Looking for Proton Beam treatment feedback from someone that had intermediate to high risk PC
I am new to the forum so please forgive if I should be asking this question another way.
I am 74; healthy otherwise; exercise on regular basis. No family history; somebody has to be first I suppose. Non smoker. I am in the DFW Texas area.
My last PSA was 7.9 June 2015; started up in 2012. Finally had biopsy 10/26/15 and had two 9's(4+5); two 6's(3+3); urologist said i was a T1c in his opinion; Had bone scan and CT and they say it is still in capsule; thankfully
Have talked to four radiation oncologist and all are suggesting radiation(IMRT) + harmone theropy; two are adding brachotherapy with lesser radiation.
Personally prefer to not do surgery and want unless they tell me it is my only shot;
We now have the new Texas Center for Proton Therapy here in Irving. Only opened up for business few months back but appears to me they have some highly qualified doctors heading up the program.
Thanks for any feedback.
Jim
Comments
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Jim
Welcome to the board.
I think you doing well by researching to educate about PCa treatments before deciding. Proton Beam Treatment (PBT) is not new and you can avail of data on its use and the outcomes of 5 years cases. The numbers in percentage of biochemical free outcomes are similar to those outcomes of the traditional IMRT (photons RT), but PBT wins in regards to a lesser extent of collateral damage (lesser side effects). PBT equipment delivers protons in two shapes (larger beam and pencil beam) which permits reaching efficiently better those delicate areas (close to other organs) hard to radiate. The big difference between photons and protons is that the former will cross all tissues in its path, whether the protons stop at the areas projected to be radiated (Bragg Peak). Here is an article explaining well about these RT types;
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4080851/
In any case, the choice of a treatment for prostate cancer should be based on proper diagnosis. This is to say that all data retrieved to define a clinical stage of a patient should be the best available. In your case, in particular, with a Gleason score 9 (high risk for metastases) the typical CT and Bone scan may not be proper and I wonder your doctors convicted assertion that cancer “…it is still in capsule”. These image exams typically miss detecting the cancer and most of the times provide false negatives which results would influence drastically the protocol and the best choice of a treatment.
In other words, Proton is best in contained cases making it possible to radiate the whole gland as a single tumour. When the cancer is found in outer close areas of the gland, IMRT may become a better option. The decision is better done if one has in hands a reliable image exam. To this extent, I would recommend you to investigate about PET/CT exams with choline contrast agents (C11 or 18FCH) or in similar parametric techniques known to provide better and more reliable results in regards to cancer location. Remember that RT is delivered to targets assuming that the whole cancer is there; otherwise it would be throwing arrows in the dark, with no assurances of hitting the “targets”.
In your description you mention about combined therapies. Radiation treatments administered with a hormonal (HT) protocol neoadjuvant plus adjuvant, are known to improve the RT outcomes. Typically patients receive a HT dose two to three months prior to RT. In regards to the Brackytherapy, this can also make part of the prime treatment being applied together with a protocol of IMRT. This is a choice when one has identified extra prostatic extensions. Do things timely and coordinately.
All treatments are good but they all have risks and cause side effects which you should know in detail. Proper nutrition and a change in life style may be required along your journey.
Best wishes and luck.
VGama
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Agree
Jim,
As I was reading your post, I had already had many of the thoughts that Vasco expressed in his reply, although I lack his extensive knowledge in imaging and many other areas.
The difference between a 3+3 pathology report and a 4+5 is huge. Most pathology reports, when compared to a pathology analysis of a gland removed with prostectomy, if they differ at all, show the disease to actually be WORSE than the biopsy suggested. IF the 4+5 is correct, then the notion that there is no escape from the capsule is not a doctor's "belief" that I would want to depend on.
The IMRT-plus-HT route is what I would choose, or possibly IMRT alone, but I tend to be very cautious in my decisions. Seeding is best suited to minor cases with no escape, and only in cases where the prostate is not significantly enlarged from any cause, whether cancer or BPH. I had prostectomy earlier this year at the age of 58. I absolutely would not suggest prostectomy to a 74 year old, especially with any reasonable suspicion of the disease having escaped the capsule.
Dr. Peter Scardino's Prostate Book , by Dr. Peter Scardino, Director of Surgery at Sloan-Kettering Cancer Center, writes that,
The safety and efficacy of proton beam therapy has been demonstrated for many childhood cancers and for brain tumors, but its value for other adult tumors is highly controversial. Extravigant claims have been made that the therapy can boast a 100 percent success rate without complications or side effects, but there are no credible studies and no long-term data to suppor this. (footnote 11) Experts question whether proton beam therapy offers any advantage over modern high-dose IMRT for treating prostate cancer.
Quotation from page 336; Footnote 11 is to an article in Journal of Urology , 166, no. 3 in 2001, pp. 876-81. The Prostate Book itself is from 2010, by Avery Press. It is a routine-stock item at Barnes and Noble.
My two cents, which is worth about one cent, in today's economy,
max
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All good responses
I wonder, in your biopsy what the involvement, percent that were cancerous, of the cores that were 9. If very small, this may have been the GUESSES that these radiation oncologist have made. Without advanced imaging such as the PET Scan mentioned above or an multiparmetric MRI T3 one will not know how extensive the cancer is.
As mentioned radiation such as IMRT or SBRT is very precise, and can target a wider area than the prostate itself, so you can have a better chance of cure than surgery (which is very invasive). It is not recommended that older men receive surgery since the side effects of this procedure are age related.
Studies do not show proton therapy to be more effective than IMRT, and I think SBRT as well. Proton therapy is simply more expensive and many insurances do not cover this procedure. Please note that the newer centers for proton therapy produce better results than the older centers, so you may wish to consult with the center near you.
I strongly recommend that you consult with a medical oncologist, the very very best that you can find and afford to lead your medical team. These docs are best qualified to administer hormone therapy.
I don't know the specific doc at MD Anderson, but if you can , this is the place for you. The hospital is nationally ranked, is a center of excellence and the best of the best.
