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post MDA appt. status review

choclabs
Posts: 23
Joined: Feb 2016

Bone scan confirms that the cancer has not affected my skeleton and initial MRI also suggests that the cancer is currently contained within the prostate.

This is what my urologist suggested, remove entire prostate.

This what the radiation oncologist suggested, PBT and IMRT both with and without Loupron. He stated that since MDA has gotten so good at IMRT and the results are VERY comparable to Proton Beam Therapy, that insurance is reluctant to pay for PBT versus IMRT. The biggest difference is the amount of tissue being radiated. PBT spares the most tissue from being radiated vs. IMRT. Long term bowel problems are less frequent with IMRT. It is difficult to produce long term rsults from PBT as it has only been used at MDA since about 2006 for prostate cancer. PBT almost zero incontinence issues and about 50% erection issues once the Loupron wears off.  There maybe some insurance coverage issues with PBT. He also indicated that MDA research has resulted in refining the protocols used for both types of radiation therapy resulting in improved safety margins to the patient, especially more so in the treatment of prostate cancer with PBT.

What my current ratings of these 5 options are.

1) PBT without Loupron 3 sessions/week (M W&F) 15 total sessions

2) PBT with Loupron Loupron 1 shot = 4mo. dose, PBT 15 total sessions initiated after first 2 months of Loupron activity

3) IMRT without Loupron= I need more details discussed w/radiology oncologist

4) IMRT with Loupron = I need more details discussed w/radiology oncologist

5) Surgery, DaVinci robot assisted, to remove entire prostate

Options 3,4 & 5 become much closer together if PBT is not supported by my insurance policy. I am fresh into the PBT research and a little less informed with Loupron at this point. Thanks to those respondents to my initial posting I am now onto both the proton Bob and proton pals websites. Many excellent other suggestions have been posted in support of my situation.

My PRIMARY concern as of now is if I choose radiation or surgery what tools are available to actively monitor ANY recurrence? Is it that for now the PSA level is the most used indicator? are there others? And it was discussed that post radiation if a return of cancer becomes reality that other radiological options exist however surgery usually becomes more radical if that is the best option to treat a recurrence.

Well, I now have an interesting research project to accomplish so that I do not become a victim of paralysis by analysis. My homework continues!

With highest regards to all - Michael

 

Swingshiftworker
Posts: 1013
Joined: Mar 2010

I just took a quick look and MDA (MD Anderson, I assumed) also have CyberKnife (SBRT) available for cancer treatment.  Not sure if they use it for PCa but you should ask.  It is better (see my discussion in one of your othr threads) and cheaper than PBT.  It is also covered by Blue Shield and probably other medical insurance companies.

Not sure if you were saying that your RO was recommending treatment with BOTH PBT and IMRT or not.  If so, not sure why s/he would do so.  One or the other should be sufficient.  IMRT is most widely used and its use has greatly improved over time.  Still not as good as CK for precision and accuracy but, if you can't get insurance coverge for CK (or PBT), it would be a suitable choice.

If you have the choice, do NOT elect surgery.  It is an antiquated method of PCa treatment which can result in extremely dire side effects, including usually 1 year of ED and incontinence at a minimum and total loss of erectile function and urinary control at the worst requiring the need for a penile implant (which will make you hard but not restore feeling in your penis) and an AUS -- artificial urinary sphincter to allow you to control your urination post surgery.  This doesn't also speak to the embarassment of needing to wear an adult diaper and the smells that are associated with it.  This also doesn't include the possibility of infection and negligent injury to associated organs like the bladder and rectum (most commonly) NOR the fact that after your prostate is removed, your penis (flacid and erect) will retract about 1-2" into your body cavity diminishing the apparent size of your penis by the same amount. 

Don't believe me, look it up!  IMO, sugery for PCa absolutely sucks!!!  No if, ands or buts.

As for post-treamtent monitoring, the only method used is regular PSA testing.  Usually every 3 months at the outset.

If there is any concern about recurrance, you can get a multi-parametric MSI (other wise known as an MRI/MRSI or 3 Tesla MRI) which invovles the injection of a spectroscopic sensitive dye into your body and the insertion of a Tesla coil in your rectum which will enable the detection of choline in your body during an MRI scan.  Choline is a marker for cancer.  This procedure is very expensive and is not routinely used for PCa detection.  I had one done when there was a fear of recurrence in my case. 

