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Posted 8/12/2016 2:00 PM (GMT 0)
You are in the center of some great information and you can see the great interest members are taking in you situation. Of course none of us are doctors, but all are interested.

From my perspective, there is nothing in your initial dx that indicates that you should be doing anything but research, getting several opinions, weighing options, and most importantly....living life as large as possible. You may never need to treat this. On the other hand if you need or decide to treat, you should always approach low risk by choosing the treatment that does the least damage and presents the least side effects. It has often been said that low risk is usually over treated and high risk is often under treated. If you are as low risk as you appear initially, surgery would certainly be over treatment.

Another saying is that the prostate cancer that is easily cured does not need to be cured. Hopefully that is your situation. It means that a true G6 has never been found to become metastatic and thus dangerous. Thankfully many men live a normal long life with untreated G6 and die of all the other things instead.

How do you know if you are a true low risk G6? Take your time and continue to investigate. If it is something else, it will tell you as long as you are monitoring and managing the situation.

So as I started my initial comment some time ago, relax. Time is on your side. Nothing dire is going to happen to you any time soon........unless you jump at a treatment that may never be needed. Remember, all treatments carry a certain level of risk and side effect.

Best wishes and have a great Hawaii weekend....I am envious. And get to know Bolo.......he can help.
Posted 8/12/2016 4:26 PM (GMT 0)
As for the additional biochemical tests...

Oncotype Dx and Prolaris are the major genetic profile tests. They provide additional information beyond stage, PSA and grade. If you are shown to havelow genetic risk, that might make you more comfortable with AS; high genetic risk might push you towards earlier treatment. They are very expensive-- $3000-$4000. So the question is, is it worth it? Most guys with low risk PC will have lowish scores, as you might expect. AS is an early warning system anyway that gives you plenty of time for treatment - so is anything really gained by having the test? You have to decide for yourself.

4Kscore and PHI are biochemical tests that are similar to a PSA test (in fact, they both include PSA) but are somewhat more specific for prostate cancer. Their main use is in predicting who should have a biopsy. You already had a biopsy, so they are not necessary for that. An experimental purpose is to use them for periodic tracking while you're on AS, instead of a PSA. They seem to be better than PSA for that purpose. The two tests are very similar in accuracy -- the difference between the two tests is mainly cost. 4Kscore costs about $400 and is rarely covered by insurance, so using it for tracking (at about 4 x per year) can get very expensive. PHI is cheaper, at around $125, and is always covered by insurance (they guarantee it). So, I have a preference for PHI. You have to call the lab and find a local urologist who offers it, and you'll have to pay a co-pay for that office visit.

- Allen

Post Edited (Tall Allen) : 8/12/2016 11:35:03 AM (GMT-6)

Posted 8/12/2016 5:32 PM (GMT 0)
Not sure I can help any more than I have JNF...Being on Maui I really only know its impact on pca care...I have no faith in any of the local urologists or pathologists...they live down the road from hicksville...thats me...Im have an 80 y/o freind who was radiated locally... presented witha gl8.and a prostae the size of an apple...He is still kicking with not further tx as told to me...tho I suspect he may be on HT...which is his business... Oahu could be totally different...one thing I know about hawaii is that there is a kalaidoscope of mind sets grappling continuously between the different cultures that reside there...The beginning narration in the movie Descendants by Clooney well depicted this specter...
ps I do appreciate your vouch....
Posted 8/12/2016 5:54 PM (GMT 0)

Allen said...
Clinical stage is never based on biopsy results,


I do not think this is the case. The American Cancer Society writes:

American Cancer Society said...

"Clinical staging
This is an estimate of the extent of the cancer based on results of physical exams, imaging tests (x-rays, CT scans, etc.), and tumor biopsies".


Also the NCCN guidelines specify on the staging page for T2:

NCCN guidelines said...

*Note: Tumor found in one or both lobes by needle biopsy. (Page ST-1).

So the guidelines refer to needle biopsy for staging.

Further:

NCCN guidelines said...

T2a: Tumor involves one-half of one lobe or less
T2b: Tumor involves more than one half of one lobe but not both lobes


According to the note cited above, T2a und T2b can be determined by needle biopsy.

Allen said...
NCCN does not have any different categories that depend on whether one half of the prostate had positive biopsy cores.


