What to ask the radiation oncologist about prostate cancer?

Posted by surftohealth88 @surftohealth88, May 7 3:13pm

Tomorrow we have zoom call with radiation oncologist that was recommended to us by prostate surgeon. Our meeting with surgeon was somewhat confusing since we did not expect to be told that my husband's case is not "urgent" and that we should talk to radiologist and as well to a doctor that does focal treatments. We were convinced that RP was the best approach, as we still think that RP is a way to go with cruciform and IDC but since we were told that we should have consultations with radiology, we agreed. I can say with whole honesty that we were like two deer caught in headlight after we were told that there is no rush, and we both failed to react with NEW questions and stared at "old ones" on our paper in confusion. So, in preparation for tomorrow's appointment I am asking for help with possible questions - any suggestion and advise is welcome. Thanks so much in advance < 3

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Just a short report about consultations since I am sure there would be perhaps similar patients in the future and might need some prospective and help in making decisions.

Meeting went great ! I was impressed with not only doctor's expertise but also with his honesty and genuine care. Radiologist took time ahead of the meeting to study our particular case and made detailed plan and program for treatment with 3 possible protocols using different radiation techniques. Since my husband has cribriform and IDC the most aggressive approach was deemed as one that would give the best results (radiation + ADT + one maxi brachi hit in the single spot with IDC using probes). The aggressive features of IDC and cribriform require aggressive approach. BUT - there is only one approach that is even more "aggressive" toward IDC and that is RP.

I can not express my gratitude to this doctor who put my husband's interest ahead of everything else and who spent 40 minutes presenting ALL of the options in every possible detail just to basically at the end give us a "wink" to go with our plan to have RP.

We are lucky that my husband is in good age group and healthy enough to have RP but I would also like to say that if you can not have RP or do not want to have it, there are many radiation options for you with possibly good results also. In case you have IDC and cribriform , RP would however give you the best chance of getting rid of the cancer.

Nobody can predict the future, of course, and results are also dependent on doctor's expertise. If you decide to have RP find the best robotic surgeon you can find, possibly in center of excellence or the one who did thousands of prostatectomies.

We are now doubly reassured that our plan and our gut instincts were correct and now we can concentrate on surgery preparations, PT for pelvic floor, etc.

Thanks everybody for all of your help and advice : ))).
Bill, you are as always source of wast knowledge and ALWAYS there to help everybody and/or offer the shoulder - may the universe return that to you in multiples < 3

Wishing you all wonderful and relaxing weekend and upcoming Mother's Day ! : )))

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Profile picture for surftohealth88 @surftohealth88

Just a short report about consultations since I am sure there would be perhaps similar patients in the future and might need some prospective and help in making decisions.

Meeting went great ! I was impressed with not only doctor's expertise but also with his honesty and genuine care. Radiologist took time ahead of the meeting to study our particular case and made detailed plan and program for treatment with 3 possible protocols using different radiation techniques. Since my husband has cribriform and IDC the most aggressive approach was deemed as one that would give the best results (radiation + ADT + one maxi brachi hit in the single spot with IDC using probes). The aggressive features of IDC and cribriform require aggressive approach. BUT - there is only one approach that is even more "aggressive" toward IDC and that is RP.

I can not express my gratitude to this doctor who put my husband's interest ahead of everything else and who spent 40 minutes presenting ALL of the options in every possible detail just to basically at the end give us a "wink" to go with our plan to have RP.

We are lucky that my husband is in good age group and healthy enough to have RP but I would also like to say that if you can not have RP or do not want to have it, there are many radiation options for you with possibly good results also. In case you have IDC and cribriform , RP would however give you the best chance of getting rid of the cancer.

Nobody can predict the future, of course, and results are also dependent on doctor's expertise. If you decide to have RP find the best robotic surgeon you can find, possibly in center of excellence or the one who did thousands of prostatectomies.

We are now doubly reassured that our plan and our gut instincts were correct and now we can concentrate on surgery preparations, PT for pelvic floor, etc.

Thanks everybody for all of your help and advice : ))).
Bill, you are as always source of wast knowledge and ALWAYS there to help everybody and/or offer the shoulder - may the universe return that to you in multiples < 3

Wishing you all wonderful and relaxing weekend and upcoming Mother's Day ! : )))

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Excellent consult. I was going to mention the High Dose Brachy to the aggressive area and then either SBRT/IMRT, but your RO beat me to it!😁
A lot to consider but one thing I would ask is this: If you decide on the aformentioned radiation protocol, which type of radiation would be better if you ever DID have to consider salvage surgery? SBRT or IMRT? They do the same thing but one is very focused, and the other not so much. Couldn’t hurt to ask. Best,
Phil

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Such an excellent question. I am 5 years in on this aPC journey. I view Radiation Oncologist as leading edge. Two Years Ago I added annual educational consultations with my radiation oncologist. I have two. One at my local hospital cancer center, the other is a large teaching/research cancer research hospital NCI (National Caner Institute).

Both are excellent. Why two? Simple, Radiation Oncology technology advancements and innovations are changing prose cancer treatment for the good and will be for a long time. My rule of thumb is NCI cancer research treatment hospital have access to leading edge knowledge and radiation devices.

Self-education is a vital part of cancer survivorship.

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Profile picture for surftohealth88 @surftohealth88

We have app. in 2 hours, I will let you know if anything interesting transpires regarding future treatment .

JC - there was only one core of 14 with finding of 4+3 (gleason 7), and two with 3+3 . All of the rest was clear. BUT, that 4+3 contains cribriform and IDC formations. My husband is 69 and very fit and healthy.

First pathology stated IDC, and second opinion stated "possible IDC", both agreed about cribriform. Nevertheless, that one core puts my husband in "intermediate high risk" group.

PSMA showed cancer being contained in the gland and in that one single spot in prostate.

One lymph node was inconclusive but the scan was examined again by extremely experienced radiologist who told us that it is actually negative, and it was also confirmed by surgeon. So, hopefully it is negative.

All in all, unusual case with having one single core with such aggressive features :(. If it was 4+3 without cribriform and IDC decision would be more straightforward and easier. Cribriform cells tend to escape and metastasize and IDC sometimes make micro environment which almost protects cancerous cells inside those ducts. Nobody proved it yet but some studies show that most relapses after initial radiation actually happen to patients with those features and in this paper that was posted by Dailyeffort it looks like some patients that were without IDC and Cribriform before RT end up having them after failed RT. In another study IDC patients had better success with RP than RT for metastases free survival.

All in all, IMHO RP would give the best chance for elimination of aggressive features that are present at this time. What future holds only heavens know ...

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I am a 63 year old, 8.1 PSA, Gleason 4+3 "unfavorable intermediate risk" patient. Only one biopsy core positive had Gleason 4+3, but I also had eight other positive cores with Gleason 3+4. No IDC or Cribriform which I acknowledge are more problematic, but my Gleason 4+3 core did touch the outer perimeter of my prostate.

I chose SBRT radiation for my treatment primarily because the 4+3 core was in contact with the outer perimeter. This concerned me because it seemed reasonably likely my 4+3 core could have some microscopic escape from the prostate into the surrounding tissues. If so, then I believe the SBRT radiation will take care of this while radiating the entire prostate.

However...if my cancer did not contact the outer perimeter of my prostate, then I probably would have selected RP surgery instead of radiation.

I'm cheering for you. Best wishes.

REPLY
Profile picture for surftohealth88 @surftohealth88

Just a short report about consultations since I am sure there would be perhaps similar patients in the future and might need some prospective and help in making decisions.

Meeting went great ! I was impressed with not only doctor's expertise but also with his honesty and genuine care. Radiologist took time ahead of the meeting to study our particular case and made detailed plan and program for treatment with 3 possible protocols using different radiation techniques. Since my husband has cribriform and IDC the most aggressive approach was deemed as one that would give the best results (radiation + ADT + one maxi brachi hit in the single spot with IDC using probes). The aggressive features of IDC and cribriform require aggressive approach. BUT - there is only one approach that is even more "aggressive" toward IDC and that is RP.

I can not express my gratitude to this doctor who put my husband's interest ahead of everything else and who spent 40 minutes presenting ALL of the options in every possible detail just to basically at the end give us a "wink" to go with our plan to have RP.

We are lucky that my husband is in good age group and healthy enough to have RP but I would also like to say that if you can not have RP or do not want to have it, there are many radiation options for you with possibly good results also. In case you have IDC and cribriform , RP would however give you the best chance of getting rid of the cancer.

Nobody can predict the future, of course, and results are also dependent on doctor's expertise. If you decide to have RP find the best robotic surgeon you can find, possibly in center of excellence or the one who did thousands of prostatectomies.

We are now doubly reassured that our plan and our gut instincts were correct and now we can concentrate on surgery preparations, PT for pelvic floor, etc.

Thanks everybody for all of your help and advice : ))).
Bill, you are as always source of wast knowledge and ALWAYS there to help everybody and/or offer the shoulder - may the universe return that to you in multiples < 3

Wishing you all wonderful and relaxing weekend and upcoming Mother's Day ! : )))

Jump to this post

So glad to hear your radiation oncologist consultation went so well.

REPLY
Profile picture for surftohealth88 @surftohealth88

Just a short report about consultations since I am sure there would be perhaps similar patients in the future and might need some prospective and help in making decisions.

Meeting went great ! I was impressed with not only doctor's expertise but also with his honesty and genuine care. Radiologist took time ahead of the meeting to study our particular case and made detailed plan and program for treatment with 3 possible protocols using different radiation techniques. Since my husband has cribriform and IDC the most aggressive approach was deemed as one that would give the best results (radiation + ADT + one maxi brachi hit in the single spot with IDC using probes). The aggressive features of IDC and cribriform require aggressive approach. BUT - there is only one approach that is even more "aggressive" toward IDC and that is RP.

I can not express my gratitude to this doctor who put my husband's interest ahead of everything else and who spent 40 minutes presenting ALL of the options in every possible detail just to basically at the end give us a "wink" to go with our plan to have RP.

We are lucky that my husband is in good age group and healthy enough to have RP but I would also like to say that if you can not have RP or do not want to have it, there are many radiation options for you with possibly good results also. In case you have IDC and cribriform , RP would however give you the best chance of getting rid of the cancer.

Nobody can predict the future, of course, and results are also dependent on doctor's expertise. If you decide to have RP find the best robotic surgeon you can find, possibly in center of excellence or the one who did thousands of prostatectomies.

We are now doubly reassured that our plan and our gut instincts were correct and now we can concentrate on surgery preparations, PT for pelvic floor, etc.

Thanks everybody for all of your help and advice : ))).
Bill, you are as always source of wast knowledge and ALWAYS there to help everybody and/or offer the shoulder - may the universe return that to you in multiples < 3

Wishing you all wonderful and relaxing weekend and upcoming Mother's Day ! : )))

Jump to this post

Very happy for you two to have had such a positive dialogue and to have found an RO that you feel good about, should you ever need one. Wishiing you continued success as you pursue a curative therapy!
Bill

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Profile picture for kenk1962 @kenk1962

I am a 63 year old, 8.1 PSA, Gleason 4+3 "unfavorable intermediate risk" patient. Only one biopsy core positive had Gleason 4+3, but I also had eight other positive cores with Gleason 3+4. No IDC or Cribriform which I acknowledge are more problematic, but my Gleason 4+3 core did touch the outer perimeter of my prostate.