Also suggest that you attend a local support group; these are generally knowledge based. USTOO lists support groups that they sponsor by area.
Read , reseach internet, keep on asking questions, we are here for you.
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Looking for Proton Beam treatment feedback from someone that hadVascodaGama said:Jim
Welcome to the board.
I think you doing well by researching to educate about PCa treatments before deciding. Proton Beam Treatment (PBT) is not new and you can avail of data on its use and the outcomes of 5 years cases. The numbers in percentage of biochemical free outcomes are similar to those outcomes of the traditional IMRT (photons RT), but PBT wins in regards to a lesser extent of collateral damage (lesser side effects). PBT equipment delivers protons in two shapes (larger beam and pencil beam) which permits reaching efficiently better those delicate areas (close to other organs) hard to radiate. The big difference between photons and protons is that the former will cross all tissues in its path, whether the protons stop at the areas projected to be radiated (Bragg Peak). Here is an article explaining well about these RT types;
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4080851/
In any case, the choice of a treatment for prostate cancer should be based on proper diagnosis. This is to say that all data retrieved to define a clinical stage of a patient should be the best available. In your case, in particular, with a Gleason score 9 (high risk for metastases) the typical CT and Bone scan may not be proper and I wonder your doctors convicted assertion that cancer “…it is still in capsule”. These image exams typically miss detecting the cancer and most of the times provide false negatives which results would influence drastically the protocol and the best choice of a treatment.
In other words, Proton is best in contained cases making it possible to radiate the whole gland as a single tumour. When the cancer is found in outer close areas of the gland, IMRT may become a better option. The decision is better done if one has in hands a reliable image exam. To this extent, I would recommend you to investigate about PET/CT exams with choline contrast agents (C11 or 18FCH) or in similar parametric techniques known to provide better and more reliable results in regards to cancer location. Remember that RT is delivered to targets assuming that the whole cancer is there; otherwise it would be throwing arrows in the dark, with no assurances of hitting the “targets”.
In your description you mention about combined therapies. Radiation treatments administered with a hormonal (HT) protocol neoadjuvant plus adjuvant, are known to improve the RT outcomes. Typically patients receive a HT dose two to three months prior to RT. In regards to the Brackytherapy, this can also make part of the prime treatment being applied together with a protocol of IMRT. This is a choice when one has identified extra prostatic extensions. Do things timely and coordinately.
All treatments are good but they all have risks and cause side effects which you should know in detail. Proper nutrition and a change in life style may be required along your journey.
Best wishes and luck.
VGama
Thank you Mr. VGama for such excellent feedback. I wished I had got back to the forum yesterday. I will be watching this forum more carefully henceforth! I am really up to decision time but still have not totally committed.
I have just read your response but not yet read through the others below; but i am working on it now. Got lot to review. I will be responding again.
The radiologist are waiting for me to get back with an answer as to which way i am going to go. I know I am in high danger zone and got to make a decision soon. the amount of information is overwhelming as you and other likely know from past experience.
Right now I am between the proton beam + ADT starting soon which would be with the Texas Center for proton therapy(they have pencil beam I think) and UT SW medical using IMRT + ADT. Both just seem to be great faciities, but, UTSW does not yet have the PBT; but, he seemed quite comfortable with his proposed treatment using IMRT and ADT. The ADT bothers me but seems with my risk level that all are recommending that as a necessity if I am going to beat it.
I am at a real loss to decide but your point about further varification that it is in fact still inside the capsule seems well taken. I too wandered just how accurate the standard bone and CT scan previously done really are.. I am also wandering about further test to ascertain if it is in fact still in the capsule. I had asked the radiologist at UTSW about the parametric MRI (DCE-MRI) and he said in all cases they like to do that to asertain where the cancer is located. the doc i talked to at Texs Center for proton therapy did not seem to see the need for it as much? That concerns me a bit; particularly based on your comments. I do not know where around here i can get the C11 Pet/ct scan but will be asking questions.
Also, I appreciate the link to the Urology article regarding Proton Beam Therapy vs the IMRT. i did not understand much of it but the conclusions I did understand and they were most interesting.
Again thanks. I will be reviewing your comments carefully before I make a decision.
Jim
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PBT?
As mentioned above, the difference between a Gleason 6 and 9 is HUGE and there's NO WAY you'd be Staged at T1c with a Gleason 9.
Not sure how you can end up w 2 9's and 2 6's from a single biopsy. Something doesn't add up. In any event, you should get a 2nd opinion to see if it matches with the 1st opinion.
John's Hopkins offered an excellent 2nd Opinion service that I and others have used. Dr. Jonathan Epstein there is a renowned expert in the field and you should ask for him to do the reassesment. No guarantee that he will but I asked and he did mine.
That said, I don't think any PBT center would treat a patient w/more than a Gleason 7. However, since there's a center opening in your area, why don't you just go there for an evaluation to find out what they say about your eligibility for treatment and, if you're eligible, the likely outcomes. That should be free or at a minimal cost.
The best book on the topic of PBT was written by Robert J. Marckini which is entitled: "You Can Beat Prostate Cancer and You Don't Need Surgery To Do It" (2006). It is a personal accound of Marckini's experience w/prostate cancer and his treatment w/PBT at the Loma Linda Medical Center in SoCal. Marckini goes over his decision making process including a discussion of the other available treatment methods available at the time.
I got a FREE copy of this book from Loma Linda when I contacted them to find out more about their services in 2010. Wouldn't hurt to try to get a free copy of it from them again now. Loma Linda also offers a DVD that they produced to prospective PBT patients, which is entitled "James M. Slater, MD: Proton Treatment & Research Center."
While PBT was state-of-the-art 10 years ago, it has been superceded by CyberKnife (CK) and other SBRT (stereotactic body radiation therapy) methodolgies. One problem w/PBT is that there are very few sites available for treatment because they actually have to build (or already have available) a cyclotron to generate protons beams in order to get up and running. The other problem is that you have to have a water balloon inserted in your anus (to protect your rectum) before each treatment and you have to be fitted for a body cast so that you remain perfectly still during the 40 treatments (5 day/wk for 8 weeks). Also, at the time that I was looking into it, PBT was NOT covered by my medical insurance but CK was. However, this may have chanaged since then.
