities between the major AS programs run at some of the major centers * , but they are not (yet!) exactly the same.   Out at the community practice level, for those urologists that are “on-board” with AS (sadly, some still are not), they remain free to adopt their own program, perhaps individualized to the patient, but often they generally align with one of the major centers.   The point that readers need to understand is that today there is not one universally agreed-upon protocol for either: i)               accepting patients into an AS program, ii)              on-going monitoring tests/frequency, iii)             steps to help the patient help-themselves to stay on AS (lifestyle changes, and other support functions), or iv)            exiting the AS program for deferred curative treatment (if necessary).   Now, to the point I sought to make regarding how one generally “enters” and is accepted into an AS program.  First, recognize that because there is a lack of uniformity in protocol, anyone at basically anytime can certainly declare themselves to be “on AS”…it’s a free country, you can declare what you want!   In the major programs, however, it is not so easy, and they are in fact very selective so as to help insure the ongoing success of their programs…and they are, indeed, very successful .   Just having the initial diagnosis case characteristics of being in the LOW RISK category (where you appear to be now, guybyny, based on what you have posted so far) does not mean you are assured eventual entry into one of the major programs.   If you listened to the video link I provided earlier in this thread, you learned for example that at MSK the initial LOW RISK diagnosis makes you a candidate for future entry into AS.   Being LOW RISK is simply an affirmation that additional testing for an AS program—which might be spread out over multiple months—will not likely put you at jeopardy. As you are probably aware (and has also been pointed out already in this thread), the biopsy process is only a “sampling” of prostate material, and some men are found (on re-biopsy) to have either more or less PC, or higher or lower Gleason scores, than their initial results found (“upgrading” or “downgrading”)…this point also highlights the importance of having all biopsy slides read (or re-read) by a pathologist who is expert in reading prostate cancer samples (another point already raised in this thread).   So, possible “candidates” (such as yourself) are required (at MSK, for example, as part of their institutional protocol) to undergo MRI testing and re-biopsy within 6-12 months to confirm the initial LOW RISK assessment before “entering” into the AS program.   This level of strictness, as previously mentioned, protects the program and protects the patient by weeding-out those who are not clinically suited for AS. The program rigor I have provided a view into is not well understood by casual readers, which helps contribute (I believe, in some cases) to men making “rushed” decisions for immediate aggressive treatment with incomplete or inaccurate information.   These men are often “treating their fears” about the very scary term the big-C rather than “treating their disease,” which some may come to regret later. Hope this helps…   * NOTE:   While not attempting to provide a comprehensive list, a few of the “major AS centers” from which one can find much of the published medical literature include UCSF (University of California at San Francisco), Brady Urological Institute at Johns-Hopkins University in Baltimore, Sunnybrook Health Sciences at the University of Toronto, and MSK. Post Edited (Casey59) : 11/29/2012 2:59:48 PM (GMT-7)

Guy, I have to say I never seen so many responses to a post in such a short amount of time. Please, If you consult with any Dr. especially at MSK, let us know what they said. I was diagnosed in February, Age 51, PSA 4.0, 1 core of 12 (23%), Gleason 6. Had a second biopsy in October all 12 negative. Decided on AS until PSA rises or more cores show up on future biopsies. Any information on AS is of great interest to me, especially individuals experiences.

Iggy...that is terrific. No treatment and no cancer 1 year after diagnosis. Did you change your diet at that time? Any other lifestyle changes?

guybyny:

Please understand there is a whole bunch of difference between traditional radiation treatment ( IMRT or intensity modulated radiation treatment) that take about 6-7 weeks to complete and SBRT ( stereotactic body radiation treatment ) which imploys hypofractionization - only 5 high dose treatments. The two most common are CyberKnife and RapidArc. IMHO, CyberKnife is the better of the two, but both are more effective than IMRT and have less side efects than IMRT.

Like I previously suggested, please see Dr. Alan Katz in Flushing for a consult. According to John Hopkins, you have months, not weeks to make a decision. Low risk CaP, such as yours is very, very slow growing.

JAVGuzzi

JAVGuzzi - FYI...I have a consult with Dr. Katz on the 17th.

Can you describe the treatment process and how it affected you?

