It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Cancer: Prostate Message Board

  • My Prostate Jouney And Situation

  • Post New Thread   Reply Reply
    Thread Tools Search this Thread
    Old 10-27-2017, 09:58 AM   #1
    lcchan0001
    Newbie
    (male)
     
    Join Date: Oct 2017
    Location: Winter Garden, FL
    Posts: 6
    lcchan0001 HB User
    My Prostate Jouney And Situation

    I am 65 years old. I was diagnosed with G8 prostate cancer just a week ago with PSA of 5.2. My 3T MRI shows a 0.5 cc tumor in the peripheral zone abutting the capsule but without evidence of extracapsular extension. I did a 6-needle biopsy that came back positive with 4+4 Gleason score. Although the MRI provides no evidence of spread, a CT Urogram and bone scan have been scheduled to see if there is any.

    I had a successful laser surgery in 2007 for enlarged prostate. At the time my PSA was 1.0. Since then I have been keeping track of my PSA levels every month or two and saw it rising steadily to 2.0 in 2012, then 4.2 in 2016, and finally 5.2 in August 2017, in 5 months. Digital Rectal Examines have all been normal throughout this time. I have a very healthy lifestyle. My diet is low carb with careful control of nutritional parameters such as carb and sugar. I exercise regularly and take various supplements to help my body and prostate. I am generally very healthy and usually only go to see my doctor once a year for check up.

    At this time of 1 week after diagnosis, I have a good urologist but I am trying to find a local oncologistI have done research on treatment options. I would really appreciate it if someone the community can provide advice.

    Thank you.

    Last edited by Administrator; 12-03-2017 at 07:41 PM.

     
    Reply With Quote
    Sponsors Lightbulb
       
    Old 10-31-2017, 09:50 AM   #2
    IADT3since2000
    Senior Veteran
    (male)
     
    Join Date: Nov 2007
    Location: Fountain Valley, CA, USA
    Posts: 3,172
    IADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB User
    Re: My Prostate Jouney And Situation

    Hi 1cchan001,

    Welcome to this board, but I’m sorry you had cause to come here. I’m sure all of us would rather have had no reason to have to deal with prostate cancer, so you are not alone!

    Your post really takes me back to the early months of my own journey that started in early December of 1999. My case was considered life threatening by doctors at two leading institutions (PSA 113.6, Gleason 4+3=7, rock hard prostate, all cores positive – most 100%, but with the relatively insensitive CT and bone (technetium) scans negative), and I was facing a prognosis of three good years and then two declining years.

    I ended up adding Proscar® (finasteride) several months later, after negotiations with my urologist team led them to refer me to a medical oncologist, who proved much more savvy in the side effects of androgen deprivation (hormonal blockade) and willing to manage me on triple hormonal blockade. That included a DEXA scan for bone density and rapid prescription of Fosamax® to protect density while I was on blockade, which I expected to be forever. It turned out my PSA dropped so low (<0.05, eventually <0.01) that I was able to pursue intermittent blockade, enjoying about half my time off the heavy duty drugs while maintaining with finasteride. It’s a little more complicated than that, but that is essentially what I did until 2013, by which time technology had improved enough, both in imaging and in radiation, that I was able to take a shot at curative radiation, that apparently has worked.

    This is the context for my response to your post. While I still think highly of triple blockade, technology, improvements have opened fresh opportunities; hence my shot at radiation. We now know, contrary to Dr. Bob’s firm belief back then (and perhaps more recently), that not all prostate cancer is systemic from the start. Even then his view looked shaky for apparently localized prostate cancer. It is now known that at least most cases of metastatic cancer start with metastases that are not that far from the prostate, in other words within the range of effective radiation, and definitely not widespread throughout the body as Dr. Bob then thought. He was among the early critical observers of more frequent and severe side effects of surgery and radiation than then acknowledged, but there too technology has moved on: surgery is somewhat improved, and radiation (including image guidance) – then quite inferior to surgery as a rule, has improved greatly in both effectiveness (where many believe it is equal to surgery for localized cases and quite superior where there is actual or suspected extension beyond the prostate) and in marked reduction of side effects.

    Therefore, it is no longer a benefit to hold back on treatment in a case like yours and mine that needs treatment. Even if your disease is metastatic but not yet so detected, there seems to be a consensus of leading experts that eliminating the local problem (meaning cancer in the prostate) is the foundation for minimizing the risk of widespread metastases or deadly prostate cancer, as well as for a shot at a cure.

    There have also been marked improvement in medications, though some of the more powerful medications are usually reserved until the traditional ones no longer work (an approach that probably needs revision to allow earlier use, which is now being done on an investigational basis). I believe you would be eligible for Firmagon® (degarelix) instead of Lupron, Zoladex or a similar drug, which might be advisable at least for the first months to drive your testosterone way low and do it rapidly.

    I’m convinced a healthy lifestyle helps a lot. The key features are diet/nutrition, exercise (aerobic and strength – both quite important), stress reduction (tough in the early months), and some mild but quite helpful medications (a statin if you can tolerate it; maybe aspirin depending on your genetics or cardio needs; and perhaps the old diabetes drug metformin that has shown a lot of potential against prostate and other cancers. Low carb is good if that does not mean cutting down on fruit and vegetables. Unlike many cancers, most prostate cancer makes little use of sugar for metabolism and growth unless the cancer is in a quite advanced form. While sugar is generally not a healthy food, fear of sugar may have steered you away from fruit, which appears to be a valuable dietary element. Processed meat is not a good idea, as you probably know, and any red meat (beef, lamb, even pork) looks risky.

    Regarding your workup, the 3T MRI scan, almost surely a multiparametric MRI, shows you are getting the advantage of some advanced technology. Would you care to share your PI-RADS score from the MRI? Regarding the bone scan, the old but commonly used bone scan based on the element technetium is not very sensitive, requiring about 10% cancer involvement in an area before any cancer is detectable. A far more sensitive scan – the NaF18 PET/CT scan (sodium flouride18) is available; it is good at virtually ruling out spread of cancer. Some other scans are as good but do the whole body, including soft tissue. You might want to discuss the type of scan you are getting or would like to have with your doctor.

    This is getting long even without going into detail on some of these points, which I would be happy to do.

    Good luck sorting this out. You have a solid basis for hope in surviving this disease without too much of an impact on your quality of life.

    Last edited by Administrator; 12-03-2017 at 07:45 PM.

     
    Reply With Quote
    Old 11-01-2017, 01:41 PM   #3
    lcchan0001
    Newbie
    (male)
     
    Join Date: Oct 2017
    Location: Winter Garden, FL
    Posts: 6
    lcchan0001 HB User
    Re: My Prostate Jouney And Situation

    Hi IADT3since2000,

    I want you to know that I greatly appreciate your detailed response to my post. You have provided me with good information and insights that likely saves me valuable time. For that I sincerely say thank you.

    As I mentioned in my post, I was diagnosed 11 days ago with Gleason score 8, Baseline PSA of 5.2 and clean DRE. I am currently going through the fact finding process to try to determine the best treatment option.

    As of now, I am leaning toward Triple Hormone Blockade (THB) because of the research I did ever since I had my BPH laser surgery 10 years ago and realized that I was at risk for Prostate cancer. Based on Dr. Bob’s publications, I have come to believe that THB has a cure rate at least as high as Radical Prostatectomy (RP) and Radiation Therapy (RT) but without the side effects. And it also treats the cancer systematically. One doubt still lingers however and that is the fact that the number of THB cases on record is much smaller. As a result, the variance in the results it produces is bigger.

    After I got diagnosed, I have visited a second urologist and a medical oncologist. So far the recommendations are as follows: 1) the urologist who diagnosed me recommends radiation because he thinks because I am G8 with PI-RAD of 4, there is likely microscopic extra-capsular extension, which is not detectable by even the multi-parametric 3T MRI. 2) The second urologist recommends RP. He thinks the cancer is contained based on the 3T MRI and it must be removed in order to cure. 3) The medical oncologist recommends Proton Beam radiation because a) the 3T MRI shows no spread and that all the areas around the prostate are clean. b) The cancer is small and only 0.504 cc and my prostate is only 15 cc. The smallness of the two makes Proton Beam the best treatment. He thinks Proton Beam will produce the similar cure rate but with much less potential side effects. Proton Beam is a form of radiation, that means my first urologist and the medical oncologist concur somewhat on the best treatment option, which is radiation. All the recommendations are good. But none recommended THB. But if THB provides similar if not better cure rate, why risk the bad side effects? Plus THB addresses the possible systematic issue of the cancer. Nevertheless, it is very encouraging and heartwarming that all 3 doctors are very positive about my situation. For that I feel really lucky.

