Looking at women after hormone treatment starts

Hello Everyone,
My husband has just (two weeks ago) been diagnosed-- PSA 18.3 (up from 5 in one month) and his Gleason is 8. No spread per bone scan and CT but in his biopsy 11 or 12 showed cancer. We are studying the options now and are going for our 3rd opinion today.
To meet my husbands goals, he will probably be having hormone therapy and radiation therapy, perhaps CyberKnife treatments.
This morning, he was wondering if after he begins his hormone therapy if he will stop looking at women. Can some of you who are having hormone therapy answer his question?
Another question that I have is, will he stop the verbal sexual teasing that he does today?
Pretty insignificant questions but we still have to face the elephant in the room of his survivability. Maybe this is our way of coping.
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Comments

  • Kongo
    Kongo Member Posts: 1,166 Member
    He'll Always Be Looking
    RRMansWife--

    Welcome to the forum. As you must realize at this point your husband was diagnosed with a serious stage of prostate cancer. I'm glad to see you seeking multiple opinions.

    Certainly hormone treatments, if that is a course you eventually choose, can affect his libido. It affects each man differently but for most the effects are temporary. Despite that, I'm pretty sure that men are always going to be looking. They're pretty much hard wired that way and even prostate cancer can't stop that.

    As one who has had CyberKnife and know a little about it I am sorry to say that I don't think your husband is a good candidate for that procedure. It is usually reserved for men with Gleason 6. A few Gleason 7 men have had the treatment but the few failures of this treatment have occurred in that category. I have not heard of a man with a Gleason 8 and PCa in 11/12 cores doing CK although my radiologist told me a few weeks ago that they are doing some clinical studies with CK on men with advanced prostate cancer. I would urge you to contact a CyberKnife center near you that does prostate cancer (not all of them treat PCa) to see what options your husband might have with this treatment.

    The joking and teasing is probably caused by a couple of factors. First, if he can make light and laugh at this challenge in his life he can beat it. He is also probably seeking, in his own way, to diminish the seriousness of his diagnosis so that you don't worry so much. Both of these are admirable aims but I can understand how it can be annoying from your perspective. I suggest you just put up with it or counter with things like, "It's about time..." when he says he won't be looking at other women, or "That will be the day..."

    Of course he is aware of the elephant in the room. He is probably more scared than you. But the long term survival statistics are good, even for one with an advanced stage. We're all going to go sometime...I think the important thing is to take it one day at a time and make the most of the time you have now.

    I'm sure other wives will chime in with their perspective.

    I wish you both the best,

    K
  • RRMansWife
    RRMansWife Member Posts: 9
    Kongo said:

    He'll Always Be Looking
    RRMansWife--

    Welcome to the forum. As you must realize at this point your husband was diagnosed with a serious stage of prostate cancer. I'm glad to see you seeking multiple opinions.

    Certainly hormone treatments, if that is a course you eventually choose, can affect his libido. It affects each man differently but for most the effects are temporary. Despite that, I'm pretty sure that men are always going to be looking. They're pretty much hard wired that way and even prostate cancer can't stop that.

    As one who has had CyberKnife and know a little about it I am sorry to say that I don't think your husband is a good candidate for that procedure. It is usually reserved for men with Gleason 6. A few Gleason 7 men have had the treatment but the few failures of this treatment have occurred in that category. I have not heard of a man with a Gleason 8 and PCa in 11/12 cores doing CK although my radiologist told me a few weeks ago that they are doing some clinical studies with CK on men with advanced prostate cancer. I would urge you to contact a CyberKnife center near you that does prostate cancer (not all of them treat PCa) to see what options your husband might have with this treatment.

    The joking and teasing is probably caused by a couple of factors. First, if he can make light and laugh at this challenge in his life he can beat it. He is also probably seeking, in his own way, to diminish the seriousness of his diagnosis so that you don't worry so much. Both of these are admirable aims but I can understand how it can be annoying from your perspective. I suggest you just put up with it or counter with things like, "It's about time..." when he says he won't be looking at other women, or "That will be the day..."

    Of course he is aware of the elephant in the room. He is probably more scared than you. But the long term survival statistics are good, even for one with an advanced stage. We're all going to go sometime...I think the important thing is to take it one day at a time and make the most of the time you have now.

    I'm sure other wives will chime in with their perspective.

    I wish you both the best,

    K

    Cyberknife
    K, thanks for the encouragement. Reading the earlier posts in the forum, really helped me to get up to speed and to share with my husband. To get the information from someone who has experienced this, is great.

    Today, after I posted we did go to a CK doctor for a 3rd opinion. And decided that this was the procedure for Ed. Before we started our journey, my husband wrote down his priorities. Including no urinary or fecal incontinence, full recovery, etc, etc. As you suspect, perhaps few therapies, if any, will meet all his goals. Our first choice was nerve sparing surgery and when we met with the doctor we found out it was not possible. He said the best answer would likely be EBR and hormones. We made an appointment to check this out. Then today, we met with the CK guy. You are correct that Ed is on the edge of being a candidate, but after an exam, it was decided that he could benefit from CK. Perhaps with hormone therapy thrown in. The doctor is checking the studies to see if any patients with my husband's profile do better with hormone therapy than just with CK.

    After all the unpleasant side effects of the other choices, it was a relief to see that the side effects of CK are a lot less. And a huge relief to have made a decision.

    BTW, his sexual humor is fine with me. I tease him right back. ;)

    Heather and Ed
  • Kongo
    Kongo Member Posts: 1,166 Member

    Cyberknife
    K, thanks for the encouragement. Reading the earlier posts in the forum, really helped me to get up to speed and to share with my husband. To get the information from someone who has experienced this, is great.

    Today, after I posted we did go to a CK doctor for a 3rd opinion. And decided that this was the procedure for Ed. Before we started our journey, my husband wrote down his priorities. Including no urinary or fecal incontinence, full recovery, etc, etc. As you suspect, perhaps few therapies, if any, will meet all his goals. Our first choice was nerve sparing surgery and when we met with the doctor we found out it was not possible. He said the best answer would likely be EBR and hormones. We made an appointment to check this out. Then today, we met with the CK guy. You are correct that Ed is on the edge of being a candidate, but after an exam, it was decided that he could benefit from CK. Perhaps with hormone therapy thrown in. The doctor is checking the studies to see if any patients with my husband's profile do better with hormone therapy than just with CK.

    After all the unpleasant side effects of the other choices, it was a relief to see that the side effects of CK are a lot less. And a huge relief to have made a decision.

    BTW, his sexual humor is fine with me. I tease him right back. ;)

    Heather and Ed

    CK
    Heather and Ed,

    Best wishes for a successful outcome with CyberKnife. I think it is fantastic advance for cancer treatment and in my own case (Gleason 6, PSA 4.3, 1 of 12 cores positive with small involvement) I am fortunate to have experienced zero side effects.

    I hope you keep posting. I am intrigued by the treatment approach of CK for advanced PCa and perhaps the combination with HT will be the trick. Please keep us appraised of your progress.

    Wishing all the best for a successful outcome.

    I'm curious as to where you are having the treatment performed. Would you mind sharing that information?

    K
  • RRMansWife
    RRMansWife Member Posts: 9
    Kongo said:

    CK
    Heather and Ed,

    Best wishes for a successful outcome with CyberKnife. I think it is fantastic advance for cancer treatment and in my own case (Gleason 6, PSA 4.3, 1 of 12 cores positive with small involvement) I am fortunate to have experienced zero side effects.

    I hope you keep posting. I am intrigued by the treatment approach of CK for advanced PCa and perhaps the combination with HT will be the trick. Please keep us appraised of your progress.

    Wishing all the best for a successful outcome.