One advantage of CK is that treatment centers are more available because the equipment is easily transportable and less expensive. Also, unlike PBT, CK maps your prostate so that radiation can be delivered down to the sub-mm level in 3D and the computer program that controls the program can adjust for both body and organ movement, thereby further increasing the accuracy of radiation delivery and minimizing the possibility of negative side effects. No water balloon up your butt or body cast is required. Also CK treatment can be completed in only 3 to 4 sessions usually spaced every other day over a week. This is why I chose CK.
So, if it is determined that you are actually just a Gleason 6 (not a 9), I would strongly urge you to consider CK over PBT for treatment of your cancer. I was treated successfully w/CK at the UCSF Medical Center over 5 years ago. My PSA level has dropped below 1 (and is still dropping) which is considered a "success" and I experienced no negative side effects whatsoever from the treatment.
Whatever course you choose, good luck!
------------------------------------------------------
BTW, if anyone wants them, I'd be happy to give away the book and DVD above plus the following books on PCa that I used in making my treatment decision. Each of these books approaches the subject in different ways. They will all fit in a USPS Medium Flat Rate Box for the cost of shipping which should be $12.65;
Patrick Walsh and Janet Worthington: Dr. Patrick Walsh's Guide to Surviving Prostate Cancer (2001)
Aaron Katz: Dr. Katz's Guide to Prostate Health (2006).
Stephen Strum & Donna Polgiano: A Primer on Prostate Cancer (2002)
Michael Dattoli, Jennifer Cash & Don Kaltenbach: Surviving Prostate Cancer Without Surgery (2005)
John McHugh: The Decision - Your Prostate Biopsy Shows Cancer . . . Now What? (2009)
My only condition would be that whoever gets the book "pay it forward" by passing on these books in the same way to anyone else who needs to consult them. Just send me a PM if you're interested.
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Agree
Jim,
As I was reading your post, I had already had many of the thoughts that Vasco expressed in his reply, although I lack his extensive knowledge in imaging and many other areas.
The difference between a 3+3 pathology report and a 4+5 is huge. Most pathology reports, when compared to a pathology analysis of a gland removed with prostectomy, if they differ at all, show the disease to actually be WORSE than the biopsy suggested. IF the 4+5 is correct, then the notion that there is no escape from the capsule is not a doctor's "belief" that I would want to depend on.
The IMRT-plus-HT route is what I would choose, or possibly IMRT alone, but I tend to be very cautious in my decisions. Seeding is best suited to minor cases with no escape, and only in cases where the prostate is not significantly enlarged from any cause, whether cancer or BPH. I had prostectomy earlier this year at the age of 58. I absolutely would not suggest prostectomy to a 74 year old, especially with any reasonable suspicion of the disease having escaped the capsule.
Dr. Peter Scardino's Prostate Book , by Dr. Peter Scardino, Director of Surgery at Sloan-Kettering Cancer Center, writes that,
The safety and efficacy of proton beam therapy has been demonstrated for many childhood cancers and for brain tumors, but its value for other adult tumors is highly controversial. Extravigant claims have been made that the therapy can boast a 100 percent success rate without complications or side effects, but there are no credible studies and no long-term data to suppor this. (footnote 11) Experts question whether proton beam therapy offers any advantage over modern high-dose IMRT for treating prostate cancer.
Quotation from page 336; Footnote 11 is to an article in Journal of Urology , 166, no. 3 in 2001, pp. 876-81. The Prostate Book itself is from 2010, by Avery Press. It is a routine-stock item at Barnes and Noble.
My two cents, which is worth about one cent, in today's economy,
max
Thanks Max for the feedback. Sorry to hear you got this stuff at 58 but hope you are doing great.
I have definitely ruled out surgery;I am in good health I think for a 74 year old, still working (for myself) and excersing regularly; but, if there is anyway I can stand a reasonable chance of beating this beast with radiation, then that is the way I will be going. I just went through a total knee replacement and I don't relish getting cut on again if I can help it!
Every radiologist including one who specializes in bracheotherapy are recommending that I go the ADT or hormone route, generally starting 30 - 60 days prior to the radiation; lasting 1 year to two; depending on the doctor. Real bummer -- but, it seems the odds go up going the hormone route; so guess I have no choice.
Thanks for the reference to Dr. Scardino's book. so happens I already have acquired that book and had already noted his comments about Proton Beam. I am cranking that into my thinking but at same time, he published that in 2010 and the study quoted was dated 2001. I am still now hearing a lot of good feedback from successful treatments with PBT coming out of California (BOB) and MD Anderson (ProtonPals) in Houston.
Also, for the record you may consider your comments worth only two cents; but, as you know; when you are in the stage I am; that two cents is worth a wagon wheel more - regardless of the economy!
Thanks again. Jim
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Beware ADT!Grifjc said:Looking for Proton Beam treatment feedback from someone that had
Thank you Mr. VGama for such excellent feedback. I wished I had got back to the forum yesterday. I will be watching this forum more carefully henceforth! I am really up to decision time but still have not totally committed.
I have just read your response but not yet read through the others below; but i am working on it now. Got lot to review. I will be responding again.
The radiologist are waiting for me to get back with an answer as to which way i am going to go. I know I am in high danger zone and got to make a decision soon. the amount of information is overwhelming as you and other likely know from past experience.
Right now I am between the proton beam + ADT starting soon which would be with the Texas Center for proton therapy(they have pencil beam I think) and UT SW medical using IMRT + ADT. Both just seem to be great faciities, but, UTSW does not yet have the PBT; but, he seemed quite comfortable with his proposed treatment using IMRT and ADT. The ADT bothers me but seems with my risk level that all are recommending that as a necessity if I am going to beat it.