If you take twelve cores as usual, there are six cores for each lobe and half of that is three needles.

The guidelines specify for the low risk category (page pros-2):

NCCN guidelines said...

Fewer than three prostate biopsy cores positive .....


George

Post Edited (George_) : 8/12/2016 11:58:40 AM (GMT-6)

Posted 8/12/2016 7:17 PM (GMT 0)
George, (with apologies to the OP for this sidebar discussion)

I assure you it is the case. The AJCC (7th edition) defines the clinical stage categories that most clinicians in the the US and Canada adhere to.

What AJCC says is:

"Tumor found in one or both lobes by needle biopsy, but not palpable or reliably visible by imaging, is classifed as T1c." (see note 1 in the link below)

/cancerstaging.org/references-tools/quickreferences/documents/prostatesmall.Pdf

The errors you made in your citations are because:
(1) the ACS page you cited is not specific to prostate cancer
(2) NCCN directly quotes the AJCC guideline that I quoted above and on the page you cited - ST-1. Oddly, you put a period at the end of the first phrase where a comma should be (Why would you do that? Are you intentionally trying to misinform, or is this because of difficulties with English grammar?)
(3) Saying one half (i.e., one lobe) of the prostate is different from saying one half of the cores.
(4) You also misquote the NCCN low risk category (it is on page PROS-3), which has no requirement for # of positive cores. You seem to be pulling that from their definition of "very low risk" PC (page PROS-2).

- Allen
Posted 8/12/2016 9:23 PM (GMT 0)
Of course but

Allen said...
most clinicians in the the US and Canada adhere to.


Do there exist other classification systems? I 'm pretty sure this classification and staging systems is used world wide. Otherwise we would not be be able to make comparison of clinical and pathological data obtained from different hospitals across the world and to make recommendations on their treatment. I read the exact same text from the European Association of Urology.
Posted 8/12/2016 9:39 PM (GMT 0)
PAX, welcome again to our club. You've got some digging to do, and some research. The good news is...it's probably not going to kill you for a long time...if ever. I'd agree with the suggestion to get the second opinion on your slides. Once you have that, you've got a solid data point to work from.

On the subject of finding experts....well, that's a challenge sometimes. Our friend Bolo may be able to suggest people on the Islands. Or not. I know there are several good ones regularly mentioned here on the West Coast....maybe some of the guys from there can make suggestions. I live a lot further east, so I can't speak of anyone near you.
Posted 8/12/2016 10:12 PM (GMT 0)
Gemlin-

Yes there are other staging systems used for PC... well, one that I know of. Someone a few weeks ago used the old Whitmore-Jewett Staging System, which uses stage designations of ABC & D. I don't know where he was diagnosed. AJCC will redo their stage system next year. I've read several suggestions for subcategories. I can think of a few changes I'd like to see.

- Allen
Posted 8/13/2016 12:17 AM (GMT 0)
I have no reccomendations for experts in the Islands...SEA is a nice flight away to a host of experts...from soup to nuts...my month there for surgery and recovery was mystical...I always recommend Bruce Dalkin for open...nerve sparing surgery... tho Im not sure he is stll there...if I ever need additional treatment it will be at University of Washington{the Dub}with whomever the light leads me to.......
Posted 8/13/2016 12:23 AM (GMT 0)
I would go with TA on the staging issue...he is an excellent researcher...its hard to compete with....passion.....
Posted 8/13/2016 12:26 AM (GMT 0)
I will have a beer, a bourbon, a martini or a wine with most everyone; but I will not argue with TallAllen. Talk about sourcing a point!!!

The whole point for Mr. PAX is that he is low risk and has many non invasive options. Ride the surf and eat the poi PAX.

You will do well by doing little.
Posted 8/13/2016 4:41 AM (GMT 0)
Thanks again to everyone for the support...I am finding the info from this forum invaluable in helping me to better cope with my situation and giving me the strength and knowledge to move forward with my continued research. I only hope that one day I will become as knowledgeable/proficient as JNF and Allen so that I may also be of help to others on this forum.
Posted 8/20/2016 3:05 PM (GMT 0)
hi Pax,

Few mention on this site Focal Therapy as an alternative. To me a minimally invasive procedure with ability to eliminate your lesions and greatly reduce the potential side effects of surgery or radiation. I have made several posts this morning with my experience using focal laser ablation.

