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Newly Diagnosed as "High Risk" and Confused Beyond Words

Regulator
Posts: 42
Joined: May 2018

Greetings to All,

I am a 66-year old, newly diagnosed "high-risk" prostate cancer patient, that has only just begun the overwhelming research and learning processes associated with this wildly complex disease, and its many forms of potential treatment, based upon ones own unique biopsy/PSA particulars. Hence, I'm posting my story here in hopes of getting some meaningful feedback from others who may have faced (or are facing) similarly difficult decisions with regard to the plethora of treatment options available.

So, as briefly as I can, here are the facts that are most pertinent to my story:

In late 2015, my (then) primary care physician called for a variety of blood tests including a PSA test, that came back at 2.9 ng/mL, but oddly, nothing much was done about it (i.e., no alarms, no discussion, no referrals). Six-months later (March 2016), the PSA was up to 9.1 ng/mL, and I was subsequently referred to an independent urologist. However, a rather laborious and lengthy trans-oceanic family move put everything on the back burner for an extended period of time, causing a delay that has now come back to haunt me, because by late 2017, the PSA value had risen to an alarming 40 ng/mL.

Finally, in February 2018, I met with a second urologist who recommended and performed the long overdue biopsy. The biopsy procedure itself was comprised of six sets (1-6) of two cores each (12 total cores), and the results were reported by the pathologist as follows:

1: Right Base, 2 of 2 Positive, 4+4=8, Grade 4, 60% with carcinoma.

2: Right Mid, 1 of 2 Positive, 4+3=7, Grade 3, 20% with carcinoma. Note: Perineural Involvement Identified.

3: Right Apex, 1 of 2 Positive, 3+4=7, Grade 2, 8% with carcinoma.

4: Left Base, 1 of 2 Positive, 4+5=9, Grade 5, 10% with carcinoma.

5: Left Mid, Benign.

6: Left Apex, ASAP (Atypical Small Acinar Proliferation = suspected cancer).

Within 4-weeks of the positive biopsy report, CT and bone scans (but no 3T-MRI) were conducted. Both scans were subsequently reported as 'negative' for metastatic disease, and the prostate gland itself was classified as . . . "normal 4-cm in size without nodularity (no identifiable mass), but with asymmetric enlargement of the right seminal vesicle. No osteoblastic bone lesions and no lymphadenopathy or distant organ metastasis identified". However, my current urologist essentially dismissed the significance of both scans, saying that these two technologies each produce far too many 'false negatives' to be reliable, and that given the high PSA score of 40 ng/mL, the probability of at least "micro" metastasis to the surrounding bones and/or lymph nodes would be near 100%.

Three more months have now elapsed since the biopsy, with a stream of referrals and associated delays, and without treatment of any kind, but as expected, the PSA has continued climbing to nearly 70 ng/mL. Next week, I have two out-of-state appointments with well-qualified surgical and radiation oncologists, in hopes of gaining their respective opinions on the best approach for me moving forward (i.e., surgery, EBRT, ADT, etc.), and just this past week, my very first visit with an oncologist of any sort (a local medical oncologist), led to the stern recommendation that I at least begin Lupron treatments, effective immediately.

My own inclination regarding future treatment is rooted in what would seem to be sheer common sense, and that is, to have immediate surgery (radical prostatectomy) to remove the primary source of the cancer, followed by secondary treatment with radiation, chemo, ADT and other therapies, as necessary. However, several local urologists/oncologists have suggested that I will be unlikely to find a surgeon willing to perform the surgery given my age, the high PSA result and the rather brisk so-called "PSA doubling time".

So, there you have it! Needless to say, its an incredibly serious and unnerving set of circumstances, but its also incredibly 'confusing' in its initial complexities. I and my family (including several adult children), are all frightened beyond words, and personally speaking, I'm struggling mightily with the decision(s) on how best to move forward. Accordingly, I would consider any and all feedback from experienced others here on the ACS Prostate Cancer Forum as "priceless".

Thanks to all for your time and consideration, and my very best wishes for success to all who are afflicted with this miserable little malady.

hopeful and opt...
Posts: 2218
Joined: Apr 2009

The side effects of treatments by various active treatments are cumulative, that is a patient can suffer side effects of each treatment.

Surgery is a localized treatment, and does not treat the cancer that has escaped the prostate, the cancer, that is "outside the barn". Surgery will not do the job. You will still need additional treatment, either a combo of radiation/ hormone or hormone only.

A Medical Oncologist needs to be the doctor in charge of your medical team. You want the very, very best that you can find, and afford. This doctor is most qualified to administer hormone therapy. There are medical oncologists that specialize only in prostate cancer. Where are you located?, hopefully we may be able to give input in choosing one.

Diagnostic tests: A T3 MRI may show extracapsular extension, that is, if the cancer has escaped...which is very likely with significant volume of advanced cancer.

You will also want a PETscan. There are various PETscans that are available...Axumin is one type that is medicare approved...there are also other PET Scans that are consider investigational that provide better info about where the cancer may be...PSMA is probably one of the best, that is available in clinical trial or pay for......(the PET scan is probably the most important diagnostic test for you.

You want to research, attend local support group(s). Google usTOO an, organization that sponsors local support groups, read books, keep on asking quesitons here...we are here for you.

Regulator
Posts: 42
Joined: May 2018

Thank you for your response, your recommendations, and your sentiments. They are all greatly and sincerely appreciated. Given your demonstrated knowledge on the subject and the extent of your nearly ten-year participation on this particular forum, I place considerable value on your opinions and suggestions.

I am aware of the distinctions between localized (surgical) and global (radiation and/or hormone) treatments, and I certainly cannot disagree with the statement that "surgery will not do the job" for patients with clear metastatic disease. However, it is that last qualifier (i.e., the "confirmed" presence or absence of metastasis), that gives me pause.

To make life-altering decisions such as whether or not to have radical prostatectomy based upon actuarials or 'conjecture', seems a bit irrational to me. The presumption that metastasis has in-fact occurred in any patient with negative CT and bone scans, based solely upon the trifecta of their Gleason score, current PSA level and PSA Doubling Time, without 3T-MRI or PetScan results, is thoroughly unacceptable to me, and I say this for several key reasons. First, at least as I understand it, a relatively high PSA result and an accompanying high PSA Doubling Time can occasionally be caused by physiological phenomenon other than cancer, and there are clearly reported instances of men around the world, with very high Gleason scores, who were shown (via surgery) to have not yet experienced metastasis. Secondly, and equally importantly, several studies appear to show that surgery provides more survival benefits, less pain, fewer adverse side effects and shorter recovery times for high-risk prostate cancer patients of 60-years or less, than does radiation. And thirdly (or finally), patients who suffer recurrence after undergoing surgery (radical prostatectomy) can subsequently be treated with radiation and/or hormone therapies, but the reverse is not true (i.e., once a patient is subjected to EBRT or other radiation ttreatments, he is essentially ineligible for future surgery), and several specialists have confirmed this for me. Given my age and fitness, and my own diagnostic particulars, these three collective sets of facts, in the absence of further supportive information (e.g., 3T-MRI or PetScan), make the decision to have radiation treatment over surgery, a nonsensical one.