I am at a real loss to decide but your point about further varification that it is in fact still inside the capsule seems well taken. I too wandered just how accurate the standard bone and CT scan previously done really are.. I am also wandering about further test to ascertain if it is in fact still in the capsule. I had asked the radiologist at UTSW about the parametric MRI (DCE-MRI) and he said in all cases they like to do that to asertain where the cancer is located. the doc i talked to at Texs Center for proton therapy did not seem to see the need for it as much? That concerns me a bit; particularly based on your comments. I do not know where around here i can get the C11 Pet/ct scan but will be asking questions.
Also, I appreciate the link to the Urology article regarding Proton Beam Therapy vs the IMRT. i did not understand much of it but the conclusions I did understand and they were most interesting.
Again thanks. I will be reviewing your comments carefully before I make a decision.
Jim
I'm still confused about your diagnosis and you can decide on a treatment unless you're clear about what "kind" of cancer you have.
You say that you were told that the cancer is confined to the prostate capsule and that you only had a PSA of 7.9 and were staged at T1c but that your doctors are recommending IMRT w/ADT. However, ADT isn't normally recommended unless the patient has an aggressive cancer -- usually Gleason 9 with a very high PSA level (sometimes in the 100's) -- that needs to be knocked down and controlled ASAP! So, you really need to clarify what your Gleason level is. Is it a 6 or a 9?
If it's a 6, you can get IMRT, PBT or CK. No problem. If it's a 9, I'm not sure even IMRT would be recommended. Only chemo and ADT normally would be used because the cancer would have already probably spread but you have said that you were told that your cancer has not spread This doesn't make sense because w/a Gleason 9 the cancer has almost always spread and, if your doctors don't see any spread, I would tell them to look again or consult other doctors to make sure that it hasn't actually spread.
BTW, the only scan that will tell you for sure if your cancer has spread or not is an MRI/MRSI scan using a endorectal coil using magentic spectroscopy to detect the presence of choline which is a marker for cancer. See: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1578527/
I've also never heard of a patient being told to start ADT before receiving radiation treatment. Before you do that, you really need tor read up on the negative side effects of ADT. Those side effects can be MAJOR!!! You can start looking into it by reading this thread: http://csn.cancer.org/node/236006. Both Max and Vasco posted some important info in this thread that you should be aware of BEFORE you begin such treatment.
My personal position on ADT is to avoid it if at all possible and, if I am faced w/the necessity of cutting off testosterone production, I've already decided that I would rather just cut my balls off instead -- physical vs chemical castration. If physical castration was not discussed w/you as an option, I would ask your doctors why they didn't mention it and I would suggest you read up on that as another option.
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Again, Beware ADT!Grifjc said:Thanks Max for the feedback. Sorry to hear you got this stuff at 58 but hope you are doing great.
I have definitely ruled out surgery;I am in good health I think for a 74 year old, still working (for myself) and excersing regularly; but, if there is anyway I can stand a reasonable chance of beating this beast with radiation, then that is the way I will be going. I just went through a total knee replacement and I don't relish getting cut on again if I can help it!
Every radiologist including one who specializes in bracheotherapy are recommending that I go the ADT or hormone route, generally starting 30 - 60 days prior to the radiation; lasting 1 year to two; depending on the doctor. Real bummer -- but, it seems the odds go up going the hormone route; so guess I have no choice.
Thanks for the reference to Dr. Scardino's book. so happens I already have acquired that book and had already noted his comments about Proton Beam. I am cranking that into my thinking but at same time, he published that in 2010 and the study quoted was dated 2001. I am still now hearing a lot of good feedback from successful treatments with PBT coming out of California (BOB) and MD Anderson (ProtonPals) in Houston.
Also, for the record you may consider your comments worth only two cents; but, as you know; when you are in the stage I am; that two cents is worth a wagon wheel more - regardless of the economy!
Thanks again. Jim
See my comments above.
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Hormone Therapy for ProstateSwingshiftworker said:Beware ADT!
I'm still confused about your diagnosis and you can decide on a treatment unless you're clear about what "kind" of cancer you have.
You say that you were told that the cancer is confined to the prostate capsule and that you only had a PSA of 7.9 and were staged at T1c but that your doctors are recommending IMRT w/ADT. However, ADT isn't normally recommended unless the patient has an aggressive cancer -- usually Gleason 9 with a very high PSA level (sometimes in the 100's) -- that needs to be knocked down and controlled ASAP! So, you really need to clarify what your Gleason level is. Is it a 6 or a 9?
If it's a 6, you can get IMRT, PBT or CK. No problem. If it's a 9, I'm not sure even IMRT would be recommended. Only chemo and ADT normally would be used because the cancer would have already probably spread but you have said that you were told that your cancer has not spread This doesn't make sense because w/a Gleason 9 the cancer has almost always spread and, if your doctors don't see any spread, I would tell them to look again or consult other doctors to make sure that it hasn't actually spread.
BTW, the only scan that will tell you for sure if your cancer has spread or not is an MRI/MRSI scan using a endorectal coil using magentic spectroscopy to detect the presence of choline which is a marker for cancer. See: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1578527/
I've also never heard of a patient being told to start ADT before receiving radiation treatment. Before you do that, you really need tor read up on the negative side effects of ADT. Those side effects can be MAJOR!!! You can start looking into it by reading this thread: http://csn.cancer.org/node/236006. Both Max and Vasco posted some important info in this thread that you should be aware of BEFORE you begin such treatment.
My personal position on ADT is to avoid it if at all possible and, if I am faced w/the necessity of cutting off testosterone production, I've already decided that I would rather just cut my balls off instead -- physical vs chemical castration. If physical castration was not discussed w/you as an option, I would ask your doctors why they didn't mention it and I would suggest you read up on that as another option.
Hormone Therapy for Prostate Cancer Fact Sheet - National ...
Men with early-stage prostate cancer that has an intermediate or high risk of recurrence often receive hormone therapy before or during radiation therapy,0 -
Need evidence that PBT is justified for Gleason 9 cases
As has been stated several times by now, a Gleason 9 cancer within your prostate is serious. I had a similar situation, and the recommendation was to launch a triple attack: Hormone therapy (ADT), + SBRT (Cyberknife; 3 treatments) + IMRT (24 sessions).
I recommend that you ask the doctor at the Irving PBT facility to provide you with refereed studies that show superiority of PBT with respect to long(er) term outcomes (and side effects) over more 'classical' treatments for Gleason 9 cases.
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hopeful and optimistic said:
All good responses
I wonder, in your biopsy what the involvement, percent that were cancerous, of the cores that were 9. If very small, this may have been the GUESSES that these radiation oncologist have made. Without advanced imaging such as the PET Scan mentioned above or an multiparmetric MRI T3 one will not know how extensive the cancer is.
As mentioned radiation such as IMRT or SBRT is very precise, and can target a wider area than the prostate itself, so you can have a better chance of cure than surgery (which is very invasive). It is not recommended that older men receive surgery since the side effects of this procedure are age related.
Studies do not show proton therapy to be more effective than IMRT, and I think SBRT as well. Proton therapy is simply more expensive and many insurances do not cover this procedure. Please note that the newer centers for proton therapy produce better results than the older centers, so you may wish to consult with the center near you.
I strongly recommend that you consult with a medical oncologist, the very very best that you can find and afford to lead your medical team. These docs are best qualified to administer hormone therapy.
I don't know the specific doc at MD Anderson, but if you can , this is the place for you. The hospital is nationally ranked, is a center of excellence and the best of the best.
Also suggest that you attend a local support group; these are generally knowledge based. USTOO lists support groups that they sponsor by area.
Read , reseach internet, keep on asking questions, we are here for you.
I am reading all the post and all comments offered are really appreciated. Frankly it is overwhelming and I wanted to specifically respond to all if I can because you have taken the time to try to try and address my concerns. Time is my enemy right now.
Briefly, out of 12 cores; according to the pathologist, the right lateral base was a G6(3+3), involving 30% of the tissue with perineuaral invasion (I just looked that up and it don't sound good!); Right lateral Mid was G9(4+5) involving 50%; Right lateral apex was G9(4+5) involving 40%; Left lateral apex was G6(3+3) involving 50%. I had doctor send to John Hopkins for second opinion. I have not seen the report but he called and said they confirmed except rather than 50% on one core they showed to be 80% but they showed another one to be less than first report. I am getting a copy of the report sent to me. Not sure I will know what it means but will at least be able to compare the two reports.
Cyberknife: Sure liked that approach; but, talked doctor at Baylor Dallas and was told that my PC was too advanced for CK; maybe i need to press this some more? MD Anderson is no doubt best but it is 6 hour drive from DFW; however, if CK would be a possibility, I would go to Houston. 5 treatments or so is not like 40!! I even looked at focal laser ablation in Galvaston but again the doc's said my scores are too high.
I am being set up for parametric MRI which I requested. I have requested a C-11 PET/CT scan but not available here. The reason One reason I did is from Dr. Jay Cohen's book "Prostate Cancer Breakthroughs 2014" it seemed to imply it was more accurate and would better identify if the stuff has spread. Not sure this is something they do for primary treatment however. But, if I can ascertain that this type PEt scan would help identify what I am dealing with i will definitely look at going wherever it is offered (if I can afford it). My doctor at the PBT center does not place too high a value on it? The bone scan and CT scan done did not reflect it had spread. This all is way above my pay grade.
The new PBT center here in DFW is new; directed by the doctor who was at MD Anderson for years. This center has the pencil beam, whatever that is. it is latest. Got great group of doctors it seems. However, they have been the first to tell me that this form of treatment is not necessarily proven to be better than the IMRT.
Again I do appreciate the great feedback.
Jim
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Dear Jim, The AmericanGrifjc said:I am reading all the post and all comments offered are really appreciated. Frankly it is overwhelming and I wanted to specifically respond to all if I can because you have taken the time to try to try and address my concerns. Time is my enemy right now.
Briefly, out of 12 cores; according to the pathologist, the right lateral base was a G6(3+3), involving 30% of the tissue with perineuaral invasion (I just looked that up and it don't sound good!); Right lateral Mid was G9(4+5) involving 50%; Right lateral apex was G9(4+5) involving 40%; Left lateral apex was G6(3+3) involving 50%. I had doctor send to John Hopkins for second opinion. I have not seen the report but he called and said they confirmed except rather than 50% on one core they showed to be 80% but they showed another one to be less than first report. I am getting a copy of the report sent to me. Not sure I will know what it means but will at least be able to compare the two reports.
Cyberknife: Sure liked that approach; but, talked doctor at Baylor Dallas and was told that my PC was too advanced for CK; maybe i need to press this some more? MD Anderson is no doubt best but it is 6 hour drive from DFW; however, if CK would be a possibility, I would go to Houston. 5 treatments or so is not like 40!! I even looked at focal laser ablation in Galvaston but again the doc's said my scores are too high.
I am being set up for parametric MRI which I requested. I have requested a C-11 PET/CT scan but not available here. The reason One reason I did is from Dr. Jay Cohen's book "Prostate Cancer Breakthroughs 2014" it seemed to imply it was more accurate and would better identify if the stuff has spread. Not sure this is something they do for primary treatment however. But, if I can ascertain that this type PEt scan would help identify what I am dealing with i will definitely look at going wherever it is offered (if I can afford it). My doctor at the PBT center does not place too high a value on it? The bone scan and CT scan done did not reflect it had spread. This all is way above my pay grade.
The new PBT center here in DFW is new; directed by the doctor who was at MD Anderson for years. This center has the pencil beam, whatever that is. it is latest. Got great group of doctors it seems. However, they have been the first to tell me that this form of treatment is not necessarily proven to be better than the IMRT.
Again I do appreciate the great feedback.
Jim
Dear Jim,
The American Urological Associaiton recommends a bone scan for those with a Gleason 8 and above to determine if there is bone metastisis. Your bone scan did not determine matastisis to the bone. The CT scan does not provide much defination whereas the multiparametric MRI with a T3 magnet does.
