New diagnosis - would like some input

jeneric82
jeneric82 Member Posts: 18
edited January 2018 in Prostate Cancer #1

Hi Gentlemen! 

I'm 51 and was just diagnosed last week 1/4/18. I feel I'm very fortunate to only have 3 of 12 with Gleason 6 (3+3). There are a couple other areas that were abnormal, but not cancerous. My stage is considered T1c and PSA just recently topped at 10.6. I'm keeping an optimistic attitude about it since it seems to be early and I'm usually a pretty positive guy anyway.

Saw the Radiation Oncologist today and now have to decide between 2 treaments...the external beam radiation therapy or brachytherapy (seed implantation). Normally I think I would automatically go with seeds due to a lot of the information I have read. However, there is a wrinkle. He did a DRE today and based on previous measurements and, what I felt were abnormally long-and-pointy fingers, he felt that my prostate was too large (roughly 60+) to be a candidate for the seeds until being treated for 6 to 9 months of hormone therapy. At that time, IF it reduced enough, we could proceed with the implantation. If not, then the external beam would be used anyway.

The input I'm looking for is......have any of you undergone the hormone therapy (Testosterone/androgen blocking)? If so, how bad were the side effects and did it work in reducing the prostate enough?  It's tempting to just go with the external beam at this point because I only have 8 weeks of treatments and possible side effects and can get started right away. The other scenario involves me going through different side effects for 6 to 9 months even before the brachytherapy. The advantage being that the hormone therapy can actual kill off a decent portion of cancer cells as I'm going through it.  It just seems that 12-15 months of treatment vs. 2 months of treatment is a bit daunting, considering I don't know if the outcomes show to be much better.

I am completely aware that ultimately it is only my decision, but I feel the collective wisdom here is immense and would like to factor it in to my decision process.

I am a father of two young boys (ages 12 and 8) and also wonder if the hormone therapy side effects (mood swings) might not be something I want to deal with. Haha

I deeply appreciate any input from those of you who are currently and have previously wrestled with this disease.

 

Thanks again! Eric

«1

Comments

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    edited January 2018 #2
    .

    Dear Eric,

    I am sorry for your diagnosis. 

    First, I wonder of the cores that were positive, what was the involvement, that is what percent of each core was positive?

    Can you share your PSA history with us?....10.6 is fairly high.

    Did the digital rectal exam reveal anything bumps or hard spots?

    Did you have any other diagnostic tests, ie, image, FREE PSA, etc?

    You may wish to have a second opinion of your biopsy pathology by a world class pathologist, since determining Gleason score is subject, and there is a difference among pathologist...Johns Hopkins is world class.....the pathology results is one of the critical diagnostic tests that your treatment is based on.

    Hormone therapy will reduce the size of the prostate; brachytherapy cannot be done on larger prostates.....there are various types of seeds that are used permanent or temporary. The life of permanent seeds can affect small children.

    With a high PSA there is a possibility that the cancer has escaped the prostate, so I strongly recommend that you obtain image tests.....I would start with a T3 MRI that may reveal if there is extracapsular extension......this test is very inportant before any treatment decision.

    There is a radiation treatment called SBRT that only takes 4 or 5 sessions within two weeks, depending on the particular radiation oncologist, with similar results to 40 sessions of external beam.Others at this forum have successfully completed SBRT.

    Here is information about SBRT.

    https://prostatecancerinfolink.net/2016/01/06/nine-year-outcomes-after-treatment-with-sbrt/

    Please feel free to ask questions. We are here for you.

     

  • jeneric82
    jeneric82 Member Posts: 18

    .

    Dear Eric,

    I am sorry for your diagnosis. 

    First, I wonder of the cores that were positive, what was the involvement, that is what percent of each core was positive?

    Can you share your PSA history with us?....10.6 is fairly high.

    Did the digital rectal exam reveal anything bumps or hard spots?

    Did you have any other diagnostic tests, ie, image, FREE PSA, etc?

    You may wish to have a second opinion of your biopsy pathology by a world class pathologist, since determining Gleason score is subject, and there is a difference among pathologist...Johns Hopkins is world class.....the pathology results is one of the critical diagnostic tests that your treatment is based on.