    To complete my fact finding process, I have been scheduled to have a bone scan and a CT Urogram tomorrow to try to get a better picture of the potential spread of the cancer. My medical oncologist told me that there is likely no spread based on the 3T MRI results. He already referred me to see a radiation oncologist for Proton Beam treatment. But I want to do them to make sure. Thanks for the recommendation of the NaF 18 PET/CT scan. But we ran out of time to try to arrange it. The insurance company had trouble approving the CT Urogram because it was very similar to the 3T MRI. It took some time to get the approval.

    As to my diet, I have been following a low carb diet with mainly a lot of vegetables and fruits. My protein mostly comes from almond, nuts, fish and occasional small portions of pork. I eat a big salad with fresh fruits everyday. This program has worked well for me for years. I was able to get rid of my high blood pressure with this program after almost 30 years being on hypertension medicine. However, it does not seem to help enough to prevent my prostate cancer. But I am otherwise real healthy as indicated by the blood work that I do on a regular 3-month basis. I also take a lot of Standard Process supplements and Green Pasture Fermented Cod Liver Oil to try to maintain good health.

    Again, I really appreciate the details you share in your post. Many of the details cannot be found anywhere. Thank you.

    Last edited by Administrator; 12-03-2017 at 07:46 PM.

     
    Reply With Quote
    The following user gives a hug of support to lcchan0001:
    IADT3since2000 (11-02-2017)
    Old 11-02-2017, 01:13 PM   #4
    IADT3since2000
    Senior Veteran
    (male)
     
    Join Date: Nov 2007
    Location: Fountain Valley, CA, USA
    Posts: 3,172
    IADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB User
    Re: My Prostate Jouney And Situation

    Hi again,

    I'll refer to some of the points you raised and will reply in Italics.


    Regarding your leaning toward triple blockade:

    Here is a study you might want to look over, a complete copy of which is available, courtesy of our National Library of Medicine under the NIH: https://www.ncbi.nlm.nih.gov/pubmed/11306729 .
    I have been familiar with this study virtually since its publication as well as subsequent informal publications by the same team. What this team was doing, back then, without realizing it, was achieving what looked like great success with a large proportion of men meeting the technical criteria for “low-risk” prostate cancer. No one knew it then, though some suspected and were doing research, that many men in this group do fine with NO major treatment but rather with active surveillance. Moreover, we now have a pretty good level of confidence in the ability of hormonal therapy to eliminate much prostate cancer that is low-risk, especially where the Gleason score is 6 or lower with no Gleason grade 4 or higher in that 6. It is also known now, though many doctors are still unaware, that hormonal therapy can work for many years for the average patient, not the year and a half or two that was then (and in some places still) believed. (Due to a serious illness of the team leader, during which time many of his patients were obliged to move to other doctors, continuous/continuing records of patients in the database were not available to do research of a quality needed for publication in a prestigious journal, the kind that insists on disciplined methods and convincing data. Other teams expert in triple hormonal blockade still use it I believe, but in a supportive and temporary fashion. For instance, you could use it as support for radiation for a year and a half or so, as I did.)

    However, it is also true that more aggressive prostate cancer eventually overcomes the effects of hormonal blockade, even triple blockade, though it often takes a decade or much longer. (My cancer was still under good control with intermittent triple blockade at the thirteen year point when I elected to have radiation; however, it was clear that the control was not quite as good as it had been, and I had had to switch from Casodex®/bicalutamide to less convenient and less effective flutamide because it appeared the cancer had mutated so that it could now use bicalutamide as fuel, a common happening after a number of years on one of the antiandrogen drugs (bicalutamide, flutamide, nilutamide.) I am pretty well aware of the research, and I am not aware that even triple blockade is curative where a cure is really needed, such as in a more aggressive case you yours and mine.