Finally, B4 you take an ADT drugs -- Lupron or otherwise -- do some research on them.  The side effects of ADT drugs can be horrendous.  Rather than mix the therapies, I would suggest you undergo radiation treatment first and see what your PSA readings look like and, if they do not stabilze, then consider ADT medication. 

As an alternative to ADT medication, you can also consider physical castration.  The side effects of doing this are much less severe than those reported for the use of ADT medication.  Of course, it is not reversable, as ADT medication is but then again, if you want/need to eliminate the production of testosterone in your body, there is no more effective method to achieve this than this. 

Good luck!

 

 

 

choclabs
Posts: 23
Joined: Feb 2016

Radiology Oncologist suggested PBT then if not accepted by insurance or out of pocket costs, he would fall back on IMRT. My strong preference is PBT versus IMRT as far as radiation therapy is concerned.

RE: Surgery is at the very bottom of my list in order of preference.

RE: SBRT/Cyberknife = yes MDA does offer this mode of therapy.

My RO is a Visiting Assistant Professor Oncology sent to MDA in cooperation to work with and learn from MDA on Proton Therapy approach. He is employed by the Mayo Clinic in MN as they started operating a Proton Beam Center in 2015. Once he has finished his 12-18 month term in Houston he is designated to move to Scottsdale, Az. and become the head of a new Mayo Clinic Proton Beam Center being built there. Since he is very recently come to MDA and is focused on PBT, I will ask him about my case being applicable to the use of SBRT.

Just spoke with my RO, he called me, and SBRT is not one of his choices. His STRONG recommendation if PBT falls through is IMRT. His prior 6 years experience with IMRT as applied at The Mayo Clinic has been that IMRT when provided by state of the art organizations, is a VERY good alternative to PBT, insurance companies rate it as the "gold standard" in prostate radiation therapy versus PBT. And since MDA is rated #1 and Mayo #2, that their organizations have pushed the envelope for IMRT research and development and if I am comparing IMRT performed even a few years ago and from any other institute, it is an apples and oranges comparison. I believe that insurance companies are pushing back on PBT because of cost to them and it has not been used for long enough (except Loma Linda Inst.) to provide a strong historical data set of advantages versus IMRT.

More research on Loupron therapy needed. He HIGHLY recommends my use of Loupron to begin with a one time only shot as soon as I decide to go the PBT route. The one time shot only dose will last 4 months and then takes about 2 more to start fully recovering from. Then 2 months after Loupron was taken the PBT would start, MW&F for 5 weeks, 15 radiation sessions.

 For IMRT, it’s in the range of 70.2 Gy in 26 times/fractions, and it’s comparable to PBT except 5 days per week and the Loupron is also prescribed.

All for now - and thanks for taking your time to post replies to my threads!

Respectfully - Michael 

 

Swingshiftworker
Posts: 1013
Joined: Mar 2010

I respectfully disagree w/your doctor when he says PBT is the "gold standard" for PCa treatment.  They use to say that about surgery -- after it was  proven to be bunk -- well before better methods of radiation like PBT and then CK were developed.

One thing I learned quickly about PCa is that you MUST self-educate about the type of treatment YOU want to subject yourself to.  Doctors recommend what they do and what they are familiar with BUT that is not necessarily the best choice for you.

Your doctor may HIGHLY recommend PBT and Lupron but IMHO you need to KNOW for yourself whether those choices are the best for you rather than simply relying on his opinion.  If you do your research and come to the same decision fine BUT if you blindly follow the recommendation of your doctor, you may be in for a rude awakening.

Of course, that's your choice.  I'm only expressing my opinion based on my 6years of experience learning about PCa, the available methods of treatment, my personal experience fighting and being cured of the cancer and learning about the battles -- both won and lost -- of others here on this board.

I wish you luck whatever course of treatment you choose.

 

 

 

VascodaGama's picture
VascodaGama
Posts: 3007
Joined: Nov 2010

Michael 

It seams that you have "moved up" to the Radical Treatment level. I wonder if you have considered an Active Surveillance way as means of control of your case. What did your doctor (or consulted second opinion doctors) say in regards to such a possibility?

In any case, you doing well in investigating about therapies while getting tested. You should consider risks and the side effects too. Radicals cause permanent lost of certain quality living aspects that you need to know in advance. From the results of the exams you have shared here so far, I think you have time to look for the best before deciding. In one year period from now your PSA may increase but it may also decrease, which would provide you with other thoughts in confronting the situation. By that time, the treatment choice would not alter and so it wouldn't its successful rates. 

