Newly Diagnosed as "High Risk" and Confused Beyond Words

Regulator
Regulator Member Posts: 42
edited May 2018 in Prostate Cancer #1

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.

«13

Comments

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    .

    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.

  • VascodaGama
    VascodaGama Member Posts: 3,525 Member
    Voluminous cases produce high levels of PSA

    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
    Regulator Member Posts: 42

    Voluminous cases produce high levels of PSA

    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

    VGama,

    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
    Regulator Member Posts: 42

    .

    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.

    Thank you for your response,

    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.

  • Regulator
    Regulator Member Posts: 42
    In the interests of overall

    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
    RobLee Member Posts: 269 Member

    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 optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    .

    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
    ASAdvocate Member Posts: 182 Member

    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 after RT

     

     

     

     

  • VascodaGama
    VascodaGama Member Posts: 3,525 Member
    Decisions should be done based on facts not statistics

    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

  • Regulator
    Regulator Member Posts: 42
    My thanks to all who have

    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
    lighterwood67 Member Posts: 329 Member
    Regulator said:

    My thanks to all who have

    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

    Best Wishes

    Well, best wishes on your journeys.

  • Regulator
    Regulator Member Posts: 42
    O.K., so, I'm back from out

    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
    Old Salt Member Posts: 952 Member
    Some quick advice

    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. 

     

  • Rickdean
    Rickdean Member Posts: 17

    Decisions should be done based on facts not statistics

    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

    Get it removed and be done

    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.

  • VascodaGama
    VascodaGama Member Posts: 3,525 Member
    edited June 2018 #16
    Preparedness for an intervention

    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
    Regulator Member Posts: 42
    Old Salt said:

    Some quick advice

    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. 

     

    Jerry,

    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. ;-)

  • Regulator
    Regulator Member Posts: 42
    Rickdean said:

    Get it removed and be done

    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.

    Rickdean,

    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
    Regulator Member Posts: 42

    Preparedness for an intervention

    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

    VG,

    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
    ASAdvocate Member Posts: 182 Member
    Another consideration to be

    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?

     

  • Old Salt
    Old Salt Member Posts: 952 Member
    edited June 2018 #21
    Regulator said:

    Jerry,

    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. ;-)

    Thanks

    for the correction.