That said, it is extremely likely that your cancer has spread beyond the prostate, since there is a high volume of the Gleason 4+5=9 that was found, and also perineuaral invasion You need to be treated for this.
You will do fine, however things must be done in a coordinated manner with excellence.
Please let it be known that there is a difference between docs and facilities. As you know MD Anderson is a center of excellence. I personally would travel to Timbucktoo for the best treatment, which in my opinion is necessary in your case.
To my knowledge there have been no documented studies that showed Proton Bean to be any better than other radiation treatments.
Once again I mention that aside from a top flight radiation oncologist, it is best that you also find a top rate medical oncologist
...........................
PS
I know a man with a gleason 4+4=8 who is currently being treated with SBRT (novalis) ; previous to these five sessions, he first received a couple of months of hormone treatment.
Since SBRT is very precise, the perimeter of the treatment can be extended beyond the prostate.
I cannot comment to a Gleason of 4=5=9; you want to find a top notch radiation oncologist that administers SBRT (cyberknife is one form of SBRT). for input.
Be hopeful and optimistic
0 -
Even so . . .hopeful and optimistic said:Hormone Therapy for Prostate
Hormone Therapy for Prostate Cancer Fact Sheet - National ...
Men with early-stage prostate cancer that has an intermediate or high risk of recurrence often receive hormone therapy before or during radiation therapy,Even if ADT before radiation is considered an acceptable treatment protocol, the patient still needs to be advised of ALL of the risks of ADT treatment and the alternatives before such treatment is initiated.
0 -
You're a Gleason 9Grifjc said:I am reading all the post and all comments offered are really appreciated. Frankly it is overwhelming and I wanted to specifically respond to all if I can because you have taken the time to try to try and address my concerns. Time is my enemy right now.
Briefly, out of 12 cores; according to the pathologist, the right lateral base was a G6(3+3), involving 30% of the tissue with perineuaral invasion (I just looked that up and it don't sound good!); Right lateral Mid was G9(4+5) involving 50%; Right lateral apex was G9(4+5) involving 40%; Left lateral apex was G6(3+3) involving 50%. I had doctor send to John Hopkins for second opinion. I have not seen the report but he called and said they confirmed except rather than 50% on one core they showed to be 80% but they showed another one to be less than first report. I am getting a copy of the report sent to me. Not sure I will know what it means but will at least be able to compare the two reports.
Cyberknife: Sure liked that approach; but, talked doctor at Baylor Dallas and was told that my PC was too advanced for CK; maybe i need to press this some more? MD Anderson is no doubt best but it is 6 hour drive from DFW; however, if CK would be a possibility, I would go to Houston. 5 treatments or so is not like 40!! I even looked at focal laser ablation in Galvaston but again the doc's said my scores are too high.
I am being set up for parametric MRI which I requested. I have requested a C-11 PET/CT scan but not available here. The reason One reason I did is from Dr. Jay Cohen's book "Prostate Cancer Breakthroughs 2014" it seemed to imply it was more accurate and would better identify if the stuff has spread. Not sure this is something they do for primary treatment however. But, if I can ascertain that this type PEt scan would help identify what I am dealing with i will definitely look at going wherever it is offered (if I can afford it). My doctor at the PBT center does not place too high a value on it? The bone scan and CT scan done did not reflect it had spread. This all is way above my pay grade.
The new PBT center here in DFW is new; directed by the doctor who was at MD Anderson for years. This center has the pencil beam, whatever that is. it is latest. Got great group of doctors it seems. However, they have been the first to tell me that this form of treatment is not necessarily proven to be better than the IMRT.
Again I do appreciate the great feedback.
Jim
Ok, this clears it up. You're a Gleason 9.
Doesn't matter than a different part of your biopsy is rated lower; you use the highest rating to determine your risk. Still don't know how you can be staged as T1c with a Gleason 9 rating. Based on the Staging definitions you should be at least a T2c:
"T2: Your doctor can feel the cancer with a digital rectal exam (DRE) or see it with imaging such as transrectal ultrasound, but it still appears to be confined to the prostate gland.
- T2a: The cancer is in one half or less of only one side (left or right) of your prostate.
- T2b: The cancer is in more than half of only one side (left or right) of your prostate.
- T2c: The cancer is in both sides of your prostate."
See: http://www.cancer.org/cancer/prostatecancer/detailedguide/prostate-cancer-staging
The C-11 PET/CT (or an MRI/MRSI) scan would help clear up if the PCa is actually still confined to the prostate or not. If the cancer is NOT still confined to the prostate, you would be staged at T3 or T4:
"T3:The cancer has grown outside your prostate and may have grown into the seminal vesicles.
- T3a: The cancer extends outside the prostate but not to the seminal vesicles.
- T3b: The cancer has spread to the seminal vesicles.
T4: The cancer has grown into tissues next to your prostate (other than the seminal vesicles), such as the urethral sphincter (muscle that helps control urination), the rectum, the bladder, and/or the wall of the pelvis."
Even assuming your cancer is still confirned to the prostate, neither CK or PBT is considered appropriate for treatment with patients at Gleason 9. I've never heard of anyone w/more than a Gleason 7 treated w/CK or PBT. So, any radiation treatment you receive probably would have to be via IMRT but, if the cancer is no longer confined to the prostate, no form of radiation or surgery would be appropriate. The only alternatives would be chemo and/or physical/chemical castration.
I suppose it's possible to treat someone w/a greater than a Gleason 7 w/CK or PBT but ONLY if the RO is absolutely sure that the cancer is confined to the prostate capsule. However, with a Gleason 9 and between 40-80% involvement in the left and right apexes, I find it hard to believe that your cancer is confined to the prostate capsule. So, if I were you, I would insist on being referred to a facility than can do a C-11 PET/CAT (or MRI/MRSI) scan to find out for sure BEFORE you undergo any radiation treatment.