    I'm curious as to where you are having the treatment performed. Would you mind sharing that information?

    K

    CK site
    Hi Kongo,
    The procedure will be performed at Swedish Medical Center, part of the Seattle Cancer Care Alliance. The physician is Robert Meier.
    The nerve sparing surgeon we talked to was Bruce Dalkin at the UWMC.

    I cannot tell you how impressed I am by both these men. Dr Dalkin took notes of our visit in outline form and at the end copied it and gave it to us so we would remember everything we talked about. He was willing to answer any question and he was very honest with us.
    Dr Meier is great too. He showed us many graphs explaining survival rates, rates of side effects for all the EBR therapies, and even a video showing how much a prostate can move in just 10 minutes. Both these men were extremely compassionate. No question was stupid; all answers were long and precise. One thing really knocked my socks off. I asked Dr Meier which procedure he would recommend for Ed if Ed were his father. No flippant answer. He took a LONG time to think over his answer; his response was very thoughtful and he promised to do additional research. (Putting my socks back on).

    Heather and Ed.
  • RRMansWife
    RRMansWife Member Posts: 9
    Kongo said:

    He'll Always Be Looking
    RRMansWife--

    Welcome to the forum. As you must realize at this point your husband was diagnosed with a serious stage of prostate cancer. I'm glad to see you seeking multiple opinions.

    Certainly hormone treatments, if that is a course you eventually choose, can affect his libido. It affects each man differently but for most the effects are temporary. Despite that, I'm pretty sure that men are always going to be looking. They're pretty much hard wired that way and even prostate cancer can't stop that.

    As one who has had CyberKnife and know a little about it I am sorry to say that I don't think your husband is a good candidate for that procedure. It is usually reserved for men with Gleason 6. A few Gleason 7 men have had the treatment but the few failures of this treatment have occurred in that category. I have not heard of a man with a Gleason 8 and PCa in 11/12 cores doing CK although my radiologist told me a few weeks ago that they are doing some clinical studies with CK on men with advanced prostate cancer. I would urge you to contact a CyberKnife center near you that does prostate cancer (not all of them treat PCa) to see what options your husband might have with this treatment.

    The joking and teasing is probably caused by a couple of factors. First, if he can make light and laugh at this challenge in his life he can beat it. He is also probably seeking, in his own way, to diminish the seriousness of his diagnosis so that you don't worry so much. Both of these are admirable aims but I can understand how it can be annoying from your perspective. I suggest you just put up with it or counter with things like, "It's about time..." when he says he won't be looking at other women, or "That will be the day..."

    Of course he is aware of the elephant in the room. He is probably more scared than you. But the long term survival statistics are good, even for one with an advanced stage. We're all going to go sometime...I think the important thing is to take it one day at a time and make the most of the time you have now.

    I'm sure other wives will chime in with their perspective.

    I wish you both the best,

    K

    duplicate posting removed
    see above
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member

    Cyberknife
    K, thanks for the encouragement. Reading the earlier posts in the forum, really helped me to get up to speed and to share with my husband. To get the information from someone who has experienced this, is great.

    Today, after I posted we did go to a CK doctor for a 3rd opinion. And decided that this was the procedure for Ed. Before we started our journey, my husband wrote down his priorities. Including no urinary or fecal incontinence, full recovery, etc, etc. As you suspect, perhaps few therapies, if any, will meet all his goals. Our first choice was nerve sparing surgery and when we met with the doctor we found out it was not possible. He said the best answer would likely be EBR and hormones. We made an appointment to check this out. Then today, we met with the CK guy. You are correct that Ed is on the edge of being a candidate, but after an exam, it was decided that he could benefit from CK. Perhaps with hormone therapy thrown in. The doctor is checking the studies to see if any patients with my husband's profile do better with hormone therapy than just with CK.

    After all the unpleasant side effects of the other choices, it was a relief to see that the side effects of CK are a lot less. And a huge relief to have made a decision.

    BTW, his sexual humor is fine with me. I tease him right back. ;)

    Heather and Ed

    Confusion
    As I understand cyberknife is a very precise and excellent treatment option for small volume, less aggressive cancer, not for large volume, more aggressive cancer.

    Also there is a diagnosis test MRI with a spectroscopy done with a mri with a telsa magnate, that will stage, determine where the cancers may be is in the prostate and and areas surrounding the prostate. This is a gold standard test. Click my name for more information about this test, which may be appropriate for your husband.

    Good luck
  • VascodaGama
    VascodaGama Member Posts: 3,491 Member

    duplicate posting removed
    see above

    Ed status may be prohibitive to CK
    Heather

    I would take the opinion of Kongo as CORRECT. Ed seems not to be a candidate for CK.
    Hypofractionated radiation delivery (CK) is seen as an option for radiologists to increase the dose of radiation and apply it in less number of sections (5-7 days). This is thought to limit the risks typical of radiation applied in long periods of time (smaller single doses in 37-40 days). However, the way of applying high doses of Gys at a single fraction is proper for focal therapies such as the prostate gland (all cancer at one solo place). Hypofractionated is not good to areas where other organs most probably will be affected by reflected high dose radiation.

    If Ed is confident enough in what has been proposed to him and wants to have CK, then he should do extra researches on his diagnosis to verify if his case is contained. Second opinion on his biopsy is a must, and he should consult other radiologists on the treatment (radiotherapy) as well as on the side effects.
    In extra capsular extension cases, IMRT/IGRT seems to be appropriate.

    Dr. Robert Meier may be excellent and a pleasant character to his patients, but the tables and graphs he has shown you with the data on survivals and side effects from CK treatments, must be something of his own studies. There are not such publish information and none of that CK data related to high risk cases with the status of ED is at the hands of ASTRO.
    In fact Ed’s diagnosis introduced in nomograms indicates his case as a proper candidate for a wide area of radiation, hormone therapy, chemo therapy or a combination of these treatments.

    I have read about some clinics being involved in applying different types of radiation protocols. Such as; a combination of IMRT+Pronton or IMRT+seeds+hormonal, etc.
    CK done in such a spectrum may give good results too but it should be considered experimental yet.
    In my researches I have read about no additional benefits on hypofractionated HDR treatments done with Hormonal therapy. Due to the significant side effects from HT, that some patients experience, (it says;) “…..it was judged to be inadvisable to use hormonal therapy…” in CK protocols.

    The down fall of radiation is that SRT (salvage radiotherapy) is not recommended if the cancer recurs in RT cases. Radiation on top of radiation could imply a series of risky health hazards and loss of quality of life (including the purposes of the “lovely nights”). I am not implying that your choice is bad but for you to investigate deeply before committing to the treatment.

    You can search in the net by typing the name of treatment of your choice together with the word “prostatecancer”.
    You can also check for details about PCa and treatments from books. I would recommend you copies of these three books;

    “Guide to Surviving Prostate Cancer” by Dr. Patrick Walsh (second edition June 2007); which may help you understanding options between surgery and radiation.
    “Beating Prostate Cancer: Hormonal Therapy & Diet” by Dr. Charles “Snuffy” Myers; which informs on diagnosis and treatments for systemic cases. This oncologist is himself a survivor of IMRT+HT of a challenging case on his 12 year of survival.
    “A Primer on Prostate Cancer, The Empowered Patient’s Guide” by Dr. Stephen Strum and Donna Pogliano; which explains well the whole process of diagnosis.
    You can obtain the books from Amazon site.

    Wishing you find what you are looking for.
    The best to Ed.

    VGama
  • Kongo
    Kongo Member Posts: 1,166 Member

    Ed status may be prohibitive to CK
    Heather

    I would take the opinion of Kongo as CORRECT. Ed seems not to be a candidate for CK.
    Hypofractionated radiation delivery (CK) is seen as an option for radiologists to increase the dose of radiation and apply it in less number of sections (5-7 days). This is thought to limit the risks typical of radiation applied in long periods of time (smaller single doses in 37-40 days). However, the way of applying high doses of Gys at a single fraction is proper for focal therapies such as the prostate gland (all cancer at one solo place). Hypofractionated is not good to areas where other organs most probably will be affected by reflected high dose radiation.

    If Ed is confident enough in what has been proposed to him and wants to have CK, then he should do extra researches on his diagnosis to verify if his case is contained. Second opinion on his biopsy is a must, and he should consult other radiologists on the treatment (radiotherapy) as well as on the side effects.
    In extra capsular extension cases, IMRT/IGRT seems to be appropriate.

    Dr. Robert Meier may be excellent and a pleasant character to his patients, but the tables and graphs he has shown you with the data on survivals and side effects from CK treatments, must be something of his own studies. There are not such publish information and none of that CK data related to high risk cases with the status of ED is at the hands of ASTRO.
    In fact Ed’s diagnosis introduced in nomograms indicates his case as a proper candidate for a wide area of radiation, hormone therapy, chemo therapy or a combination of these treatments.

    I have read about some clinics being involved in applying different types of radiation protocols. Such as; a combination of IMRT+Pronton or IMRT+seeds+hormonal, etc.
    CK done in such a spectrum may give good results too but it should be considered experimental yet.
    In my researches I have read about no additional benefits on hypofractionated HDR treatments done with Hormonal therapy. Due to the significant side effects from HT, that some patients experience, (it says;) “…..it was judged to be inadvisable to use hormonal therapy…” in CK protocols.

    The down fall of radiation is that SRT (salvage radiotherapy) is not recommended if the cancer recurs in RT cases. Radiation on top of radiation could imply a series of risky health hazards and loss of quality of life (including the purposes of the “lovely nights”). I am not implying that your choice is bad but for you to investigate deeply before committing to the treatment.

    You can search in the net by typing the name of treatment of your choice together with the word “prostatecancer”.
    You can also check for details about PCa and treatments from books. I would recommend you copies of these three books;

    “Guide to Surviving Prostate Cancer” by Dr. Patrick Walsh (second edition June 2007); which may help you understanding options between surgery and radiation.
    “Beating Prostate Cancer: Hormonal Therapy & Diet” by Dr. Charles “Snuffy” Myers; which informs on diagnosis and treatments for systemic cases. This oncologist is himself a survivor of IMRT+HT of a challenging case on his 12 year of survival.
    “A Primer on Prostate Cancer, The Empowered Patient’s Guide” by Dr. Stephen Strum and Donna Pogliano; which explains well the whole process of diagnosis.
    You can obtain the books from Amazon site.

    Wishing you find what you are looking for.
    The best to Ed.

    VGama

    Over thinking
    Vasco, I think you've got mostly the right idea and perhaps I misunderstand your idea, but the issue here is not an increased dose to other organs. In fact, the overall CK dosage, as you point out, is less than that delivered by other forms of radiation.

    According to what I have read, and what my radiologist has told me, the reason most (but not all) CyberKnife doctors use a Gleason 7 as a cutoff for accepting patients for CK is that the likelihood that the cancer has escaped the prostate is simply too high. CK treats the entire prostate. If the cancer has spread outside the prostate CK treatment to the gland is not going to stop the spread. For that matter, surgery (even without nerves sparing), any other form of radiation, HIFU, Cyro, is not going to stop the spread of cancer once it is outside the prostate.

    After thinking about Ed and Heather's situation it struck me that pursuing CK is no worse (and perhaps a lot better) than any other form of treatment. If the cancer has already moved beyond the prostate no radiation treatment, surgery, or any other form of intervention is going to stop the metastasis. If indeed the cancer is still localized, then CK has a good chance of getting it. Done in conjunction with HT seems to me, on reflection, a reasonable approach.

    I also did a bit more research last night and found out that there are several CK centers that are treating patients with an advanced cancer diagnosis. I do agree that CK for a Gleason 8 might be somewhat experimental as there isn't much published on the results of doing this. Georgetown University is conducting pilot studies on using CK as a boost (3 treatments vice 5) to conventional IMRT both with and without ADT therapy. Early results show low toxicity and early indications of success. A Phase II study is being planned. My radiologist also told me that they are increasingly using CK as a boost to other forms of radiation in prostate cancer but in other cancers as well with good results.

    I think there may be some confusion here as to exactly what Ed and Heather have decided to do. Are they pursuing CK as a mono therapy for PCa or is CK being used to augment conventional IMRT (which can also address the organs adjacent to the prostate) and are they doing it in conjunction with ADT?

    As I thought more about their situation, I think that if I were in similar straits, I would probably pursue a treatment involving CK in some way.

    This link is, in my opinion, an excellent overview of how SBRT works and recent clinical outcomes.

    http://www.tcrt.org///mc_images/category/4309/04-katz_tcrt_9_5.pdf

    K
  • mrspjd
    mrspjd Member Posts: 694 Member

    Ed status may be prohibitive to CK
    Heather

    I would take the opinion of Kongo as CORRECT. Ed seems not to be a candidate for CK.
    Hypofractionated radiation delivery (CK) is seen as an option for radiologists to increase the dose of radiation and apply it in less number of sections (5-7 days). This is thought to limit the risks typical of radiation applied in long periods of time (smaller single doses in 37-40 days). However, the way of applying high doses of Gys at a single fraction is proper for focal therapies such as the prostate gland (all cancer at one solo place). Hypofractionated is not good to areas where other organs most probably will be affected by reflected high dose radiation.

    If Ed is confident enough in what has been proposed to him and wants to have CK, then he should do extra researches on his diagnosis to verify if his case is contained. Second opinion on his biopsy is a must, and he should consult other radiologists on the treatment (radiotherapy) as well as on the side effects.
    In extra capsular extension cases, IMRT/IGRT seems to be appropriate.

    Dr. Robert Meier may be excellent and a pleasant character to his patients, but the tables and graphs he has shown you with the data on survivals and side effects from CK treatments, must be something of his own studies. There are not such publish information and none of that CK data related to high risk cases with the status of ED is at the hands of ASTRO.
    In fact Ed’s diagnosis introduced in nomograms indicates his case as a proper candidate for a wide area of radiation, hormone therapy, chemo therapy or a combination of these treatments.

    I have read about some clinics being involved in applying different types of radiation protocols. Such as; a combination of IMRT+Pronton or IMRT+seeds+hormonal, etc.
    CK done in such a spectrum may give good results too but it should be considered experimental yet.
    In my researches I have read about no additional benefits on hypofractionated HDR treatments done with Hormonal therapy. Due to the significant side effects from HT, that some patients experience, (it says;) “…..it was judged to be inadvisable to use hormonal therapy…” in CK protocols.

    The down fall of radiation is that SRT (salvage radiotherapy) is not recommended if the cancer recurs in RT cases. Radiation on top of radiation could imply a series of risky health hazards and loss of quality of life (including the purposes of the “lovely nights”). I am not implying that your choice is bad but for you to investigate deeply before committing to the treatment.

    You can search in the net by typing the name of treatment of your choice together with the word “prostatecancer”.
    You can also check for details about PCa and treatments from books. I would recommend you copies of these three books;

    “Guide to Surviving Prostate Cancer” by Dr. Patrick Walsh (second edition June 2007); which may help you understanding options between surgery and radiation.
    “Beating Prostate Cancer: Hormonal Therapy & Diet” by Dr. Charles “Snuffy” Myers; which informs on diagnosis and treatments for systemic cases. This oncologist is himself a survivor of IMRT+HT of a challenging case on his 12 year of survival.
    “A Primer on Prostate Cancer, The Empowered Patient’s Guide” by Dr. Stephen Strum and Donna Pogliano; which explains well the whole process of diagnosis.
    You can obtain the books from Amazon site.

    Wishing you find what you are looking for.
    The best to Ed.

    VGama

    Hypofractionation
    RRMW,

    In our PCa journey for my husband’s T3 locally advanced PCa, one of the most important things we learned is that consideration for choice of txs must first include a 2nd opinion report from a pathology lab specializing in reading PCa biopsy samples/slides AND, the other critical thing we learned is the importance of accurate pre-tx staging with appropriate diagnostic testing to determine if the cancer is 1) prostate contained; 2) locally advanced i.e. ECE (Extra Capsular Extension) to the seminal vesicle(s); 3) distant metastasis, including, lymph nodes, bones, and/or organs. IMHO, correct staging (as much as is possible with current medical technology) is particularly important in cases where Gleason is =/>7; and/or PNI (PeriNeural Invasion) is identified on biopsy; and/or a large # and high percentage of cores are positive on biopsy; and/or nodule is detected on DRE. This info will help to guide you and your husband in making a tx decision that will have the best chance for success and meet your lifestyle goals and expectations, as it did for us.

    In regard to hypofractionation for PCa tx, simply put, hypofractionation is a radiation treatment that is divided into fewer individual sessions but correspondingly higher doses of radiation. There are several options for treating PCa with hypofractionation RT. One is SBRT. The other is HDR-B.

    SBRT (Stereotactic Body Radiation Therapy) can be delivered using CyberKnife or Varian (manufacturer’s brand names) radiation medical equipment. SBRT has about a five year history of successful results; however, these results were gathered (and are still being gathered) from trials using low risk, mostly stage T1, PCa patients. SBRT tx for intermediate/high risk PCa is STILL considered experimental as few large scale, long term, studies exist (I'm not aware of any)for this group of higher risk men using SBRT as the primary tx modality. Quoting from the info in the link cited in a previous post above: “This [SBRT data] suggests that excellent long terms results, as seen with hypofractionated HDR [see below], can be reasonably expected for CyberKnife SBRT, although long-term follow-up is needed to confirm this is the case.”

    Questions I would want to ask and want answered if considering SBRT for T3 or intermediate/high risk PCa tx: Is the cancer prostate contained? If not, what is the extent and location of the spread? Is it locally advanced? If so, what, if any add’l txs, such as IMRT and/or ADT, may be needed to mitigate the locally advanced PCa? Will the SVs receive tx? How? Will the prostate bed and/or local lymph nodes require tx in addition to the SBRT for the prostate? What will that tx be, i.e., IMRT and/or ADT? What are the increased risks and/or side effects? How are they best mitigated?

    HDR-B (High Dose Rate Brachy), as referenced above, is another form of hypofractionated radiation therapy (and the one my husband chose to tx his T3 PCa in combination with ADT and IMRT). This is radiation delivered by temporary insertion of radioactive Iridium wire into flexible needles placed in the prostate through the perineum. If seminal vesicle(s) are affected, they can be included in this tx. HDR-B has over a 10-15 year history of successful tx results and, HDR-B clinical trial results include patients identified as intermediate/high risk, with locally advanced PCa, i.e., PCa identified in seminal vesicle(s), non-mets distally with no evidence of lymph node involvement.

    You might want to take a look at recent studies that have confirmed the OS (Overall Survival) benefit of a neo-adjuvant ADT protocol combined with IMRT over IMRT alone: http://csn.cancer.org/node/215211. Guessing this might work with SBRT also, although I’m not aware of any clinical trials using this specific combination tx.

    As clinical trials progress using SBRT in the tx of intermediate/high risk PCa cases, IMO those trials will most likely show successful long term OS results and SBRT will evolve to become a viable and standard tx option in the future for treating men with intermediate/high risk PCa, most likely in combination with ADT and/or IMRT.

    From your post, it appears you and your husband have weighed the risks vs benefits in deciding to pursue SBRT, aka CK, w/ ADT for his intermediate stage PCa. Kudos to you both for being pioneers as this tx modality evolves for the tx of higher risk/advanced PCa.

    Good luck on your journey together.

    mrs pjd
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013 Member

    Ed status may be prohibitive to CK
    Heather

    I would take the opinion of Kongo as CORRECT. Ed seems not to be a candidate for CK.
    Hypofractionated radiation delivery (CK) is seen as an option for radiologists to increase the dose of radiation and apply it in less number of sections (5-7 days). This is thought to limit the risks typical of radiation applied in long periods of time (smaller single doses in 37-40 days). However, the way of applying high doses of Gys at a single fraction is proper for focal therapies such as the prostate gland (all cancer at one solo place). Hypofractionated is not good to areas where other organs most probably will be affected by reflected high dose radiation.

    If Ed is confident enough in what has been proposed to him and wants to have CK, then he should do extra researches on his diagnosis to verify if his case is contained. Second opinion on his biopsy is a must, and he should consult other radiologists on the treatment (radiotherapy) as well as on the side effects.
    In extra capsular extension cases, IMRT/IGRT seems to be appropriate.

    Dr. Robert Meier may be excellent and a pleasant character to his patients, but the tables and graphs he has shown you with the data on survivals and side effects from CK treatments, must be something of his own studies. There are not such publish information and none of that CK data related to high risk cases with the status of ED is at the hands of ASTRO.
    In fact Ed’s diagnosis introduced in nomograms indicates his case as a proper candidate for a wide area of radiation, hormone therapy, chemo therapy or a combination of these treatments.

    I have read about some clinics being involved in applying different types of radiation protocols. Such as; a combination of IMRT+Pronton or IMRT+seeds+hormonal, etc.
    CK done in such a spectrum may give good results too but it should be considered experimental yet.
    In my researches I have read about no additional benefits on hypofractionated HDR treatments done with Hormonal therapy. Due to the significant side effects from HT, that some patients experience, (it says;) “…..it was judged to be inadvisable to use hormonal therapy…” in CK protocols.

    The down fall of radiation is that SRT (salvage radiotherapy) is not recommended if the cancer recurs in RT cases. Radiation on top of radiation could imply a series of risky health hazards and loss of quality of life (including the purposes of the “lovely nights”). I am not implying that your choice is bad but for you to investigate deeply before committing to the treatment.

    You can search in the net by typing the name of treatment of your choice together with the word “prostatecancer”.
    You can also check for details about PCa and treatments from books. I would recommend you copies of these three books;

    “Guide to Surviving Prostate Cancer” by Dr. Patrick Walsh (second edition June 2007); which may help you understanding options between surgery and radiation.
    “Beating Prostate Cancer: Hormonal Therapy & Diet” by Dr. Charles “Snuffy” Myers; which informs on diagnosis and treatments for systemic cases. This oncologist is himself a survivor of IMRT+HT of a challenging case on his 12 year of survival.
    “A Primer on Prostate Cancer, The Empowered Patient’s Guide” by Dr. Stephen Strum and Donna Pogliano; which explains well the whole process of diagnosis.
    You can obtain the books from Amazon site.

    Wishing you find what you are looking for.
    The best to Ed.

    VGama

    CK & Sexuality
    FWIW, I think that early (and current) CK use was (and has been) limited to Gleason 6 and PSA less than 10 because the manufacturer and early adopters wanted to increase the probability of success which would be critical to its use by doctors and its approval for medical insurance coverage.

    Now that the use of CK for PCa has been established for over 5 years and the procedure is no longer considered "experimental" (by many but not all insurers), it makes sense that studies are now being conducted which are trying to explore the range of use to more advanced & later stages of PCa. So, I don't think that there is any evidence to suggest that CK might not in fact be effective w/more advanced & later stage cancers. It just hasn't been used to treat such patients to date and we may well find that it is as effective (if not better due to lesser side effects) than the other forms of radiation now used to treat later stage PCa patients.

    To answer the original question in the thread: I don't know personally, but I don't think any straight MAN would have any trouble "looking" at a woman after hormone treatment. He can look at woman and still get great enjoyment from the view, even if he no longer gets sexually aroused in the same way. This would be the same whether the impotency is caused by drugs or old age.

    The more telling question is whether or not he'd stop "sexually teasing" the woman he loves after treatment, because it will reveal a lot about how he views himself (not the woman) sexually. IMHO, sexual teasing (or flirting) is a form of intimacy which need not stop after hormone treatment or old age. If a man isn't concerned about his impotency and has been sexually flirtatious w/his partner before, he can still be sexually flirtatious and intimate with her after hormone treatment and most likely will continue to do so.

    But, if the man is focused on his lack of functionality and other problems after treatment, he will more likely view himself as less virile and will be less likely to act in sexually aggressive or flirtatious ways because he may believe that he can no longer give sexual pleasure to his partner because he believes that he can no longer properly perform his duties as a "man." Unless his functionality returns, this type of man will need to be helped to realize that he CAN still give his partner pleasure in other ways, which may not be sexually fulfilling to him in the same way as he experienced it in the past, but that will build closeness & intimacy w/his partner and will enable him to give her sexual pleasure as well.

    The psychological effects of PCa treatment on men is probably one of these least discussed topics and it would be worthwhile to devote more time to subject.
  • VascodaGama
    VascodaGama Member Posts: 3,491 Member
    mrspjd said:

    Hypofractionation
    RRMW,

    In our PCa journey for my husband’s T3 locally advanced PCa, one of the most important things we learned is that consideration for choice of txs must first include a 2nd opinion report from a pathology lab specializing in reading PCa biopsy samples/slides AND, the other critical thing we learned is the importance of accurate pre-tx staging with appropriate diagnostic testing to determine if the cancer is 1) prostate contained; 2) locally advanced i.e. ECE (Extra Capsular Extension) to the seminal vesicle(s); 3) distant metastasis, including, lymph nodes, bones, and/or organs. IMHO, correct staging (as much as is possible with current medical technology) is particularly important in cases where Gleason is =/>7; and/or PNI (PeriNeural Invasion) is identified on biopsy; and/or a large # and high percentage of cores are positive on biopsy; and/or nodule is detected on DRE. This info will help to guide you and your husband in making a tx decision that will have the best chance for success and meet your lifestyle goals and expectations, as it did for us.

    In regard to hypofractionation for PCa tx, simply put, hypofractionation is a radiation treatment that is divided into fewer individual sessions but correspondingly higher doses of radiation. There are several options for treating PCa with hypofractionation RT. One is SBRT. The other is HDR-B.

    SBRT (Stereotactic Body Radiation Therapy) can be delivered using CyberKnife or Varian (manufacturer’s brand names) radiation medical equipment. SBRT has about a five year history of successful results; however, these results were gathered (and are still being gathered) from trials using low risk, mostly stage T1, PCa patients. SBRT tx for intermediate/high risk PCa is STILL considered experimental as few large scale, long term, studies exist (I'm not aware of any)for this group of higher risk men using SBRT as the primary tx modality. Quoting from the info in the link cited in a previous post above: “This [SBRT data] suggests that excellent long terms results, as seen with hypofractionated HDR [see below], can be reasonably expected for CyberKnife SBRT, although long-term follow-up is needed to confirm this is the case.”

    Questions I would want to ask and want answered if considering SBRT for T3 or intermediate/high risk PCa tx: Is the cancer prostate contained? If not, what is the extent and location of the spread? Is it locally advanced? If so, what, if any add’l txs, such as IMRT and/or ADT, may be needed to mitigate the locally advanced PCa? Will the SVs receive tx? How? Will the prostate bed and/or local lymph nodes require tx in addition to the SBRT for the prostate? What will that tx be, i.e., IMRT and/or ADT? What are the increased risks and/or side effects? How are they best mitigated?

    HDR-B (High Dose Rate Brachy), as referenced above, is another form of hypofractionated radiation therapy (and the one my husband chose to tx his T3 PCa in combination with ADT and IMRT). This is radiation delivered by temporary insertion of radioactive Iridium wire into flexible needles placed in the prostate through the perineum. If seminal vesicle(s) are affected, they can be included in this tx. HDR-B has over a 10-15 year history of successful tx results and, HDR-B clinical trial results include patients identified as intermediate/high risk, with locally advanced PCa, i.e., PCa identified in seminal vesicle(s), non-mets distally with no evidence of lymph node involvement.

    You might want to take a look at recent studies that have confirmed the OS (Overall Survival) benefit of a neo-adjuvant ADT protocol combined with IMRT over IMRT alone: http://csn.cancer.org/node/215211. Guessing this might work with SBRT also, although I’m not aware of any clinical trials using this specific combination tx.

    As clinical trials progress using SBRT in the tx of intermediate/high risk PCa cases, IMO those trials will most likely show successful long term OS results and SBRT will evolve to become a viable and standard tx option in the future for treating men with intermediate/high risk PCa, most likely in combination with ADT and/or IMRT.

    From your post, it appears you and your husband have weighed the risks vs benefits in deciding to pursue SBRT, aka CK, w/ ADT for his intermediate stage PCa. Kudos to you both for being pioneers as this tx modality evolves for the tx of higher risk/advanced PCa.

    Good luck on your journey together.

    mrs pjd

    Hi Kongo, my friend CK survivor

    Kongo

    I am not “over thinking” and I am not having any “right idea”.
    I am neither an ideologist nor a radiologist but a simple researcher since been “stamped” with the prostate cancer holder insignia. My knowledge is very limited to what I read and listen from the medical community, and my comments are balanced to the best of my judgment.

    Radiotherapy in all forms presented to patients of prostate cancer got the same aim; Cure with the Lesser Side Effects. Treatment with radiation of localized diagnosed cases have shown to be successful in both; contained and in extra-capsular extension to the seminal vesicles and nearby lymph nodes.

    Many studies have been done on the practical use of radiation, taking into account its effect on living tissue (standards of Radiation Therapy Oncology Group). In the last 15 years with the advent/common use of HDR brachy, researchers found that applying high dose of radiation would correspond to better outcomes with acceptable toxicity.
    The α/β ratio established in the studies of biochemistry (the cells) to ascertain the amount of radiation needed to “kill” the various types of cells (benign or cancerous) proved that HDR is a better weapon, and so it gave the impetuous to additional studies in dose planning so that the most volume of radiation (with the lesser toxicity) would be delivered (directional) to the portion where cancer is “set”. Other exposed areas, through where the rays pass before reaching its target and in the continued path after the target, are planned depending on tissue density (on the α/β ratio), etc.

    IMRT has been successful because it can deliver a higher radiation dose to the cancer while delivering a lower dose to the bladder, urethra and rectum. Some commercial “lip service” from IMRT businessmen commend on IMRT possibility in delivering lower doses to the pelvic nerves and blood vessels, which would provide less effect on sexual ED (I certainly do not believe in such).

    Unfortunately radiation can cause a series of unwanted hazards and much care must be done in avoiding to the maximum extent any exposure of healthy benign tissues and organs (preventing them from becoming damaged or cancerous). There is a lot of concern on the matter by all radiologists submitting their patients to high levels of Gys. The American Association of Physicists in Medicine (AAPM) with more than 7000 scientists in their board, have been engaged in checking for the safety of high doses (IMRT, SBRT, HDR-Brachy) and the risk of secondary cancer developing, and they have informed unbiased that the possibility of such cases is real with treatments of long time exposure (hypofractionated) single doses.
    CK businessmen may not like to have such data publicized, but until the contrary is exposed based on results from experimentals, the majority of doctors (and insurers) will prefer to follow the recommendations from AAPM, ASTRO, ASCO, etc., when advising on a treatment.

    High doses of Gys seems not be the problem if that is fractionated into lower periods of time of exposure (1-3 minutes) giving a possibility for benign cells to “recuperate” (about 8 to 10 hours) from the “blow” they received. Longer time of exposure (hyper-fractions) of 4-7 minutes seems to cause some concern but in cases where the volume of cancer is considered CONTAINED, delivering all those Gys to that circumscript area (Homogeneous planning) is proved to be excellent “killing all” as it is shown on the 10+ years statistics for HDR-Bracky and 5 years CK.
    Higher doses and longer time of exposure are therefore preferably delivered to the prostate and lower exposure fractionated doses to the other areas where benign persists but with fewer cancerous tumors.

    Cyberknife can be successful in this type of localized cases with a planned differentiation of dosages but requires targeted standards for each patient case and many seem not be certain that the isodose planning is proper.
    In high risk cases (Gleason 8-10) it is common to read reports on recurrence, particularly from high initial PSA cases or lower PSADT. These patients are addressed in the NCCN guidelines as proper for RT if cancer is localized.
    CK is "questionable" yet for this group of patients. Adding ADT to the “cocktail” may secure improved outcomes, however, as commented in the link you posted above, ADT is not recommended by the experts due to added toxicity.
    (http://www.tcrt.org///mc_images/category/4309/04-katz_tcrt_9_5.pdf),

    IMRT is already “set” and assuring successful rates in such a setting but CK have no data to justify its application. The combi HDR-Bracky plus IMRT may be still the best choice in some cases where localized is confirmed.

    I surely applaud Ed to his attempt at cure, but as a survivor myself of radical treatments, I strongly believe that all patients should care FIRSTLY for a reliable diagnosis of their status and follow then what they think is proper to their case.
    That will lead to a successful outcome.

    It is lovely to know that you are doing ok.

    Best wishes.
    VGama
  • mrspjd
    mrspjd Member Posts: 694 Member

    Hi Kongo, my friend CK survivor

    Kongo

    I am not “over thinking” and I am not having any “right idea”.
    I am neither an ideologist nor a radiologist but a simple researcher since been “stamped” with the prostate cancer holder insignia. My knowledge is very limited to what I read and listen from the medical community, and my comments are balanced to the best of my judgment.

    Radiotherapy in all forms presented to patients of prostate cancer got the same aim; Cure with the Lesser Side Effects. Treatment with radiation of localized diagnosed cases have shown to be successful in both; contained and in extra-capsular extension to the seminal vesicles and nearby lymph nodes.

    Many studies have been done on the practical use of radiation, taking into account its effect on living tissue (standards of Radiation Therapy Oncology Group). In the last 15 years with the advent/common use of HDR brachy, researchers found that applying high dose of radiation would correspond to better outcomes with acceptable toxicity.
    The α/β ratio established in the studies of biochemistry (the cells) to ascertain the amount of radiation needed to “kill” the various types of cells (benign or cancerous) proved that HDR is a better weapon, and so it gave the impetuous to additional studies in dose planning so that the most volume of radiation (with the lesser toxicity) would be delivered (directional) to the portion where cancer is “set”. Other exposed areas, through where the rays pass before reaching its target and in the continued path after the target, are planned depending on tissue density (on the α/β ratio), etc.

    IMRT has been successful because it can deliver a higher radiation dose to the cancer while delivering a lower dose to the bladder, urethra and rectum. Some commercial “lip service” from IMRT businessmen commend on IMRT possibility in delivering lower doses to the pelvic nerves and blood vessels, which would provide less effect on sexual ED (I certainly do not believe in such).

    Unfortunately radiation can cause a series of unwanted hazards and much care must be done in avoiding to the maximum extent any exposure of healthy benign tissues and organs (preventing them from becoming damaged or cancerous). There is a lot of concern on the matter by all radiologists submitting their patients to high levels of Gys. The American Association of Physicists in Medicine (AAPM) with more than 7000 scientists in their board, have been engaged in checking for the safety of high doses (IMRT, SBRT, HDR-Brachy) and the risk of secondary cancer developing, and they have informed unbiased that the possibility of such cases is real with treatments of long time exposure (hypofractionated) single doses.
    CK businessmen may not like to have such data publicized, but until the contrary is exposed based on results from experimentals, the majority of doctors (and insurers) will prefer to follow the recommendations from AAPM, ASTRO, ASCO, etc., when advising on a treatment.

    High doses of Gys seems not be the problem if that is fractionated into lower periods of time of exposure (1-3 minutes) giving a possibility for benign cells to “recuperate” (about 8 to 10 hours) from the “blow” they received. Longer time of exposure (hyper-fractions) of 4-7 minutes seems to cause some concern but in cases where the volume of cancer is considered CONTAINED, delivering all those Gys to that circumscript area (Homogeneous planning) is proved to be excellent “killing all” as it is shown on the 10+ years statistics for HDR-Bracky and 5 years CK.
    Higher doses and longer time of exposure are therefore preferably delivered to the prostate and lower exposure fractionated doses to the other areas where benign persists but with fewer cancerous tumors.

    Cyberknife can be successful in this type of localized cases with a planned differentiation of dosages but requires targeted standards for each patient case and many seem not be certain that the isodose planning is proper.
    In high risk cases (Gleason 8-10) it is common to read reports on recurrence, particularly from high initial PSA cases or lower PSADT. These patients are addressed in the NCCN guidelines as proper for RT if cancer is localized.
    CK is "questionable" yet for this group of patients. Adding ADT to the “cocktail” may secure improved outcomes, however, as commented in the link you posted above, ADT is not recommended by the experts due to added toxicity.
    (http://www.tcrt.org///mc_images/category/4309/04-katz_tcrt_9_5.pdf),

    IMRT is already “set” and assuring successful rates in such a setting but CK have no data to justify its application. The combi HDR-Bracky plus IMRT may be still the best choice in some cases where localized is confirmed.

    I surely applaud Ed to his attempt at cure, but as a survivor myself of radical treatments, I strongly believe that all patients should care FIRSTLY for a reliable diagnosis of their status and follow then what they think is proper to their case.
    That will lead to a successful outcome.

    It is lovely to know that you are doing ok.

    Best wishes.
    VGama

    Heather
    Upon a re-read of your initial post, I am reminded that your husband is only 2 weeks post dx. In view of the potential long term impact of a tx decision on both of you, IMO, it is too early to be making a tx decision, especially with the stats you presented for your husband’s G8, high volume PCa case.

    Once you obtain add’l info to more accurately stage the PCa, then, PLEASE PLEASE, make time to do your own independent research and educate yourselves about the various tx options that would have the best chance of success with the least amount of side effects for intermediate/high risk PCa. Join an active face to face PCa networking group in your community (preferably one not connected to a hospital or clinic and one with a trained professional leader) that welcomes the patient AND his wife/partner.

    If, after this mandatory self-education process, you decide to pursue the SBRT/ADT tx (with or without IMRT), then you will have even more confidence that you’ve made the right tx decision. Only you and your husband, not the doctors or members on a CSN discussion board, etc., can be your own best advocates.

    BTW, due to the testosterone (T) lowering intent of ADT/HT drugs (necessary to shrink and slow PCa cell growth), your husband’s libido will most likely be affected. Please include “ADT & ADT side effects” in your research. Discontinuation of the drugs or intermittent ADT protocols, in which drug “vacations” recapture T and DHT to rise, should, in most men, allow a return to “normalcy.”

    All the best.
  • RRMansWife
    RRMansWife Member Posts: 9
    mrspjd said:

    Heather
    Upon a re-read of your initial post, I am reminded that your husband is only 2 weeks post dx. In view of the potential long term impact of a tx decision on both of you, IMO, it is too early to be making a tx decision, especially with the stats you presented for your husband’s G8, high volume PCa case.

    Once you obtain add’l info to more accurately stage the PCa, then, PLEASE PLEASE, make time to do your own independent research and educate yourselves about the various tx options that would have the best chance of success with the least amount of side effects for intermediate/high risk PCa. Join an active face to face PCa networking group in your community (preferably one not connected to a hospital or clinic and one with a trained professional leader) that welcomes the patient AND his wife/partner.

    If, after this mandatory self-education process, you decide to pursue the SBRT/ADT tx (with or without IMRT), then you will have even more confidence that you’ve made the right tx decision. Only you and your husband, not the doctors or members on a CSN discussion board, etc., can be your own best advocates.

    BTW, due to the testosterone (T) lowering intent of ADT/HT drugs (necessary to shrink and slow PCa cell growth), your husband’s libido will most likely be affected. Please include “ADT & ADT side effects” in your research. Discontinuation of the drugs or intermittent ADT protocols, in which drug “vacations” recapture T and DHT to rise, should, in most men, allow a return to “normalcy.”

    All the best.

    Wonderful News
    After what seemed at the time as endless bad news, we found out yesterday that his PSA is now 5.7 which is lower than it was a year ago. And that puts my husband in the sweet spot for CK. We met again with the doctor yesterday and he told us that with Ed's lower numbers (contaminated earlier sample?), we could even do watchful waiting if we choose. He did not encourage or discourage, but wanted us to be aware that with this news, we had an other option. We had covered a lot of other options including combos on our last visit. God bless the people who could do ww. We could not.
    The doctor also told us of the 147 patients with Ed's profile (Gleason 7, PSA <10, neg scans for spread), who had CK, 146 have great PSA's, after being followed for 4-4.5 years. There was another patient whose PSA jumped and had all the doctors upset, but his numbers came back down at the next blood draw. Sadly, one patient has had a recurrence with lung involvement.
    As you can imagine, there has been no reading and no TV. Every night is dedicated to finding all the possible treatments. The vaccine, HF therapy; is Abiraterone better than Degarelix? or the opposite? We created a very sloppy spreadsheet of therapies and side effects and possible combinations. We have a huge notebook of printed stuff from the web, copies of his tests, insurance information. We have met with 4 specialists.
    After a review of this and the newest option, he/we are still happy with CK. Wish us luck. He will have feduciaries implanted this Thursday.
    Thanks for caring enough to post all this great information.
    Heather
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member

    Wonderful News
    After what seemed at the time as endless bad news, we found out yesterday that his PSA is now 5.7 which is lower than it was a year ago. And that puts my husband in the sweet spot for CK. We met again with the doctor yesterday and he told us that with Ed's lower numbers (contaminated earlier sample?), we could even do watchful waiting if we choose. He did not encourage or discourage, but wanted us to be aware that with this news, we had an other option. We had covered a lot of other options including combos on our last visit. God bless the people who could do ww. We could not.
    The doctor also told us of the 147 patients with Ed's profile (Gleason 7, PSA <10, neg scans for spread), who had CK, 146 have great PSA's, after being followed for 4-4.5 years. There was another patient whose PSA jumped and had all the doctors upset, but his numbers came back down at the next blood draw. Sadly, one patient has had a recurrence with lung involvement.
    As you can imagine, there has been no reading and no TV. Every night is dedicated to finding all the possible treatments. The vaccine, HF therapy; is Abiraterone better than Degarelix? or the opposite? We created a very sloppy spreadsheet of therapies and side effects and possible combinations. We have a huge notebook of printed stuff from the web, copies of his tests, insurance information. We have met with 4 specialists.
    After a review of this and the newest option, he/we are still happy with CK. Wish us luck. He will have feduciaries implanted this Thursday.
    Thanks for caring enough to post all this great information.
    Heather</p>

    some questions please
    Is your husbands gleason 7, or is it 8 as stated in your opening post?

    Did you have an independent expert second opinion by a pathologist of his biopsy?

    How old is your husband?

    Wishing him the best
  • mrspjd
    mrspjd Member Posts: 694 Member

    Wonderful News
    After what seemed at the time as endless bad news, we found out yesterday that his PSA is now 5.7 which is lower than it was a year ago. And that puts my husband in the sweet spot for CK. We met again with the doctor yesterday and he told us that with Ed's lower numbers (contaminated earlier sample?), we could even do watchful waiting if we choose. He did not encourage or discourage, but wanted us to be aware that with this news, we had an other option. We had covered a lot of other options including combos on our last visit. God bless the people who could do ww. We could not.
    The doctor also told us of the 147 patients with Ed's profile (Gleason 7, PSA <10, neg scans for spread), who had CK, 146 have great PSA's, after being followed for 4-4.5 years. There was another patient whose PSA jumped and had all the doctors upset, but his numbers came back down at the next blood draw. Sadly, one patient has had a recurrence with lung involvement.
    As you can imagine, there has been no reading and no TV. Every night is dedicated to finding all the possible treatments. The vaccine, HF therapy; is Abiraterone better than Degarelix? or the opposite? We created a very sloppy spreadsheet of therapies and side effects and possible combinations. We have a huge notebook of printed stuff from the web, copies of his tests, insurance information. We have met with 4 specialists.
    After a review of this and the newest option, he/we are still happy with CK. Wish us luck. He will have feduciaries implanted this Thursday.
    Thanks for caring enough to post all this great information.
    Heather</p>

    wonderful and fascinating
    I’m somewhat confused yet fascinated, Heather. Wondering if you and/or Ed might be open to clarifying the stats you previously posted and sharing add’l info. Not trying to second guess or be intrusive—just would like to understand and learn more. Like H & O, I also have some questions.

    You indicated in your post: “in his biopsy 11 or 12 showed cancer.” Is it possible you meant that 11 or 12 cores were TAKEN at biopsy...instead of 11 or 12 were positive? Do you know the %’s of cancer in the cores that were positive? Perhaps the Gleason 8 in your initial post was a typo and the Gleason is actually 7. If so, is it a 3+4=7 or a 4+3=7? The biopsy report should have this info.

    Did Ed’s urologist (or PCa oncologist) assign or specify a clinical tumor stage for the PCa, for example, T1, T2, or T3?

    Has Ed elected to be part of a clinical trial for CK as a mono therapy, or possibly with neo-adjuvant ADT/hormones and/or IMRT? Either way, perhaps you could describe Ed’s tx protocol.

    Thanks for your patience and for sharing. Your info will certainly be helpful to many others on the PCa forum.
  • VascodaGama
    VascodaGama Member Posts: 3,491 Member
    mrspjd said:

    wonderful and fascinating
    I’m somewhat confused yet fascinated, Heather. Wondering if you and/or Ed might be open to clarifying the stats you previously posted and sharing add’l info. Not trying to second guess or be intrusive—just would like to understand and learn more. Like H & O, I also have some questions.

    You indicated in your post: “in his biopsy 11 or 12 showed cancer.” Is it possible you meant that 11 or 12 cores were TAKEN at biopsy...instead of 11 or 12 were positive? Do you know the %’s of cancer in the cores that were positive? Perhaps the Gleason 8 in your initial post was a typo and the Gleason is actually 7. If so, is it a 3+4=7 or a 4+3=7? The biopsy report should have this info.

    Did Ed’s urologist (or PCa oncologist) assign or specify a clinical tumor stage for the PCa, for example, T1, T2, or T3?

