New diagnosis - would like some input

jeneric82 said:

thanks for the info

No problem sharing at all. I'm sorry I don't have exact results and dates at the moment. My PSA has been being evaluated for about 5 years now. It was trending slowly upwards in the 4 and 5 range. Then up to 6s and 7s. Then a year ago it went to 8, at which point we did a biopsy, which came back negative in all areas. A few months later, the PSA was still trending positive so we did an MRI. The MRI showed one tiny area that did not seem suspicious and they said could have been scar tissue related to the biopsy. Then in October of this past year my PSA went to the current 10.6 from the previous 8.7.  At that point we did a repeat MRI, which now showed 2 small lesions where there was one before. That led to this current biopsy which was done in December.

All DRE's have been normal and unimpressive, except for being enlarged. Both my urologist and primary suspected BPH but wanted to keep a close eye on it. I was also asymptomatic throughout all of the PSA increases.

The 3 core samples that came pack positive were 2%, 2%, and 5%.

The oncologist kept telling me that I was a good candidate for a "Watch and Evaluate" treatment, but I honestly don't want to mess around at all with PC. I'm fairly young and healthy and feel I could tolerate treament much better at this point than later.  As I said, I think if it wasn't for needing the Hormone Therapy to reduce the size before getting the brachytherapy, I would be leaning towards that treatment much more.

I asked him about the SBRT and he indicated that I could pursue that route through another provider, but he personally didn't feel there was enough long term stats and testing done to evaluate it fairly for results against the others. He said that many of those providers doing SBRT in this area are doing so as clinical trials. As a result, many insurance companies view it as "investigational" and may not cover it. I did not verify that with my provider though.

Thanks for the support and information.  

I doubt that seeding nor Active Survellance are sound choices for you, given what you know thus far (prior to imaging).

You have reasonable evidence to suspect capsular escape, which would render IGRT delivery of radiation the most potentially curative response.  A PSA over 10 is objectively high, and your vector (doubling-rate) is significant.

SBRT is not at all "new," I have never read of a patient here having been told what your doctor told you regarding that form of treatment (SBRT was in use world-wide by around 1997).  It is among the best choices if the disease is still in the gland, but using it for wider delivery (tissues surrounding the gland) is still pretty new and does not have much track record in those cases; when there is escape known, IGRT is almost always the treatment of choice  -- better than SBRT or surgery.  Clinical trials are now underway for long-term effectiveness of SBRT against disease in the prostate bed area.

The ususal argument for SBRT over conformal radiation (IMRT, IGRT) is that it is "more convenient."  Five days of treatment verses 40.  I do not see myself how, over a lifetime, this is even meaningful or relevant. Many cancer treatments require being cut to pieces or chemotherapy over years....some chemo patients go into what is called ":maintenance," and teke chemo for life, often decades.  HT (hormonal treatments) agains PCa often last a lifetime.  But guys think reducing radiation time by a few weeks is meaningful ?  I do not get it.  Another argument is that SBRT is 'more precise' than IMRT.  But that is a straw man fallacy, because what they are really comparing is SBRT to older IMRT machines, not the newest IGRT machines, which in effect have achieved parity with SBRT; the parameters now virtually match.  I know this may sound like hair-splitting. The best a man can do is go to a premier treatment facility and get several opinions from the best doctors.

The director of Radiation Oncology at my teaching hospital told me that he preferred IGRT over SBRT all the time, for technical reasons, but not because it is 'Investigational,' because it isn't.  Our hospital does, and did then, have the newest SBRT machine available, so it was not an issue of him not having bought the device.  But his concerns were not over its 'newness.'  Sadly, insurance carriers are sometimes who defines 'investigational.'

max

jeneric82 said:

2nd opinion

Sounds like I may have to get a second opinion anyway. Regarding the SBRT, in the fog of the nervousness I had in our appointment, I may have misinterpreted what he said slightly. I asked my wife, who was with me, and she did say that he said it was considered non-standard and insurance may not pay for it, so I think you are completely correct when you said that sadly insurance carriers incorrectly label things investigational. I have run into that before and had a knock down-drag out fight with Blue Cross over it. I won, by the way. lol   He did say that it is in clinical trials and that I would probably not qualify due to my younger age.  

