Please send Membership Card
Comments
-
Still considering surgery?Both Correct
You are both corrrect: the clinically appropriate options are narrowing, but I still have to make a final judgement between rad options and surgery. I see a urology surgeon on the 11th. States he has done hundreds of laproscopic RPs wih good outcomes. I will make the final call within a few days of speaking with the surgeon. I asked the radiation oncologist what salvage therapy is availabe if the IGRT should relapse years later, and he said "Hormonal." Is hormonal curative, or just a palliative treatment ?
Max
Still considering surgery? Interesting . . .
The option after failed surgery is radiation and hormone therapy. Why bother w/surgery & the risks involved when you can get a radiation treatment as effective w/o the same risks?
If radiation fails, further additional radiation treatment may be possible as well as adjunct hormone therapy if need be. Surgery is also a consideration after failed radition but usually isn't chosen because of the difficulty in the procedure & the associated risks involved.
Good luck whatever you decide!
0 -
Excellent perspectiveMore Thought
Thanks for the updates, Old Salt and Swingshift. Not only do we have to sort these decisions out beforehand, but we have to be OK with them afterward. Or at least live with them.
I re-read the chapters in Dr. Scardino's Prostate Book regarding choosing a treatment and the pros and cons of each, and find that he has not only profound technical expertiste, but a lot of common sense and appreciation for how hard these decisions are. He writes in several locations that there is almost never only one good decision available. Re-reading the Active Surveillance chaper I was struck at how I had overinterpreted when he advises againt it, and it is clearly reasonable in my case.
His reasons for why the men opt against it reads almost verbatim with some of what SwingshiftWorker just posted: Peace of mind, the idea that a guy would rather have the disease gone than live in worry, although everyone worries anyway. The doc also mentions that a significant percentage of men who begin AS later opt for radiation or surgery, even with no worsening of their annual surveillance results (30% within five yeas). They just sort of "lose their nerve." I understand that, and that still leaves AS as a valuable tool during the time they utilized it. His main negative toward AS is that it may be quite hard to know when to transition to a curative therapy, and in some cases the window of opportunity for cure might slip by.
I tend toward anxiety and worry anyway, and as I have stated, will choose between radiation or surgery, after I talk to very experienced practicioners of each. I have ruled out Brachytherapy, although he says it s often a reasonable option in indolent disease, but adds it is counter-indicated for men with significant flow problems, such as I have had for several years now. The doc further states that these decisions should include family (Vasco mentioned this recently also), and my wife is just not comfortable with AS.
Swing, you mentioned the anxiety of follow up tests for wellness. After several years at the Lymphoma Board, I must say that that is probably the most common issue discussed there; what I call Relapse Anxiety. It is just a universal thing, but diminshes with time. I do not believe it ever goes away totally. Another attribute of the evil known as cancer.
Please keep those thoughts coming folks,
max
As you already know, there are several options to 'manage' your situation (Gleason = 6). Pick the one that you (and your spouse) are most comfortable with, after doing as much homework as you can stomach.
I would like to point out that reading the personal experiences on forums such as this is interesting, but doesn't give a statistically valid picture of the success, or failure, of various treatments. The reason being, that patients with successful outcomes usually do not report their stories. They are enjoying life.
Doctors are supposed to present a more balanced picture of the alternatives for someone like you, but some of them are gung-ho on whatever method they practice routinely and may not give you a proper perspective of alternative methods. For instance, some won't mention SBRT because they prefer (and have access to) the more expensive IMRT methodology. Some urologists will point their patients towards surgery and may not, or barely mention radiation options.
In this context, a forum such as this with non-expert opinions does offer the advantage that it is likely that different options to address the many forms of prostate cancer will be mentioned.
PS: I concur that a second opinion on the pathology slides from the biopsy is advisable.
0 -
HT is palliativeBoth Correct
You are both corrrect: the clinically appropriate options are narrowing, but I still have to make a final judgement between rad options and surgery. I see a urology surgeon on the 11th. States he has done hundreds of laproscopic RPs wih good outcomes. I will make the final call within a few days of speaking with the surgeon. I asked the radiation oncologist what salvage therapy is availabe if the IGRT should relapse years later, and he said "Hormonal." Is hormonal curative, or just a palliative treatment ?