However, given that you are a Gleason 9, you also need to consider whether you need to subject yourself to chemical or physical castration in order to reduce your testosterone production in order to reduce the risk of further growth of your prostate cancer. Even though I've decided otherwise, you can start chemical ADT (after reviewing the effects of the various drugs), choosing the drug you'd prefer and just see what happens. If you have no major adverse reaction, great!
If that drug doesn't work for you, you can try others and, if none of them work, you can always opt for physical castration as a last resort. But, what you need to do is read up on the subject so that you know what the major drugs are and what effects they can have, so that you can make an informed choice before you initiate ADT treatment. DO NOT just trust that your doctors know what is best for you. Only YOU can make that choice.
Good luck!!!
0 -
Machinehopeful and optimistic said:Dear Jim, The American
Dear Jim,
The American Urological Associaiton recommends a bone scan for those with a Gleason 8 and above to determine if there is bone metastisis. Your bone scan did not determine matastisis to the bone. The CT scan does not provide much defination whereas the multiparametric MRI with a T3 magnet does.
That said, it is extremely likely that your cancer has spread beyond the prostate, since there is a high volume of the Gleason 4+5=9 that was found, and also perineuaral invasion You need to be treated for this.
You will do fine, however things must be done in a coordinated manner with excellence.
Please let it be known that there is a difference between docs and facilities. As you know MD Anderson is a center of excellence. I personally would travel to Timbucktoo for the best treatment, which in my opinion is necessary in your case.
To my knowledge there have been no documented studies that showed Proton Bean to be any better than other radiation treatments.
Once again I mention that aside from a top flight radiation oncologist, it is best that you also find a top rate medical oncologist
...........................
PS
I know a man with a gleason 4+4=8 who is currently being treated with SBRT (novalis) ; previous to these five sessions, he first received a couple of months of hormone treatment.
Since SBRT is very precise, the perimeter of the treatment can be extended beyond the prostate.
I cannot comment to a Gleason of 4=5=9; you want to find a top notch radiation oncologist that administers SBRT (cyberknife is one form of SBRT). for input.
Be hopeful and optimistic
Tim,
I know you are in shop-talk overload at the moment, so I wanted to mention to you that "Novalis" (mentioned by Hopeful above) is another manufacture's version of the technology behind Cyberknife (both are means of SBRT radiation delivery; radiation delivered in more powerful doses than in traditional, fractionated radiation. Novalis or Cyberknife are commonly done in a week or LESS. IMRT and IGRT routinely takes over a month. Most statistical outcome studies rate Fractionated and SBRT radiation delivery systems as identical or virtually identical in curative success percentages. They are close to identical. As someone here noted a year or so ago, it is essentially a "Chevy-Ford" sort of difference. Some cancer centers have bought Novalis, some have bought Cyberknife. Cyberknife seems to be leading the marketing and sales competition, however. My cancer center has Novalis.
https://www.novalis-radiosurgery.com/patient-center/faqs/
max
0 -
Swingshiftworker said:
You're a Gleason 9
Ok, this clears it up. You're a Gleason 9.
Doesn't matter than a different part of your biopsy is rated lower; you use the highest rating to determine your risk. Still don't know how you can be staged as T1c with a Gleason 9 rating. Based on the Staging definitions you should be at least a T2c:
"T2: Your doctor can feel the cancer with a digital rectal exam (DRE) or see it with imaging such as transrectal ultrasound, but it still appears to be confined to the prostate gland.
- T2a: The cancer is in one half or less of only one side (left or right) of your prostate.
- T2b: The cancer is in more than half of only one side (left or right) of your prostate.
- T2c: The cancer is in both sides of your prostate."
See: http://www.cancer.org/cancer/prostatecancer/detailedguide/prostate-cancer-staging
The C-11 PET/CT (or an MRI/MRSI) scan would help clear up if the PCa is actually still confined to the prostate or not. If the cancer is NOT still confined to the prostate, you would be staged at T3 or T4:
"T3:The cancer has grown outside your prostate and may have grown into the seminal vesicles.
- T3a: The cancer extends outside the prostate but not to the seminal vesicles.
- T3b: The cancer has spread to the seminal vesicles.
T4: The cancer has grown into tissues next to your prostate (other than the seminal vesicles), such as the urethral sphincter (muscle that helps control urination), the rectum, the bladder, and/or the wall of the pelvis."
Even assuming your cancer is still confirned to the prostate, neither CK or PBT is considered appropriate for treatment with patients at Gleason 9. I've never heard of anyone w/more than a Gleason 7 treated w/CK or PBT. So, any radiation treatment you receive probably would have to be via IMRT but, if the cancer is no longer confined to the prostate, no form of radiation or surgery would be appropriate. The only alternatives would be chemo and/or physical/chemical castration.
I suppose it's possible to treat someone w/a greater than a Gleason 7 w/CK or PBT but ONLY if the RO is absolutely sure that the cancer is confined to the prostate capsule. However, with a Gleason 9 and between 40-80% involvement in the left and right apexes, I find it hard to believe that your cancer is confined to the prostate capsule. So, if I were you, I would insist on being referred to a facility than can do a C-11 PET/CAT (or MRI/MRSI) scan to find out for sure BEFORE you undergo any radiation treatment.
However, given that you are a Gleason 9, you also need to consider whether you need to subject yourself to chemical or physical castration in order to reduce your testosterone production in order to reduce the risk of further growth of your prostate cancer. Even though I've decided otherwise, you can start chemical ADT (after reviewing the effects of the various drugs), choosing the drug you'd prefer and just see what happens. If you have no major adverse reaction, great!
If that drug doesn't work for you, you can try others and, if none of them work, you can always opt for physical castration as a last resort. But, what you need to do is read up on the subject so that you know what the major drugs are and what effects they can have, so that you can make an informed choice before you initiate ADT treatment. DO NOT just trust that your doctors know what is best for you. Only YOU can make that choice.
Good luck!!!
Jim,
I was going to write you with about 80% of what SwingShiftWorker wrote above, but he saved me the effort.