As one might expect, over the past 12-weeks or so (since my biopsy), I have repeatedly requested an order for a 3T-MRI and/or PetScan from my various physicians, in hopes of getting some confirmatory or semi-confirmatory word on the presence or absence of metastasis, but I have not been able to beg, borrow or steal such a test. In fairness to those few physicians with whom the requests were made, they were general practitioners or urologists, not oncologists, and fortunately, in my first visit with an actual oncologist (my newly assigned medical oncologist, just this past week), he graciously agreed to order a 3T-MRI. However, despite the apparent advantages of obtaining such images and reports, he did not appear to be particularly supportive of it or its seemingly significant contribution to the puzzle, which likely means that he too, is already convinced of the odds.

Anyway, in another week or two, I will have acquired the added professional opinions and recommendations of other, equally qualified surgical and radiation oncologists, but regardless of what their respective views may prove to be, I am likely to remain reticent about radiation and/or hormone treatments over surgery, until the proper imaging tests have been conducted, and the likelihood of metastasis is either confirmed or dispelled.

Thank you again for your contribution to this thread and I hope that what I've said here makes sense.

VascodaGama's picture
VascodaGama
Posts: 2958
Joined: Nov 2010

Regulator,

Welcome to the board.

There are two elements in the info you share above that turns your case risky and aggressive. The PSA-DT and the Gleason score 8 (that could mean a worse situation than the Gs 9). Both scans you comment above are in fact linked to many false negatives, but negative results in a normal size gland with high PSA is rare. This fact reinforces your doctor's comment regarding the micrometastases ("no identifiable mass"), which is also typical in voluminous diagnosis (too many positive cores). In such cases MRI is also limited in identifying abnormalities and may provide false negatives.

You surely need to do something but do it coordinately. My opinion is that you should try getting a PET scan with a tracer proper for prostatic cells like the 68Ga-PSMA or F18-Choline, before starting any treatment. Such exam is more specific to PCa, independently of the tumour size. The Axumin indicated by Hopeful above is better than MRI but it is not as specific for prostate cancer (PCa) as the ones above, which could lead to erroneous judgment by the radio doctor. The PET scan should be done before any hormonal treatment because these drugs interfere with the ability of cell's receptors in absorbing the tracer.

I believe your case being aggressive for the doubling time but not advanced. It is typical in aggressive cases to recommend a therapy composed by a radical (surgery or radiation) plus hormonal. When the case is advanced (metastases at various places) then doctors recommend chemotherapy (plus hormonal) reserving radiation to treat particular spots.

The PET scan will provide you with reliable information from where to decide on a treatment. Due to the micrometastases, if the cancer is seen as localized or contained (?) then a wider field of radiation (the gland, the bed and the lymph nodes) plus hormonal may be the best option. Surely you can opt for debulking the big tumor (the gland) and there will be plenty of surgeons interested in dissecting your gland even at your young age and with a cancer producing high PSA and short doubling time. However, the importance is to get treated and continue living with quality. Each treatment will live you with a series of side effects apart from the risks involved. Radiation can achieve the same goal as surgery and still cover the surrounding areas in one set, however, you should consult a radiologist to discuss the risks in radiating the base of the prostate (just under the bladder which area includes the urinary sphincter), because this is the area where the high grade Gleason (4 and 5) were found.

Investigate and get the best data and then decide but do not rush. We all go through the same fear.

Best wishes for luck in this journey.

VGama

Regulator
Posts: 42
Joined: May 2018

VGama,

My sincere thanks to you sir, for taking the time to review my initial post, and for providing me with your opinions and recommendations.

As you can see from my recent response to Hopeful and Opt (above), I have felt the need for additional diagnostic imaging of some sort for many months now, and I intend to secure such testing soon, no matter where I must go to obtain it. I reside in a relatively rural area in the western U.S., where professional expertise and advanced imaging technologies are not widely available, but I agree wholeheartedly with you that a proper PetScan is imperative for me at this particular point in time.

That said however, I'd respectfully like to ask you to elaborate on your opinion with regard to the pros and cons of surgery vs. radiation. Do you agree with the statement that I made in responding to Hopeful and Opt (above), in which I said the following:

". . . as I understand it, a relatively high PSA result and an accompanying high PSA Doubling Time can occasionally be caused by physiological phenomenon other than cancer, and there are clearly reported instances of men around the world, with very high Gleason scores, who were shown (via surgery) to have not yet experienced metastasis. Secondly, and equally importantly, several studies appear to show that surgery provides more survival benefits, less pain, fewer adverse side effects and shorter recovery times for high-risk prostate cancer patients of 60-years or less, than does radiation.

Do you agree with this statement?

Thank you again.   

Regulator
Posts: 42
Joined: May 2018

In the interests of overall thoroughness and for the purposes of further discussion, I've added several more relevant items from the CT scan report, regarding size and condition of the prostate gland and surrounding tissues:

1) CT Scan: The actual or estimated weight of the prostate gland is unknown, but its relative size and condition were described in the CT Scan report as follows . . . "Normal 4-cm size without nodularity. Normal-sized prostate with asymmetric enlargement of the right seminal vesicle. No osteoblastic bone lesions and no lymphadenopathy or distant organ metastasis identified."

2) CT Scan: Lymph Nodes - "No pelvic or inguinal adenopathy."

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

Wow, you've covered a lot of bases here, but must say that you appear to have your head screwed on straight. You have done extensive research and have not been swayed by lets say popular opinion. Online forums have an inordinate number of surgery opponents who are of course entitled to their opinion, but that opinion seems to always be against surgery. Furthermore, your assumption that surgery followed by radiation is a traditionally accepted course of primary and secondary treatment, whereas some of the treatments secondary to radiation as stated by some are not of proven safety or efficacy. (Preparing for slings and arrows!)

With that out of the way, I just want to say how much your situation mirrors my own, but unfortunately is so much worse. I had a rapidly rising PSA in my ealry sixties which was essentially dismissed by my urologist. The first biopsy came back negative. He gave me no clue as to the significance of the PSA. Additionally, my wife and I were in the midst of retiring and moving 1,000 miles to a "downsize" condo in Florida... i.e., major relocation.

Probably the worst thing to come out of all this is that precious time was lost. There were no scans or additional blood tests. It wasn't until I had my first physical with my new doctor in Florida that he asked about my PSA and what I had done about it. Returning home to pack up another truckload of household goods, I confronted my urologist with my new GP's questions and he basically walked out of the room... which turned out to be the best thing that happened to me.

I found a new urologist who did a MRI which identified a suspicious area at the BASE of my prostate (as Vasco mentions) and a fusion biopsy which found 100% G8(4+4) prostate cancer. In the MRI it appeared to be contained within the prostate (organ confined). As time was of the essence, I did not have time to commit to two+ months of radiation and was pronounced ineligile for some of the more popular forms of radiation.