Max
To my knowledge, hormone treatment is palliative. Unfortunately, at some point, the cancer may become independent of testosterone and the hormone therapy won't work any more; your cancer has become 'castrate resistant'. Several treatment options are available at that point and more are coming along, it appears.
0 -
DecisionOld Salt said:HT is palliative
To my knowledge, hormone treatment is palliative. Unfortunately, at some point, the cancer may become independent of testosterone and the hormone therapy won't work any more; your cancer has become 'castrate resistant'. Several treatment options are available at that point and more are coming along, it appears.
Hey guys (and to the many wifes who read and write here),
Since my last post my wife and I visited a Pca surgeon to discuss RP. I also called my old medical oncologist to hear his thoughts in my particular case both for and against both RT and RP. He has been since Day 1 in my Hodgkin's journey a source of comfort to me. Since I am in long-term-followup with him, he did not require a consultation, and actually gave me a call on the phone.
Decision: The IGRT described above. Quite low probability of relapse, no need to be cut. Chances of rectal or bladder secondary cancers being caused <2%. 2 Gr each in 38 sessions, for a total of 76 Gr. Based upon the general guidelines in Dr. Scardino's Prostate Book , this or RP were my best available choices. Five year cancer-free rates for first-line IGRT and RP are virtually identical now in the best academic studies. All four doctors with whom I spoke agreed that seed RT was not an option, due to UT issues, and a relatively large gland. My clinic now has Calyspo, but I chose to not add that form of Guidance.
Treatment "Planning CT" in January, and then begin treatments a week thereafter. Any thoughts welcome, as always. A blessed holiday season to all,
max
0 -
Good Luck!Decision
Hey guys (and to the many wifes who read and write here),
Since my last post my wife and I visited a Pca surgeon to discuss RP. I also called my old medical oncologist to hear his thoughts in my particular case both for and against both RT and RP. He has been since Day 1 in my Hodgkin's journey a source of comfort to me. Since I am in long-term-followup with him, he did not require a consultation, and actually gave me a call on the phone.
Decision: The IGRT described above. Quite low probability of relapse, no need to be cut. Chances of rectal or bladder secondary cancers being caused <2%. 2 Gr each in 38 sessions, for a total of 76 Gr. Based upon the general guidelines in Dr. Scardino's Prostate Book , this or RP were my best available choices. Five year cancer-free rates for first-line IGRT and RP are virtually identical now in the best academic studies. All four doctors with whom I spoke agreed that seed RT was not an option, due to UT issues, and a relatively large gland. My clinic now has Calyspo, but I chose to not add that form of Guidance.
Treatment "Planning CT" in January, and then begin treatments a week thereafter. Any thoughts welcome, as always. A blessed holiday season to all,
max
Did you mean that RP was NOT an option because of UT issues? Assume so. Good luck w/the IGRT treatments! Keep us informed about your progress. Take care.
0 -
thanks, sswSwingshiftworker said:Good Luck!
Did you mean that RP was NOT an option because of UT issues? Assume so. Good luck w/the IGRT treatments! Keep us informed about your progress. Take care.
All of the doctors I spoke with agreed that surgical removal (RP) is actually the best option when flow problems are an issue; the surgeon said with the gland cut out I would pee like never before ! All also agreed that Brachytherapy was impossible due to these BPH symptoms. But, the radiation oncologist said that the IGRT should work very well, even with the BPH, and that is the choice I made.
Thank you for your wishes,
Max
0 -
Good decision (from my non-expert perspective)Decision
Hey guys (and to the many wifes who read and write here),
Since my last post my wife and I visited a Pca surgeon to discuss RP. I also called my old medical oncologist to hear his thoughts in my particular case both for and against both RT and RP. He has been since Day 1 in my Hodgkin's journey a source of comfort to me. Since I am in long-term-followup with him, he did not require a consultation, and actually gave me a call on the phone.