    I suspect you could get a number of years out of intermittent triple blockade before moving to a try at curative therapy, but, with the benefits of modern technology, it is harder to make a case for waiting. If technology had been as good in 2000 as it is now, I would have chosen radiation then instead of waiting. I’m glad that I did wait for improvement, but you do not have to. All that said, if you did want to wait while using triple hormonal blockade, technology might advance to where you could confidently do just focal therapy that aims at part of the prostate with surgery or radiation, or one of the emerging focal techniques, or perhaps take curative medication (not yet on the scene).

    That would spare you the side effects of radiation or surgery, but would likely cause some of the likely side effects from hormonal blockade, even if minimized, as they should be when wisely managed, by using known countermeasures, such as protection of bone mineral density.




    Regarding the urologist who suspects micro metastases:

    That is a most reasonable thought, in my layman’s mind, in the circumstances. Also, usually 3T multiparametric MRI is aimed mainly at the prostate and its immediate surroundings. It can be tuned so that it takes in the larger area of the pelvis generally, or even beyond that, but it was probably not done in your case. You could check. If this doctor is right, then surgery will not be adequate. There is no way to know based on what you have related, but the odds, to me, favor choosing a therapy that is capable of destroying cancer that is beyond the prostate capsule, and that would basically mean radiation.

    Regarding the second urologist who says the cancer must be removed:

    He may be right - that surgery could be curative, but it’s a guess. If he’s wrong, you could have radiation as a follow-up, but that would leave you with side effects from both surgery and radiation, and the combination tends to be burdensome for patients as contrasted to side effects from just one or the other.

    Unfortunately, it seems that many surgeons still do not realize that radiation and its supportive technologies has improved greatly over the past two decades. Radiation is now equal to surgery in curing local (confined) prostate cancer, and it is distinctly superior in curing cancer that has spread beyond the prostate. This urologist is clearly mistaken if he thinks surgery is the only good way for you to take a shot at a cure.


    Regarding the recommendation for proton beam:

    Proton Beam is a decent form of radiation therapy, and the center at Jacksonville, Florida seems quite competent based on the research that they have published. There are downsides and negative considerations to be weighed. First, for a case like yours it seems likely that at least around 20 and perhaps around 40 sessions would be required, and Jacksonville is a major trip from your town. Generally patients get somewhat fatigued by the radiation after a couple of weeks or more, as I did, and that would make travel more difficult. Of course you could more or less stay in Jacksonville during the week. (I believe treatments would probably be from Monday through Friday with the weekend off.)

    In very recent years, radiation with fewer sessions and higher doses per session has proven reasonable. Some men are able to do a course in just five sessions, often with a day in between sessions. However, I’m thinking that would probably be judged not a good fit for your case of more aggressive cancer.

    Also, while proton beam can aim fairly precisely, a pelvic dose to eliminate any micrometastases would arguably be wise, and that would likely be done with standard, image-guided, Intensity Modulated Radiation Therapy (IMRT) to complement the proton beam. On the other hand, image guided IMRT appears to be as successful as proton beam at minimizing side effects, is no doubt available closer to you, and could do the whole job. A new technology known as SpaceOAR hydrogel looks promising to lower the rectal side effects of radiation even further from their already low levels.

    Regarding side effects, at one point proton beam looked superior to IMRT. However, IMRT has improved to the point that its side effects appear just about equal to proton beam. Research is now underway to answer that question, but it will be at least five years and more likely closer to ten before we have usable results. In some studies, proton beam seems to have a heavier side effect burden than IMRT (and a lower burden in other studies, but none of the studies doing a head-to-head comparison).


    Regarding the use of THB - triple hormonal blockade, and encouragement from the three doctors:

    I personally in your circumstances, using my layman’s background that includes no medical education, would go with radiation plus triple hormonal blockade in support for 18 months. These days, guidelines, based on research, call for hormonal therapy in support of radiation for intermediate and high-risk (you, with that Gleason 8) prostate cancer. For high-risk, two years is likely still widely accepted, but well-regarded research from Canada suggests that results are just as good with 18 months of hormonal blockade; I’m personally convinced that triple blockade makes that even better, but there are no studies to back up that belief. (A major medical oncologist felt the same way about 18 months of triple blockade in support of radiation when I consulted him back in 2012 about my own case.) Research has demonstrated that radiation, for more aggressive cases, works better when supported by a course of hormonal blockade.

    You mention “bad side effects.” Some side effects are likely from radiation, but modern radiation has what I think of as very low rates of really burdensome or serious side effects. I’m at the four and a half year point now since 78 Gy of IMRT radiation plus 46 Gy of that radiation to the pelvis to eliminate any lurking micro metastases that did not show up on very sophisticated modern scans. It is likely you will have some bothersome short-term side effects, such as urgency and frequency of urination and bowel movements. I did not want to be far from a bathroom for several months. However, those almost always resolve within months, and late term side effects are infrequent. You can check a number of studies that have been published, but one study showed, for a slightly lower dose of 73.8 Gy IMRT (and likely inferior image guidance compared to what is used today), 66% with No late side effects, 20% with mild side effects, 11% with moderate side effects that did not require medical attention, 2% with side effects that needed medical attention for resolution, and less than 1% for lasting, burdensome side effects. This study was done before some of the more recent advances that have further decreased side effects. I am personally doing fine, just a bit more urgency and frequency – quite tolerable, though I’ll be more confident of the long-term situation when I pass the five year point that is important in assessing side effects after radiation.

    The vast majority of doctors are not familiar with Triple Hormonal Blockade (THB). That’s reasonable because the publications on it are close to non-existent. I know of at least three prominent practices that have employed it extensively. As said earlier, blockade does not really cure cancer that needs to be cured; it is good at holding the line, at least for a decent number of years for most of us.

    Yes, I too would be encouraged that all three doctors are optimistic about your situation. I think they are not overly optimistic, but rather are realistic based on research.




    Regarding diet:

    All that looks good to me except you might want to completely eliminate the pork, unless you really enjoy it. The research regarding pork and prostate cancer is not conclusive – no smoking gun, but a fair amount of smoke (maybe from the barbecue ). I love barbecue, but I haven’t had any in nearly two decades because of the prostate cancer.


    I’m glad to help. I can provide more detail if you wish on specific points, but this is already quite long and no doubt a lot to absorb.

    Hang in there!


    Last edited by IADT3since2000; 11-03-2017 at 06:02 AM. Reason: added a parenthesis; later, compliance

     
    Reply With Quote
    Old 11-08-2017, 03:04 PM   #5
    lcchan0001
    Newbie
    (male)
     
    Join Date: Oct 2017
    Location: Winter Garden, FL
    Posts: 6
    lcchan0001 HB User
    Re: My Prostate Journey And Situation

    Hi IADT3since2000,

    Thanks again for all the details and suggestions in your post. They are most helpful for the situation that I am in. I greatly appreciate it. My bone scan and CT Urogram came back clean and after reviewing all the data collected so far, my Urologist, Radiation Oncologist and I came to consensus on the combined treatment of Radiation Therapy (RT) and Triple Hormone Blockade (THB) for my prostate cancer. This is the same suggestion you made in your post (Thank you !). As you mentioned, Radiation will eradicate cancer cells in the prostate and areas of microscopic spread. THB will attempt to eliminate the rest of the cancer cells in the body. The plan is to do THB for eighteen (18) months and it starts two (2) months prior to RT. This morning, I take my first 50 mg of Bicalutamide to start the process. My urologist wants me to do this for two (2) weeks prior to the Lupron shot to minimize Testosterone flare. In the meantime, the choice of IMRT vs Proton Beam Treatment (PBT) is to be decided. At this point, I prefer PBT. But I have not done enough research on IMRT to have this decision finalized. You mentioned that IMRT and PBT are basically equal in terms of cure rate and side effects. And certainly, IMRT is much more available and economical and thus easier to get approval from my insurance company. These are all positives for IMRT. But I am impressed by the Bragg Peak characteristics of the proton beam and its ability to deliver most the beam energy to the target and thereby minimize the damages to the nearby organs and tissues.

    I realize that I am only 19 days into this journey. I found that because of my Gleason 8 score, there is inherent urgency and tremendous pressure to expedite the decision making process. However, I am a little worried that some of the steps we have taken may be suboptimal. For example, my urologist did not order me a ProstaScint scan, which is far superior for detecting potential cancer spread. Nevertheless, based on the data so far, my Radiation Oncologist determines that my stage is T2b with BPSA of 5.2, clean DRE and Gleason 8.

    My next task is going to be collecting more data to decide on the choice of IMRT vs PBT. Your help will be greatly appreciated.

     
    Reply With Quote
    Old 11-13-2017, 06:07 PM   #6
    IADT3since2000
    Senior Veteran
    (male)
     
    Join Date: Nov 2007
    Location: Fountain Valley, CA, USA
    Posts: 3,172
    IADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB User
    Re: My Prostate Journey And Situation

    Hi again - glad to help.

    The ProstaScint scan, which I had in early 2000 and which gave me a big boost of hope at that time, is now obsolete, I believe, in view of much better scans that have become available that are far easier for interpretation by a radiologist - stunningly clear. (I saw the images, and my ProstaScint looked like static on a TV screen to me - glad the radiologist was very experienced.)

    I envy your negative DRE result; mine was simply described as a prostate "hard as a rock" throughout, no doubt a big player in the doctor's decision to order that ProstaScint, which was then at the leading edge of the art. I'm thinking that in view of your negative scan evidence, plus the negative DRE, the docs are thinking odds are very low for metastatic spread at this point. I've heard experts who are fond of sophisticated scans say that in situations like yours, with the evidence you have, their recommendation is to just go ahead with treatment. I can sympathize with your desire to get all the data possible, including more scans, as I too wanted more data before radiation in 2013 even after sophisticated bone and soft tissue scans. I especially was interested in multiparametric MRI, which was then just emerging as a major tool. However, my doctor convinced me that the value added would be minimal in view of the information I already had and what the treatment would definitely accomplish.

    Last edited by Administrator; 12-03-2017 at 07:47 PM.

     
    Reply With Quote
    Old 12-03-2017, 10:37 AM   #7
    lcchan0001
    Newbie
    (male)
     
    Join Date: Oct 2017
    Location: Winter Garden, FL
    Posts: 6
    lcchan0001 HB User
    Re: My Prostate Jouney And Situation

    Hi IADTsince2000,

    Thanks for the response to my 11/8/17 post. After reading up on your previous posts in this forum, I am very appreciative of the similarities between your PCa journey and mine thus far. My hope is that I’ll arrive at a cure with longevity like you have. Congratulations ! And of course, my sincere thanks for helping me.

    I started my Triple Hormone Blockade ( THB ) treatment on 11/8/17 with 1x 50mg Bicalutamide and increased to 2x50mg on 11/21/17 plus 1x0.5mg Dutasheride. I also got a 3-month Lupron shot on that day. Proton Beam Radiation Therapy is expected to start right after Christmas.

    As I mentioned in my 11/8/17 post, one thing that keeps bothering me is that knowing the low detection sensitivities of the CT and Bone scans, I do not really know whether I have cancer spread in my body. Thus, I feel uncomfortable about deciding on PBRT without a better picture of the possible cancer spread. However, as you mentioned in your response, the docs most likely think that due to my negative scan response and clean DRE, the odds for metastatic spread is very low. But that is an educated guess. I am not sure I can leave this to chance albeit it a very good one and later regret not having done all I can for my situation while I still have time. After some research, I am leaning toward asking for an Axumin PET/CT scan. I hope you can provide me with additional insight on this. I also started a new thread in this forum on the same subject to try to get more responses on my situation.

    There is a little bit of news in my THB. On 11/15/17, after one week ( I mistakenly said 2 weeks in the other post ) on 1x50 mg Bicalutamide, my PSA dropped from 5.2 to 3.7.

    Thanks for all the help in advance.