Both my uro and now oncologist are both reasonably assured that everything is still contained based on imaging and the low risk scores, with the exception of the PSA, which is admittedly low end of intermediate risk. 

I was considering a second opinion anyway, but after hearing from you as well as Hopeful and Optimistic I am even more resolved to do so.

Something as serious as any cancer demands a second opinion, preferably at a different hospital from where you were initially seen.  Coworkers have some tendency to just sign off on what the other guy said, out of deference.  I am not saying they lack integrity, but it is a reasonable concern.

I suspect that your doctor meant that SBRT is investigational for extracapsular escape, not for a simple case of PCa still contained in the gland. That is the only way to make his comment make sense, but speculation on my part.   See one more R.O., and a surgeon for thoroughness, so that you will have had all options presented to you.    My choice was surgery because of my particulars, but I do not ever 'recommend' anything to anyone.

In your first post you asked about Hormonal Therapy. That is reserved for metastatic disease, and is not a first-line response to minor cases.  Some cancer treatements are for "curative-effect," meaning they will eradicate all of the disease, hopefully for life.  Others are for "pallative effect," meaning that they control the disease and its symptoms, often for long periods.  Against PCa, surgery and radiation are the only treatments that are potentially curative.  Hormonal and chemo are never curative of PCa, but can extend life, sometimes even for decades.  (To avoid confusion, I will add that chemo IS curative of some other types of cancer, like Lymphoma and leukemia, but not against PCa.)

You are off to a good start toward making a smart and well-informed set of choices here,

max

Given the low level of cancer in your biopsy cores and the low Gleason score, the best advice I can give is DON'T RUSH INTO ANYTHING.  Your condition isn't going to kill you in the next three months.  Take your time to research everything and persue other opinions.  You may want to have Oncotype DX genomic testing done on the positive sample to get an idea of how aggressive the cancer is.  Three positive cores is borderline for Active Surveillance, but one big advantage of AS is that new technologies are being developed daily to treat PCa.  With a really encouraging GPS on the Oncotype DX testing, it might be worth doing AS for a couple of years. 

Hi,

Yeah, get all the info you can on the various treaments plus early & late side effects.  Do your homework which will lead you down the correct path.  If you want to do some form of radiation treatment several people on this board have done Cyberknife with good results.  Most radiation treatments are a slow cancer death kind of thing which may take a few years to determine if you have a cure based on psa readings.  Proton radiation offers the benefit that the beam is focused on the tumor and does not go completly through your body(tissue damage on the way in but none past the tumor).  Might be something to look into.

Dave 3+4

You said you are not a candidate for surgery due to your age. I thought you said you are 51. Typically the cutoff for surgery is 70, and sometimes even higher for healthy men. Given your relatively low PSA (~10) small number of positive cores (3?) and Gleason score 6, I find it very curious that you are still only considering radiation. I've had surgery, radiation and hormone therapy and the only thing I would have done differently would be to have changed urologists two years earlier, when my numbers might have still been as low as yours... and then the HT and radiation would have been totally unnecessary. Don't dismiss surgery until you have at least investigated it as a possibility. Given your favorable stats you'd likely be home in a day and fully continent in a month. Or is there something beyond your youth and excellent health that I may have overlooked?

Hi,

Do your research and find the treatment that is best for you.  Both surgery & radiation have side effects don't let anyone kid you. I had surgery a little over 3 years ago, ED is all gone and still have just a little stress incontinence for which I wear a light pad, probably will for the rest of my life.  Radiation can have late developing side effects also like scar tissue and sometime a higher than normal chance of getting a secondary cancer where the radiation hit.  Know what you are getting into, it's your choice.  You have the time to think it over, people on this board will help you out.

Like Red Green always said,  Remember, I'm pulling for you. We're all in this together. 

Dave 3+4