Best wishes in your journey.

VG

choclabs
Posts: 23
Joined: Feb 2016

Very astute observation!

My urologist suggests surgery because that is what he knows. My RO suggests PBT because that is what he knows. So as far as MDA Houston is concerned their best option for me is PBT. I do understand their institutional biases, and the fact that they have invested upwards of $200M in proton beam therapy R&D.

It also must be realized that MDA is geographically advantageous for me, only 135 miles away. And time frame is also of concern because as of Jan 18th I became unemployed and as of Feb 1st I am diagnosed with PCa. My employer paid insurance runs for another 50 or so days then it will be COBRA for my insurance coverage. I MUST GET BACK TO WORK SOON AS POSSIBLE. It is good to have you guys as advocates for my research.

I must admit that CyberKnife + Calypso 4D has my interest. If one is to seriously consider radiation then the least I could do is to look at a handfull of options. It is quite possible that Cyberknife would be easier to get insurance apporval vs. PBT.

What CyberKnife providers are considered best in class as far as experience is concerned? any recommendations?

So now you guys know a bit better why I am looking to get onto the otherside of my treatment. 

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IMRT Treatment

Radiation is X-Rays in the total range of around 70.2Gy over 26 fractions applied 5 days per week for 5 weeks plus 1 day. MDA suggests Lupron treatment also.

 

Hypofractionated Proton Beam Therapy

Radiation is protons in the total range of 55.5 Gy delivered in 15 fractions of 3.7 Gy to the prostate, MW&F for 5 weeks. The doctor will place 2-3 small tissue markers (about the size of grain of rice) into your prostate to help guide the proton therapy. MDA suggests Lupron treatment also.

 

SBRT “CyberKnife”

For Gleasons 6 and 3+4 patients, 35 Gy over 5 days. This dose brings the PSA down to 0.1 and yields a 100% local control rate. Also with tissue markers inserted for guides.



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hopeful and opt...
Posts: 2224
Joined: Apr 2009

I wonder, have you made a decision as to getting a second opinion on the pathology found in your biopsy?

choclabs
Posts: 23
Joined: Feb 2016

H&O,

The primary benefit  that I can see for a 2nd opinion would be to determine what type of cancer was found, slow growth or a more agressive form. I am not sure that visual inspection of tissue slides or their images can provide that answer in a definitive manner. I do value a pathologist with more experience but an adjustment of the GS up one point vs. down one point will not alter my treatment plans.

I am currently investigating if the Oncotype DX Prostate Cancer Assay by Genomic Health or the Prolaris Test by Myriad Genetics are providing credible results relative to differentiating between slow or fast growth PCa and what insurance coverage or out of pocket costs are.

Am I missing something on benefit of 2nd pathology opinion?

 

hopeful and opt...
Posts: 2224
Joined: Apr 2009

You have been diagnosed with a 3+4=7 Gleason score. Having a second pathology opinion may indicate that the Gleason(aggressiveness of the cancer) is downgraded to to a 3+3=6, so if that happens you and your medical team may  decided to select Active Surveillance as your treatment choice

To add:

The second pathology opinion also review the volume of the cancer within the core;; the less volume, increases the chance of successful Active Surveillance...

................

I have had the Genomic test that you reference; at the time that this was done, there was no charge since it was not FDA approved at the time of my test. This test will not measure the volume of your cancer, and will probably not add very much, if anything to knowing more about your cancer above and beyond the pathology , PSA's and other diagnostic test results that you have taken in order for you to make a decision.

hopeful and opt...
Posts: 2224
Joined: Apr 2009

this post made so  activity will be seen for this thread, , and you will be able to see my comment

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3292
Joined: May 2012

Michael,

You are researching your options in great detail, and will undoubtedly make the correct decision for you. 

When I was deciding on a treatment choice, I spoke to four doctors about what to do: the urologist who did the biopsy (she does not do Prostate removal), a radiation oncologist whom I know, my medical oncologist from my earlier lymphoma (an Ivy Trained guy, with five Board Certifications), and a urological surgeon, who at that time had done over 900 DaVinci prostate removals, as well as other UTI operations (bladder, etc).  He is a specialist in post-radiation surgical removal of the prostate also.