    Hormone therapy will reduce the size of the prostate; brachytherapy cannot be done on larger prostates.....there are various types of seeds that are used permanent or temporary. The life of permanent seeds can affect small children.

    With a high PSA there is a possibility that the cancer has escaped the prostate, so I strongly recommend that you obtain image tests.....I would start with a T3 MRI that may reveal if there is extracapsular extension......this test is very inportant before any treatment decision.

    There is a radiation treatment called SBRT that only takes 4 or 5 sessions within two weeks, depending on the particular radiation oncologist, with similar results to 40 sessions of external beam.Others at this forum have successfully completed SBRT.

    Here is information about SBRT.

    https://prostatecancerinfolink.net/2016/01/06/nine-year-outcomes-after-treatment-with-sbrt/

    Please feel free to ask questions. We are here for you.

     

    thanks for the info

    No problem sharing at all. I'm sorry I don't have exact results and dates at the moment. My PSA has been being evaluated for about 5 years now. It was trending slowly upwards in the 4 and 5 range. Then up to 6s and 7s. Then a year ago it went to 8, at which point we did a biopsy, which came back negative in all areas. A few months later, the PSA was still trending positive so we did an MRI. The MRI showed one tiny area that did not seem suspicious and they said could have been scar tissue related to the biopsy. Then in October of this past year my PSA went to the current 10.6 from the previous 8.7.  At that point we did a repeat MRI, which now showed 2 small lesions where there was one before. That led to this current biopsy which was done in December.

    All DRE's have been normal and unimpressive, except for being enlarged. Both my urologist and primary suspected BPH but wanted to keep a close eye on it. I was also asymptomatic throughout all of the PSA increases.

    The 3 core samples that came pack positive were 2%, 2%, and 5%.

    The oncologist kept telling me that I was a good candidate for a "Watch and Evaluate" treatment, but I honestly don't want to mess around at all with PC. I'm fairly young and healthy and feel I could tolerate treament much better at this point than later.  As I said, I think if it wasn't for needing the Hormone Therapy to reduce the size before getting the brachytherapy, I would be leaning towards that treatment much more.

    I asked him about the SBRT and he indicated that I could pursue that route through another provider, but he personally didn't feel there was enough long term stats and testing done to evaluate it fairly for results against the others. He said that many of those providers doing SBRT in this area are doing so as clinical trials. As a result, many insurance companies view it as "investigational" and may not cover it. I did not verify that with my provider though.

    Thanks for the support and information.  

  • RobLee
    RobLee Member Posts: 269 Member
    Only two choices?

    Many men here have undergone or are currently on HT and are enduring the side effects in a stoically manly manner.  But what I find curious about your post is that you are a very young man yet have limited your choices only to radiation.  Do you have some other medical condition that would cause you to not expect to live another thirty years or so?  Be sure to speak with several older gentlemen who have had pelvic radiation and ask them about their quality of life.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    jeneric82 said:

    thanks for the info

    No problem sharing at all. I'm sorry I don't have exact results and dates at the moment. My PSA has been being evaluated for about 5 years now. It was trending slowly upwards in the 4 and 5 range. Then up to 6s and 7s. Then a year ago it went to 8, at which point we did a biopsy, which came back negative in all areas. A few months later, the PSA was still trending positive so we did an MRI. The MRI showed one tiny area that did not seem suspicious and they said could have been scar tissue related to the biopsy. Then in October of this past year my PSA went to the current 10.6 from the previous 8.7.  At that point we did a repeat MRI, which now showed 2 small lesions where there was one before. That led to this current biopsy which was done in December.

    All DRE's have been normal and unimpressive, except for being enlarged. Both my urologist and primary suspected BPH but wanted to keep a close eye on it. I was also asymptomatic throughout all of the PSA increases.

    The 3 core samples that came pack positive were 2%, 2%, and 5%.

    The oncologist kept telling me that I was a good candidate for a "Watch and Evaluate" treatment, but I honestly don't want to mess around at all with PC. I'm fairly young and healthy and feel I could tolerate treament much better at this point than later.  As I said, I think if it wasn't for needing the Hormone Therapy to reduce the size before getting the brachytherapy, I would be leaning towards that treatment much more.