     
    Reply With Quote
    Old 12-07-2017, 02:19 PM   #8
    IADT3since2000
    Senior Veteran
    (male)
     
    Join Date: Nov 2007
    Location: Fountain Valley, CA, USA
    Posts: 3,172
    IADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB User
    Re: My Prostate Jouney And Situation

    I understand your desire to get an Axumin scan to really pin down where the cancer is and isn't; I've had similar feelings in managing my own scans with my medical team. On the other hand, your medical team is playing to strong odds in your situation, with your test/scan results to date, by going straight to hormonal therapy and then on to radiation.

    Here is another big consideration: in practical terms, the window of opportunity for getting a meaningful Axumin scan may have already closed or be about to close, as even those very sensitive scans need some cancer activity to work with, and your hormonal therapy has by now put the cancer so far back on its heels that the Axumin scan would likely have trouble picking up a meaningful signal. I'm thinking your PSA, reflecting the cancer, has already dropped to about 1 or even lower, based on your excellent result at one week after starting bicalutamide/Casodex.

    Good luck!

     
    Reply With Quote
    Old 01-06-2018, 08:01 AM   #9
    lcchan0001
    Newbie
    (male)
     
    Join Date: Oct 2017
    Location: Winter Garden, FL
    Posts: 6
    lcchan0001 HB User
    Re: My Prostate Jouney And Situation

    IADT3,

    Happy New Year! May the year of 2018 bring longevity, improved health and most importantly zero PSA.

    After discussing in more details with the University of Florida Proton Institute, I found another option: Pencil Beam Proton Treatment (PBPT) for both prostate and pelvis lymph nodes. This is a relatively new treatment they added. The process uses a very thin Pencil Proton Beam to raster scan the planned target areas. It is supposed to be the best that Proton Treatment (PT) can offer so far. Recent studies show that Pencil Beam provides improvements in terms of the toxicity results over regular PT. Since I never consider treating only the prostate alone, and I do not like the use two types of radiation, I only have two options confronting me at this point: PBPT or IMRT for both prostate and pelvis lymph nodes.

    At this point, I only have a few days to decide but I am leaning toward Pencil Beam. There is however a price to pay for this decision. First, I have to be away from home for about two (2) months. Second, I won’t be treated until the second week of March. But I believe the decision for the most effective treatment is the right choice. With regard to this, I have a few questions. First, when you treated your Prostate and Pelvis with 78 and 46 Gy, respectively, was the pelvis treatment only on the lymph nodes? Second, With my G8 situation, is it wise to wait until March to be treated ? Thanks in advance for your response.

     
    Reply With Quote
    Old 01-08-2018, 06:49 PM   #10
    IADT3since2000
    Senior Veteran
    (male)
     
    Join Date: Nov 2007
    Location: Fountain Valley, CA, USA
    Posts: 3,172
    IADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB User
    Re: My Prostate Jouney And Situation

    Hi again Icchan0001 and Happy New Year!

    Pencil beam does look promising as it solves a prior problem with proton beam: prior to pencil beam the proton beam could not be shaped as it is in Intensity Modulated Radiation Therapy. Now it can be. I can see why it looks really good for the prostate. I am not sure how such a precise beam would work for the whole pelvis, where there really is no target, with the radiation doctor rather trying to cover the whole pelvis with a dose adequate for any small pockets of metastatic prostate cancer. That would seem even harder with proton beam as it seems you would need a succession of Bragg peaks to deliver radiation through the pelvis. But I do not know much about it, and I suspect the folks at Jacksonville have solved this issue.

    In answer to your questions, my whole pelvis was radiated, the standard strategy, rather than a number of spot treatments to all the pelvic lymph nodes. Regarding the wait until March with a Gleason 8 case, my hunch is that odds are high that it won't make a critical difference. However, you might be drawing the rare short straw where it does make a difference, that difference being metastatic spread that would not otherwise have occurred. That said, it seems likely that any such spread would likely be limited to just one or a few spots beyond the pelvis, and these days it is often possible to image and eliminate most of these few metastatic spots. There is some risk of course, and it's a decision only you can make. I and my wife prayed that my decisions would be the right ones, and then I made my choices.

    Best of luck to you!

     
    Reply With Quote
    Reply Reply




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 03:38 PM.





    © 2022 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!