Dad doesn't know what procedure is best
Comments
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Well saidSkid Row Tom said:No second guessing ll
When I was diagnosed, I was a healthy 60 years old. I'm a non-smoker who never gets sick (missed one day of work in the last 19 years -- kidney stone), and nobody in my family has had any form of cancer. To me, the stats didn't matter much. Prostate cancer is slow growing, but it's not going away. I decided that the cancer must go. I wanted it out. I knew the possible consequences of surgery. However, I did my research (took four months between biopsy and surgery), decided on "the best" -- Johns Hopkins -- researched my doctor's background, and things looked like they were in my favor. I could stop urine in mid-stream and had absolutely no problems with ED. The doctor saved both nerve bundles and the margins were good. The weeks after surgery, I was recovering faster than the doctor anticipated. Then came the scar tissue which interfered with my urine stream. I feel the doctor (my JH surgeon) was overly aggressive in dilating me. Since that procedure, I have been totally incontinent. I don't feel I was given any guidance with ED other than a prescription for Cialis with the instructions "Take one before sex". Levitra gets things "mushy-firm", but incapable of insertion. The AUS has resolved about 95% of the incontinence issue.
Once you've been diagnosed, the road in front of you suddenly becomes more complex with many off ramps leading to dark alleys. I have chosen not to venture down the dark alleys. I've got to work with the hand I've been dealt and can't relive the past. The bottom line is, I no longer have cancer and it shows no signs of recurring. That was my goal and I achieved it. My decision was made in 2006. It's now 2010. There is better technology now, more options, and doctors with more experience with robotic surgery. I would still go with radical prostatectomy. However, I might be more inclined to choose robotic surgery.
The bottom line is, if you read a number of the posts on the CSN, treatment for prostate cancer is a real crap shoot. There are successes and failures with every type of treatment. You can't predict. There was every indication with me, that everything would return to "normal" within six months following surgery. But, at every phase, I kept reading statistics that said, "Only 3% of patients experience....". It seems like I was a "three per center" more often than not. Like my current urologist likes to say, "If you're in the 3%, you're in the 100%".
I envy all of you without problems. I should be one of you. But I'm not. The battle with cancer has left me badly injured. But I won.
Well said, Tom. Technology advances every day in this arena and what was right or best practice five years ago may not be the best course today. Hopefully, in another five or ten years the decison making process for men diagnosed with this will be much easier.0 -
irahopeful and optimistic said:choosing treatment
I also second guess the treatment that I have choosen, and think about what treatment I would need if active surveillance fails........in my opinion there are pros and cons for each treatment option......a lot of the information is gray, since we are all different from one another, and it's hard to know exactly what's going on.....i've been looking at this for a year and half, have narrowed my choices , but still do not have a concrete treatment that would be my choice.
I agree that there are lots of docs who are biased because of money , or because of the specialty that they have choosen, or who are incompetent.
Just thinking out loud now, ...that it would be beneficially to have a center that simply helps you choose a treatment type....these centers would not do any treatment, simply help you decide............I agree with Kongo that many men do not do enough research,...for various reasons........a quick decision is sometimes needed........emotional stress....do not have strong research or decision making skills, etc.
Ira
Ira,
Once you settle on an appropriate time to obtain your next biopsy (or whenever you decide to have your next biopsy), was wondering if you've considered having a targeted biopsy by the Dr in Ventura (I think you know who I am referring to) who is considered to be an expert in PCa color doppler utrasound imaging? He uses the color doppler utrasound to pinpoint the areas that show more blood flow and therefore, could be PCa, then takes the biopsy from those areas that are lit up (showing the blood flow). I know you had the MRI/MSRI in conjunction with your last targeted biopsy @ UCLA, but thought next time you might consider going outside the UCLA AS study to get another opinion. If you eventually chose this procedure, it might be interesting to compare the latest targeted biopsy results from UCLA to the one with the color doppler ultrasound. Just a suggestion. Either way, best to you.0 -
update
first I would just like to say ... I appreciate so much the candor and the help that all of you give...Ira is right there should be a center to help to decide...it gets soooo confusing..and reading other posts..yes Kongo in his white coat does a good bit getting out info...which is very helpful.
Next sorry for the delayed response...we met with a surgeon and a radiologist at foxchase in PA...but much delay on getting the lap slides to the hospital kept us waiting for real answers...they regarded the second biopsy as non inclusive...basically that the cells were not normal but not cancer...however based on the first biopsy they were willing to do surgery or radiation where they insert those gold fidicules to help with knowing exactly where to pin point the radiation treatment...
As my Father is a big man with past heart surgery and also difficult time previously doing davinci like procedure for gallbladder...this was warned that perhaps it wouldnt work...but the doc still would operate if that is what he wanted...however she also said the procedure involves 12 hours basically on your head...not sounding so great..
the radiation with these gold seed indicators would be 39 treatments...they could start..problem is the hospital is 2 hours away and no one can stay with him up there that long (you need someone to stay with you in the american society cancer home) so Dad is either considering staying some where halfway although this kind of depresses him to be away from home and friends and normal routines...
we asked about cyberknife (we watched a movie on the internet about it and were impressed) they like a doctor friend of mine here didnt think it was a good option.
Now he is thinking of going to a local cancer center that opened 2 years ago Nazha, or to the hospital which has a new cancer wing by university of penn. .....
I will be coming home again in November to go with him for his follow up with his urologist psa review etc...and then making appointments to review area centers...
So my questions...or what am I still worried about (alot
)
- Radiology centers in area...is that a bad idea...?? Are we taking convenience and the good part of being with friends too far? or has the area changed and these radiologists are also good and perhaps with fewer daily patients...maybe more patient?
- Or am I rushing everything because of the C word ? should he continue with his watchful waiting...remember the psa rose to 6 not 8 as I had first thought....
- thinking of the joy of life and the quality therein...wanting to give my Dad the most knowledgable shoulder to lean on as I can...
Thanks in advance all
PS so great that Ira and Kongo got to meet...gotta see a pic of that shirt.
wishing you all all great things and healthy reports from the docs...Sandy0 -
Local Radiation Clinicsdaughter27 said:update
first I would just like to say ... I appreciate so much the candor and the help that all of you give...Ira is right there should be a center to help to decide...it gets soooo confusing..and reading other posts..yes Kongo in his white coat does a good bit getting out info...which is very helpful.
Next sorry for the delayed response...we met with a surgeon and a radiologist at foxchase in PA...but much delay on getting the lap slides to the hospital kept us waiting for real answers...they regarded the second biopsy as non inclusive...basically that the cells were not normal but not cancer...however based on the first biopsy they were willing to do surgery or radiation where they insert those gold fidicules to help with knowing exactly where to pin point the radiation treatment...
As my Father is a big man with past heart surgery and also difficult time previously doing davinci like procedure for gallbladder...this was warned that perhaps it wouldnt work...but the doc still would operate if that is what he wanted...however she also said the procedure involves 12 hours basically on your head...not sounding so great..
the radiation with these gold seed indicators would be 39 treatments...they could start..problem is the hospital is 2 hours away and no one can stay with him up there that long (you need someone to stay with you in the american society cancer home) so Dad is either considering staying some where halfway although this kind of depresses him to be away from home and friends and normal routines...
we asked about cyberknife (we watched a movie on the internet about it and were impressed) they like a doctor friend of mine here didnt think it was a good option.
Now he is thinking of going to a local cancer center that opened 2 years ago Nazha, or to the hospital which has a new cancer wing by university of penn. .....
I will be coming home again in November to go with him for his follow up with his urologist psa review etc...and then making appointments to review area centers...
So my questions...or what am I still worried about (alot)
- Radiology centers in area...is that a bad idea...?? Are we taking convenience and the good part of being with friends too far? or has the area changed and these radiologists are also good and perhaps with fewer daily patients...maybe more patient?
- Or am I rushing everything because of the C word ? should he continue with his watchful waiting...remember the psa rose to 6 not 8 as I had first thought....
- thinking of the joy of life and the quality therein...wanting to give my Dad the most knowledgable shoulder to lean on as I can...
Thanks in advance all
PS so great that Ira and Kongo got to meet...gotta see a pic of that shirt.
wishing you all all great things and healthy reports from the docs...Sandy
I did my post-DaVinci IGRT at a stand-alone clinic that does only radiation therapy. The difference between that and the big university centers? I would check on the reputation of the doctors who do the radiation plan (they may be at a different lab or facility), and the experience of the staff.
If the equipment is modern, in order, and well maintained, the plan is good, and the techs are qualified, I would actually prefer the smaller clinic environment. I never was in a crowded room, and didn't have to fight the big-campus traffic and congestion.
Comparing to another forum member, who was in a major regional center at the same time I did mine, I found some advantages - the staff all knew me, we got along well, and had a routine that got to the point of being unspoken. That reduced my stress greatly. When there were the very few problems, the folks working with me knew they would see me a lot more, so resolving everything was even more important. This compares to a large staff that rotates such that you rarely see the same tech twice.
There was a disadvantage - one day the equipment was out of service, and we had to reschedule. In a large clinic there would likely be some intentional slack built into the schedule to cover issues like that.
Ask how many patients they have treated, and check with your doctor as to the reputation they have.
But as with all things PCa, if they did everything right, I'll never know.0 -
Biopsy142 said:Biopsy result
Others have mentioned this as well, but you need to know some more details:
How many cores were taken in the biopsy? My insurance company only pays for 6, the Dr. did 12. There are also "saturation" biopsies of many more.
How many cores were positive? That gives the Dr. some perspective of extent - 1 of 6 might be luck hitting the right spot, but 1 of 24 might mean a very small area involved.
What was the Gleason component, not the total? Gleason is measured as two numbers, with the highest % represented being first. So a 3+5=8 is better than a 5+3=8.
PSA is only an indicator. Dr. Walsh makes the point in his book that you can have a low PSA and have cancer, and a high PSA but no cancer. It is the value, age, and change rate together that are important.
Perhaps the first biopsy was a low number of cores, and now they want to get a better picture.
You don't say what options they offered (I am younger and much worse Gleason, so mine were limited, DaVinci, open surgery, or IGRT - seeds, cryo, and AS were out, HIFU and cyberknife not approved by the insurance). I could guess as a non-medical person, that they suggested IGRT/IMRT and/or seeds. My Uro. said he won't generally do surgery after 70, but that is a very case-by-case decision.
Don't panic, there is still some detail you need to glean from the reports.
I had 3 biopsies in 1 year 2 were 12 and the 3rd was saturation biopsy (40) unless they do a saturation they do not get the total picture of the prostate,At this point your dad may want a saturation to really see what is going on. Good luck0 -
Sandydaughter27 said:update
first I would just like to say ... I appreciate so much the candor and the help that all of you give...Ira is right there should be a center to help to decide...it gets soooo confusing..and reading other posts..yes Kongo in his white coat does a good bit getting out info...which is very helpful.
Next sorry for the delayed response...we met with a surgeon and a radiologist at foxchase in PA...but much delay on getting the lap slides to the hospital kept us waiting for real answers...they regarded the second biopsy as non inclusive...basically that the cells were not normal but not cancer...however based on the first biopsy they were willing to do surgery or radiation where they insert those gold fidicules to help with knowing exactly where to pin point the radiation treatment...
As my Father is a big man with past heart surgery and also difficult time previously doing davinci like procedure for gallbladder...this was warned that perhaps it wouldnt work...but the doc still would operate if that is what he wanted...however she also said the procedure involves 12 hours basically on your head...not sounding so great..
the radiation with these gold seed indicators would be 39 treatments...they could start..problem is the hospital is 2 hours away and no one can stay with him up there that long (you need someone to stay with you in the american society cancer home) so Dad is either considering staying some where halfway although this kind of depresses him to be away from home and friends and normal routines...
we asked about cyberknife (we watched a movie on the internet about it and were impressed) they like a doctor friend of mine here didnt think it was a good option.
Now he is thinking of going to a local cancer center that opened 2 years ago Nazha, or to the hospital which has a new cancer wing by university of penn. .....
I will be coming home again in November to go with him for his follow up with his urologist psa review etc...and then making appointments to review area centers...
So my questions...or what am I still worried about (alot)
- Radiology centers in area...is that a bad idea...?? Are we taking convenience and the good part of being with friends too far? or has the area changed and these radiologists are also good and perhaps with fewer daily patients...maybe more patient?
- Or am I rushing everything because of the C word ? should he continue with his watchful waiting...remember the psa rose to 6 not 8 as I had first thought....
- thinking of the joy of life and the quality therein...wanting to give my Dad the most knowledgable shoulder to lean on as I can...
Thanks in advance all
PS so great that Ira and Kongo got to meet...gotta see a pic of that shirt.
wishing you all all great things and healthy reports from the docs...Sandy
Good to hear from you again and I appreciate the difficult dilemma you're facing. From what you describe (and I understand) about your father I would think AS would be a viable way to address his condition, at least until there was something more concrete to go on than the inconclusive reading on the biopsy second opinion. Many surgeons won't operate on men over 70 for a number of reasons and adding a heart condition and heavy weight on top of that just seems like a lot of risk for what stage your father's cancer seems to be in now. You apparently have a friend who is a doctor so perhaps that advice is what you should follow, although I would be hesitant to follow that over a prostate cancer specialist just because you know them, but I understand how that can influence your decisions.
As I understand what you've described your father had a biopsy of 3+3=6 on one read and "inconclusive" on another with a PSA of six. Quality of life and maintaing his routine is very important to him. His age, weight, and heart conditon make an aggressive approach problematical. To me it seems that remaining on AS where his PSA is monitored every three months, he works to improve his diet and overall health, and considers another biopsy in a year or so to see if anything changes seems like a relatively safe approach at this point as long as he understands that a change in his conditions could prompt some sort of treatment that could be safely undertaken without causing some other emergency. Most men with these relatively low risk prostate cancer indicators have just as much longevity as those who receive treatment. Frankly, to me he seems to be at a higher risk from his weight and previous heart condition than anything prostate cancer is showing at this point. Unless the various doctors are pressing for some type of urgent treatment action now, why not just go easy for several months and see what happens?
Has your father articulated what HE wants to do?
You've really got a tough burden to shoulder here. I do hope there are some other family members who can help.0 -
I was a little surpriseddaughter27 said:update
first I would just like to say ... I appreciate so much the candor and the help that all of you give...Ira is right there should be a center to help to decide...it gets soooo confusing..and reading other posts..yes Kongo in his white coat does a good bit getting out info...which is very helpful.
Next sorry for the delayed response...we met with a surgeon and a radiologist at foxchase in PA...but much delay on getting the lap slides to the hospital kept us waiting for real answers...they regarded the second biopsy as non inclusive...basically that the cells were not normal but not cancer...however based on the first biopsy they were willing to do surgery or radiation where they insert those gold fidicules to help with knowing exactly where to pin point the radiation treatment...
As my Father is a big man with past heart surgery and also difficult time previously doing davinci like procedure for gallbladder...this was warned that perhaps it wouldnt work...but the doc still would operate if that is what he wanted...however she also said the procedure involves 12 hours basically on your head...not sounding so great..
the radiation with these gold seed indicators would be 39 treatments...they could start..problem is the hospital is 2 hours away and no one can stay with him up there that long (you need someone to stay with you in the american society cancer home) so Dad is either considering staying some where halfway although this kind of depresses him to be away from home and friends and normal routines...
we asked about cyberknife (we watched a movie on the internet about it and were impressed) they like a doctor friend of mine here didnt think it was a good option.
Now he is thinking of going to a local cancer center that opened 2 years ago Nazha, or to the hospital which has a new cancer wing by university of penn. .....
I will be coming home again in November to go with him for his follow up with his urologist psa review etc...and then making appointments to review area centers...
So my questions...or what am I still worried about (alot)
- Radiology centers in area...is that a bad idea...?? Are we taking convenience and the good part of being with friends too far? or has the area changed and these radiologists are also good and perhaps with fewer daily patients...maybe more patient?