Much Appreciated.

guybyny:

Excellent - you made my day !!! You can trust Katz to give you the straight skinny. And shoot at him with as many questions as you can come up with.

Here is the general treatment protocol :

1.) 3-5 very small non-radioactive gold fiducials are placed in your prostate. These are placed either by a urologist transrectally ( just like a biopsy, but in reverse) or by a R.O. through the perinium ( Dr. Katz does it this way ).

2.) After a week or so, a CTScan is done ( with a foley catheter inserted) and a MRI ( with or without the foley - depends on the specific Center). From this data, they can define the capsule of the prostate & so can the CK machine during treatment with it's two built-in Xray machines. It keeps track of the locations of the fiducials and from that, the program knows where the prostate capsule is located. The XRay machine checks the fiducials about every 20-30 seconds.

Please let us know about your consult with Dr. Katz.   Thanks.

3. ) Then the Radiation Physicist go to work to develop the "Plan" , which is the computer program that controls the robotic arm the linear accelerator (LINAC) is mounted on, as well as the beams and IRIS collimator ( if used). Dr. Katz strongly believe the IRIS produces better results with less side effects.

4.) Each of the 5 high dose treatments last about 45-60 minutes each. They are given once a day or maybe every other day, depending on the Center, with a break over the weekend. It's important to stay as motionless as possible to prevent "resets" which will result in the machine stopping and re-positioning itself due to prostate movement. I had my R.O. prescribe Valium that I took one hour before each treatment. Some patients listen to music during the treatment. Some others claim they snooze.

That's it. For myself, I had treatments every other day and the only complication I had was a slight burning when urinating the afternoon after each treatment I had at 8:00 am each morning. The day after treatment, I was back to normal. This continued after each treatment. I had some burning during urination for about 10 days after I completed the 5 treatments, but I didn't need any meds to handle it.

I was a bit fatigued after exerting myself for about a 3 weeks after treatment, but I learned that if I sat down for 15 minutes and drank some water, I was then fine. That has been the extent of my "complications".

Please let us know how your consult goes.  Thanks.

My husband psa result are 57.6 he has had biopsy and is waiting for bone scan He is also 57 years of age I am looking at cancer right! What do i do to keep positive and how do I arm myself with knowledge to battle this Has anyone been anywhere near this range?

isles:

I have started a new thread with your questions. That way more people will see it and be able to help you.

www.healingwell.com/community/default.aspx?f=35&m=2592666

You said your husband has had a biopsy. Do you have access to the results or hasn't it come yet? Some of the information there will help us know what to tell you. Was there a "Gleason" score? It looks like a number with some other numbers in parentheses. Mine looks like "GS9(4+5)".

It's been a while since I posted on this thread & thought I'd provide an update.

I decided on palladium seeds with Dr. Zelefsky at MSK. Impressed with the facility & team.

Had the insert done on Feb 20. Had my follow-up on 6/24 & my PSA had dropped from 4.2 to 1.6 and Dr. Z was pleased with the rate of decline. Next follow-up in December.

Side effects minimal but continue to take Tamsulosin to help with flow issues. Retention issues much better in weeks following the implants. Bowel issues, initially false urgings, have dissipated though some occasional bleeding is evident. Sexual side effects not an issue.

This board and its members were greatly comforting to me in the initial days of diagnosis, approx 1 year ago, and I remain forever grateful for the advice and comfort provided.

Guy....I second what everyone else is saying....I live in NY (upstate) as well and my first Urologist said surgery...no questions asked......since he didn't do surgery I was referred to another the next town away....he also said surgery but recommended me to do it by a well know guy in Rochester, NY.

My insurance sent me a letter saying that guy was not in the network and Id be paying Point of service fees.....which were high so they referred me to the university hospital in Syracuse...which is just 2 hours away......been going there ever since because I trusted my URO....he was the first guy to tell me he'd be glad to do the surgery but he though radiation was best.....that told me right there he wasn't in it for the buck but for me.

Point I'm making is those local guys don't seem to really know much about cancer....they're UROs and not cancer specialists. Your doctor saying a Gleason 6 is almost always aggressive in a young guy is just plain wrong.


Id ditch this guy in a NY minute and go to Memorial Sloan.....good luck in whatever you choose.