Decision: The IGRT described above. Quite low probability of relapse, no need to be cut. Chances of rectal or bladder secondary cancers being caused <2%. 2 Gr each in 38 sessions, for a total of 76 Gr. Based upon the general guidelines in Dr. Scardino's Prostate Book , this or RP were my best available choices. Five year cancer-free rates for first-line IGRT and RP are virtually identical now in the best academic studies. All four doctors with whom I spoke agreed that seed RT was not an option, due to UT issues, and a relatively large gland. My clinic now has Calyspo, but I chose to not add that form of Guidance.
Treatment "Planning CT" in January, and then begin treatments a week thereafter. Any thoughts welcome, as always. A blessed holiday season to all,
max
'Congratulations' doesn't quite seem like the right word, but you have come to a thoughtful decision. I wish you strength as you move forward.
Protocols for IGRT vary from institution to institution (diet, bladder full, or not, etc). I am sure you will be told what to do (and what not to do) to minimize problems.
0 -
some specificsOld Salt said:Good decision (from my non-expert perspective)
'Congratulations' doesn't quite seem like the right word, but you have come to a thoughtful decision. I wish you strength as you move forward.
Protocols for IGRT vary from institution to institution (diet, bladder full, or not, etc). I am sure you will be told what to do (and what not to do) to minimize problems.
Thanks Old Salt. I will share what I learn when I learn it. I do not begin until January though. My frst step will be the "planning CT" which treatment is designed around.
Max
0 -
What to avoid or include
Maybe you can use this period while waiting to research about the RT procedure and what you may gain by avoiding some “items” in the planning. You should be involved in the planning and discuss with the radiologist about what you might want to avoid with no prejudice to the therapy’s final purposes. Some physicians do not include the lymph nodes in the protocol but these are the areas at risk for metastases and latter recurrence.
Everything starts with the CT to “design” the isodose curves, angles of attack and the scope of the irradiation field. It will be now that the radiologist will make the decision and such can vary if one wants it.
Most probably in your low risk case, the focus will be the gland alone. They may even avoid regions in the gland that were not identified with cancer in the biopsy, or the whole of the seminal vesicles.You are not an expert on the matter so that you must trust the radiologist but you will be the one risking the consequences. It doesn’t hurt to have a conversation with him on the matter. You can also inquire about preparedness affairs; what to eat or avoid, etc, which drugs he recommends to counter the side effects, etc. The risk to lose the fertility is high in RT, so that one should be prepared if he wants to have assurances for fathering a child. Many physicians recommend patients to stop taking supplements (antioxidants, etc).
http://csn.cancer.org/node/289301
http://www.pcf.org/site/c.leJRIROrEpH/b.5837043/k.B194/Loss_of_Fertility.htm
You are in my thoughts.
Best wishes and luck in your journey.
VGama
0 -
YesVascodaGama said:What to avoid or include
Maybe you can use this period while waiting to research about the RT procedure and what you may gain by avoiding some “items” in the planning. You should be involved in the planning and discuss with the radiologist about what you might want to avoid with no prejudice to the therapy’s final purposes. Some physicians do not include the lymph nodes in the protocol but these are the areas at risk for metastases and latter recurrence.
Everything starts with the CT to “design” the isodose curves, angles of attack and the scope of the irradiation field. It will be now that the radiologist will make the decision and such can vary if one wants it.
Most probably in your low risk case, the focus will be the gland alone. They may even avoid regions in the gland that were not identified with cancer in the biopsy, or the whole of the seminal vesicles.You are not an expert on the matter so that you must trust the radiologist but you will be the one risking the consequences. It doesn’t hurt to have a conversation with him on the matter. You can also inquire about preparedness affairs; what to eat or avoid, etc, which drugs he recommends to counter the side effects, etc. The risk to lose the fertility is high in RT, so that one should be prepared if he wants to have assurances for fathering a child. Many physicians recommend patients to stop taking supplements (antioxidants, etc).
http://csn.cancer.org/node/289301
http://www.pcf.org/site/c.leJRIROrEpH/b.5837043/k.B194/Loss_of_Fertility.htm
You are in my thoughts.