Throughout most of this ordeal I got the feeling that the medical community was working against me rather than working with me or for me. Tests seemed designed only to prove to me that my urinary symptoms were insignificant and the word cancer was never even mentioned until it was alomst too late. I do have a profile and a blog here if you click on my name. It is a rainy Memorial Day here in Florida and I don't have much to do today other than respond to forum posts :-)

Regarding micrometastasis, there aren't many tests that can identify those, and generally if is has already occured, radiation would not treat them any better than would surgery. In my opinon, if you are comfortable with surgery, then you have to the right to proceed with it. The advantage is that once your prostate is removed and the surrounding tissues analyzed by a pathologist, you will have a much better idea of what is going on. Waiitng for more tests or a protracted radiation schedule may only result in additional wasted time. You are still a young man and should be well able to survive surgery and the asscoiated recovery. THEN if you still have a high PSA, you can deal with that, in much the same way that I did... because I had to. And good luck to you going forward.

hopeful and opt...
Posts: 2218
Joined: Apr 2009

I wonder what type coverage you have. ...Sound like you have an HMO type, and are having problems obtaining advanced diagnostic tests, since the organization is trying to save money.

The CT exam that you had , to be honest does not show much definition, and quite often shows false negatives.

I am in Southern California, and several men that I know have gone to Phoenix Arizona, Dr. Almeida to obtain a PET SCAN . They do both a PSMA 68 (the better one in my opinion) and an Acetate based( there is a charge of about 3,000 dolllars). You can research, then call to discuss. 

 

ASAdvocate
Posts: 112
Joined: Apr 2017

Regulator, What people are trying to tell you is that there is no sense in suffering the side effects of both surgery and radiation (and ADT) if surgery will not cure the cancer.

Now, it appears that you have bought the surgeons' talking point that "there can be no surgery after a failed radiation". That is mostly true, but misleading, as there are several non-surgical salvage options in the event of failed primary radiation.

Also, not sure about your statement that surgery provides better outcomes and fewer side effects than radiation. Some links for you to read:

https://pcnrv.blogspot.ca/2017/02/for-very-high-risk-patients-ebrt-bt-is.html

http://www.cancernetwork.com/oncology-journal/radical-prostatectomy-appropriate-very-high-risk-prostate-cancer-patients-no

https://pcnrv.blogspot.ca/search/label/Salvage%20after%20RT

 

 

 

 

VascodaGama's picture
VascodaGama
Posts: 2958
Joined: Nov 2010

Regulator,

All you wrote in the above inquire directed to me is true to certain extent, but treatments are not decided on simple parameters and no one of them is above the other. Each one has its own characteristics and some may become a better choice depending on what was found, the circumstances of the patient and, in particular, the location where cancer resides.
It is complex and with so many ways to treat one is fortunate because it got the possibility in choosing what seems to fit his case and purposes.

My advice to you and anyone else is to get the best info on his status, consider the type of life after treatment, discuss about alternatives with experts and finalize with an option that is acceptable by himself and his family. The fact is that after so many consultations, researches and receiving opinions from others, surely such a person has educated himself to an extent that is enough to make a decision (which for sure it is his best). One should then follow what he trusts and gives him comfort.

Everything starts by identifying the aggressivity of the cancer and guessing its location. If through the initial data it is found that the risk for existing metastases is high, then one should get the best of the best picture to certify if that is localized or further at far places. I have noticed on your last post that the CT indicated "... asymmetric enlargement of the right seminal vesicle ...", which raises the probability of having cancer at the vesicles that in many cases is a worse signal for risks of extra prostatic extensions. With this data in hand then one should identify a treatment that apart from providing cure it will provide a reasonable quality of life after intervention. No one will enjoy living handicapped after treatment (in particular those with long periods of life expectancy). This is where the side effects from treatments are accounted for. Balancing the act is important.

Treatments for PCa are grouped into two types: The directional ones and the systemic ones. The directional ones are those that become depend on the location to be treated. The systemic ones cover the whole body so that are independent of cancer location. The choice should prioritize the one that working alone can accomplish its purposes. We should never choose therapies that are prone to fail or even think on what to do if it fails. We should trust that the initial diagnosis is true and decide on the one that fits the judgment, even if that obliges to a combination treatment (neoadjuvant plus adjuvant).

You do understand that if through the above efforts one gets to the conclusion that cancer is contained, then removing the whole gland or bombarding it with rays or other killing effects, would lead to the upmost goal of cure. However if spread has been identified or the facts lead to think it not contained then removing the gland or treating it alone would not reach the same outcome. External beam radiation is typically the choice for such cases. Chemotherapy is the common choice for those confronting systemic cases. Chemo really kills the cancer (similarly to radiation) but it is indiscriminate so that it affects normal living cells too. It cannot be programmed to be administered with intent at cure but palliative. Hormonal manipulations (ADT) are also palliative means to control/delay or slowdown the advancement of the cancer. Some guys chose ADT as their prime treatment successfully but this is not recommended in aggressive types of cancer. These are more prone to refractory.

In over looking the other aspects of PCa, my opinion is that young patients may have lesser health complications so that are expected to recuperate faster from therapies but will also be the ones to experience lost of quality living due to the side effects. Older patients are spared from therapies involving risks. They become the target for palliative approaches.
I also think that the aggressivity of a cancerous cell doesn’t prioritize a certain therapy over the other, but it will give rise to consider a combination of therapies. Aggressive types that do not form solid tumors (micrometastases) are the most difficult to treat as they are more propitious to spread faster invading surrounding tissues.

Each patient case is not to be compared but the circumstances involving each story are sometimes comparable. In 2000 (50 yo) I was diagnosed with a voluminous case (all biopsy cores positive), high PSA of 24.2 ng/ml and low grade Gleason 2 and 3 (score 6). The low risk led to surgery (RP) that failed to eradicate the cancer. Micrometastases were then diagnosed (it was a new concept in 2001) and after many unsuccessful attempts in locating the cancer, I did radiation in the dark (guessing the location) which also failed and led to hormonal treatment (ADT). All image exams (BS, CT, MRI and PET) done along the years were negative, however, researchers along my survival years found better tracers/contrasts specific to prostatic cells that together with PET machines manage to provide pictures of the bandit’s hidden location. Mine, done in January 2018 gave the targets that I want to irradiate. I am now checking for possibilities in having additional radiation at the area that corresponds to the same location of my previous RT of 2006.

I am hopeful for a successful outcome and so that should be also your case with the treatment that you will choose.

 

Be positive. You will do fine.

Best wishes,

VG

Rickdean
Posts: 17
Joined: Mar 2018

Get it removed and be done with it.  KU Med Dr. William Parker.  That's all he does.....2 on Wednesday and 2 on Friday.  I got the late Friday one 3 months ago with NO side effects.  None.  Dry from day one and full erections that week.  My 3 month post PSA .09 with clear margins on path report.

Regulator
Posts: 42
Joined: May 2018

Rickdean,

Thank you for recommendation, and as I've said elsewhere, thank you for your encouraging story with respect to surgery.

At this time, I too am leaning toward surgery, despite the fact that several surgeon's have declined to perform it. However, in fairness to them, my personal particulars are significantly different (worse) than yours, and its important to point out that because of this, not all surgeon's will agree to surgery, regardless of what the patient themselves may want. Presumably, this would include your own Kansas-based surgeon, Dr. Parker. As I see it, surgeons are much like attorneys; they don't typically like to take cases involving too much professional risk (i.e., cases they may not win in the end).