I found all of them to be unbiased in what they recommended. I have never encountered the bias commonly reported here of a doctor being biased toward their own specialization. The radiation oncologist quite directly argued for radiation, but then listed the advantages of surgery, and the surgeon did likewise, listing the advantages of radiation.  The Radiation oncologist suggested IGRT, and offered to let me be one of his first patients with the Calispo guidance system, newly added to their Varian machine.  The medical oncologist agreed with what I had always read, that surgical removal and radiation are essentially equal in curative outcomes for PCa that has not spread out of the gland.  Metastatic disease becomes much more complex, and the advantage is decisively toward radiation as a first-line approach in most cases.

M.D. Anderson, along with Sloan-Kittering in New York, are regarded by virtually everone as the best two cancer centers in North America.  It is difficult to believe that they would be bogged down in "bias" because of what a machine costs.  These doctors are going to have waiting lists regardless of what any individual patient chooses. They are in no risk of ceasing to be mega-rich if you get treatment from the guy down the hall. My own surgeon, for instance, charged about $5,000 as his fee just for the time in the operating room.  He has probably done at least 1,500 surgeries, for a cool $7,500,000.  He is about 45, and has decades of practice remaining.  The $7.5 million does NOT include the bulk of his urological practice either.  No doubt, before expenses, he has earned over $10 million, probably a lot more, maybe twice that amount.  He would not have cried if I had gotten radiation.

In most cases of fairly routine cancers, I do not think that the prestigious, national or regional centers provide any better care than what a local cancer center will do, for a lot less money.  The friends I have known who travelled to either did so because they were dying. In every case that was shared with me, the doctors there agreed that they would have chosen the treatments that their local doctors had employed on them. All were at the point of third-line therapy, and sadly, all died:  One case of leukemia, one breast cancer, and two prostate, one of which was 47 years old.

Most oncologists of any type use a "cook book" approach to treatment: They plug in all of the clinical variables into a treatment program, and the conventional choices are printed out, unless the case is so routine that they know all of the options in their heads.  There are rare and complex cases that require a subspecialist, but this is uncommon.   My opinion, based on what I have watched happen to others and heard from many doctors directly, is that travelling the world and spending more does not buy more cure, or a better outcome.  According to J.D. Power and Associates, over a period of many years, the poorest reliability among cars was found in Mercedes, Jaguar, and Range Rover -- among the most expensive vehicles on earth.  A Corolla willl ordinarily last longer, with a fraction of the maintenance costs.

Prostate cancer is blessed with a multitude of choices, more than perhaps any other common form of cancer, and most with similiar, if not virtually identical, curative outcomes.   Undoubtedly  you will  choose one that is excellent for you.  NONE have no potentially negative outcomes (well, except perhaps A.S, when it is a suitable choice).  

Eventually, a guy just has to choose. I know the agony of pondering all of this myself.  I chose DaVinci removal. Thirteen months later, I have better urinary control than I had prior to surgery, and am at least 85% as potent as before.  I have wondered if IGRT would have been easier, with less recovery. I will never know. It can, rarely, cause troubles also: Urinary stricture, burning of the bladder and/or lower colon, etc, but these are profoundly uncommon.  I will never know, but am happy with what I did, and what I got.

max

choclabs
Posts: 23
Joined: Feb 2016

I do support your position. I must also admit that if I came across as overly believing the monetary cost of proton therapy equipment created a treatment bias, then I was wrong.

What I should have stated that each Dr. positioned their specialty as what they thought was the best they could offer. And each Dr. also stated that the "other" decision was also very appropriate for my treatment. However the radiology oncologist was much more passionate about the ability to offer proton therapy as an option.

Since I am heavily considering radiation therapy then surrounding tissue burn is also one of my areas concern.

Thank you for taking your time to reply.

 

 

CowboyBob
Posts: 31
Joined: Oct 2013

It is the nature of human beings to be biased by previous experiences and beliefs. This is true for physicians as well as non-physicians. A visiting assistant professor in Houston to learn proton beam undoubtedly is biased towards proton beam. He has chosen to pursue proton beam as a career direction! It doesn't mean the bias is economic; but, it likely is present.

I have not been diagnosed with PCa as of yet; but, like you, I have reviewed the literature and can find little data to support the superiority of Proton beam over Cyberknife. The shorter duration of treatment would likely have me choosing Cyberknife.

I would also directly ask the RO for the data supporting the use of pre-treatment lupron for your specific situation. This seems agressive for your clinical data and brings the potential for signifiant unpleasant side effects.

 

Good luck! 

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