    I asked him about the SBRT and he indicated that I could pursue that route through another provider, but he personally didn't feel there was enough long term stats and testing done to evaluate it fairly for results against the others. He said that many of those providers doing SBRT in this area are doing so as clinical trials. As a result, many insurance companies view it as "investigational" and may not cover it. I did not verify that with my provider though.

    Thanks for the support and information.  

    Huh ?

    I doubt that seeding nor Active Survellance are sound choices for you, given what you know thus far (prior to imaging).

    You have reasonable evidence to suspect capsular escape, which would render IGRT delivery of radiation the most potentially curative response.  A PSA over 10 is objectively high, and your vector (doubling-rate) is significant.

    SBRT is not at all "new," I have never read of a patient here having been told what your doctor told you regarding that form of treatment (SBRT was in use world-wide by around 1997).  It is among the best choices if the disease is still in the gland, but using it for wider delivery (tissues surrounding the gland) is still pretty new and does not have much track record in those cases; when there is escape known, IGRT is almost always the treatment of choice  -- better than SBRT or surgery.  Clinical trials are now underway for long-term effectiveness of SBRT against disease in the prostate bed area.

    The ususal argument for SBRT over conformal radiation (IMRT, IGRT) is that it is "more convenient."  Five days of treatment verses 40.  I do not see myself how, over a lifetime, this is even meaningful or relevant. Many cancer treatments require being cut to pieces or chemotherapy over years....some chemo patients go into what is called ":maintenance," and teke chemo for life, often decades.  HT (hormonal treatments) agains PCa often last a lifetime.  But guys think reducing radiation time by a few weeks is meaningful ?  I do not get it.  Another argument is that SBRT is 'more precise' than IMRT.  But that is a straw man fallacy, because what they are really comparing is SBRT to older IMRT machines, not the newest IGRT machines, which in effect have achieved parity with SBRT; the parameters now virtually match.  I know this may sound like hair-splitting. The best a man can do is go to a premier treatment facility and get several opinions from the best doctors.

    The director of Radiation Oncology at my teaching hospital told me that he preferred IGRT over SBRT all the time, for technical reasons, but not because it is 'Investigational,' because it isn't.  Our hospital does, and did then, have the newest SBRT machine available, so it was not an issue of him not having bought the device.  But his concerns were not over its 'newness.'  Sadly, insurance carriers are sometimes who defines 'investigational.'

    max

  • jeneric82
    jeneric82 Member Posts: 18

    Huh ?

    I doubt that seeding nor Active Survellance are sound choices for you, given what you know thus far (prior to imaging).

    You have reasonable evidence to suspect capsular escape, which would render IGRT delivery of radiation the most potentially curative response.  A PSA over 10 is objectively high, and your vector (doubling-rate) is significant.

    SBRT is not at all "new," I have never read of a patient here having been told what your doctor told you regarding that form of treatment (SBRT was in use world-wide by around 1997).  It is among the best choices if the disease is still in the gland, but using it for wider delivery (tissues surrounding the gland) is still pretty new and does not have much track record in those cases; when there is escape known, IGRT is almost always the treatment of choice  -- better than SBRT or surgery.  Clinical trials are now underway for long-term effectiveness of SBRT against disease in the prostate bed area.

    The ususal argument for SBRT over conformal radiation (IMRT, IGRT) is that it is "more convenient."  Five days of treatment verses 40.  I do not see myself how, over a lifetime, this is even meaningful or relevant. Many cancer treatments require being cut to pieces or chemotherapy over years....some chemo patients go into what is called ":maintenance," and teke chemo for life, often decades.  HT (hormonal treatments) agains PCa often last a lifetime.  But guys think reducing radiation time by a few weeks is meaningful ?  I do not get it.  Another argument is that SBRT is 'more precise' than IMRT.  But that is a straw man fallacy, because what they are really comparing is SBRT to older IMRT machines, not the newest IGRT machines, which in effect have achieved parity with SBRT; the parameters now virtually match.  I know this may sound like hair-splitting. The best a man can do is go to a premier treatment facility and get several opinions from the best doctors.

    The director of Radiation Oncology at my teaching hospital told me that he preferred IGRT over SBRT all the time, for technical reasons, but not because it is 'Investigational,' because it isn't.  Our hospital does, and did then, have the newest SBRT machine available, so it was not an issue of him not having bought the device.  But his concerns were not over its 'newness.'  Sadly, insurance carriers are sometimes who defines 'investigational.'

    max

    2nd opinion

    Sounds like I may have to get a second opinion anyway. Regarding the SBRT, in the fog of the nervousness I had in our appointment, I may have misinterpreted what he said slightly. I asked my wife, who was with me, and she did say that he said it was considered non-standard and insurance may not pay for it, so I think you are completely correct when you said that sadly insurance carriers incorrectly label things investigational. I have run into that before and had a knock down-drag out fight with Blue Cross over it. I won, by the way. lol   He did say that it is in clinical trials and that I would probably not qualify due to my younger age.  

    Both my uro and now oncologist are both reasonably assured that everything is still contained based on imaging and the low risk scores, with the exception of the PSA, which is admittedly low end of intermediate risk. 

    I was considering a second opinion anyway, but after hearing from you as well as Hopeful and Optimistic I am even more resolved to do so.

  • jeneric82
    jeneric82 Member Posts: 18
    RobLee said:

    Only two choices?

    Many men here have undergone or are currently on HT and are enduring the side effects in a stoically manly manner.  But what I find curious about your post is that you are a very young man yet have limited your choices only to radiation.  Do you have some other medical condition that would cause you to not expect to live another thirty years or so?  Be sure to speak with several older gentlemen who have had pelvic radiation and ask them about their quality of life.

    limited choices

    I have no other health problems except for  mild hypothyroidism and some lower back issues from my construction days.  The only options given to me by my onco and uro were the Active Observation, surgery, or radiation. The Active Observation was just really something I wasn't comfortable with. I guess I am too worried about it spreading and then having options taken away. I felt that I had been doing active observation for the past 4 or 5 years as my PSA was climbing but all other tests were negative until the last biopsy.  As far as surgery goes, both of my doctors felt I was not as good of a fit due to my age and possible side effects.

    I would love to hear from any older gentlemen who have had the pelvic radiation. I am the type of person who wants to have any and all information that I can before making a decision. That's why I immediately joined this forum. No better wisdom than from those who are living with it or have lived through it. I would have no idea where to go for this info if groups like this didn't exist.

  • ASAdvocate
    ASAdvocate Member Posts: 193 Member

    Another type of radiation treatment for prostate cancer is high dose radiation brachytherapy (HDRBT). It does not use seeds. Typically one setup and two radiation sessions. It has been performed for over 20 years, and has impressive results. Add that to your research list.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    jeneric82 said:

    2nd opinion

    Sounds like I may have to get a second opinion anyway. Regarding the SBRT, in the fog of the nervousness I had in our appointment, I may have misinterpreted what he said slightly. I asked my wife, who was with me, and she did say that he said it was considered non-standard and insurance may not pay for it, so I think you are completely correct when you said that sadly insurance carriers incorrectly label things investigational. I have run into that before and had a knock down-drag out fight with Blue Cross over it. I won, by the way. lol   He did say that it is in clinical trials and that I would probably not qualify due to my younger age.  

    Both my uro and now oncologist are both reasonably assured that everything is still contained based on imaging and the low risk scores, with the exception of the PSA, which is admittedly low end of intermediate risk. 

    I was considering a second opinion anyway, but after hearing from you as well as Hopeful and Optimistic I am even more resolved to do so.

    Always

    Something as serious as any cancer demands a second opinion, preferably at a different hospital from where you were initially seen.  Coworkers have some tendency to just sign off on what the other guy said, out of deference.  I am not saying they lack integrity, but it is a reasonable concern.

    I suspect that your doctor meant that SBRT is investigational for extracapsular escape, not for a simple case of PCa still contained in the gland. That is the only way to make his comment make sense, but speculation on my part.   See one more R.O., and a surgeon for thoroughness, so that you will have had all options presented to you.    My choice was surgery because of my particulars, but I do not ever 'recommend' anything to anyone.

    In your first post you asked about Hormonal Therapy. That is reserved for metastatic disease, and is not a first-line response to minor cases.  Some cancer treatements are for "curative-effect," meaning they will eradicate all of the disease, hopefully for life.  Others are for "pallative effect," meaning that they control the disease and its symptoms, often for long periods.  Against PCa, surgery and radiation are the only treatments that are potentially curative.  Hormonal and chemo are never curative of PCa, but can extend life, sometimes even for decades.  (To avoid confusion, I will add that chemo IS curative of some other types of cancer, like Lymphoma and leukemia, but not against PCa.)

    You are off to a good start toward making a smart and well-informed set of choices here,

    max

  • jeneric82
    jeneric82 Member Posts: 18

    Always

    Something as serious as any cancer demands a second opinion, preferably at a different hospital from where you were initially seen.  Coworkers have some tendency to just sign off on what the other guy said, out of deference.  I am not saying they lack integrity, but it is a reasonable concern.

    I suspect that your doctor meant that SBRT is investigational for extracapsular escape, not for a simple case of PCa still contained in the gland. That is the only way to make his comment make sense, but speculation on my part.   See one more R.O., and a surgeon for thoroughness, so that you will have had all options presented to you.    My choice was surgery because of my particulars, but I do not ever 'recommend' anything to anyone.

    In your first post you asked about Hormonal Therapy. That is reserved for metastatic disease, and is not a first-line response to minor cases.  Some cancer treatements are for "curative-effect," meaning they will eradicate all of the disease, hopefully for life.  Others are for "pallative effect," meaning that they control the disease and its symptoms, often for long periods.  Against PCa, surgery and radiation are the only treatments that are potentially curative.  Hormonal and chemo are never curative of PCa, but can extend life, sometimes even for decades.  (To avoid confusion, I will add that chemo IS curative of some other types of cancer, like Lymphoma and leukemia, but not against PCa.)

    You are off to a good start toward making a smart and well-informed set of choices here,

    max

    thank you

    Thank you for the info.  The Hormone Therapy was only recommended to shrink the prostate down enough to do the brachytherapy. Right now it is too large  to properly place the material due to it's overlap of pelvic bone. When I asked him about my concerns of waiting 6 to 9 months for treatment of the PCa while the HT worked, he told me that it "helped" in that it killed a decent portion of the cancer cells during the therapy so he didn't expect any progression of the disease during that time before brachy.

    It's hard for me to fight the urge to just "hurry up and do something". I know I have to take my time to make an informed decision, but there is so much information out there it's easy to get analysis paralysis.    Thank you again

  • Tech70
    Tech70 Member Posts: 70 Member
    edited January 2018 #11
    Most importantly

    Given the low level of cancer in your biopsy cores and the low Gleason score, the best advice I can give is DON'T RUSH INTO ANYTHING.  Your condition isn't going to kill you in the next three months.  Take your time to research everything and persue other opinions.  You may want to have Oncotype DX genomic testing done on the positive sample to get an idea of how aggressive the cancer is.  Three positive cores is borderline for Active Surveillance, but one big advantage of AS is that new technologies are being developed daily to treat PCa.  With a really encouraging GPS on the Oncotype DX testing, it might be worth doing AS for a couple of years. 

     

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    edited January 2018 #12
    .

    Dear Eric,

    If one qualifies, Active Surveillance is always the best choice since there are no side effects, and a young man such as you can have a better quality of life for a longer time....you have many years in front of you. However, the PSA of 10.6 is unexplained, so you may not be a candidate.

    You mention that you have had two MRI's. You did not mention if this multiparametric MRI used a 3.0 magnet which provides the best definition in clinical use, or was it a 1.5? The 3.0 is prefarable to best know what is happening.

    There is also another image test; a PET scan that is advisable. There are different types of PET scans in existance, someof the better ones are considered investigational and are not covered by insurance, unless in a clinical trial. Others are covered by medical insurance.

    https://www.google.com/search?authuser=0&source=hp&ei=SO9UWur6Kc3mjwPxlZaACA&q=prostate+pet+scan&oq=prostate+pet&gs_l=psy-ab.1.0.0l3j0i22i30k1j0i22i10i30k1j0i22i30k1l5.1432.20000.0.24701.43.29.13.0.0.0.191.2942.14j14.29.0..2..0...1.1.64.psy-ab..1.42.3129.6..46j35i39k1j0i131k1j0i20i264k1j0i46k1j0i10k1j0i131i20i264k1j33i160k1j33i21k1.100.FpQG4sIk5jQ

    Here is one that is very good that will cost about 3K. He is in 

    http://paact.help/update-c11-acetate-petct-imaging-for-prostate-cancer-fabio-almeida-md-2012/

    Probably the best one now is 68ga-psma pet scan.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5407340/

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

    Also note, that the PSA can be affected by many things; sex before the test, riding a bike before the test, even a hard stool.....Also infection can increase the PSA. In your case , a large prostate places pressure on the urethea and secrets more.

     

  • Clevelandguy
    Clevelandguy Member Posts: 969 Member
    edited January 2018 #13
    Get the info

    Hi,

    Yeah, get all the info you can on the various treaments plus early & late side effects.  Do your homework which will lead you down the correct path.  If you want to do some form of radiation treatment several people on this board have done Cyberknife with good results.  Most radiation treatments are a slow cancer death kind of thing which may take a few years to determine if you have a cure based on psa readings.  Proton radiation offers the benefit that the beam is focused on the tumor and does not go completly through your body(tissue damage on the way in but none past the tumor).  Might be something to look into.

    Dave 3+4

  • jeneric82
    jeneric82 Member Posts: 18
    edited January 2018 #14

    .

    Dear Eric,

    If one qualifies, Active Surveillance is always the best choice since there are no side effects, and a young man such as you can have a better quality of life for a longer time....you have many years in front of you. However, the PSA of 10.6 is unexplained, so you may not be a candidate.

    You mention that you have had two MRI's. You did not mention if this multiparametric MRI used a 3.0 magnet which provides the best definition in clinical use, or was it a 1.5? The 3.0 is prefarable to best know what is happening.

    There is also another image test; a PET scan that is advisable. There are different types of PET scans in existance, someof the better ones are considered investigational and are not covered by insurance, unless in a clinical trial. Others are covered by medical insurance.

    https://www.google.com/search?authuser=0&source=hp&ei=SO9UWur6Kc3mjwPxlZaACA&q=prostate+pet+scan&oq=prostate+pet&gs_l=psy-ab.1.0.0l3j0i22i30k1j0i22i10i30k1j0i22i30k1l5.1432.20000.0.24701.43.29.13.0.0.0.191.2942.14j14.29.0..2..0...1.1.64.psy-ab..1.42.3129.6..46j35i39k1j0i131k1j0i20i264k1j0i46k1j0i10k1j0i131i20i264k1j33i160k1j33i21k1.100.FpQG4sIk5jQ

    Here is one that is very good that will cost about 3K. He is in 

    http://paact.help/update-c11-acetate-petct-imaging-for-prostate-cancer-fabio-almeida-md-2012/

    Probably the best one now is 68ga-psma pet scan.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5407340/

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

    Also note, that the PSA can be affected by many things; sex before the test, riding a bike before the test, even a hard stool.....Also infection can increase the PSA. In your case , a large prostate places pressure on the urethea and secrets more.

     

    good question

    Excellent question regarding the MRI. I'm going to have to try to find that out. Both my primary and my urologist have felt that I had BPH for a few years, which is what was causing my PSA rise. What triggered them to do the 2nd MRI and subsequent biopsy was the PSA jump from around 8.4 to 10.6. Previously it had been a slow progression.

  • RobLee
    RobLee Member Posts: 269 Member
    edited January 2018 #15
    Still curious why surgery is being dismissed

    You said you are not a candidate for surgery due to your age. I thought you said you are 51. Typically the cutoff for surgery is 70, and sometimes even higher for healthy men. Given your relatively low PSA (~10) small number of positive cores (3?) and Gleason score 6, I find it very curious that you are still only considering radiation. I've had surgery, radiation and hormone therapy and the only thing I would have done differently would be to have changed urologists two years earlier, when my numbers might have still been as low as yours... and then the HT and radiation would have been totally unnecessary. Don't dismiss surgery until you have at least investigated it as a possibility. Given your favorable stats you'd likely be home in a day and fully continent in a month. Or is there something beyond your youth and excellent health that I may have overlooked?

     

  • jeneric82
    jeneric82 Member Posts: 18
    RobLee said:

    Still curious why surgery is being dismissed

    You said you are not a candidate for surgery due to your age. I thought you said you are 51. Typically the cutoff for surgery is 70, and sometimes even higher for healthy men. Given your relatively low PSA (~10) small number of positive cores (3?) and Gleason score 6, I find it very curious that you are still only considering radiation. I've had surgery, radiation and hormone therapy and the only thing I would have done differently would be to have changed urologists two years earlier, when my numbers might have still been as low as yours... and then the HT and radiation would have been totally unnecessary. Don't dismiss surgery until you have at least investigated it as a possibility. Given your favorable stats you'd likely be home in a day and fully continent in a month. Or is there something beyond your youth and excellent health that I may have overlooked?

     

    honesty

    I'm assuming that the surgery is the prostatectomy?  To be completely candid, I had more fears of the possible side effects of the surgery. I think my issue is that most of the articles I read seemed to focus on the negative long term side effects of the surgery , especially the incontinence and ED.  My uro and oncologist both presented surgery as an option, but that it was probably the more radical of the approaches for me at this time and due to my fears I didn't push back on that. I will say it would probably be cheaper.  My father (not biological) had surgical removal and told me that he would have done radiation if he would have had the option and could do it over again. He has suffered from some of the side effects long term. 

    After hearing from you though, I will try to go back and look at some more information on surgery and try to keep an unbiased view.  Thank you for your input.

     

  • Clevelandguy
    Clevelandguy Member Posts: 969 Member
    Each option has risks

    Hi,

    Do your research and find the treatment that is best for you.  Both surgery & radiation have side effects don't let anyone kid you. I had surgery a little over 3 years ago, ED is all gone and still have just a little stress incontinence for which I wear a light pad, probably will for the rest of my life.  Radiation can have late developing side effects also like scar tissue and sometime a higher than normal chance of getting a secondary cancer where the radiation hit.  Know what you are getting into, it's your choice.  You have the time to think it over, people on this board will help you out.

    Like Red Green always said,  Remember, I'm pulling for you. We're all in this together

    Dave 3+4

     

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    surgery

    Dear Eric,

    You are right, surgery can have the greatest side effects versus any other treatment.

    Additionally, surgery is a localized treatment only, and if the   cancer is outside the prostate, one will still need another treatment, ie radiation, etc., and the side effects of each treatment are cummulative. Additional treatment after surgery happens fairly frequently.

    With radiation the perimeter of the treatment can be extended outside the prostate, so intermeediate prostate cancer can more readily be treated.

     

  • jeneric82
    jeneric82 Member Posts: 18

    Each option has risks

    Hi,

    Do your research and find the treatment that is best for you.  Both surgery & radiation have side effects don't let anyone kid you. I had surgery a little over 3 years ago, ED is all gone and still have just a little stress incontinence for which I wear a light pad, probably will for the rest of my life.  Radiation can have late developing side effects also like scar tissue and sometime a higher than normal chance of getting a secondary cancer where the radiation hit.  Know what you are getting into, it's your choice.  You have the time to think it over, people on this board will help you out.

    Like Red Green always said,  Remember, I'm pulling for you. We're all in this together

    Dave 3+4

     

    thank you

    Thank you, I appreciate it.  When I first came home from the oncologist yesterday, I immediately thought of a dozen questions that I forgot to ask him. I emailed him and he responded immediately, but I still felt uneasy without talking to some people who had actually gone through or are currently going through this. Thanks to Google, I came across this site and saw how supportive and kind everyone seemed to be and had to join. 

    Again, I appreciate your....and everyone's input.   Eric

  • Grinder
    Grinder Member Posts: 487 Member
    More specific

    To be more specific, did your father have robotic surgery or open surgery? How many, if any nerve bundles were spared?

    It is not enough to just scare you with "greatest side effects" without a proper explanation.

    The most typical side effect that happens 100% of the time with surgery is a section of the urethra is also taken out, and the business tool (penis) is retracted to make up the difference, usually 1 to 2 inches. So if you cannot afford to lose an inch or so of length, be forewarned. I don't mean to be crude, but honest... If your tool is plenty long, you are fine, but for some guys who didn't have much to begin with, this is a terrible revelation that urologists never seen to mention, as you will find if you read farther back in the archives of this forum, it can be a traumatic discovery.

    Then there is incontinence, but if you have successful nerve sparing surgery, you will see improvement in 3 to 6 months, and full or nearly full recovery in a year or so.

    Then there is the ED, and similarly, if you had successful nerve sparing surgery, you will see a full recovery in a year or so... But you may have to use a vacuum pump, cialis, or other treatment to " prime the pump" to get blood circulating into your business tool.

    But sometimes incontinence and/or ED can be permanent. Causes likely are nerve bundles were damaged for whatever reason or could not be spared, or the surgeon was not a well experienced surgeon, as it takes a surgeon a LOT of experience with robotic surgery to perform it at optimum competence.

    I had the DaVinci surgery and it was wildly successful, but I am not afraid to lay out the possibilities up front, no matter how remote the chances are... And I  don't want you to make any decision without being fully informed. 

    Also, you shouldn't need to shrink the prostate with HT if you get surgery or Cyberknife, as 60 (cc?) is hardly that large, so that is an advantage. Someone please correct me if I am wrong about that.

  • jeneric82
    jeneric82 Member Posts: 18
    edited January 2018 #21
    Grinder said:

    More specific

    To be more specific, did your father have robotic surgery or open surgery? How many, if any nerve bundles were spared?

    It is not enough to just scare you with "greatest side effects" without a proper explanation.

    The most typical side effect that happens 100% of the time with surgery is a section of the urethra is also taken out, and the business tool (penis) is retracted to make up the difference, usually 1 to 2 inches. So if you cannot afford to lose an inch or so of length, be forewarned. I don't mean to be crude, but honest... If your tool is plenty long, you are fine, but for some guys who didn't have much to begin with, this is a terrible revelation that urologists never seen to mention, as you will find if you read farther back in the archives of this forum, it can be a traumatic discovery.

    Then there is incontinence, but if you have successful nerve sparing surgery, you will see improvement in 3 to 6 months, and full or nearly full recovery in a year or so.

    Then there is the ED, and similarly, if you had successful nerve sparing surgery, you will see a full recovery in a year or so... But you may have to use a vacuum pump, cialis, or other treatment to " prime the pump" to get blood circulating into your business tool.

    But sometimes incontinence and/or ED can be permanent. Causes likely are nerve bundles were damaged for whatever reason or could not be spared, or the surgeon was not a well experienced surgeon, as it takes a surgeon a LOT of experience with robotic surgery to perform it at optimum competence.

    I had the DaVinci surgery and it was wildly successful, but I am not afraid to lay out the possibilities up front, no matter how remote the chances are... And I  don't want you to make any decision without being fully informed. 

    Also, you shouldn't need to shrink the prostate with HT if you get surgery or Cyberknife, as 60 (cc?) is hardly that large, so that is an advantage. Someone please correct me if I am wrong about that.

    thank you for the reply

    Thank you. I'm fairly certain my father had the open surgery. I think that some of his side effects have subsided, but to be honest, since I received my diagnosis I have not yet asked him about the intimate details. I plan to now that I have a vested interest in the knowledge.

    As far as the CyberKnife, I assume that this is the same as the SBRT, which I am needing to get a second opinion on. My oncologist did not seem to like it nor think I was a good candidate, but I'm not sure I asked all the proper questions at the time to determine why. I thought I was very well prepared when I went in, but the amount of info coupled with the haze of anxiety proved me wrong. lol

    I'm planning on biting the bullet and paying for a second opinion at a local cancer center, Banner MD Anderson this week. We are on a high deductible plan so all of my medical costs are coming out of pocket for the first couple months (up to 1500), but I have a feeling that won't be a problem for very long with any treatment I choose.

    Thanks Grinder