Regulator
Posts: 42
Joined: May 2018

My thanks to all who have responded here over the past 24-hours or so (Rob, Hopeful, ASAdvocate and VG), and my sincere apologies to each of you for the delay in replying to you. As I have indicated earlier in this thread, I have an exceptionally full week ahead including out-of-state travel for visits with both surgical and radiation oncologists, and I am rather busy preparing for the travel involved, but I will most definitely respond to each of you personally upon my return, which should be the week of June 4th. In addition, following these two impending medical visits, I hope to have a far better feel for just what treatment options are going to be available to me moving forward, and what these additional specialists personally recommend for me. So please bear with me if you can and watch for those responses from me next week sometime.

Until then, thanks again to everyone for graciously sharing your experiences and opinions with me, and my very best to all.

Regulator

lighterwood67's picture
lighterwood67
Posts: 181
Joined: Feb 2018

Well, best wishes on your journeys.

Regulator
Posts: 42
Joined: May 2018

O.K., so, I'm back from out-of-state travel in which I met with several acclaimed surgical and radiation oncologists, and I have much to share about those three consultations including the results of some additional (long overdue) imaging that finally occurred there.

However, I still have an FDG-Pet Scan to complete here in my howmtown tomorrow afternoon, which we're all hoping will provide even further clarification on things, so I will wait until that final imaging report is completed to collectively summarize here all of what I have learned over this past week or so. I hope to be able to post that summary tomorrow night sometime, but certainly by the end of the week. Until then, thanks for everyone's continued support and best wishes to all!

Old Salt
Posts: 720
Joined: Aug 2014

Not a medical professional, but as a Gleason 9 patient myself, I would start hormone treatment ASAP. Your PSA has been rising far too rapidly! 

Then make the decision of surgery versus radiation. Actually, it's more complicated because surgery will probably have to be followed by further treatment. And radiation will probably involve a double attack. 

 

Regulator
Posts: 42
Joined: May 2018

Old Salt

Thanks for your concern and advice, and to be clear, I totally agree. I would have been on ADT or some kind of meds 2-weeks ago per my medical oncologist's recommendation, but they interfere with the uptake of some of the various tracers used for advanced imaging, which will all have been completed by tomorrow. So yes, I'll likely be on Casodex or Lupron or something by next week at the latest. Thanks again for your comments and your military service.

Correction: My apologies, "Old Salt". It appears that I have mistaken you for a different Forum member named "Old Timer" or "Jerry", who is a World War II veteran whose postings I encountered in another thread here on the forum. So, my expressed thanks for your military service earlier may or may not have been misdirected, but my thanks for your concern and advice still stands. ;-)

Old Salt
Posts: 720
Joined: Aug 2014

for the correction. 

VascodaGama's picture
VascodaGama
Posts: 2958
Joined: Nov 2010

Regulator,

Do not rush. Surely ADT will make part of your treatment but get the tests done firstly, coordinately. The PSA is your present marker to evaluate the situation so that it should be unmasked by any effect of a palliative hormonal affair. Starting Casodex in two weeks is just fine and the outcome wouldn't be different. I recommend you to get a Testosterone test before starting ADT as info to regulate the future effectiveness of ADT and probably a DEXA scan (bone densitometry) to verify bone health (ADT is linked to bone loss).

 I would like to know the results of the FDG-PET scan. This uses the glucose to trace molecular accumulations which is not specific to prostate cancer but it provides clues on possible locations when judged together with other information in hand. You are looking for localized metastases (at lymph nodes and surrounding tissues) and bone lesions. The gland is whole infested as found in the biopsy. The data will help you to decide on your next step. I hope you have already done researches on therapies, their risks and side effects, and have involved the family in the decision process. Once the pieces fit together and you feel comfortable then you can proceed because you will blow the bandit to the canvas and feel good.

In this link you can read on the capabilities of a PET exam;

http://jnm.snmjournals.org/content/52/1/81.full.pdf

Wishing you luck and peace in this difficult period.

Best,

VG

Regulator
Posts: 42
Joined: May 2018

VG,

As always, you remain an inspiration and a bright ray of light to me in this dark new chapter of my life, and I thank you again for your continued efforts to provide me with the guidance that you have.

I am currently awaiting the results of an FDG-PetScan that was completed just this past thursday (6/7), before adding an updated post to this initial thread. I had hoped that the results would be available by now (Sunday 6/10), but alas, they are not.

However, I can and will take this opportunity to share some of the significant new developments that resulted from my out-of-state visits with various specialists last week.

First-up, I met with a very prominent surgical oncologist who after reviewing my various particulars (biopsy, Gleason, etc.), said that he too would NOT agree to perform either open or robotic RP surgery in my case. He is the second such surgeon to have said this. In citing his reasons for the decision, he listed 1) my age of 66, 2) my height and weight of 6'3", 325 lbs., 3) my current PSA value of 69 ng/mL, 4) My PSA doubling time of <6 months, and 5) my high Gleason score of 4+5=9.

In his view, and in the view of the earlier (local) surgeon who also declined to do surgery, these five (5) factors point to an almost 100% certainty of metastasis or extra-capsular involvement.

However, it is important to note that neither of these two surgeons had access to any 3T-MRI or PetScan imaging at the time of those decisions, and both of those two imaging events have since been completed. In addition, the 2nd surgeon's office had its pathologist call for and review the original biopsy slides to establish a firm 2nd opinion on the Gleason scoring, etc. And significantly, two seemingly 'positive' things happened:

1) The 2nd pathologist's report 'downgraded' the lone biopsy specimen with the highest Gleason score of 4+5=9 (Specimen #4), to a GS of 4+4=8.

2) The 3T-MRI results done on 6/7 showed a sizable (1" diameter) nodule on the surface of the prostate near the right base, extending downward toward the right seminal vesicle, which significantly, is in complete contrast to my initial CT Scan which had indicated there was "no nodularity" detected. The MRI radiologist's report went on to say that the growth appeared to be as yet contained, with no apparent involvement of the lymph nodes, the pelvis, the bladder or other peripheral areas.

However, this report of potential containment did not change either surgeon's opinion on whether or not they would agree to perform surgery, and hopefully, the PetScan results from this past thursday will provide some additional clarification as to whether or not there is the prospect for true "containment". Note: I've used the term "prospect" here because I now firmly believe that only surgery (not imaging), can determine this condition with any degree of certainty.

I will return here to post the results of the PetScan as soon as they become available, along with some added information about a visit with a surgeon who has recently agreed to perform the surgery, should I choose to do so. Meanwhile, thank you again for your continued contributions to this thread, and for your kind and considerate support.

All the Best,

Regulator

ASAdvocate
Posts: 112
Joined: Apr 2017

Another consideration to be aware of is that radiation can penetrate and kill the cancer cells in the margins and lymph nodes that the surgeon may not choose to cut into. If radiation is the choice to kill the cancer after surgery fails, why not do RT (ADT + BT + EBRT) from the start, and not suffer the side effects of two radical treatments?

 

hopeful and opt...
Posts: 2218
Joined: Apr 2009

The side effects of each treatment are cummulative. Surgery is a localized treatment and will not cure in your case. It will be redundant, and can cause additional side effects.

Since prostate cancer is multifocal, the 3T MRI may not be able to detect extracapsular extenstion of small lesions, that is the cancer outside the capsule. As the two surgeons indicated, it is almost 100 percent likely that the cancer has escaped the capsule for the reasons that you stated.

The results from a PET scan may indicate where the cancer is located outside the capsule so the radiologist can direct to that area(s)

FDG-PetScan

https://www.ncbi.nlm.nih.gov/pubmed/27825430

There are various PET scans available to include FDG with Acetate, available in PHoenix, Az, Dr. Alemeda..............VG has studied this more than I, and may provide info on whether the FDG Pet scan that you had on thursday, will be effective in best determining where the cancer is for your situation

 

Regulator, we are here for you

 

Regulator
Posts: 42
Joined: May 2018

Hopeful:

Thanks for your continued support and warm sentiments as well. I'm most grateful to you.

As I told ASAdvocate (above), I will be adding some more testing/imaging details here in a few moments, including the results of the recent FDG-PetScan, so please refer to that posting also for additional details in response to your posting here. But I think your comment that "surgery is a localized treatment" is at the absolute heart of my particular diagnosis and prognosis, and its what makes the impending decisions so difficult. As you will see in the posting yet to come (below), the recent FDG-PetScan results were completely "negative" . . . "no abnormal FDG activity detected" anywhere in the entire head-to-thigh scan, including the head and neck, chest, abdomen, pelvis, osseous structures and lymph nodes. Nothing!

This means that other than the grim biopsy results of 4+4=8 in a single core, ALL subsequent imaging has failed to elucidate extra-capsular anything (!!), not two CT scans, not a bone scan, not two separate and distinct 2T/3T MRI's, and not an FDG-PetScan. So, I ask you . . . wouldn't the average lay person and/or trained radiologist consider that collective array of imaging exercises to be relative proof of "localized" disease? Because if not, I'm deeply, deeply confused.

If in-fact, these various imaging gymnastics are ALL wrong, and the disease is in-fact NOT "localized" (i.e., it has spread and they ALL missed it), then going forward, what possible future treatment process is going to provide confirmation one way or the other, OTHER than surgery? That (in a nutshell), is my dilemma.

Regulator
Posts: 42
Joined: May 2018

ASAdvocate:

My sincere thanks for your continued participation and contributions to this thread, and to my future treatment decisions.

I will be posting the results on a recent FDG-PetScan and discussing some of the decisions still facing me in a few moments (so watch for that below), but let me clarify that as yet, I have not made a firm decision on which way to go (i.e., surgery vs. radiation).

Also, I should underscore that I fully understand the fact that even if I were to undergo future RP surgery, my 'high-risk' circumstances may in-fact still require some form of post-surgical radiation, and probably ADT as well. And consequently, I understand your point that if radiation is in my future regardless, why on earth would I agree to essentially double my pain (so-to-speak), by having a seemingly redundant or unnecessary surgery? Unfortunately, my answer to that is not particularly straight forward for several reasons.

First-off, I have yet to see and talk at sufficient length with a well-qualified radiation oncologist, to ask some of the more important questions relative to the plethora of radiation treatments in current everyday use out there for patients like me, but I will be doing so in a matter of days. It will involve yet another out-of-state trip, but I am eagerly looking forward to that visit, because for me, the single most important unanswered question in this whole debate about surgery vs. radiation, is this . . .

If I were to pass on the surgical option in favor of some form of radiation plus ADT, I would imagine that the radiation treatment would be at a much higher/hotter dosage (of radiation), applied over a longer period of time, and over a wider area of the body, than would be the case for so-called "adjuvant" (i.e., post-surgical) radiation. In other words, I'm prepared to attack this beast with whatever is required and with whatever qualified professionals suggest, including all three options (surgery, adjuvant radiation and ADT), or just radiation and ADT if necessary. But whichever approach is best, needs to make common sense to me, and right now, it doesn't, because as of right now, I still lack the opinion of a qualified radiation oncologist.

I hope that helps.

VascodaGama's picture
VascodaGama
Posts: 2958
Joined: Nov 2010

You are big by measurements and that could be the reason for doctors to deny performing the surgery, in particular if one is looking for robot surgeons. I recommend you to discuss the matter with the urologist you are meeting this week regarding the protocol and other aspects involving surgery. I do not know much apart from the info you share here but open surgery could be better if you decide to go that route.

In regards to the two subjects you point out above: 1) The Gleason score 8 invading the seminal vesicles is not less aggressive than the Gleason score 9. It must be considered in judging the field of attack carefully because the vesicles are known to be one of the potential routes of escape used by the bandit. 2) The comment on the MRI report "... the growth appeared to be as yet contained ..." may be what was seen on the film but the MRI also got limitations in detecting small sized tumors (as commented above by Hopeful) inside and outside the gland. We know by the biopsy that the apex is also infested but the MRI report doesn't comment on that.

Due to your status, it is hard to believe that surgery alone would do the job and provide peace of mind. You have to give some consideration on a protocol for a combination therapy (based on an adjuvant post neoadjuvant) or planning a sequential treatment phased on recurrences (if those become evident).
I hope the PET scan will provide you with the missed info for the decision.

Best wishes,

VG

Regulator
Posts: 42
Joined: May 2018

Yes, the two surgeons that have declined to perform the surgery in my case have both indicated that height, and particularly weight, have been key factors in their decisions. They have both expresed that the DaVinci robotic system requires the patient to be placed at an extreme incline, and that body-weight thereby becomes an issue for normal breathing and other physiological functions during the actual surgical procedure. And I'm good with that (i.e., I completely understand). However, the literature makes it quite clear that thousands upon thousands of overweight men have robotic RP surgery performed on them every year, worldwide, and for an equal or perhaps larger percentage of the population, an alternative so-called "open" RP procedure is employed.

However, in my discussions with both surgeons, it was exceedingly clear to me that this business of 'body-weight' was secondary in importance to the high PSA, brisk PSA doubling time, and high Gleason score. In other words, body-weight was far less important to both surgeons than whether or not the disease was "localized", which given the numbers, neither gentleman felt was even possible. And keep in mind that neither gentleman (neither surgeon), had access to the high-resolution 3T-MRI or FDG-PetScan results that have been completed following their decisions. Since then, the 3T-MRI, and now the FDG-PetScan results, both appear to show that despite the odds and despite those three 'high-risk' variables, the disease is apparently "localized".

Lastly, I should reiterate what I said to other members in earlier postings on this thread, and that is this . . . I intend to pursue whatever combination or configuration of treatments are suggested by the qualified professionals involved, including surgery + radiation + ADT, or simply radiation + ADT, but not until it makes some common sense to me. And right now, NONE of it does, because right now, the decisions by the "professionals" have been based largely upon the somewhat irrational presumption of "non-localized" disease, when there is insufficient evidence to support that assumption. 

Regulator
Posts: 42
Joined: May 2018

Back when I was a graduate student in college, nearly 40-years ago, the Voyager-1 spacecraft was launched, and it has since traveled well over 3-Billion miles, at the average speed of 38,000 miles-per-hour, taking and sending back high-resolution images of the backside of Neptune, on its way to the Kuiper belt and remote destinations beyond . . . .

And yet, here we all sit, 40+ years later, using 4-6 different "advanced" imaging modalities, and we are unable to get a diagnostic image of the walnut-sized human prostate gland, that is of sufficient resolution and quality to definitely determine whether or not cancerous cells have moved a mere inch or two in the body.

Go ahead! Color me critical or overly-discerning, but for me personally, it is hard to believe that 40-years later, THIS is the present state of medicine.   

Old Salt
Posts: 720
Joined: Aug 2014

One needs to realize that just a few cells that have moved beyond their physiological boundary can, IN DUE TIME, give rise to medically relevant cancer (metastasis). 

Regulator
Posts: 42
Joined: May 2018

Yup! Knew that was coming, and I'm good with it ;-),

But lets be fair - you cannot deny me the fundamental point that was made there. I think that you, and I, and virtually everyone else reading this thread, can probably admit that however small or large, there is a distinct likelihood that the reported 'negative' results of this most recent FDG-PetScan are very much like the reported 'negative' results of all previous imaging exercises that I've undergone . . . it could very easily be yet another "false negative". And in my book, as a trained scientist myself, that's a rather "dismal" performance record by pretty much any standard of measure you choose. In fact, in the line of work that I retired from (instrumental/analytical chemistry), if I had reported five-out-of-five 'false negative' results, I would have been terminated on the spot! Fact!

And another point to be made for comparison . . . we often talk about micro-metastasis and single cells as though its an insurmountable challenge to track them or detect them, and unfortunately, at least at the present time, that is quite true. Yet by comparison, using present-day instrumentation, we're routinely able to detect, distinguish (or identify), and accurately quantify a 'single' molecule of PSA floating amidst a sea of 1-Billion or even 1-Trillion other molecules (i.e., 1-ng/mL and 1-pg/mL, respectively). Thus, my point remains - there is considerable room for improvement in present-day imaging technologies, and I trust that someday soon, they will be developed. In fact, I'm quite sure of it! Wink

Grinder
Posts: 437
Joined: Mar 2017

We understand your frustration, Regulator.

I, too, was very frustrated over the Parkland shooting recently.

I just had a laser cut a flap off my cornea, shape the lens to exact micro-specifications, then lay the flap back over and heal to perfect vision in a matter of a few hours...

Yet, we have no way to remotely disable and disarm a school shooter. A stun gun won't work because they have to be wired to the power source and are not all that accurate, certainly not as accurate as an AR-15.

40 years ago Star Trek was imagining inventions that were in process... whatever happened to "set your Phasers on stun"?

This should be the #1 priority of American invention, making schools safe.

Its not just the state of medicine.

Regulator
Posts: 42
Joined: May 2018

Great point, Grinder! And I fully agree. Its not just medicine - its literally everything.

VascodaGama's picture
VascodaGama
Posts: 2958
Joined: Nov 2010

Regulator,

I agree that today's approved equipments/techniques in image capabilities to locate cancer do not satisfy what we would expect. But if we compare the present modalities against what existed 18 years ago (at the time of my diagnosis) then we may feel fortunate for having been diagnosed today. Systems delivering radiation are also better and there is higher understanding on each treatment outcome.

One problem we all confront is the safety standards that have grown in number and perfection along the years, in all matters of a society. In the medicine, it is common to take ten years (from the invention, through the trials to the approval of the FDA) before we can grab a drug/treatment that we all know to exist already. I can accept the delay but I disagree that we are offered modalities or therapies that are known to be obsolete.

I am glad for knowing that there are no far metastases. I wonder what the FDG-PET exam identified. Can you provide a copy of the report? In terms of SUVs, what was the distribution?
In localized cases, where several therapies may take place, one needs to consider the quality of life after treatment. Balancing is important.

A note on your comment about the Voyager-1, I am also fascinated with the progress and improvements done on space explorations, we have been assisting along the 40 years since Voyager's deployment. The more resent Rosetta affair (2004-2014) that set foot on a moving Comet with 4Km wide (ball of ice and dust), is an extraordinary accomplishment by man. I wonder if a portion of the budget used in such space exploration, has been placed in medicine researches, we would have get rid of cancer for good today.

Well, one can think that the bandit will also enjoy a trip to Mars and beyond.

Best,

VG 

Regulator
Posts: 42
Joined: May 2018

VG,

Personally speaking, I'm afraid I don't quite know what to make of the 'negative' results from the recent FDG-PetScan. Given all of the gloom-and-doom language and dire predictions that I've experienced from multiple medical professionals since my initial diagnosis in February, I have essentially been put 'on-edge' about the validity of ANY imaging results. In other words, doctor after doctor has repeatedly forewarned me that given my high Gleason score, the high PSA, and the quick PSA doubling time, I should essentially "expect" bad news at each and every turn, including to "expect" reports of metastatic disease of some form from CT scans, bone scans, MRI's and PetScans. However, in practice, that has not proven to be the case, which causes me to question the accuracy/validity of this most recent PetScan. In other words, given the expectation that this PetScan is highly specific and should have been 'positive' in some way or another, I am now concerned that the 'negative' result in this instance may simply be another 'false negative' of some kind, and that perhaps there is in-fact some form of metastasis somewhere yet to be identified.

And this fear would seem to be well-founded for several reasons:

First, most of the other imaging exercises that I've completed to-date have resulted in 'negative' results. Although the recent 3T-MRI test did a marvelous job of defining the size and location of the 2.6 cm (1.0") tumor at the right base of the prostate, it showed "no extra-capsular involvement", and the initial CT and bone scans were also both 'negative'. Now, we have yet another scan (an FDG-PetScan) which purportedly shows "no abnormal FDG-activity" in the head, neck, abdomen, pelvis, osseous structures or lymph nodes. To be clear, I have yet to discuss these findings with my oncologist(s), but significantly, the report makes no mention whatsoever of any FDG-activity in or around the prostate itself (??), which seems extremely odd to me.

If the prostate itself has an exceptionally large (1.0") nodule at its base (which was confimed by 3T-MRI on 6/4/18), and it is literally a "furnace" of cancerous activity, that is cranking-out cancerous cells en masse as well as super-elevated levels of PSA at a very brisk rate of speed (i.e., rapid doubling time), then one would certainly think that cells throughout the entire prostate gland would have absorbed the F18-glucose-based (FDG) isotope and lit-up like a Christmas tree when scanned. Yet there is NO mention of any FDG activity in and around the prostate itself. Why? This lack of activity at the very core of the cancer (at the very heart of the tumor itself), seems highly suspcious to me, and tends to bring the overall results of the PetScan into question, in my view.