Best wishes and luck in your journey.
VGama
I will read and act upon all that you have forwarded here, Vasco. What you have been doing for the men here for years is priceless....
max
0 -
Max,I wish you well. PleaseYes
I will read and act upon all that you have forwarded here, Vasco. What you have been doing for the men here for years is priceless....
max
Max,
I wish you well. Please keep in touch, and let us know your progress. Good thoughts for you and yours.
Best,
Hopeful
PS Use of Avodart before radation can reduce the size of the prostate and make things a little easier(urination during treatment). You may wish to discuss this with the doc.
0 -
The truthhopeful and optimistic said:Max,I wish you well. Please
Max,
I wish you well. Please keep in touch, and let us know your progress. Good thoughts for you and yours.
Best,
Hopeful
PS Use of Avodart before radation can reduce the size of the prostate and make things a little easier(urination during treatment). You may wish to discuss this with the doc.
I am totaly serious: the insights from all of you guys who responded here at the Board were all significant in assisting my decision, including any recommendations for surgery.
max
0 -
Ping pongThe truth
I am totaly serious: the insights from all of you guys who responded here at the Board were all significant in assisting my decision, including any recommendations for surgery.
max
I have not checked in here for several weeks, and want to give a little update.
First, please don't think me lacking in resolve, but some time back I cancelled the RT and scheduled for RP. I had not even been for a planning CT, so there was not an insurance or money issued involved. The surgery is set for January 28. I have been to a training session for the pelvic floor exercises ("Kegel") to assist in continence after the removal.
I had a couple of reasons for the decision. The main one is a continuing, serious flow issue, which the surgeon assured me the removal would solve. This makes sense of course. I have read of RT occasionally worsening this situation.
A second, perhaps related issue is my chronic prostatitis ("chronic prostatitis/ chronic pelvic pain syndrom ['cp/cpps'], Category III) and associated pain. There is not a lot of information readily available about how, of if, radiation would affect this. Like most chronic prostatitis mine never tests positive for any bacteria, and is unreactive to antibiotics. I have done the Cipro thing several times in the past few years with no success. But my biopsy did show "chronic inflammatory tissue."
The pain has worsened for no known reason over the last month or so. I called the surgeon last week to ask about trying antibiotics or pain meds, and he said he would prefer to not give me either before surgery, but why the nurse did not explain. He recommended just continuing with Motrin or the like for the present. Every office visit they do a routine urinalysis, and nothing has been showing up. While the pain is usually dull, I will occasionally feel a "needle prick" sensation. I know prostate cancer, especially very minor cases , does not reportedly ordinarily cause pain, so I am wondering if this sound like symptoms of chronic prostatitis worsening. Not wanting to get into "TMI," I have also on occasion had serious pain during sex. Never common, but on those few cases it was bad.
If any of you have been through anything similiar before treatment, I would be interested to hear about what was determined. Needle stabbing sensations, perhaps once a week. Sometimes fairly marked, but always instantaneous, and then gone. I have never had two of these episodes back-to-back, or even in the same day. Another possibility I will float is this: We all know of biopsy "false negatives," but I have read that post surgery it is not too uncommon for the lab to discover that there was significantly more disease present than the biopsy results indicated. Has anyone experienced that also ? A friend is 72, and during his first biopsy about four years ago he had one positive core, unsure of the percentage. He went on AS, and his second biopsy was negative for any cancer in all 12 cores. So, missing disease (we all know) does happen. His PSA is not rising and has never been over a 4, and the doctor said he sees no need to do any more biopsies unless his PSA begins to climb, which so far it has not. Personal note: when I was having my biopsy, after the 11th corer was drawn, the gun malfunctioned. I had to lie there on the table while a nurse went to get a tech to come into the room and "fix" it, whatever the problem was. I was about ready to ask the doctor to just be done with it and forget the 12th core, but it was drawn. My one positive core was #12.
Wish me luck. At least I will have the Holidays still in one piece !
max
0 -
Best wishesPing pong
I have not checked in here for several weeks, and want to give a little update.