- Or am I rushing everything because of the C word ? should he continue with his watchful waiting...remember the psa rose to 6 not 8 as I had first thought....
- thinking of the joy of life and the quality therein...wanting to give my Dad the most knowledgable shoulder to lean on as I can...
Thanks in advance all
PS so great that Ira and Kongo got to meet...gotta see a pic of that shirt.
wishing you all all great things and healthy reports from the docs...Sandy
I was a little surprised about the comment of 12 hours on your head. A patient is put into an inverted position with Davinci with the weight being on the patients Shoulders. Most cases though the surgery is 2 - 4 or perhaps 5 hours in length. I'm not sure how much of that time is in the inverted position though since the time would include prep, opening incisions, port placements, catheter placement, closing, etc. 12 hours seems a huge extreme.
As far as which option to choose remember they all have the same goal to eliminate the cancer. Kongo is correct where most doctors won't do the davinci over age 70 though I know of one man in our local support group that was age 72 (Excellent health) who had the davinci.
Thanks for posting about the progress so far.
Larry0 -
Next step142 said:Local Radiation Clinics
I did my post-DaVinci IGRT at a stand-alone clinic that does only radiation therapy. The difference between that and the big university centers? I would check on the reputation of the doctors who do the radiation plan (they may be at a different lab or facility), and the experience of the staff.
If the equipment is modern, in order, and well maintained, the plan is good, and the techs are qualified, I would actually prefer the smaller clinic environment. I never was in a crowded room, and didn't have to fight the big-campus traffic and congestion.
Comparing to another forum member, who was in a major regional center at the same time I did mine, I found some advantages - the staff all knew me, we got along well, and had a routine that got to the point of being unspoken. That reduced my stress greatly. When there were the very few problems, the folks working with me knew they would see me a lot more, so resolving everything was even more important. This compares to a large staff that rotates such that you rarely see the same tech twice.
There was a disadvantage - one day the equipment was out of service, and we had to reschedule. In a large clinic there would likely be some intentional slack built into the schedule to cover issues like that.
Ask how many patients they have treated, and check with your doctor as to the reputation they have.
But as with all things PCa, if they did everything right, I'll never know.
@142...Yes trying to do my research now on the doctors reputation....I did call and make an appointment for a consultation with one place...think what I liked about them is that seemed knowledgable and friendly...a down side was that although their equipment appeared to be much better they called it the varian trilogy...IMRT/IGRT/SRS/RPG they didnt have the gold seed markers... I will try and see what I find out about the doctor...right now I know he has 16 years experience and that he opened this center with another doctor 2 years ago (sorry if I am repeating myself can't remember what I said before)
The big plus is in what you said...they know you and this makes a big difference in how your treatment sessions feel emotionally....thanks for your input...and wish you health and happiness..
@ Kongo...think this is the big issue...do it or do nothing... guess the next PSA reading may help to clear that up either way...which is why I am planning on flying back to go with him and to the consultation...I figure even if he chooses watchful waiting for now it doesnt hurt to check out a facility.
The doctors offered surgery in fact the woman said she operated on someone 400 pounds before and that his age wasn't a factor...not sure if that means my Dad has great insurance or if despite his weight and earlier heart surgery he is a pretty vital guy. Still doing his share of hard work even though for him he doesn't like the fact he tires more easily...and yeah doing something or not seems to weigh on my mind...
he was from the beginning just take it out mentality...which seems to be his MO...turns out the doctors didnt necessarily want to give him open heart surgery...they told him he would have to get it later or may have a heart attack..and he said do it now?? that is the story I heard when I am home...so take it out is maybe a first response..also since my grandfather died at 72 from lung cancer this could also add to something he doesn;t even think of...
seems i am more worried about it than he is...thinking more like what will be will be and he is willing to do whatever...which is good...at this stage I dont think its just about wanting to stay macho in his daughters eyes but just how he feels..which is good.
No real people to help...but my Mom said she would help thought they have been divorced since I was in my 20s they get along fine and remain a kind of family because of me...so this helps...but he doesnt talk to her about solving things...
Just dont want to give him the wrong advice and side effects make his life miserable...he still has ladies chasing him so he isn't that old
Glad to hear you are well...;)
@Larry...I was totally shocked when she said 12 hours...like it was nothing...I am sure it involves prep time etc..but it seemed rather extreme....and maybe she felt a little too eager ...I got a recommondation of a doctor at another hospital if he chose to go a surgery way in the future...as they also told him that the operation would be a better success if he lost weight...but yes it is a cancer research hospital so I dont get it...
be healthy...
I will continue with the updates...thanks again for your support...not sure I would make it through this jungle of information...and emotional rollercoaster without you guys..;)0 -
Varian and PSAdaughter27 said:Next step
@142...Yes trying to do my research now on the doctors reputation....I did call and make an appointment for a consultation with one place...think what I liked about them is that seemed knowledgable and friendly...a down side was that although their equipment appeared to be much better they called it the varian trilogy...IMRT/IGRT/SRS/RPG they didnt have the gold seed markers... I will try and see what I find out about the doctor...right now I know he has 16 years experience and that he opened this center with another doctor 2 years ago (sorry if I am repeating myself can't remember what I said before)
The big plus is in what you said...they know you and this makes a big difference in how your treatment sessions feel emotionally....thanks for your input...and wish you health and happiness..
