New diagnosis, looking at options

Kongo said:

:P.S.
As usual, Ira makes very good points and two of them in particular are quite relevant to Mac's situation, in my opinion.

First, each specialist will most often spin their treatment specialty. I was lucky enough to find one (my CK doctor) who didn't do that but I think he is pretty rare. Most of these doctors are very persusive and confident in their recommendations and after all, they're DOCTORS and we have been brought up to trust our doctors. One of the hardest things in the PCa merry-go-round is learning to view all the advice you get with a high degree of suspicion and ask direct, pointed questions. We can only do that if we have done our homework BEFORE we meet with them and for most of us, we get the diagnosis and are immediately thrown in to follow up discussions with specialists without even the vaguest idea of where the prostate is even located, what it does, and what any of the statistics they throw at us actually mean.

The other point Ira makes is that with the conditions you describe, you have plenty of time to make a very deliberate and considered decision. There is no urgency in your case. I would get a second opinion on the biopsy if you haven't done it already, get your PSA tested every three months while you ponder your options, and make lifestyle changes that can help lower your PSA such as eliminating dairy, increasing your exercise, and cutting way back on red meat.

Kongo said:

Great Discussion Thread
Mac,

Your eloquent post captures the essence of the difficulties in coming to grips with prostate cancer. While advances in medical treatment options have furthered efficacy in treatments in general and given us more to choose from, in many ways these advances have made it more difficult for the patient. It seems absurd to me that the medical community had devolved to the point where the burden of figuring out the best treatment choice for this very complicated disease is now the responsibility of the patient and not the physician experts who have spent years of study, residency, and practice to be able to wear that white coat they don when they meet us. Most men have no idea how to go about making this kind of decision or how to adequately weigh the advantages and disadvantages of any one treatment over the other based on their unique cancer characteristics. After initially receiving the news about having cancer, we are all too often handed a couple of glossy brochures at the doctor’s office and expected to somehow use these to make some kind of decision that will affect the quality and length of our life for what time we have left. I suspect that most men end up doing whatever that first doctor tells them will “cure” their disease because it’s just too hard to go against the doctor. Most of those first physician meetings are with urologist-surgeons and the newly diagnosed patient is led down the path toward RP without understanding the full range of consequences of that choice or that there are even any other viable options.

In my own case, I constructed a matrix where I listed every treatment option I researched across the top horizontal row and along the vertical side I listed all of the factors which I considered important such as likelihood of a “cure,” side effects, availability and convenience, odds of recurrence, recovery time, costs not covered by insurance, rapport with the treating physician, quality of life, and so forth. Once I’d done this I color coded responses in green, yellow, and red and played all sorts of “what if” games by sorting the matrix in different ways. The treatment choices in my matrix were open RP, robotic RP, proton therapy, IMRT, Brachytherapy, cryosurgery, HDR brachytheapy, AS, SBRT Varian , and SBRT CyberKnife. I had looked into HIFU but since it was not FDA approved I decided against it early as it was important to me to find a medical team associated with a treatment choice that would be with me for the long term, not just during a weekend in Mexico or the Bahamas. I did not consider hormone treatment as a stand-alone treatment or as part of a “combo pack” as my research had pretty well led me to conclude that I didn’t need HT in treating the low risk cancer that my numbers strongly suggested.

In the end, the determinant factors that led me to CyberKnife were more intangible and involved quality of life issues in the area of urinary incontinence and maintaining sexual potency. Since there are so many competing studies in this area that frequently offer conflicting conclusions for a whole lot of reasons to numerous to itemize in this post, at the end you sort of have to hit the “I believe button” and go forward. Otherwise you will find yourself in a state of perpetual paralysis by analysis.
I also made a commitment that in conjunction with a treatment choice that I would adjust my diet and lifestyle to let my body have the tools it needed to fight cancer on an ongoing basis and that included eliminating dairy and cutting way back on red meat.

Your question about 20 or more years into the future is really an imponderable. Nothing I am aware of today gives us any guarantees in that area and the men with prostate cancer who survive these long periods of time are mostly listed in anecdotal asides. Since most men are diagnosed in their mid-sixties to early seventies, having meaningful studies about 20 or more year survival rates just don’t exist.

I think it is very important to read the many studies that are out there. Some studies are cherry picked by various treatment advocates to highlight their procedure over another. I learned to read them with a high degree of skepticism and look to see whether or not the conclusions made sense given the overall data of the cohort in question. For example, if a study touts sexual potency after treatment, it ought to describe the age, body mass, general health, and sexual function BEFORE treatment, in other words what is the delta between a before and after condition that could be reasonably correlated to the treatment. With sexual potency this is a tough one because, men frequently lie about it. In any event, that is an example of sorting out what a study is really telling us but you have to go through them anyway.

A CyberKnife study you may wish to peruse can be found at http://www.tcrt.org///mc_images/category/4309/04-katz_tcrt_9_5.pdf.

It does a pretty good job in summarizing the studies to date. I am part of an ongoing multi-institution trial that, so far at least, closely correlates to the results Dr. Katz achieved at his institution in Florida that had no cases of biochemical recurrence, no significant urinary and rectal complications, and a potency preservation rate of 87%. If you wait for 10 years to see if this really holds true then you would be dealing with 10-year old technology and something else would be competing with it. Sooner or later you have to make a choice.

My CK doctors explained to me that in their experience, men who were free of urinary or potency issues before CK did not have any issues afterward. That is what I expected and that is what I experienced. It is well known that if radiation has an effect on sexual function it shows up two or three years later. That hasn’t been the case in CK studies and in any event, that type of decrease in potency is well treated by drugs such as Viagra.

Klemon said:

My husband is now 64- a VERY young and VERY active 64, he was a-symptomatic and began seeing an increase in PSA in 2006-2008 from 2.5-4.5 over 2 years, biopsy in 2008, negative- PSA went up---biopsy in 2009---negative-high grade PIN--- PSA went up---now at 8.2, biopsy in 2010 was 1 core postive at 3+3=6. We were told of all of the options and that we were a good candidate for watchful waiting, or surgery.. or radiation, or seeds etc etc. Low amount of cancer, and slow, non-agressive. We decided on the DaVinci surgery for cure rather than risk not getting a cure, and dealing with all the side effects of radiation (we did check the seeds too). Our own primary care physician (not urologist) and both of his brothers had all had DaVinci at Mayo-Rochester by Dr Igor Frank the previous year with excellent results. They treat more prostate cancer in that Dept in Rochester than anywhere on the planet.
We went up there for consult and were told that the biopsy results from home showed pre-cancerous cells, not cancer. Thy recc a saturation biopsy to get at the heart of what was going on. results came back several positive cores on left, middle and right, ranging from 3+3=6, 3+4=7 and 4+4=8! We were very upset- at least I was. How did all the prior biopsies, MRI, and ultrasounds miss it? They say its just that illusive- and the biopsies really are just shots in the dark.... The increase in Gleason score bought us bone and CT scans which were negative, and an early surgery date which included an additional aggressive extended pelvic lymph node dissesction. Surgery was sucessful, he was downgraded to 3+4=7 and all lymph nodes clear. Told it was confined. We are 2 months post op.. total urinary control at 8 days when the catheter came out. At the 4 week mark he was given the green light and no restrictions, Since then.... since he is VERY active, if he has a full bladder and lift something heavy or does sits up..he might leak a drop or two, but not always.. he has never needed pads. Sexual function is returning...not as fast as he would like, but we are able to have intercourse and he can achieve orgasm. He has had some urine leakage just prior to orgasm which they don't always tell you about. :>) but its not a big deal.

MCinNC said:

Swing, Kongo, & Ira...
I've still got a lot of research to do, and a lot of decisions to make, but - WOW - your comments are remarkably valuable to someone going through this process, and much appreciated. How you approached the decision making process, what was significant to you, what were the major factors in your case -- really great stuff.

I'm trained as a lawyer and have been working as a judge for many years. I'm accustomed to accumulating facts, analyzing them, factoring in credibility and bias issues, deciding what is important and what isn't, and making decisions. That's basically what I do everyday. But geez, how incredibly complex and difficult this thing is!

I'm gradually picking up the details of all the treatment options. Like Ira mentioned, basically they are all on the table. I'm beginning to understand their comparative effectiveness in cases like mine, and what the likely side effects may be. That's a difficult, but fairly rational process to work through. But then, there is this whole other realm - Kongo mentioned non-technical factors. This semi-mystical, often emotional place where the questions become "What things in life are most important to you?", "How will your decisions affect the ones you love most?", "What sacrifices are you prepared to make?" etc, etc. Big decisions that measure who you are and profoundly affect you and those around you.

I had begun to feel, and become a bit concerned, that after all the rational information gathering and analysis is over, that there is a good chance that my final decisions may be swayed more by a "gut feeling" or "what feels right" or my relationship with a particular doctor that I "liked" or "trusted" the most, as opposed to more objective factors. So, I particularly value hearing how each of you approached your issues.

I'm fairly close to two university cancer centers with lots of resources. So, in addition to my local urologist and the surgeons in his practice, I've met a really great radiation oncologist, a medical oncologist that I would trust completely, and a hot shot surgeon that I really didn't care for at all. I'm scheduled to meet with a robotic specialist in a couple weeks, along with a Dr. at a nearby university CyberKnife center. I may add others, or not, depending on how my thinking evolves. So, I've still got a ways to go before I will be comfortable enough to make any big decisions.

Getting back on the technical side, there are a couple more questions that come to mind:

In some ways, it seems like choosing AS would be one of the most courageous decisions to make for a relatively young person. Ira, I'm wondering if you have a clear set of "triggers" that would prompt you to seek treatment in the future, or whether you will just evaluate things as they come and decide then. I've heard of trials where AS continues with periodic PSAs and biopsies until the Gleason score goes up, or the number of positive cores increase, or the PSA rises at a given rate or to a particular number. Is your particular protocol like that?

Also, I've not yet figured out which treatment I think gives me the "best chance of a cure" as Kongo mentioned. Obviously that would be a good reason to choose a treatment, as would a treatment that lessens the negative side effects that one would be living with. So as to Swing and Kongo, if you felt CK gave you the best chance of a cure, what info or what about CK made you feel that way? And, if you felt CK would have less in the way of long term negative side effects, what were your expectations about side effects when you chose CK? I know the short term has been great, but what do you expect to be dealing with 10 yrs out, or 20 yrs out?

Thanks again.

Mac

Swingshiftworker said:

Long Terms Effects of Radiation
As Kongo points out, consideration of the long term effects of radiation treatment is really an imponderable. Frankly, if I live so long -- to 70 or 80, I think I'll have a lot "other" problem, apart from the long term effects of CK treatment to worry about.

I've discussed at length elsewhere in the thread and in others why I feel CK is currently the best available treatment for early stage PCa. Simply, it's the most precise method of treatment with the fewest side effects and with at least as good a possibility of "curing" the cancer as any other method of treatment.

With CK, I was told to expect the possibility of some urinary (inflamation and/or strictures) and/or rectal (bleeding) problems 12-18 months after treatment. This was much less serious that the risks I learned about concerning BT, which can result in much more serious urinary and rectal damage cause by the improper radiation dose calculation and/or placement.

I was also aware of the possibility of secondary cancers suspected to be caused by radiation treatment. For example, radiation treatment for breast cancer is suspected of later causing esophageal and stomach cancer. Colon cancer and bladder cancer are also suspected to be secondary cancer risks following radiation treatment for PCa. However, the method of radiation treatment used in both cases is usually EBRT which is a much less focused method of radiation delivery (than CK) and, as a result, is much more likely to cause collateral tissue damage possibly leading to secondary cancers.

Since CK can deliver radiation much more precisely than any other method of radiation treatment, I am not very concerned about the possibility of acquiring bladder or colon cancer as a result of the CK treatment. Doesn't mean it can't happen, but I don't think it is very likely and am willing to accept that risk, given the probability that the cancer will be in complete remission w/in 2 years, the minimal side effects of the treatment and the potential for further treatment in order to deal with a relapse of the PCa or the development of any other cancers that may develop in the future.

BTW, the potential for relapse or secondary cancers is no different for radiation than it is for surgery. The situation exists in either case. While secondary cancers may somehow be "caused" by radiation treatment, the failure to excise all of the cancer via surgery can allow PCa to migrate and cause cancers elsewhere in the body. So, to me, that risk is a wash -- ie., the same regardless of what method of treatment you choose.

PS: Your Honor, I graduated from Georgetown Law in 1981 and am still licensed, but no longer practice, in DC and CA.

hopeful and optimistic said:

mac
I believe that it is a very good idea to treat at a major medical center....but be cautioned that some are better than other for various specialties, ie robotic surgery, and you may have to travel to a different location for better treatment.......where are you located? (you can mention since some of us may be in your area) ....

During the time that I have posted at this site I recommended active surveillance to some where it was a "no brainer", but other more active treatment was choosen.....there is a gut reaction that many men have to get the CANCER out of their body, and doctors wanting to make a profit on the prostate guide these men to chose their specialty.

"In some ways, it seems like choosing AS would be one of the most courageous decisions to make for a relatively young person. Ira, I'm wondering if you have a clear set of "triggers" that would prompt you to seek treatment in the future, or whether you will just evaluate things as they come and decide then. I've heard of trials where AS continues with periodic PSAs and biopsies until the Gleason score goes up, or the number of positive cores increase, or the PSA rises at a given rate or to a particular number. Is your particular protocol like that"

I am enrolled in an active surveillance at a major cancer center.......I am being closely monitored.....in my case at 67 if I get a gleason 7, I will seek further treatment......My last three dimeinsional guided biopsy where there were 3 targeted cores, based on an MRI, I had zero cancer.....pls read my profile for more information.


Long term , AS is fairly equal with other treatment decisions

hopeful and optimistic said:

p.s. to my post
I was at the library when I posted to you , my time was cut short, so I am adding to the post now.

Since we have to make a treatment decision based on incomplete information while we are pretty much in a state of stress when we are diagnosed...I believe a partial reason that I post is so I can validate my decision, which I have done to a great degree as I become more knowledgeable or probably comfortable with my decision.

AS Surveillance protocols:

Different docs and men monitor in different ways.

Some , as in the study that I listed in my profile, do a regular PSA , digital and some biopsies.

Some regular pSA's ,non invasive tests, no biopsies.

The protocol that I am participating in consists of a PSA and a battery of blood tests twice a year, an annual MRI using a tesla 3.0 machine (sate of the art) and a three dimensional targeted biopsy. State of art biopsy machine.

Basically an MRI is taken; suspicious lesions are identified, the biopsy which has ultra sound capacity can tatget these lesions, additionally cores are taken thru out the prostate..the three dimensional machine has the ability to go back to the same location in the future which two dimensions do not.

Active treatment decision triggers:

I am closely monitored, by a doc, wo is an expert in this, but basically I believe that the criteria will be more relaxed as I age, I'm thinking that at this time, I do not want to see a seven....I think that the psa is a second to the biopsy.

bdhilton said:

Have your results read by
Have your results read by John Hopkins or Northwestern… both have undisputed world renowned pathology departments I had my second read by Northwestern and ended up have Dr Catalona performing surgery at Northwestern (Chicago) and I live in Atlanta… I was 55 at surgery this year and diagnosed at 54…

Best to you in your journey with PCA...