First, please don't think me lacking in resolve, but some time back I cancelled the RT and scheduled for RP. I had not even been for a planning CT, so there was not an insurance or money issued involved. The surgery is set for January 28. I have been to a training session for the pelvic floor exercises ("Kegel") to assist in continence after the removal.
I had a couple of reasons for the decision. The main one is a continuing, serious flow issue, which the surgeon assured me the removal would solve. This makes sense of course. I have read of RT occasionally worsening this situation.
A second, perhaps related issue is my chronic prostatitis ("chronic prostatitis/ chronic pelvic pain syndrom ['cp/cpps'], Category III) and associated pain. There is not a lot of information readily available about how, of if, radiation would affect this. Like most chronic prostatitis mine never tests positive for any bacteria, and is unreactive to antibiotics. I have done the Cipro thing several times in the past few years with no success. But my biopsy did show "chronic inflammatory tissue."
The pain has worsened for no known reason over the last month or so. I called the surgeon last week to ask about trying antibiotics or pain meds, and he said he would prefer to not give me either before surgery, but why the nurse did not explain. He recommended just continuing with Motrin or the like for the present. Every office visit they do a routine urinalysis, and nothing has been showing up. While the pain is usually dull, I will occasionally feel a "needle prick" sensation. I know prostate cancer, especially very minor cases , does not reportedly ordinarily cause pain, so I am wondering if this sound like symptoms of chronic prostatitis worsening. Not wanting to get into "TMI," I have also on occasion had serious pain during sex. Never common, but on those few cases it was bad.
If any of you have been through anything similiar before treatment, I would be interested to hear about what was determined. Needle stabbing sensations, perhaps once a week. Sometimes fairly marked, but always instantaneous, and then gone. I have never had two of these episodes back-to-back, or even in the same day. Another possibility I will float is this: We all know of biopsy "false negatives," but I have read that post surgery it is not too uncommon for the lab to discover that there was significantly more disease present than the biopsy results indicated. Has anyone experienced that also ? A friend is 72, and during his first biopsy about four years ago he had one positive core, unsure of the percentage. He went on AS, and his second biopsy was negative for any cancer in all 12 cores. So, missing disease (we all know) does happen. His PSA is not rising and has never been over a 4, and the doctor said he sees no need to do any more biopsies unless his PSA begins to climb, which so far it has not. Personal note: when I was having my biopsy, after the 11th corer was drawn, the gun malfunctioned. I had to lie there on the table while a nurse went to get a tech to come into the room and "fix" it, whatever the problem was. I was about ready to ask the doctor to just be done with it and forget the 12th core, but it was drawn. My one positive core was #12.
Wish me luck. At least I will have the Holidays still in one piece !
max
Max,
In answer to you question, my post surgery gleason was the same as my pre surgery gleason;however, the Cancer was found in more of the Prostate then originally thought.
You discussed the flow issue. For me, one of the benefits of the surgery was increased flow. I can now empty my bladder in a few seconds .... no more standing at the urinal for minutes! Also, no more getting up several times during the night. I had no problem with leakage after the operation .... I did not use a single pad or diaper. I do think the Kegels helped. For the two or three months leading up to the operation, I did them several times a day. I did them when I walked, when I watched TV, etc. etc.
Hope everything works out for you. Good luck as you move forward!
0 -
Good luck!Ping pong
I have not checked in here for several weeks, and want to give a little update.
First, please don't think me lacking in resolve, but some time back I cancelled the RT and scheduled for RP. I had not even been for a planning CT, so there was not an insurance or money issued involved. The surgery is set for January 28. I have been to a training session for the pelvic floor exercises ("Kegel") to assist in continence after the removal.
I had a couple of reasons for the decision. The main one is a continuing, serious flow issue, which the surgeon assured me the removal would solve. This makes sense of course. I have read of RT occasionally worsening this situation.
A second, perhaps related issue is my chronic prostatitis ("chronic prostatitis/ chronic pelvic pain syndrom ['cp/cpps'], Category III) and associated pain. There is not a lot of information readily available about how, of if, radiation would affect this. Like most chronic prostatitis mine never tests positive for any bacteria, and is unreactive to antibiotics. I have done the Cipro thing several times in the past few years with no success. But my biopsy did show "chronic inflammatory tissue."