@ Kongo...think this is the big issue...do it or do nothing... guess the next PSA reading may help to clear that up either way...which is why I am planning on flying back to go with him and to the consultation...I figure even if he chooses watchful waiting for now it doesnt hurt to check out a facility.
The doctors offered surgery in fact the woman said she operated on someone 400 pounds before and that his age wasn't a factor...not sure if that means my Dad has great insurance or if despite his weight and earlier heart surgery he is a pretty vital guy. Still doing his share of hard work even though for him he doesn't like the fact he tires more easily...and yeah doing something or not seems to weigh on my mind...
he was from the beginning just take it out mentality...which seems to be his MO...turns out the doctors didnt necessarily want to give him open heart surgery...they told him he would have to get it later or may have a heart attack..and he said do it now?? that is the story I heard when I am home...so take it out is maybe a first response..also since my grandfather died at 72 from lung cancer this could also add to something he doesn;t even think of...
seems i am more worried about it than he is...thinking more like what will be will be and he is willing to do whatever...which is good...at this stage I dont think its just about wanting to stay macho in his daughters eyes but just how he feels..which is good.
No real people to help...but my Mom said she would help thought they have been divorced since I was in my 20s they get along fine and remain a kind of family because of me...so this helps...but he doesnt talk to her about solving things...
Just dont want to give him the wrong advice and side effects make his life miserable...he still has ladies chasing him so he isn't that old
Glad to hear you are well...;)
@Larry...I was totally shocked when she said 12 hours...like it was nothing...I am sure it involves prep time etc..but it seemed rather extreme....and maybe she felt a little too eager ...I got a recommondation of a doctor at another hospital if he chose to go a surgery way in the future...as they also told him that the operation would be a better success if he lost weight...but yes it is a cancer research hospital so I dont get it...
be healthy...
I will continue with the updates...thanks again for your support...not sure I would make it through this jungle of information...and emotional rollercoaster without you guys..;)
Sandy, one of the places I consulted with while deciding upon treatment used the Varian system and it is very much state of the art. Instead of fiducials, they will make two small tattoo markers to align your father to the machine and use a body mold to help stabilize the prostate. All of this is to align the machine to minimize radiation to nearby organs and tissue that they do not want to irradiate. Sometimes these machines have weight limitations. At CyberKnife, for example, the facility I used had a weight limit of 250 pounds. It's not a radiation issue, it's just that the movable table (bed) you lie on has to move and adjust itself during treatment in different degrees of axis and it wasn't designed to handle a really big guy.
When you come back and they do a follow-on PSA test, keep in mind that in men who haven't been treated (either with surgery, radiation, or some other method), PSAs tend to jump all over the place for many reasons that have nothing to do with cancer. An unusually large or hard bowel movement, a rectal exam, sex, BPH, prostatitis or whatever can cause PSA to jump up.
PSA seems to increase naturally with age and the size of the prostate, and the prostate begins to get larger as men age. So, a PSA of 6 for a man aged 70 with a larger than normal prostate, cannot really be compared to a 50-year old with a small prostate and the same PSA reading. As the prostate grows with BPH it generates more PSA that has nothing to do with cancer and when PSA is below 10, many doctors feel that you can't really tell what is causing the primary PSA reading. Perhaps one day soon they will have a better way of defining a "normal" PSA as a function of age and prostate size. In other words, I wouldn't put all the decision eggs into a single basket based on one PSA reading.
Many doctors and urological associations and even the Government are now suggesting that PSA testing may be causing more harm than good by launching unnecessary treatments, particularly for men over 70. So, just keep in mind that it is just one data point out of many that you will have to balance in your mind as you help your father reach a decision. Of course if PSA readings begin to rapidly increase to levels above 10 or greater, it certainly may be an indication that something cancerous is going on.
Many, many men have been shown to have prostate cancer cells with no indication that it is growing abnormally or will ever be a problem. Just because it was detected (or maybe not) in a biopsy doesn't mean you have to do anything. The doctors should give you a balanced opinion on courses of action versus quality of life versus expected longevity.
If you pursue any treatment other than AS, you father is going to face some degree of side effects and a decreased quality of life. At a minimum your father will have to recover from the effects of a major surgery if the prostate is removed and if chooses radiation, he runs the chance of increased urinary or sexual issues. His weight complicates things with either option. At his age watching it closely and actively managing the prescribed AS regimin may offer him the highest quality of life without diminishing future options should more worrisome symptoms develop.
I am sorry that you must deal with this pretty much on your own. I have a similar experience with an aging father-in-law (that does not involve PCa but other deteriorating health issues) but am very lucky to have a supportive family structure to share the burden.0 -
IGRTdaughter27 said:Next step
@142...Yes trying to do my research now on the doctors reputation....I did call and make an appointment for a consultation with one place...think what I liked about them is that seemed knowledgable and friendly...a down side was that although their equipment appeared to be much better they called it the varian trilogy...IMRT/IGRT/SRS/RPG they didnt have the gold seed markers... I will try and see what I find out about the doctor...right now I know he has 16 years experience and that he opened this center with another doctor 2 years ago (sorry if I am repeating myself can't remember what I said before)
The big plus is in what you said...they know you and this makes a big difference in how your treatment sessions feel emotionally....thanks for your input...and wish you health and happiness..
@ Kongo...think this is the big issue...do it or do nothing... guess the next PSA reading may help to clear that up either way...which is why I am planning on flying back to go with him and to the consultation...I figure even if he chooses watchful waiting for now it doesnt hurt to check out a facility.
The doctors offered surgery in fact the woman said she operated on someone 400 pounds before and that his age wasn't a factor...not sure if that means my Dad has great insurance or if despite his weight and earlier heart surgery he is a pretty vital guy. Still doing his share of hard work even though for him he doesn't like the fact he tires more easily...and yeah doing something or not seems to weigh on my mind...
he was from the beginning just take it out mentality...which seems to be his MO...turns out the doctors didnt necessarily want to give him open heart surgery...they told him he would have to get it later or may have a heart attack..and he said do it now?? that is the story I heard when I am home...so take it out is maybe a first response..also since my grandfather died at 72 from lung cancer this could also add to something he doesn;t even think of...
seems i am more worried about it than he is...thinking more like what will be will be and he is willing to do whatever...which is good...at this stage I dont think its just about wanting to stay macho in his daughters eyes but just how he feels..which is good.
No real people to help...but my Mom said she would help thought they have been divorced since I was in my 20s they get along fine and remain a kind of family because of me...so this helps...but he doesnt talk to her about solving things...
Just dont want to give him the wrong advice and side effects make his life miserable...he still has ladies chasing him so he isn't that old
Glad to hear you are well...;)
@Larry...I was totally shocked when she said 12 hours...like it was nothing...I am sure it involves prep time etc..but it seemed rather extreme....and maybe she felt a little too eager ...I got a recommondation of a doctor at another hospital if he chose to go a surgery way in the future...as they also told him that the operation would be a better success if he lost weight...but yes it is a cancer research hospital so I dont get it...
be healthy...
I will continue with the updates...thanks again for your support...not sure I would make it through this jungle of information...and emotional rollercoaster without you guys..;)
Daughter,
There are two variations on the markers - one is the Caylpso system, which is three miniature transponders that emit a signal when a locator panel is passed over them.
The other is a new system that I am told is the latest thing in photon IGRT - the machine does a mini-CT scan at the beginning of each session. Supposedly the radiation is a very small amount, since the CT is limited. Some techs I talked to about it said it was exciting stuff, but horribly expensive equipment, so fairly rare so far.
So the proper question is how do they manage prostate movement?
Calypso has a web page with information and locations of centers that have it.0 -
variation of markers..142 said:IGRT
Daughter,
There are two variations on the markers - one is the Caylpso system, which is three miniature transponders that emit a signal when a locator panel is passed over them.
The other is a new system that I am told is the latest thing in photon IGRT - the machine does a mini-CT scan at the beginning of each session. Supposedly the radiation is a very small amount, since the CT is limited. Some techs I talked to about it said it was exciting stuff, but horribly expensive equipment, so fairly rare so far.
So the proper question is how do they manage prostate movement?
Calypso has a web page with information and locations of centers that have it.
thanks for the info...I will check into this and also will have something I can ask when we meet with them.
On their page they list this IGRT...so perhaps it is indeed part of the process..which is hopefully a good sign.
ironically at Foxchase...when I think of it I am not so happy with them...They made us feel stupid when we talked about the film we saw on cyberknife and how it allowed for movement..the doctor was like...oh that's important for lungs we are talking about your prostate...later I found out it moves quite a bit as well..0 -
varian etalKongo said:Varian and PSA
Sandy, one of the places I consulted with while deciding upon treatment used the Varian system and it is very much state of the art. Instead of fiducials, they will make two small tattoo markers to align your father to the machine and use a body mold to help stabilize the prostate. All of this is to align the machine to minimize radiation to nearby organs and tissue that they do not want to irradiate. Sometimes these machines have weight limitations. At CyberKnife, for example, the facility I used had a weight limit of 250 pounds. It's not a radiation issue, it's just that the movable table (bed) you lie on has to move and adjust itself during treatment in different degrees of axis and it wasn't designed to handle a really big guy.
When you come back and they do a follow-on PSA test, keep in mind that in men who haven't been treated (either with surgery, radiation, or some other method), PSAs tend to jump all over the place for many reasons that have nothing to do with cancer. An unusually large or hard bowel movement, a rectal exam, sex, BPH, prostatitis or whatever can cause PSA to jump up.
PSA seems to increase naturally with age and the size of the prostate, and the prostate begins to get larger as men age. So, a PSA of 6 for a man aged 70 with a larger than normal prostate, cannot really be compared to a 50-year old with a small prostate and the same PSA reading. As the prostate grows with BPH it generates more PSA that has nothing to do with cancer and when PSA is below 10, many doctors feel that you can't really tell what is causing the primary PSA reading. Perhaps one day soon they will have a better way of defining a "normal" PSA as a function of age and prostate size. In other words, I wouldn't put all the decision eggs into a single basket based on one PSA reading.
Many doctors and urological associations and even the Government are now suggesting that PSA testing may be causing more harm than good by launching unnecessary treatments, particularly for men over 70. So, just keep in mind that it is just one data point out of many that you will have to balance in your mind as you help your father reach a decision. Of course if PSA readings begin to rapidly increase to levels above 10 or greater, it certainly may be an indication that something cancerous is going on.
Many, many men have been shown to have prostate cancer cells with no indication that it is growing abnormally or will ever be a problem. Just because it was detected (or maybe not) in a biopsy doesn't mean you have to do anything. The doctors should give you a balanced opinion on courses of action versus quality of life versus expected longevity.
If you pursue any treatment other than AS, you father is going to face some degree of side effects and a decreased quality of life. At a minimum your father will have to recover from the effects of a major surgery if the prostate is removed and if chooses radiation, he runs the chance of increased urinary or sexual issues. His weight complicates things with either option. At his age watching it closely and actively managing the prescribed AS regimin may offer him the highest quality of life without diminishing future options should more worrisome symptoms develop.
I am sorry that you must deal with this pretty much on your own. I have a similar experience with an aging father-in-law (that does not involve PCa but other deteriorating health issues) but am very lucky to have a supportive family structure to share the burden.
Kongo...
as always your post is not only informative but a breath of fresh air... I go the feeling when I made the appointment at the facility Dad got a bit nervous...I told him I just want to see it...in case it comes to that...and I think he is also wondering why I am coming home for such a short stay...
But I know that I will rest easier meeting with his urologist...although I have been to the office for paperwork and even made it a pre biopsy appointment I never met the doctor, so I would like to hear what he has to say...could be my Dad mixed up some stuff and I saw in the paperwork where the doctor tried to explain everything to my Dad for a half hour...where after my Dad said he didn't really get any advise...
He comes from the old school of thought that you should do what the doctor tells you and this doctor isnt telling him...so think it will be good for me to see this first hand...and also check out this other facility...
At present I am leaning towards advising watchful waiting given that the PSA is stable...
Will continue to keep you guys updated....next appt Nov 10..0 -
Prostate Movementdaughter27 said:variation of markers..
thanks for the info...I will check into this and also will have something I can ask when we meet with them.
On their page they list this IGRT...so perhaps it is indeed part of the process..which is hopefully a good sign.
ironically at Foxchase...when I think of it I am not so happy with them...They made us feel stupid when we talked about the film we saw on cyberknife and how it allowed for movement..the doctor was like...oh that's important for lungs we are talking about your prostate...later I found out it moves quite a bit as well..
Sandy,
The prostate moves around quite a bit and compensating for that movement is important in avoiding harmful radiation to tissue and organs that are so closely packed around the prostate gland. The prostate moves not only from respiratory effects but also as gas moves through the bowels, the bladder fills, and so forth. IMRT generally adjusts for prostate movement once a session and since each session is relatively short the potential for radiation to be delivered somewhere you don't want it (and cause potential damage) is less than earlier forms of radiation but still a possibility. (There may be some IMRT delivery systems now that check prostate position more than once a session as these techniques continue to improve almost daily) CyberKnife and other types of SBRT (Varian can also deliver SBRT) sessions last about 45 minutes to an hour. It tracks prostate movement in real time and continually adjusts its alignment to keep the radiation dosage within the targeted area. If the prostate moves beyond the limits of the machine, it shuts itself down and waits for it to move back in the target area. In my own case with CyberKnife, the machine shut down three or four times in early sessions and perhaps six or seven in the last few sessions. The radiologists told me that as the prostate gets more radiation it gets jumpier. Each shut down of the machine only lasts about 15 seconds and then it starts up again. They maintain a positioning graph of the prostate and I was surprised how much it moved throughout the procedure.
Real time tracking of prostate movement is one of the reasons why there are so few follow-on urinary or rectal side effects with this procedure. IMRT has fewer toxicity issues than earlier forms of radiation but are slightly higher that the SBRT delivery systems that track the prostate in real time. This accuracy enables the system to deliver a higher dosage which is critical to the long term effects of destroying the DNA in cancer cells.
As with all forms of radiation, there are risks of long term side effects that involve urinary, rectal, and potency issues which the doctors should carefully explain to you and your father. Since the urethra passes through the center of the prostate it absorbs radiation delivered there and although it is generally considered pretty tough tissue, there are often side effects that relate to urgency or a feeling that you have to use the toilet much more often than normal. If it occurs, this condition resolves itself on its own with a few weeks and can be treated with Flomax or OTC drugs like Advil. A more serious condition that involves scarring that closes or partially closes the urethra may result in more serious continence issues and might require a surgical intervention to repair. Rectal problems (caused by radiation to the wall of the colon that creates a blister) sometimes occur that results in loose or bloody stools. That can also be repaired with minor surgery, similar to what happens when a polyp is removed during a colonoscopy. If radiation affects a man's ability to achieve an erection, if frequently occurs two or three years following treatment and is evidenced as a gradual decline in potency. Fortunately this condition is easily treated with drugs like Viagra of Cialis. The good news here is that both IMRT and SBRT (CyberKnife) have very few instances of these side effects because of the accuracy in dose delivery. With earlier forms of radiation that involved dosing the general pelvic region there were sometimes cases of new cancers developing in the colon, testes, penis, or bladder that, when they occurred, developed fifteen or twenty years later. The newer forms of IMRT or SBRT don't show any indication of such a side effect, but of course they haven't been in place for twenty years, but given the accuracy of placing the dosage it seems unlikely that would be an issue and in your father's case, given his age, it would probably not be a factor to worry about.0 -
Kongo it would be nice ifKongo said:Prostate Movement
Sandy,
The prostate moves around quite a bit and compensating for that movement is important in avoiding harmful radiation to tissue and organs that are so closely packed around the prostate gland. The prostate moves not only from respiratory effects but also as gas moves through the bowels, the bladder fills, and so forth. IMRT generally adjusts for prostate movement once a session and since each session is relatively short the potential for radiation to be delivered somewhere you don't want it (and cause potential damage) is less than earlier forms of radiation but still a possibility. (There may be some IMRT delivery systems now that check prostate position more than once a session as these techniques continue to improve almost daily) CyberKnife and other types of SBRT (Varian can also deliver SBRT) sessions last about 45 minutes to an hour. It tracks prostate movement in real time and continually adjusts its alignment to keep the radiation dosage within the targeted area. If the prostate moves beyond the limits of the machine, it shuts itself down and waits for it to move back in the target area. In my own case with CyberKnife, the machine shut down three or four times in early sessions and perhaps six or seven in the last few sessions. The radiologists told me that as the prostate gets more radiation it gets jumpier. Each shut down of the machine only lasts about 15 seconds and then it starts up again. They maintain a positioning graph of the prostate and I was surprised how much it moved throughout the procedure.
Real time tracking of prostate movement is one of the reasons why there are so few follow-on urinary or rectal side effects with this procedure. IMRT has fewer toxicity issues than earlier forms of radiation but are slightly higher that the SBRT delivery systems that track the prostate in real time. This accuracy enables the system to deliver a higher dosage which is critical to the long term effects of destroying the DNA in cancer cells.
As with all forms of radiation, there are risks of long term side effects that involve urinary, rectal, and potency issues which the doctors should carefully explain to you and your father. Since the urethra passes through the center of the prostate it absorbs radiation delivered there and although it is generally considered pretty tough tissue, there are often side effects that relate to urgency or a feeling that you have to use the toilet much more often than normal. If it occurs, this condition resolves itself on its own with a few weeks and can be treated with Flomax or OTC drugs like Advil. A more serious condition that involves scarring that closes or partially closes the urethra may result in more serious continence issues and might require a surgical intervention to repair. Rectal problems (caused by radiation to the wall of the colon that creates a blister) sometimes occur that results in loose or bloody stools. That can also be repaired with minor surgery, similar to what happens when a polyp is removed during a colonoscopy. If radiation affects a man's ability to achieve an erection, if frequently occurs two or three years following treatment and is evidenced as a gradual decline in potency. Fortunately this condition is easily treated with drugs like Viagra of Cialis. The good news here is that both IMRT and SBRT (CyberKnife) have very few instances of these side effects because of the accuracy in dose delivery. With earlier forms of radiation that involved dosing the general pelvic region there were sometimes cases of new cancers developing in the colon, testes, penis, or bladder that, when they occurred, developed fifteen or twenty years later. The newer forms of IMRT or SBRT don't show any indication of such a side effect, but of course they haven't been in place for twenty years, but given the accuracy of placing the dosage it seems unlikely that would be an issue and in your father's case, given his age, it would probably not be a factor to worry about.
Kongo it would be nice if these statements were true but they are not and it is irresponsible of you to continue to post these types of statements….
“….The newer forms of IMRT or SBRT don't show any indication of such a side effect, but of course they haven't been in place for twenty years, but given the accuracy of placing the dosage it seems unlikely that would be an issue and in your father's case, given his age, it would probably not be a factor to worry about...” Says who? You?0 -
Deleted Postbdhilton said:Kongo it would be nice if
Kongo it would be nice if these statements were true but they are not and it is irresponsible of you to continue to post these types of statements….
“….The newer forms of IMRT or SBRT don't show any indication of such a side effect, but of course they haven't been in place for twenty years, but given the accuracy of placing the dosage it seems unlikely that would be an issue and in your father's case, given his age, it would probably not be a factor to worry about...” Says who? You?
In respect to Sandy's thread, I have deleted my response to the poster who considered my advice to Sandy "irresponsible."0 -
4 Months and countinglewvino said:I was a little surprised
I was a little surprised about the comment of 12 hours on your head. A patient is put into an inverted position with Davinci with the weight being on the patients Shoulders. Most cases though the surgery is 2 - 4 or perhaps 5 hours in length. I'm not sure how much of that time is in the inverted position though since the time would include prep, opening incisions, port placements, catheter placement, closing, etc. 12 hours seems a huge extreme.
As far as which option to choose remember they all have the same goal to eliminate the cancer. Kongo is correct where most doctors won't do the davinci over age 70 though I know of one man in our local support group that was age 72 (Excellent health) who had the davinci.
Thanks for posting about the progress so far.
Larry
That's how long this thread has been going. It's hard to believe that something hasn't been done by now.
Whether it's surgery, chemo, radiation or nothing. by now a decision should have been made. You can drive yourself nuts looking at all the options and all of them have proven success for someone.
If you're the only one working on this problem and not your dad, maybe he just doesn't want to deal with it. That's not uncommon. He Needs to decide and move on. Postponing doesn't help anything.
Good luck with some sort of decision, just please get him to commit to something. At some ages and stages. watching and waiting isn't all bad.
Personally I had DiVinci in Feb 2006 and have some issues but life didn't end and I adapted as did everyone else posting here.0 -
Hi - Am new to this site and
Hi - Am new to this site and read your entry regarding your father. Hopefully he has already gotten his treatment and is well. I sincerely hope so. If he is still considering treatments, I highly recommend the seed implants. He will be up and around mowing the lawn in two days. I am a survivor, had the seed implants in 2006 and they work! Hope this is helpful for your father. Blessings to you both.0
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