I had FLA performed last year to eliminate a g6 and g7 in Texas. Six month post FLA my 3T MRI shows no PCa and PSA down feom 3.3 to 1.85. No ED or incontinence issues.

Check out a site called "inspire" which has a tread dedicated to FLA.
Posted 8/21/2016 4:51 PM (GMT 0)
My husband had Genetic testing done last week and we are waiting for the results, says it will take 3 weeks.
We see our Oncol. next Fri. and he may or may not have the results.

We were told by the Genetic Counselor that there is a small percentage of men that actually will show Genetic pre-disposition as it is a grey area.

Allen may be able to shed light on this> I am not aware if my husband's test was Oncotype and Prolaris,
but it was done with a blood draw and we were told it runs around $400.00 for this test
Perhaps there are different types of testing?

BOOGEE
Posted 8/21/2016 5:08 PM (GMT 0)
The tests I know of that cost just that amount may be the MiPS test (PCA3 and TMPRSS2-ERG fusion), the 4Kscore or ConfirmMDx. But all of those are only used to predict whether a biopsy is needed, so it probably wasn't any of those. It may also be a CellSearch CTC test, which isn't all that useful. You'd have to tell me the name of the test before I could comment.

- Allen
Posted 8/21/2016 8:30 PM (GMT 0)
Welcome PAX, sorry you need to be here. Youre getting a lot of good advice here. Pratoman, me, and now you were all in a similar place to begin with (Save for Prato's early scare with G8). I was 53 at DX, 54 at surgery. I was also upgraded from a G6 to a 3+4=G7 post op. Bolo makes a good point about % of cancer in the cores. That put me in a tailspin for awhile until a few here explained it to me. Dont give it a lot of thought. My tumor turned out to be about 10%. As others have said, you are catching this early and have time to think and investigate. For me being a T2c with some penetration into but not through the capsule, I dont regret having RALP even if I still have side effects. I'm 14 months post-op. I had minimal incontinence for a few weeks. None now. Still dealing with ED but I do have some reaction & I know it can take a good two years and maybe a bit longer for things to heal as far as they will. Good luck and stay in touch.
Posted 8/22/2016 5:38 AM (GMT 0)
Thanks to Wolfster for letting me know about FLA...I hadn't come across that type of treatment in my research up to this point. I spent a few hours this morning finding out more about this procedure and as with many of the different kinds of treatment available, found many references on the web. However, as many posts reflected in the Inspire board, finding out about insurance coverage is difficult. I had even experienced some of the bureaucracy involved in dealing with my health insurance carrier when trying to get info on the coverage for a second opinion @ Johns Hopkins. Thanks also to Northern Lights for your support and sharing about your experiences. I'm still finding it challenging to deal with the psychological/emotional part. I will be meeting with my Urologist tomorrow for his interpretation/recommendation on the biopsy results...at least I'll be equipped with more info on options available and not be so vulnerable to suggestions of immediate surgery....I will still need his assistance with completing some of the forms for Johns Hopkins though.
Posted 8/22/2016 6:35 AM (GMT 0)
PAX,
Focal ablation is for guys who have one or two positive cores, or who have all positive cores on one side (hemi ablation). You are not a good candidate.

- Allen
Posted 8/22/2016 8:18 AM (GMT 0)
Regarding focal treatment: PCa is a multifocal disease. This means you have to expect lesions in the prostate that are too small to be detected with MRI and which will remain untreated with a focal treatment. These lesions will cause recurrence.

Focal therapy is applied in PCa stages that could also be handled with active surveillance. This can be a better alternative than focal treatment.

Here is a presentation discussing the problems with focal therapy:
HPCS Markus Graefen

George
Posted 8/22/2016 9:32 AM (GMT 0)
Thank you for sharing that information (TA, George), but to gain a better understanding of treatment options available, does focal therapy include radiation therapies like SBRT (cyber/gamma knife)... if so, does that mean that as someone with multiple positive cores, I would not be a good candidate for SBRT as well?
~PAX
Posted 8/22/2016 1:00 PM (GMT 0)
Pax,

there are therapies that allow you to do focal operations as well as complete treatments of the prostate. I am aware of CyberKnife and NanoKnife. Further, I think it is even possible to remove just one lobe with surgery but I would not recommend that.

In general I do think treating the whole prostate with CyberKnife is a good alternative. I had a complete ablation with NanoKnife and that worked well too, however, it is not standard of care. It can be done if your CyberKnife center does not accept you because of extracapsular extension etc.

George
Posted 8/22/2016 4:40 PM (GMT 0)
PAX-

Primary focal therapy has never been done with radiation (neither external beam nor brachytherapy). Salvage focal therapy has been done with brachytherapy after failure of primary IMRT or brachy failure. Salvage whole gland therapy has been done with SBRT after IMRT failure.

GammaKnife has never been used for prostate treatment.

SBRT/CyberKnife is not a focal treatment, it is always whole gland. You would be an excellent candidate for SBRT.
Posted 8/23/2016 9:06 AM (GMT 0)
Just wanted to bring the members who were providing me feedback on this thread, up to date on my situation. I went to see my Urologist today to discuss the findings from my biopsy...I had previously spoke with him over the phone, but this time I had a list of questions based on some of the research I have been doing. He agreed that due to my G6, I still had time to look into other therapies, but did not feel I was a good candidate for AS due to the number of positive cores from the Bx. Unexpectedly though, he was in favor of me checking out radiation Tx's through another MD due to the higher rates of incont. and ED with surgery. He was also willing to sign the forms for me to get a second opinion from JHU, but commented that they will probably either confirm the original reading on the biopsy or give a higher score. He also scheduled me for an MRI to get a better idea on the location of the Pca and whether nerve sparing surgery would be appropriate. Although he was able to answer most of my questions, I still left feeling uneasy about my situation...don't know if this feeling will get better as I proceed on my journey, but hopefully I'm proceeding in the right direction with getting a second opinion on the Bx, getting an mpMRI done and consulting with a radiation oncologist locally to discuss possibility of SBRT.
Posted 8/23/2016 2:34 PM (GMT 0)
PAX - your situation is similar to mine (percentages differ and I have one core G3+4) - we are both relatively low risk cases, with yours a bit lower than mine. We have lots of options -- so many that it can become very overwhelming to try to decide what to do. But we also have time to make informed choices.

Your uro seems to be pretty well balanced, as is mine. (I posted a summary of my post-biopsy consult in another thread.) What we need to do is make the decisions one at a time, I think. For me, the first choice was surgery or radiation. Thus far, I'm choosing radiation. For me, the impact of another major surgery after others I've had, along with the side effects potential after surgery, bring me to tend toward radiation.

Next, and this is where I am now, is to meet with some radiation oncologists to find out which radiation therapies they feel are appropriate for your specific case. I am meeting with two RO's next month and will not try to cause them to focus on my "favorite" treatment mode until they have had a chance to tell me what they feel is appropriate for me. The centers I am visiting do intensity modulated radiation treatment (IMRT), image-guided radiation therapy (IGRT), stereotactic body radiation treatment (SBRT - CyberKnife), low-dose brachytherapy (LDR) and high-dose brachytherapy (HDR). My current interest is in the CyberKnife SBRT (I won't hi-jack your thread to discuss why, unless you want to bring that into the thread.), but I will try my very best to allow the RO to give me their opinion first.

What I do after these meetings, I haven't yet tried to decide. I will most likely choose one of the centers and begin the pre-treatment planning, but that could change - especially if I find reason to become comfortable with Active Surveillance, or if I hear something that makes me uncomfortable with radiation therapy.

In my professional life, I've had a lot of project management experience. I personally find this a lot easier on my emotional state if I approach it as a project to manage. Figure out the plan, then work the plan. Adjust as necessary, but the goal never changes.
Posted 8/23/2016 4:41 PM (GMT 0)
Thanks Paxton for your advice on perhaps taking viewing this journey as a project and keeping focused on the goal. The feedback I received from members on this forum advising me that I did have time to live my life a little and do some more research was also very helpful. However, I just wished that I could have gotten the same kind of feedback from my Doc...he seemed to want to push for taking doing some kind of therapy within 6 mo to a year. But then again, maybe he is more perceptive than I thought and realizes the psychological torture I am going through in trying to deal with all of this. Also when I was asking him questions during the visit, he seemed uncomfortable at times, and seemed rushed to end the visit...seemingly not very supportive...but then again maybe I just gotta keep my emotions in check...although I'm finding it hard at times.
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