The only "positive" hypermetabolic FDG activity witnessed or cited in the entire PetScan report was in the "Chest" area. It indicated multiple foci of increased FDG activity (as noted in fully quoted text of the radiologist's report below), but the radiologist concluded that these "posterior pleural based opacities and nodules" - "favor infectious/inflammatory process and are less likely to be isolated prostate cancer pulmonary metastases."

~~~~~~~~~~~~~~~~~~~

Per your request, here is the fully quoted text from the radiologist's report for the recent FDG-PetScan:

BEGINNING OF REPORT

"FINDINGS:

HEAD/NECK

No abnormal FDG activity.

CHEST:

Multiple foci of increased FDG activity noted correlating with dependent pleural based soft tissue nodules including: Semi-solid 8mm upper right lobe, SUV max 5.2. Superior located hyperdense 7mm right lower lobe, SUV max 6.6. Superiorly located ground-glass 6 x 9 mm right lower lobe, SUV max = 3.4. Noncalcified superior aspect of the left lower lobe measuring 11 x 10 mm in dimension, SUV max 5.8.

ABDOMEN AND PELVIS:

No abnormal FDG activity.

OSSEOUS STRUCTURES:

Additional noncontrast attenuation CT findings: No significant cervical lymphadenopathy. No mediastinal lymphadenopathy. No focal airspace consolidation in the chest. There are multiple posteriorly pleural based nodules as described above. No acute intra-abdominal process. No significant retroperitoneal mesenteric lymphadenopathy. No acute fracture or vertebral end plate destruction. No lytic or blastic lesion.

IMPRESSION:

1. Multiple foci of FDG hypermetabolism correlating with postyerior pleural based opacities and nodules. In the setting of no demonstrable mediastinal or hilar lymphadenopathy, finding favor infectios/inflammatory process, less likely isolarted prostate cancer pulmonary metastases.

2. No hypermetabolic masses lymph nodes are identified to suggest metabolically active disease. However, FDG PET has limited sensitivity in the setting of prostate cancer."

END OF REPORT

~~~~~~~~~~~~~~~~~~

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3228
Joined: May 2012

regulator,

PETs and CTs for PCa metastasis are of little value, except in extreme cases of massive, late involvement.  

No images on a PET is no proof against metastatic PCa disease.  Your most authoratative data are PSA and Gleason, and they are what must guide you, prior to other definitive proofs. If I had been your oncologist, what I would have told you pre-PET would be to expect "no hits at all on the PET, regardless of metastasis."

It seems you have exchanged many thousands of words regarding this issue above. This report, in my read of your situation, changes nothing at all.  I would guess that you have at least some degree of micrometastasis at this time.  An educated GUESS.  That is, the same thing our doctors use.

max

Regulator
Posts: 42
Joined: May 2018

Max,

Thank you, and in retrospect, I couldn't agree more. Personally speaking, I mistakenly put far too much faith in the value of advanced imaging and its ability to provide definitive evidence of the presence or absence of "containment" (i.e., metastasis), and in the end, that single mistake cost me a great deal of value time. I'll quote myself here from a recent posting on another thread, because this pretty much explains how I got caught-up in it:

"Chucket:

As a recently diagnosed high-risk patient myself, I am days away from a final decision on my first-line of treatment (i.e., RP/ADT or RT), and I have just today begun initial but long overdue treatment with Casodex. However, if I have ANY regrets at all, its the misguided faith that I put into advanced imaging techniques and their potential to clarify things with respect to metastasis.

Having been told from day-1 by multiple practicioners that CT scans, bone scans, PET scans and MRIs woiuld likely prove to be very helpful in elucidating the localized or non-localized nature of my disease, and further, that ADT drugs could potentially interfere with the uptake of various tracers used in those imaging events, I mistakenly placed more value on the scans themselves than the ADT treatments, and that was a MAJOR error on my part. Like you, an array of 5-6 different imaging modalities (CT. bone, Pet, MRI, etc.), proved to be pointless exercises, and because of scheduling issues, these various scans lead to several months of unnecessary delays in beginning treatment. So, if I had any meaningful advice for newly diagnosed patients of PCa, it would be this . . . skip the CT, bone and most forms of PET scan, and get a high-quality 3T-MRI instead, then proceed with your treatment of choice. Had I done this, its safe to say that my treatment would have begun over 100-days ago, which was valuable time lost." 

Old Salt
Posts: 720
Joined: Aug 2014

1. Surgery and take the risk that some cancer cells have escaped (could be 'local' to the periphery of the prostate) or (micro)metastases to other parts of the body. In the latter case it MIGHT be necessary to follow up with radiation in case the PSA rises above a certain limit (0.2 is often used, but some use an even lower limit for action). 

2. Radiation (for high Gleason cases, typically a combination of two kinds, like IMRT + brachy). The radiation field could include peripheral tissues, as deemed necessary by the Radiation Oncologist.

Micrometastases elsewhere in the body might be inhibited (I hate to use the word eradicated) with ADT. In other words, a triple assault.

My case (many Gleason 9 foci) wasn't too different from Regulator's and I choose the latter course of action. Moreover, I was deemed too old for surgery anyway (sob). I choose an experimental radiation strategy, SBRT first, followed by IMRT because the clinical protocol appealed to me and the academic investigator had an extensive record in that area. 

PS: I second Max's post.

PS#2: Medical science is usually not absolute; it's typically about probabilities (and more so with prostate cancer).  The patient has to carefully weigh the options and then decide; not easy. 

Regulator
Posts: 42
Joined: May 2018

Old Salt,

Like you apparently once did, I am holding-out hope for future RP surgery, in hopes that I can complete the surgery and follow it with RT/ADT as necessary. However, my particulars are such that few surgeons have been willing to agree to surgery. In fact, so far, none have agreed to do so (N=2). Rightly or wrongly, I remain convinced that regardless of protracted recovery time and adverse side effects likely to occur with surgery, my best chance for a truly 'holistic' approach to long-term survival is to begin with surgery. Given a choice, that is the 'trifecta' (or "triple assault") that I would most like to pursue in my case. 

That said, it is entirely possible (maybe even "probable"), that I will eventually be proven wrong. It is also entirely possible that I will never be able to identify and secure a surgeon willing to perform the surgery in a reasonable timeframe. In which case, I will be forced into RT/ADT alone. 

lighterwood67's picture
lighterwood67
Posts: 181
Joined: Feb 2018

Just curious of how old were you when you were told you were too old for surgery?  I was 67 when I had my RP.  This is for Old Salt.

Old Salt
Posts: 720
Joined: Aug 2014

I was almost 74 at the time, and in reasonably good shape for that age (not overweight etc). 

VascodaGama's picture
VascodaGama
Posts: 2958
Joined: Nov 2010

I agree with you. The results are not satisfactory and do not accomplish the purposes. FDG is known to be less effective in indolent prostatic cells for the low consumption of the glucose. A tracer with Choline would have been more specific. In any case, I wonder if the exam was done properly. The time of administration of the substance must coincide with its half-life. FDG-F18 has a half life of approximately 110 minutes. The scan usually is portioned in two major areas (the pelvis and the whole body) so that the timing for the drugs administration is spaced. Usually they start at the pelvis as soon as the radiopharmaceutical is administered, and then the patient waits at a quiet separate room for about 45 minutes returning to the machine to continue the scan. The resting period allows the assimilation of the substance throughout the body. The last lot starts in the head, then the chest, abdominal and pelvis. The exam takes about three hours. Can you explain if my example is similar to what was exercised in your exam.