You clearly have advanced, serious, and aggressive PCa. You need to get with an experienced medical oncologist who has world-class Metastatic, PCa treatment experience. Forget you ever heard about proton beam treatment; it is irrelevant to your suituation. Forget surgery. You are at the HT/Chemo/and probably also radiation stage of the game. Hire a good coach.
But know that regardless, what you have is almost certainly very treatable and managable, even long-term, with the right team.
max
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Gleason 9; reply to Swingshiftworker and othersSwingshiftworker said:You're a Gleason 9
Ok, this clears it up. You're a Gleason 9.
Doesn't matter than a different part of your biopsy is rated lower; you use the highest rating to determine your risk. Still don't know how you can be staged as T1c with a Gleason 9 rating. Based on the Staging definitions you should be at least a T2c:
"T2: Your doctor can feel the cancer with a digital rectal exam (DRE) or see it with imaging such as transrectal ultrasound, but it still appears to be confined to the prostate gland.
- T2a: The cancer is in one half or less of only one side (left or right) of your prostate.
- T2b: The cancer is in more than half of only one side (left or right) of your prostate.
- T2c: The cancer is in both sides of your prostate."
See: http://www.cancer.org/cancer/prostatecancer/detailedguide/prostate-cancer-staging
The C-11 PET/CT (or an MRI/MRSI) scan would help clear up if the PCa is actually still confined to the prostate or not. If the cancer is NOT still confined to the prostate, you would be staged at T3 or T4:
"T3:The cancer has grown outside your prostate and may have grown into the seminal vesicles.
- T3a: The cancer extends outside the prostate but not to the seminal vesicles.
- T3b: The cancer has spread to the seminal vesicles.
T4: The cancer has grown into tissues next to your prostate (other than the seminal vesicles), such as the urethral sphincter (muscle that helps control urination), the rectum, the bladder, and/or the wall of the pelvis."
Even assuming your cancer is still confirned to the prostate, neither CK or PBT is considered appropriate for treatment with patients at Gleason 9. I've never heard of anyone w/more than a Gleason 7 treated w/CK or PBT. So, any radiation treatment you receive probably would have to be via IMRT but, if the cancer is no longer confined to the prostate, no form of radiation or surgery would be appropriate. The only alternatives would be chemo and/or physical/chemical castration.
I suppose it's possible to treat someone w/a greater than a Gleason 7 w/CK or PBT but ONLY if the RO is absolutely sure that the cancer is confined to the prostate capsule. However, with a Gleason 9 and between 40-80% involvement in the left and right apexes, I find it hard to believe that your cancer is confined to the prostate capsule. So, if I were you, I would insist on being referred to a facility than can do a C-11 PET/CAT (or MRI/MRSI) scan to find out for sure BEFORE you undergo any radiation treatment.
However, given that you are a Gleason 9, you also need to consider whether you need to subject yourself to chemical or physical castration in order to reduce your testosterone production in order to reduce the risk of further growth of your prostate cancer. Even though I've decided otherwise, you can start chemical ADT (after reviewing the effects of the various drugs), choosing the drug you'd prefer and just see what happens. If you have no major adverse reaction, great!
If that drug doesn't work for you, you can try others and, if none of them work, you can always opt for physical castration as a last resort. But, what you need to do is read up on the subject so that you know what the major drugs are and what effects they can have, so that you can make an informed choice before you initiate ADT treatment. DO NOT just trust that your doctors know what is best for you. Only YOU can make that choice.
Good luck!!!
Thanks again to all; needless to say am running just a little scared.
Going for multiparametic MRI next week. Hope to find it contained. DRE shows nothing to indicate it has spread;
they did call it a T1c; but who really knows without more diagnosis.
I am within a short distance (20-25 minutes) of the new PBT center which has mostly MD Anderson docs heading it up. hard not to go that route for me.
Frankly my real concern now is affects of the ADT. I may take my chances before I go for full course of ADT although that is not what my Doc at the PBT center is wanting me to do.
Just don't know.
Also, I am trying to respond to all comments; but, even if i don't, I am reading them all. I sincerely appreciate the well intentioned feedback. Sounds like from guys that have gone through this in one form or another in the past.
Thanks again Jim
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Anecdoctal
Hi Jim,
I just finished PBT at MDAnderson & just missed having Dr Lee as my doc. He is heading the Irving unit & Ive heard great things about him from patients, nurses & staff.
The other posters here are way a head of me in the comparisons of treatment so mine is anecdoctal only.
MDAnderson was terrific. 39 treatments and theirtechs are top notch.
A few points.....1) 2 of my compaders @ MDA had Gleason 8s. Several had Gleason 7s. Most were GL6s though. Also I didnt meet any GL9s.
2) The book by Bob Marckini is the best. But its skewed toward Proton Beam
3) the balloon part of PBT is no big deal & they no longer form a cast to lie in. You are rigid on a table with pillows & previously inserted fiducials are set to guide your location on that table for the beam.
4) no one has mentioned prayer & God. Those are ancillary and cost nothing. Therefore they dont interfere with your research but could add to relief of tension.
You'll be fine going with whatever choice you make.
Sam
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Thank youSamw916 said:Anecdoctal
Hi Jim,
I just finished PBT at MDAnderson & just missed having Dr Lee as my doc. He is heading the Irving unit & Ive heard great things about him from patients, nurses & staff.
The other posters here are way a head of me in the comparisons of treatment so mine is anecdoctal only.
MDAnderson was terrific. 39 treatments and theirtechs are top notch.
A few points.....1) 2 of my compaders @ MDA had Gleason 8s. Several had Gleason 7s. Most were GL6s though. Also I didnt meet any GL9s.
2) The book by Bob Marckini is the best. But its skewed toward Proton Beam
3) the balloon part of PBT is no big deal & they no longer form a cast to lie in. You are rigid on a table with pillows & previously inserted fiducials are set to guide your location on that table for the beam.
4) no one has mentioned prayer & God. Those are ancillary and cost nothing. Therefore they dont interfere with your research but could add to relief of tension.
You'll be fine going with whatever choice you make.
Sam
Thank you for #4, Sam.
0
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