I chose SBRT radiation for my treatment primarily because the 4+3 core was in contact with the outer perimeter. This concerned me because it seemed reasonably likely my 4+3 core could have some microscopic escape from the prostate into the surrounding tissues. If so, then I believe the SBRT radiation will take care of this while radiating the entire prostate.

However...if my cancer did not contact the outer perimeter of my prostate, then I probably would have selected RP surgery instead of radiation.

I'm cheering for you. Best wishes.

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I do hope that your Dr is totally honest about RP. Most Are not. You are very likely to have both ED and incontinence post RP. I have been through the "grinder' as to treatments. Myself, RP 5/2019 then SBRT then the continuing horrible, in my case, side effects of ADT. What my life was before all this is ruined and now gone forever and I still struggle to find who or what I've become. PC really messes with ones' mind and general outlook on life for sure.
SW

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Profile picture for laccoameno5 @laccoameno5

I do hope that your Dr is totally honest about RP. Most Are not. You are very likely to have both ED and incontinence post RP. I have been through the "grinder' as to treatments. Myself, RP 5/2019 then SBRT then the continuing horrible, in my case, side effects of ADT. What my life was before all this is ruined and now gone forever and I still struggle to find who or what I've become. PC really messes with ones' mind and general outlook on life for sure.
SW

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SW: Gosh...so sorry to learn of your situation.

For what it's worth, I have been reading about metastatic patients reporting significant ADT-symptom relief using Bipolar Androgen Deprivation Treatment (frequently abbreviated "BAT").

How does BAT work? It my understanding BAT involves a quite large testosterone cypionate dose (200 to 300 mg) on day #1. With a 7- to 8-day testosterone cypionate half-life, only about 25% of the testosterone remains after two weeks. PC patients report feeling very good during this first two-week period. Then testosterone levels continue dropping during the next two to three weeks ending with the patient close to or at castrate level. After the 28- to 35-day cycle is over another large testosterone cypionate injection is administered and a new cycle begins again at day #1.

So patients report feeling quite well about 40% of the time under a BAT regime while keeping their PC in check. Yes, admittedly counterintuitive for managing PC, but I read favorable things about it. Seems like something that might provide a welcome "quality of life" improvement for you.

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Profile picture for kenk1962 @kenk1962

I am a 63 year old, 8.1 PSA, Gleason 4+3 "unfavorable intermediate risk" patient. Only one biopsy core positive had Gleason 4+3, but I also had eight other positive cores with Gleason 3+4. No IDC or Cribriform which I acknowledge are more problematic, but my Gleason 4+3 core did touch the outer perimeter of my prostate.

I chose SBRT radiation for my treatment primarily because the 4+3 core was in contact with the outer perimeter. This concerned me because it seemed reasonably likely my 4+3 core could have some microscopic escape from the prostate into the surrounding tissues. If so, then I believe the SBRT radiation will take care of this while radiating the entire prostate.

However...if my cancer did not contact the outer perimeter of my prostate, then I probably would have selected RP surgery instead of radiation.

I'm cheering for you. Best wishes.

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Correct choice. Lol

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Yes, but one has to look at individual presentation to make valid decision.

My husband is basically none of the "standard" groups used for that diagram. For example, his PSA was 7.6 (now 5.2), he has low tumor burden BUT he is actually "unfavorable intermediate" because he has IDC and cribriform present. IDC and cribriform are the one that put him in high risk so he has to have aggressive approach, regardless of the fact that it is one singe core in the whole prostate with gleason 7.

On the other hand, because he has one single core with that presentation and because his cancer is one singe spot contained inside the gland RP is by both experts deemed as curative in his case. Yes, they both said "curative" for RP. I even asked about "salvage" radiation and RO told me "nah, I do not think he will need that". I was surprised, but hey, was nice to hear it. IDC and cribriform sometimes show resilience to radiation so to choose radiation as the first step would not warrant complete eradication no matter what any diagram shows.

Only time will tell if RP was "curative". One has to choose the step that is "the best at the moment" and at the moment for his particular case RP is the recommended path.

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