    Has Ed elected to be part of a clinical trial for CK as a mono therapy, or possibly with neo-adjuvant ADT/hormones and/or IMRT? Either way, perhaps you could describe Ed’s tx protocol.

    Thanks for your patience and for sharing. Your info will certainly be helpful to many others on the PCa forum.

    Wonderful News indeed
    Heather

    I am glad to know that you have done researches and that you got a better diagnosis from the specialists on Ed’s status (Gs=7 & PSA=5.8). As you say this is a different “picture” and you can look forward for a successful outcome that fits your expectations.
    The 11 positive cores out of 12 is still a matter of concern but the “contained” status you got from the image studies and from the pathologist report (“contaminated earlier sample?”), positions Ed on the rates for a successful treatment. Let’s cross our fingers for negative recurrence.

    Abiraterone acetate and Degarelix acetate (tradename Firmagon) have different aims in the treatment and therefore are administered differently depending on the protocol. They are both good. Abiraterone is taken to attack intratumoral activity of the cancer and Degarelix is to lower the testosterone levels in the body to wicker the cancer by “starvation”.
    Most probably the doctor will choose degarelix because of its ability in shrinking the prostate size, which will make the area to radiate smaller. This can assure lesser probability to RT side effects.
    The hormonal portion of the treatment will also care for any micrometastases if existent, but HT got its side effects, which details you should read at the maker’s site.
    Just google the drug name.

    When diagnosed with cancer in 2000 my wife become my best partner in the researches. We had piles of printouts from the net and read several books. At the time there were no such reliable data (or norms) at disposal as in comparison with what we find today. We took a full course in “truant-medicine” in two month while deciding on the treatment.
    My wife gave me the impetuous to fight and the best comfort at that precarious time when I need it the most. You girls are exceptional.

    I wish the best in Ed’s journey.

    VGama
  • mrspjd
    mrspjd Member Posts: 694 Member

    Wonderful News indeed
    Heather

    I am glad to know that you have done researches and that you got a better diagnosis from the specialists on Ed’s status (Gs=7 & PSA=5.8). As you say this is a different “picture” and you can look forward for a successful outcome that fits your expectations.
    The 11 positive cores out of 12 is still a matter of concern but the “contained” status you got from the image studies and from the pathologist report (“contaminated earlier sample?”), positions Ed on the rates for a successful treatment. Let’s cross our fingers for negative recurrence.

    Abiraterone acetate and Degarelix acetate (tradename Firmagon) have different aims in the treatment and therefore are administered differently depending on the protocol. They are both good. Abiraterone is taken to attack intratumoral activity of the cancer and Degarelix is to lower the testosterone levels in the body to wicker the cancer by “starvation”.
    Most probably the doctor will choose degarelix because of its ability in shrinking the prostate size, which will make the area to radiate smaller. This can assure lesser probability to RT side effects.
    The hormonal portion of the treatment will also care for any micrometastases if existent, but HT got its side effects, which details you should read at the maker’s site.
    Just google the drug name.

    When diagnosed with cancer in 2000 my wife become my best partner in the researches. We had piles of printouts from the net and read several books. At the time there were no such reliable data (or norms) at disposal as in comparison with what we find today. We took a full course in “truant-medicine” in two month while deciding on the treatment.
    My wife gave me the impetuous to fight and the best comfort at that precarious time when I need it the most. You girls are exceptional.

    I wish the best in Ed’s journey.

    VGama

    There was an image study?
    I must have missed something...was there an image study that indicated the PCa was contained within the prostate, such as an MRI or E-MRI might show, in addition to the bone scan and CT (which were negative for distal mets)? According to Vasco's post: "...but the 'contained' status you got from the image studies and from the pathologist report..." A clarification would be appreciated. Perhaps I misunderstood. Thanks.

    PS: Heather & Ed: Hope all goes smoothly on Thursday and throughout the txs. Wishing you all the very best.
  • RRMansWife
    RRMansWife Member Posts: 9

    some questions please
    Is your husbands gleason 7, or is it 8 as stated in your opening post?

    Did you have an independent expert second opinion by a pathologist of his biopsy?

    How old is your husband?

    Wishing him the best

    some answers
    My husband is 69.
    Yes, during our first 2nd opinion, they had requested the slides. I can only assume they examined them after getting them.
    I thought he had an 8 Gleason, I'm not remembering where I got that. The last 2 Oncologists have said gleason of 7.
    Heather
  • RRMansWife
    RRMansWife Member Posts: 9
    mrspjd said:

    There was an image study?
    I must have missed something...was there an image study that indicated the PCa was contained within the prostate, such as an MRI or E-MRI might show, in addition to the bone scan and CT (which were negative for distal mets)? According to Vasco's post: "...but the 'contained' status you got from the image studies and from the pathologist report..." A clarification would be appreciated. Perhaps I misunderstood. Thanks.

    PS: Heather & Ed: Hope all goes smoothly on Thursday and throughout the txs. Wishing you all the very best.

    additional studies were performed.
    Right after diagnosis, Ed had the whole body bone scan and a CT abdomen pelvis with contrast. No MRI. mrspjd, now I am worried. I know that as part of the feducial placement he will have an MRI and another CT scan. We will be sure to ask the oncologist about what happens is something else is seen. Thanks!
  • RRMansWife
    RRMansWife Member Posts: 9
    mrspjd said:

    wonderful and fascinating
    I’m somewhat confused yet fascinated, Heather. Wondering if you and/or Ed might be open to clarifying the stats you previously posted and sharing add’l info. Not trying to second guess or be intrusive—just would like to understand and learn more. Like H & O, I also have some questions.

    You indicated in your post: “in his biopsy 11 or 12 showed cancer.” Is it possible you meant that 11 or 12 cores were TAKEN at biopsy...instead of 11 or 12 were positive? Do you know the %’s of cancer in the cores that were positive? Perhaps the Gleason 8 in your initial post was a typo and the Gleason is actually 7. If so, is it a 3+4=7 or a 4+3=7? The biopsy report should have this info.

    Did Ed’s urologist (or PCa oncologist) assign or specify a clinical tumor stage for the PCa, for example, T1, T2, or T3?

    Has Ed elected to be part of a clinical trial for CK as a mono therapy, or possibly with neo-adjuvant ADT/hormones and/or IMRT? Either way, perhaps you could describe Ed’s tx protocol.

    Thanks for your patience and for sharing. Your info will certainly be helpful to many others on the PCa forum.

    went back and reexamined the notes
    1. There were 12 cores taken. When he met with the urologist for the report, it was he who said, "11 of the 12 show cancer".
    2. on examining the pathology report I find
    1 Gleason of 8
    1 Gleason of 7
    4 Gleasons of 6
    There is no overall Gleason that I can find. I wonder if the urologist pointed out that there was a Gleason of 8 and we took it as an overall score? Since neither of us was expecting the diagnosis we got and were very upset, confusion could have been rampant.
    I do know that the doctor wanted to schedule surgery right away or start hormone therapy right away.

    3. The last two secondary opinions (from PCa oncologists) are that he is T2c. The urologist, I am remembering said T3. I have notes that we (PCa oncologist #2 and us) examined for Gleason 7 and T2c on the Partine tables before deciding on treatment.

    4. With oncologist #1, we did sign papers that we would be willing to be part of clinical trials. But now with CK, we have not signed any papers like that. Ed is more than willing to do so. I do know that his information will be added to the database anonymously just from the way the doctor discussed it with us.

    5. Currently, CK will be monotherapy. But as you pointed out, an MRI might show more.
    If it does, we will do whatever it takes to beat this thing.

    Thanks for bringing up all these points. We will talk to the oncologist before and after the MRI and CT scan on Thursday to see if there is any change in the dx.