You have received several ideas from the survivors here. I think that you should do your judgment based on all findings including those that are possible erroneous and chose an option. Remember that even if you got a none contained case, surgery can be used to debulk the bigger tumor (the whole gland). You can then wait while recuperating and check the PSA during a period of four to six months. Later you can proceed with a combination of ADT plus RT if and when the PSA shows aggressivity. You will confront more side effects but the unmasked PSA will provide you with a realistic aspect of your status.

What ever you decide, chose the best in terms of facilities and experience of physicians.

Best wishes,

VG

Regulator
Posts: 42
Joined: May 2018

I understand and appreciate your skepticism surrounding the recent 'negative' PetScan results, and whether or not the imaging test was even conducted properly. This too has been a concern of mine from the very beginning. To help answer your question regarding the procedure itself and how it was conducted, including the timing of the intravenous injection of radioisotope and subsequent scanning, here is the quoted text from the radiologist's summary report:

"PROCEDURE:

The patient was evaluated with a dedicated PET/CT scanner. Upon arrival, the patient's fasting fingerstick blood glucose level was 119 mg/dL. 16.4 mCi of 18-FDG was injected IV at 11:42 hours, and 87 minutes post-injection, CT attenuation-correction images and then subsequent PET images (attenuation-corrected and emission-only images) were obtained from base of skull to thigh. PET, noncontrast-attenuation CT, and fused PET/CT images were then reformatted and reviewed in the axial, sagittal, coronal and 3-D maximum intensity projection planes."

In closing, despite my rather extreme biopsy and PSA particulars, I am still holding out hope for RP surgery, and I have several more appointments in the days immediately ahead, but one way or another, that decision will be made for me by circumstances, within the next 10-14 days.

Thank you again for your continued contributions, expertise and support.

hewhositsoncushions
Posts: 261
Joined: Mar 2017

I will give a different perspective from one of my Heroes, Winston Churchill.

"Perfection is the enemy of progress".

It is a long held belief in military circles that it is better to take action and resolve issues as they arise than take no action. That is not to say "Action this day!!" (his other favourite) needs to be an immediate consequence as too hasty an action could be disaster. Merely to say that there has to be a strict limit on procrastination before the enemy (in our case PCa) takes a foothold and starts invading.

Something to bear in mind...

C

PS As a Brit, I do love writing "favourite" on an American board :) :)

Regulator
Posts: 42
Joined: May 2018

Thank you for your comments and your point has been taken. I have since met with a radiation oncologist and I now have a solid treatment plan in-place, so for the most part, the research has ended, but I can assure everyone concerned that the research and associated time spent, were well worth it.

As for Winston Churchill and his wisdom, no doubt - a truly brilliant man! Many great quotes, but my favorite is . . .

"The best argument against democracy is to spend 5-minutes with the average voter."

That single, brilliant quote, beautifully summarizes just how the once 'shining city on a hill' known as America met with her eventual demise. 

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3228
Joined: May 2012

.

hopeful and opt...
Posts: 2218
Joined: Apr 2009

Heart healthy life style  is prostate healthy and diabetics healthy.

As you realize heart disease is epidemic. We, those who are diagnosed with prostate cancer as well as those who have not are most likely to die of heart disease.

Additionally there was a study among men who have had prostate surgery. The men who ate high fat dairy and meat had more aggressive cancer when there was recurrance than men who ate in more healthy manor.

http://csn.cancer.org/node/315030

http://csn.cancer.org/node/312744

I for one have changed my life style, so I exercise every day, and eat a veggie based diet; no meat or dairy....I do eat some fish.

Regulator
Posts: 42
Joined: May 2018

Hopeful,

Thank you! There is no doubt that nutrition is a critical component to overall health, and although it is likely to be of no real consequence in reversing, impeding or even mitigating the present state of one's disease, there can be no doubt that it becomes especially important in moving forward after diagnosis. Accordingly, I am focusing quite hard on making meaningful adjustments to my daily diet and eating habits. Thanks again.

Coldbiker's picture
Coldbiker
Posts: 22
Joined: Jan 2016

Look at it this way tick...tick...tick, You have delayed treatment for various reasons, valid for you at the time. Time passing with no treatment, with your numbers,  sounds like a fools errand of trying to play cancer expert by internet. Sounds harsh but by your words top people have advised you. Obviouly you are a smart guy, pushing intellectually  for the perfect answer, which to me means the answer you want, might  not the best strategy. To continue the space exploration theme, in the immortal  words of Allen Shepard "Light this Candle"  

Regulator
Posts: 42
Joined: May 2018

Thank you for your time and wisdom.

skipperben
Posts: 6
Joined: Apr 2018

you story is very similar to mine.  I am 64 and was diagnosed with prostate cancer in march.  I was using a urologist for my case.  I wrote on this page and was advised to stop seeing the urologist and go with a oncologyst.  My original psa was 34 and climbed to a 67.  my nelson score was a 4+5 =9. my biopsy showed all sectors to be cancerous.  Really looking by.  I went to Moffitt cancer center in Tampa.  I live 30 miles from there.  I was put on Casodex daily, and Luprone and docetaxel every 3 weeks along with a chemo cocktail .. again every three weeks.

 

My Psa after 3 weeks went from 67 to 24.  3 Weeks later my psa is 2.5.  I have re-read the clinical notes and what they say is that they are trying to maintain my quality of life.  When you read that.. it's shocking.. i feel great.  My urination seem close to normal.. and I only get up once a night.  with no pain.  I work full time. and golf twice a week in 100degree temps.

 

I don't know if this helps.. I'm just getting started my self.  Good luck on you journey

skipperben
Posts: 6
Joined: Apr 2018

I can't advise you on treatments.. but I went on to see an Oncologyst and my psa went from 67 down to 2.5 in 6 weeks.  They are trying to maintain my quality of life. and that's it.  I was also inoperable.  and considered stage 4.  I feel great. work full time and golf twice a week in 100degree weather. 

Stay positive and don't be afraid to go to another doctor

Regulator
Posts: 42
Joined: May 2018

SkipperBen,

Thank you for your comments and I apologize for being so late in responding. I am currently on 10-day vacation through 7/13, and still on Casodex, with my first Lupron shot scheduled for 7/17, but yes, our respective diagnoses appear to be rather similar. Not quite sure how you were diagnosed as Stage 4 (unless you had one or more positive sign of mets from diagnostic imaging, etc.?), but my scans have all been negative and the experts tell me that I'm Stage T3b or "locally advanced".

At this point, I've more or less decided to proceed with low-dose rate (LDR) brachytherapy, followed by beam therapy (IMRT), and short-term (6-months) of continued ADT (Lupron). Have you decided on any future treatment methods or are you planning on simply continued ADT/Chemo?

Whatever the case, thanks again for your responses, and best of luck to you too in your fufure efforts.

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