The pain has worsened for no known reason over the last month or so. I called the surgeon last week to ask about trying antibiotics or pain meds, and he said he would prefer to not give me either before surgery, but why the nurse did not explain. He recommended just continuing with Motrin or the like for the present. Every office visit they do a routine urinalysis, and nothing has been showing up. While the pain is usually dull, I will occasionally feel a "needle prick" sensation. I know prostate cancer, especially very minor cases , does not reportedly ordinarily cause pain, so I am wondering if this sound like symptoms of chronic prostatitis worsening. Not wanting to get into "TMI," I have also on occasion had serious pain during sex. Never common, but on those few cases it was bad.
If any of you have been through anything similiar before treatment, I would be interested to hear about what was determined. Needle stabbing sensations, perhaps once a week. Sometimes fairly marked, but always instantaneous, and then gone. I have never had two of these episodes back-to-back, or even in the same day. Another possibility I will float is this: We all know of biopsy "false negatives," but I have read that post surgery it is not too uncommon for the lab to discover that there was significantly more disease present than the biopsy results indicated. Has anyone experienced that also ? A friend is 72, and during his first biopsy about four years ago he had one positive core, unsure of the percentage. He went on AS, and his second biopsy was negative for any cancer in all 12 cores. So, missing disease (we all know) does happen. His PSA is not rising and has never been over a 4, and the doctor said he sees no need to do any more biopsies unless his PSA begins to climb, which so far it has not. Personal note: when I was having my biopsy, after the 11th corer was drawn, the gun malfunctioned. I had to lie there on the table while a nurse went to get a tech to come into the room and "fix" it, whatever the problem was. I was about ready to ask the doctor to just be done with it and forget the 12th core, but it was drawn. My one positive core was #12.
Wish me luck. At least I will have the Holidays still in one piece !
max
I, of course, wish you luck w/your decision to go w/surgery instead of radiation.
Although I think you may regret it in terms of urinary flow, because instead of low flow you may end up w/unlimited flow, you obviously took a lot of time and put a lot of thought into making the choice that you thought would be best for you. I hope that it works out as planned.
Please keep us informed of your post-surgical progress.
0 -
Wednesday MorningBeau2 said:Best wishes
Max,
In answer to you question, my post surgery gleason was the same as my pre surgery gleason;however, the Cancer was found in more of the Prostate then originally thought.
You discussed the flow issue. For me, one of the benefits of the surgery was increased flow. I can now empty my bladder in a few seconds .... no more standing at the urinal for minutes! Also, no more getting up several times during the night. I had no problem with leakage after the operation .... I did not use a single pad or diaper. I do think the Kegels helped. For the two or three months leading up to the operation, I did them several times a day. I did them when I walked, when I watched TV, etc. etc.
Hope everything works out for you. Good luck as you move forward!
The da Vinci machine starts cutting around noon tomorrow (January 28). I'lll share how this new road leads following...
max
0 -
Best wishesWednesday Morning
The da Vinci machine starts cutting around noon tomorrow (January 28). I'lll share how this new road leads following...
max
Best wishes
0 -
Good luck!Wednesday Morning
The da Vinci machine starts cutting around noon tomorrow (January 28). I'lll share how this new road leads following...
max
Hope everything works out well for you.
0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.9K Cancer specific
- 2.8K Anal Cancer
- 446 Bladder Cancer
- 309 Bone Cancers
- 1.6K Brain Cancer
- 28.5K Breast Cancer
- 398 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 13K Head and Neck Cancer
- 6.4K Kidney Cancer
- 671 Leukemia
- 794 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 237 Multiple Myeloma
- 7.1K Ovarian Cancer
- 63 Pancreatic Cancer
- 487 Peritoneal Cancer
- 5.5K Prostate Cancer
- 1.2K Rare and Other Cancers
- 540 Sarcoma
- 734 Skin Cancer
- 654 Stomach Cancer
- 191 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.9K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards