Multiple Opinions Added to the Confusion
Dad is 69 years old. Had urinary retention. PSA 144. Gleason 3 + 4 = 7 on all cores. Bone Scan and MRI all clear. On hormone treatments (just did secon round, PSA down to 17)
Last week I traveled from VA to FL to be with my dear father to go gather our second, third, and fourth opinions.
If you are newly diagnosed take note –
1. These visits are emotionally taxing and left us depleted. Put work and other obligations on hold (I thought I would work in the evenings, ha!)
2. Do not just book “facilities” to get opinions from – research and request specific doctors – I wish I did a better job of this.
Day 1/Dr. 1 (current Uro):
Told us we have 3 options 1. Just hormone treatments 2. Surgery plus hormone treatments or 3. Radiation plus hormone treatments.
He told us Dad would ALWAYS be on hormone treatments. He stated option #2 provides better quality of life providing ability to urinate (this all began w/ my dad unable to urinate and on a catheter for over 2 weeks. He IS urinating on his own again). Said #2 provides better long term survival not cure.
Did not like that he nonchalantly said he “is stage 4” even though on paper he is T2C. Did not like that he said “bone scan and MRI of pelvic area are meaningless” regardless of tests he said “he has metastatic cancer due to PSA”. Did not like he said “he will live for 5 years” (yes I want 5 years but we want lots of life beyond 5 years too. I also did not like that when I asked him if Dad should have a cardio work up to determine suitability before surgery (since he hasn’t had one in YEARS) he shrugged it off, said sure, but because he can easily walk over a mile briskly he doesn’t really need it. Generally I don’t like him. He doesn’t show much compassion and is so medical with his replies that they are very hard to understand. With that said, he has down over 3,000 surgeries.
Day 2/Dr.2/Radiation Oncologist:
Doctor believes 144 was not his true baseline PSA due to DRE 7 days before test, catheter for one full week and then pulled out hours before test, and DRE hours before test. No scientific evidence as to whether it was 50 or 90 – still high risk but probability of metastatic microscopic spread lower.
He said he is not a candidate for seeds due to entire prostate being filled with cancer and I think size. To note, size measured by MRI was 4.2 X 5.3 X 6.9.
He suggested best course of action was surgery + radiation 3 – 6 months after (once best possible urination reached). Said external beam IMRT will help rid of any remaining cancer. He would keep dad on hormone therapy but not for rest of life, maybe 1 – 2 years following treatments.
Also mentioned “5 years of life”. Although not in agreement with many things I shared that Dr. #1 has said/done thus far said he was a good surgeon. They are both in the same “umbrella” of healthcare if that matters.
Day 3/Dr. 3/Moffit/Uro:
Doctor also believed baseline PSA not accurate and not indicative of the Gleason 3 + 4=7, but it is the data we have and what we need to work off of, as he said. He was the only doctor to not view my dad at an extremely high risk, aggressive case. First doctor to focus on more of a cure result as opposed to a way to manage and keep him alive. Stated he had option or surgery OR radiation. He wants a MRI of prostate done and a Cat Scan of chest area done to further confirm no spread. If he decides on surgery he would take him of hormone treatments, they make the prostate “mushy” more difficult to operate on plus once removed want truer read on what was happening inside. If surgery is a go he would have Dad see anesthesiologist to clear him for surgery and then have him see a cardio specialist for EKG.
Overall had great “bed side manner” HOWEVER he is out of his residency and fellowship. He has done UNDER 100 surgeries…My dad is about to be 70. We can’t put our faith in someone who is still honestly learning to do such a complicated surgery correctly.
Day 4.Dr.4/Radiation Oncologist – Dr. Dattoli:
Recommend no surgery. Seeds plus external beam. Would remove off hormone treatment anywhere from 1 – 2 years due to long term side effects. Stated highest cure rates in the world. States size of gland not massive, just enlarged mostly the tumor. Cons: Long term urinary issues which he is just overcoming but may likely worsening with such radiation.
Is knowledge really powerful? No doctor really approached our discussion the way we wish it had happened. Most spent SO MUCH TIME validating their resume rather than focusing on Dad’s specific treatment and case. Dad still unsure (as well as me too) best way ahead.
Scheduled to go back to Moffit in early September to meet with head URO of department who does 2 – 3 prostate surgeries a week…maybe that is where the answer lies? Read he is incredibly compassionate and patient and speaks in a way in which you can understand.
Comments
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Frustrating...
Sounds confusing and I do not know enough about any of it to make any observations about what would be best. What I can say is this:
When I supervised the care my father received due to bladder cancer we had an amazing oncologist. He was a perfect fit for my dad and for me. He was honest, compassionate, answered our questions in detail, and was incredibly honest. My dad had a bleak outlook and it turned out that he passed much sooner than anyone could have ever predicted. Liking the oncologist, trusting him, and seeing his patience with us as we navigated a devastating diagnosis was an incredible blessing. I still pray for him and ask God to bless him in his life and practice.
We had the choice between seeking treatment from a urologist and an oncologist. I would choose a medical oncologist every single time. That may not be the right thing to do but it is what I would do.
Now I am helping advocate for my neighbor who has advanced metastatic PCa. Same group of oncologists but he has a different doctor. He's a nice enough guy but is the antithesis of the oncologist who treated my dad. He doesn't have much time for us, he doesn't answer our questions and when he does he doesn't really answer them. I feel anxious when I go in and basically I feel like I've just given up on getting any straight answers from him about my neighbors true condition. I've learned more here and doing my own research than I could ever hope to learn from him.
All that to say - pick a doctor you like and trust. Period. At the end of the day that relationship will mean more to you and your dad than just about anything else. Having that trust will give you confidence in the course of treatment your dad chooses. I'm not saying believe the doctor without doing your own research, but it is amazing to feel like you are on the same team rather than the frustation of working with someone you dislike and distrust. It sounds to me like you are being a huge help to your father and he must be very grateful to have you.
My dad chose not to continue treatment when the cure was going to destroy his quality of life and he chose to live out the time he could without further treatment that may have brought a few extra weeks/months filled with great suffering. His doctor respected that decision as did I.
It sounds like your dad has good options and I hope you can find someone who will be the best doctor for him!
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A due image exam is missing. Get a PET scan
Tinkerbell,
I agree with Grace's suggestion, pick a doctor you like and trust. In any case, we should do our researches and know the basics before consulting a physician. Some doctors may turn arrogant when the situation is complicated because they do not like getting involved in a long conversation, teaching the patient in all details. They just follow their institutions guidelines and provide the patient a diagnosis. The patient is the one to decide and chose what to do next at his own risk, and that becomes a mental breakdown as we know little on the consequences.
An informed patient gets better answers from the doctor when at consultation. The questions are also more detailed and straight to the subject in discussion. I recommend you to prepare a list of questions before any appointment even if you are meeting a doctor you like.From your descriptions I understood well each doctor’s opinion. You do not share enough data on the diagnosis so that I cannot substantiate on a recommendation but I can give you my opinion on each of the intrigues you found in each consultation.
I believe that the present doctor (Dr1) is being fair by recommending surgery due to the urinary issue. Your dad got a very large gland that may be behind his retention case, which situation may be aggravated by a blast of radiation to the area. It is common in PCa matters to try reducing the gland’s size with neoadjuvant hormonal treatment before an attack with RT, exactly because of the risk in causing retention.
I wonder about this doctor’s comment on “stage 4”. Is there any data (biopsy report, bumping DRE or image exam reports) that can lead to such diagnosis? T2C seems correct for the negative MRI you describe above, but can we trust this exam negative result? Surely the high PSA would warrant a positive image done in an MRI machine; however, large prostates typically are a cause of benign hyperplasia (BPH) that increases the PSA significantly. The amount of the serum produced by the cancer may be small and if micrometastases (commented by the radiologist) are present then the cancer would not be detected in a traditional image study. Your dad should get a PET scan (nuclear exam) with an appropriate isotope specific to prostatic cells. (You can refer to this thread as an example of a PET report; https://csn.cancer.org/node/311504)
I would assume that the Dr1 did not believe in the MRI result and has focus more in his expertise with the DRE, the high PSA and the large gland size. A reliable image exam is missing in his opinion. Even the bad practice of drawing blood for the PSA test hours after DRE and catheter’s removal would not significantly decrease the value of the serum to get it within an imaginary acceptable level to consider a contained case (the MRI result). T3 is highly probable the real clinical stage.
In regards to his statement of “he will live for 5 years”; this is also a standard term from the AUA guidelines when judging life expectancy on a patient status. If lesser than 5 years an urologist would not recommend surgery but a palliative approach. You can think this comment with the meaning of “more than 5 years”, but nobody is certain if the 5 means 20 years.
The radiologist (Dr2) reinforced the opinion for not radiating the prostate due to the urination issue and the gland’s large size. His added IMRT comment may include radiating localized lymph nodes that a surgery would not cover. Again, this is a matter that traditional image exams do not detect if the size of the cancer is small, so that they tend to recommend an attack on the LN apart from the whole gland. In fact, Dattoli (Dr4) is suggesting a similar approach increasing the attack on the gland with in situ radiation (seeds) plus IMRT to cover the whole area. Surely he would start all after decreasing the size of the gland with a neoadjuvant hormonal protocol.
The Moffit urologist (Dr3), does not trust the clinical stage (T2c) too. He wants an additional image exam that includes the chest. If such becomes positive (diagnosing your dad stage 4), then surgery would be used only to debulk the bigger tumour. Radiation may also not be practical and chemotherapy would be recommended.
I agree with you that your dad should do health checks before any intervention. The status of his heart, liver and bones are at risk for deteriorating or prohibiting a choice of therapy. A colonoscopy is advisable before any radiation for PCa because of the possibility of existing ulcerative colitis (a hidden hazard in many of us) that would influence/restrict the field of RT attack.
The hormonal treatment (ADT) started by your dad would be the preference by all doctors due to the present status (large gland, high PSA and doubtful clinical stage). Some surgeons doing open surgeries do not like to operate when the patient had ADT because of the feeling of the flesh. According to experiences, it becomes sticky and turns the dissecting of delicate parts (the sphincter, etc) more difficult.
Your last sentence shows us your mental anguish, “Dad still unsure (as well as me too) best way ahead”. In your shoes I would get a PSMA PET scan the soonest before any more drops in the PSA. That exam will unlock the mystery involving the clinical stage, will provide targets for intervention and may provide you with the peace of mind you are looking for.
I wonder if Axumin PET would do the job even with the influence of the ADT. You can inquire a radiologist doing pet scans or the company providing the isotope Axumin in here; http://www.axumin.com/An article on the subject by a famous PCa oncologist;
https://www.prostateoncology.com/2017/02/22/axumin-pet-scans-a-breakthrough-for-prostate-cancer/
Best wishes and luck in your journeys.
VGama
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You have done a nice job of
You have done a nice job of summarizing your journey so far but I'm a little confused on what's been done with MRI's. in addition to VG's inputs see if you can get a 3T ER MRI with contrast. That will get you some of the best information as to the extent of the disease. I also agree that your PSA has issues as it relates to assessing PC.
Unfortunately it's common to get sent to both a surgeon and Rad Onc and then let you fend for yourself. Later if things progress we end up with a Med Onc which can act as a quarter back. The data shows that radiation and surgery have similar outcomes in general but one can have a strong preference over the other depending on specific cases such as heart risk or urinary issues. Be thinking quality of life and not choosing a procedure that may cause many new problems ot that may cause problems with little likely improvement in the outcome.
once cases get advanced the likelyhood of consensus declines so you have to select good doctors and trust them as well as put your own spin on what sounds like the best combination of likely improvement vs side effects.
it is possible that HT is a forever thing but I am not sure that you are there yet. Also five years is given a lot once metastatic but I don't think you know that yet either. Besides many go past five years even then.
Good luck and keep us updated.
George
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Matrix
Tinkerbell,
What you have going for you is that you are obviously smart, articulate, and a quick study. You will sort this out. There are no easy options, and no options have guarantees, but there are more and less reasonable options.
I am going to comment in a very general way, ignoring many of his clinical specifics. I am not questioning whether he has had 'this scan' or 'that test.' A lot is already known. Scans for prostate cancer tumors are very limited, and very often yield false negatives: they MISS metastasis frequently. My vantage point may or may not be helpful; use it or ignore it, as you see appropriate.
Your dad almost certainly has advanced disease, aggressive. The PSA by itself establishes this. In this, I am agreeing with the "Day 1" doctor (whom you did not like), and at least one of the other doctors. Some guys will tell you that their PSA was off the chart because 'they were constipated the night before,' or 'the seat on the bus was hard,' but they are grasping, believe me. Every doctor I ever discussed PSA draws with said sex the night before would be "irrelevant." One was my surgeon, who has done 1,000 prostectomies, and who is a national authority on salvage surgery. I know that most or all of the writers here disagree with this, but even if a 150 PSA were WAY off, it would still be over 100 or thereabout. The doctor who attributed his PSA to a DRE was being ridiculous.
A very general, unofficial protocol suggests in most cases that a man with metastatic disease not undergo prostectomy surgery, unless compelling clinical factors recommend it. "Compelling clinical factors" might be severe urinary stricture, the need to "debulk," or others. But usually, surgery for first-line (initial) treatment of metastatic disease is considered a lot of agony for little return. Also, the age of around 70 is when (again, completely unofficially) surgery as first-line treatement is commonly recommended against. Many guys over 70 have benefitted from surgery, but my comment in general remains correct. I had robotic prostectomy at 59, and the experience was an a**-kicker, believe me.
However, he has had stricture issues. In his case, I find myself agreeing with the Day 1 surgeon. You may want a DIFFERENT surgeon, but removal may be advisable. Surgery will also allow some exploration, and removal of adjacent nodes and the seminal vesicles. When the gland is removed, all guessing ends: under a microscope, the exact Gleason and any escape is established.
But even if he does get surgery, curative radiation and HT are likely going to also be required. Find out what the urinary stricture was caused by. Radiation will sometimes worsen stricture.... My read is that he might best benefit from all three: Surgery, radiation, and HT.
A doctor's bedside manner ought not be determinative. I have had the best doctors of various sorts who were nerds and thoughtless in their responses, but whom I used because they were in fact the best. I find myself agreeing with essentially everything "Day 1" ("current uro") said to you,
max
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Ditto
I went through five uros until I found one I could trust... Why? Because if he is a good and godly man as well, he will line you up with the best DaVinci surgeron, or the best radiation oncologist, respecting the decision you have made, and trying to get the best outcome for your father according to the procedures you have settled on. The trouble with many uro clinics is like VdG says, they have their institutional guidelines, and try to pigeonhole patients into the procedure that the clinic's personnel are there to perform. It's not that Dr 1s advice was bad, but he will expect you to submit to the recommended procedure as performed by the personnel in his clinic or institution. That is what I have discovered on my own.
So like everybody is saying, get the other scans so you know exactly what you are dealing with, and once you get the most accurate diagnosis possible, consider every procedure available, and after you have researched the best possible procedure for his situation with the least life altering side effects, explain your decision to the most ACCOMMODATING doctor so he can line you up with the best doctors, surgeons, and oncologists in the area, and not just the "next guy" on the list at the clinic.
That is what I did. Also, no offense to the guys of other faiths, but it doesn't hurt to look for someone of the same faith so that there is a greater allegiance that a doctor aspires to, instead of allegiance to their clinic or institution.I
If course, I don't know if you are limited by his health insurance in getting the best surgeons/oncologists available. Does he have supplemental insurance with his Medicare? Radical prostatectomy DaVinci will run some $30,000. I have heard CK runs some $70,000. (?)
I was in the same boat. A super sized gland that had shut down my plumbing, and I was dealing constantly with self-catheterization (the worst), visits to the ER at weird hours to get Foley catheters. Visits to the ER at weird hours to have an infected Foley catheter removed. Cialis and Flomax daily, not knowing if I would wake up the next day heading for the ER again.
By the time my RP operation drew near, I was not afraid of the operation, I was afraid I would NOT get the operation. I did not need hormone therapy because the surgeon doing the RP was the best one we could find. But my issue was not only BPH, but also acute recurring prostatitis. So hormone therapy was not nearly as effective as attacking it with antibiotics to curb the infection to bring the size down to less than 200 grams weight. With Staph infections, they are difficult to control, and nearly impossible to eradicate.
So I can't say unequivocally that surgery is your dad's best option, but with my massive prostate, my non-aggressive Gleason 6 3+3, and nearly 100% retention, and Staph infected prostate, surgery was the only option.
But, there will be incontinence issues, especially for a 69 year old. But for me, I had a choice between pads or Foley catheters. I am betting your dad will agree, better the pads than a life with Foleys sticking out of your business.I
But you do need to do like the guys say, get scans for the most accurate information possible. Get information on all the available procedures ( you can ask the guys here and you can use the keyword search in this forum to investigate every available procedure and the pros and cons for each one) as well as recommendations from the above professionals and otherrs, then when you decide on a course of treatment, have someone line you up with the best providers available.
Your dad is really blessed to have a daughter as concerned as you.
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At "finishing grace" someFinishingGrace said:Frustrating...
Sounds confusing and I do not know enough about any of it to make any observations about what would be best. What I can say is this:
When I supervised the care my father received due to bladder cancer we had an amazing oncologist. He was a perfect fit for my dad and for me. He was honest, compassionate, answered our questions in detail, and was incredibly honest. My dad had a bleak outlook and it turned out that he passed much sooner than anyone could have ever predicted. Liking the oncologist, trusting him, and seeing his patience with us as we navigated a devastating diagnosis was an incredible blessing. I still pray for him and ask God to bless him in his life and practice.
We had the choice between seeking treatment from a urologist and an oncologist. I would choose a medical oncologist every single time. That may not be the right thing to do but it is what I would do.
Now I am helping advocate for my neighbor who has advanced metastatic PCa. Same group of oncologists but he has a different doctor. He's a nice enough guy but is the antithesis of the oncologist who treated my dad. He doesn't have much time for us, he doesn't answer our questions and when he does he doesn't really answer them. I feel anxious when I go in and basically I feel like I've just given up on getting any straight answers from him about my neighbors true condition. I've learned more here and doing my own research than I could ever hope to learn from him.
All that to say - pick a doctor you like and trust. Period. At the end of the day that relationship will mean more to you and your dad than just about anything else. Having that trust will give you confidence in the course of treatment your dad chooses. I'm not saying believe the doctor without doing your own research, but it is amazing to feel like you are on the same team rather than the frustation of working with someone you dislike and distrust. It sounds to me like you are being a huge help to your father and he must be very grateful to have you.
My dad chose not to continue treatment when the cure was going to destroy his quality of life and he chose to live out the time he could without further treatment that may have brought a few extra weeks/months filled with great suffering. His doctor respected that decision as did I.
It sounds like your dad has good options and I hope you can find someone who will be the best doctor for him!
At "finishing grace" some great feedbacks and experiences - thank you for sharing. Although talent in surgery may matter most I do think compassion and patience and general caring for the patient goes a long way in helping guide the patient towards their decisions and understanding of their treatment.
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Vascoda,VascodaGama said:A due image exam is missing. Get a PET scan
Tinkerbell,
I agree with Grace's suggestion, pick a doctor you like and trust. In any case, we should do our researches and know the basics before consulting a physician. Some doctors may turn arrogant when the situation is complicated because they do not like getting involved in a long conversation, teaching the patient in all details. They just follow their institutions guidelines and provide the patient a diagnosis. The patient is the one to decide and chose what to do next at his own risk, and that becomes a mental breakdown as we know little on the consequences.
An informed patient gets better answers from the doctor when at consultation. The questions are also more detailed and straight to the subject in discussion. I recommend you to prepare a list of questions before any appointment even if you are meeting a doctor you like.From your descriptions I understood well each doctor’s opinion. You do not share enough data on the diagnosis so that I cannot substantiate on a recommendation but I can give you my opinion on each of the intrigues you found in each consultation.
I believe that the present doctor (Dr1) is being fair by recommending surgery due to the urinary issue. Your dad got a very large gland that may be behind his retention case, which situation may be aggravated by a blast of radiation to the area. It is common in PCa matters to try reducing the gland’s size with neoadjuvant hormonal treatment before an attack with RT, exactly because of the risk in causing retention.
I wonder about this doctor’s comment on “stage 4”. Is there any data (biopsy report, bumping DRE or image exam reports) that can lead to such diagnosis? T2C seems correct for the negative MRI you describe above, but can we trust this exam negative result? Surely the high PSA would warrant a positive image done in an MRI machine; however, large prostates typically are a cause of benign hyperplasia (BPH) that increases the PSA significantly. The amount of the serum produced by the cancer may be small and if micrometastases (commented by the radiologist) are present then the cancer would not be detected in a traditional image study. Your dad should get a PET scan (nuclear exam) with an appropriate isotope specific to prostatic cells. (You can refer to this thread as an example of a PET report; https://csn.cancer.org/node/311504)
I would assume that the Dr1 did not believe in the MRI result and has focus more in his expertise with the DRE, the high PSA and the large gland size. A reliable image exam is missing in his opinion. Even the bad practice of drawing blood for the PSA test hours after DRE and catheter’s removal would not significantly decrease the value of the serum to get it within an imaginary acceptable level to consider a contained case (the MRI result). T3 is highly probable the real clinical stage.
In regards to his statement of “he will live for 5 years”; this is also a standard term from the AUA guidelines when judging life expectancy on a patient status. If lesser than 5 years an urologist would not recommend surgery but a palliative approach. You can think this comment with the meaning of “more than 5 years”, but nobody is certain if the 5 means 20 years.
The radiologist (Dr2) reinforced the opinion for not radiating the prostate due to the urination issue and the gland’s large size. His added IMRT comment may include radiating localized lymph nodes that a surgery would not cover. Again, this is a matter that traditional image exams do not detect if the size of the cancer is small, so that they tend to recommend an attack on the LN apart from the whole gland. In fact, Dattoli (Dr4) is suggesting a similar approach increasing the attack on the gland with in situ radiation (seeds) plus IMRT to cover the whole area. Surely he would start all after decreasing the size of the gland with a neoadjuvant hormonal protocol.
The Moffit urologist (Dr3), does not trust the clinical stage (T2c) too. He wants an additional image exam that includes the chest. If such becomes positive (diagnosing your dad stage 4), then surgery would be used only to debulk the bigger tumour. Radiation may also not be practical and chemotherapy would be recommended.
I agree with you that your dad should do health checks before any intervention. The status of his heart, liver and bones are at risk for deteriorating or prohibiting a choice of therapy. A colonoscopy is advisable before any radiation for PCa because of the possibility of existing ulcerative colitis (a hidden hazard in many of us) that would influence/restrict the field of RT attack.
The hormonal treatment (ADT) started by your dad would be the preference by all doctors due to the present status (large gland, high PSA and doubtful clinical stage). Some surgeons doing open surgeries do not like to operate when the patient had ADT because of the feeling of the flesh. According to experiences, it becomes sticky and turns the dissecting of delicate parts (the sphincter, etc) more difficult.
Your last sentence shows us your mental anguish, “Dad still unsure (as well as me too) best way ahead”. In your shoes I would get a PSMA PET scan the soonest before any more drops in the PSA. That exam will unlock the mystery involving the clinical stage, will provide targets for intervention and may provide you with the peace of mind you are looking for.
I wonder if Axumin PET would do the job even with the influence of the ADT. You can inquire a radiologist doing pet scans or the company providing the isotope Axumin in here; http://www.axumin.com/An article on the subject by a famous PCa oncologist;
https://www.prostateoncology.com/2017/02/22/axumin-pet-scans-a-breakthrough-for-prostate-cancer/
Best wishes and luck in your journeys.
VGama
Vascoda,
Thank you for your detailed reply! To respond and to seek more advise here is some additional information.
I always have a list of questions prepared but from the first diagnosis (the current urologist called me and gave me the news) to know my questions have gone to broad to narrow as I’ve learned more about my Dad’s specific case and more about prostate cancer in general. But good advise and I will continue down the path of Question Asking.
“you do not share enough data on the diagnosis so that I cannot substantiate on a recommendation” what other data would you be interested in knowing? I may have it.
He is on ADT and it is working. He is taking Firmagon and a week ago he had his second shot. His PSA is down from 144 to 23 (then while at Moffit for a consultation they wanted to take it again and they showed it down to 17.14). I assume the gland is shrinking as he no longer needs to self catheter. He can urinate on his own. Night time is still very frequent.
“Surely the high PSA would warrant a positive image done in an MRI machine; however, large prostates typically are a cause of benign hyperplasia (BPH) that increases the PSA significantly.” One of the doctors mentioned he has BPH + PC – not sure how he knows but he did do a DRE. Another doctor said based off all cores being positive his prostate per the MRI measurements isn’t actually that large and the size is likely due to the tumor itself. Measurements being 4.2 X 5.3 X 6.9
“Your dad should get a PET scan (nuclear exam)”. During our visit to Moffitt they requested a Cat Scan (is this the same as a PET) w/ contrast on the abdomen and pelvis area. They also asked for an MRI of the prostate. Dr. 1 isn’t actually asking for any more images…it is Moffit, Dr.3 that was asking. Dr. 1 being the doctor who is kind of curt, staged him as 4. Today’s concern is I found out Moffit is considered out of pocket so if we go to their hospital my dad would have to pay 40% of all imagery costs. I am wondering if we can ask current urologist (Dr #1) based on second opinions, if he would order the same two exams on behalf of my dad. WOULD THIS BE AN ACCEPTABLE REQUEST?
Thankyou for the explanation of this comment, it made me look at the wording differently and understanding of using the “guidelines”. In regards to his statement of “he will live for 5 years”; this is also a standard term from the AUA guidelines when judging life expectancy on a patient status. If lesser than 5 years an urologist would not recommend surgery but a palliative approach. You can think this comment with the meaning of “more than 5 years”, but nobody is certain if the 5 means 20 years
And thank you for just taking time to respond.
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Matrix, your words "You willMatrix
Tinkerbell,
What you have going for you is that you are obviously smart, articulate, and a quick study. You will sort this out. There are no easy options, and no options have guarantees, but there are more and less reasonable options.
I am going to comment in a very general way, ignoring many of his clinical specifics. I am not questioning whether he has had 'this scan' or 'that test.' A lot is already known. Scans for prostate cancer tumors are very limited, and very often yield false negatives: they MISS metastasis frequently. My vantage point may or may not be helpful; use it or ignore it, as you see appropriate.
Your dad almost certainly has advanced disease, aggressive. The PSA by itself establishes this. In this, I am agreeing with the "Day 1" doctor (whom you did not like), and at least one of the other doctors. Some guys will tell you that their PSA was off the chart because 'they were constipated the night before,' or 'the seat on the bus was hard,' but they are grasping, believe me. Every doctor I ever discussed PSA draws with said sex the night before would be "irrelevant." One was my surgeon, who has done 1,000 prostectomies, and who is a national authority on salvage surgery. I know that most or all of the writers here disagree with this, but even if a 150 PSA were WAY off, it would still be over 100 or thereabout. The doctor who attributed his PSA to a DRE was being ridiculous.
A very general, unofficial protocol suggests in most cases that a man with metastatic disease not undergo prostectomy surgery, unless compelling clinical factors recommend it. "Compelling clinical factors" might be severe urinary stricture, the need to "debulk," or others. But usually, surgery for first-line (initial) treatment of metastatic disease is considered a lot of agony for little return. Also, the age of around 70 is when (again, completely unofficially) surgery as first-line treatement is commonly recommended against. Many guys over 70 have benefitted from surgery, but my comment in general remains correct. I had robotic prostectomy at 59, and the experience was an a**-kicker, believe me.
However, he has had stricture issues. In his case, I find myself agreeing with the Day 1 surgeon. You may want a DIFFERENT surgeon, but removal may be advisable. Surgery will also allow some exploration, and removal of adjacent nodes and the seminal vesicles. When the gland is removed, all guessing ends: under a microscope, the exact Gleason and any escape is established.
But even if he does get surgery, curative radiation and HT are likely going to also be required. Find out what the urinary stricture was caused by. Radiation will sometimes worsen stricture.... My read is that he might best benefit from all three: Surgery, radiation, and HT.
A doctor's bedside manner ought not be determinative. I have had the best doctors of various sorts who were nerds and thoughtless in their responses, but whom I used because they were in fact the best. I find myself agreeing with essentially everything "Day 1" ("current uro") said to you,
max
Matrix, your words "You will sort this out." Just sent me to tears. Thank you. I feel a bit helpless right now and overwhelmed. Today I found out Moffit is "out of network" with my dad's Medicare insurance. We will still move forward seeing the head of the dept. for the consultation but likely won't be able to use him for the surgery is that is the route he decides. It just seems like there is so much to sort through, understand, and then more hiccups a long the way. I know what I am doing my dad can't. I don't fault him, but it is a lot to do and manage. He is worth it though through and through but seeing "you will sort this out" gave me hope. Thank you
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Max, to follow up - My DadMatrix
Tinkerbell,
What you have going for you is that you are obviously smart, articulate, and a quick study. You will sort this out. There are no easy options, and no options have guarantees, but there are more and less reasonable options.
I am going to comment in a very general way, ignoring many of his clinical specifics. I am not questioning whether he has had 'this scan' or 'that test.' A lot is already known. Scans for prostate cancer tumors are very limited, and very often yield false negatives: they MISS metastasis frequently. My vantage point may or may not be helpful; use it or ignore it, as you see appropriate.
Your dad almost certainly has advanced disease, aggressive. The PSA by itself establishes this. In this, I am agreeing with the "Day 1" doctor (whom you did not like), and at least one of the other doctors. Some guys will tell you that their PSA was off the chart because 'they were constipated the night before,' or 'the seat on the bus was hard,' but they are grasping, believe me. Every doctor I ever discussed PSA draws with said sex the night before would be "irrelevant." One was my surgeon, who has done 1,000 prostectomies, and who is a national authority on salvage surgery. I know that most or all of the writers here disagree with this, but even if a 150 PSA were WAY off, it would still be over 100 or thereabout. The doctor who attributed his PSA to a DRE was being ridiculous.
A very general, unofficial protocol suggests in most cases that a man with metastatic disease not undergo prostectomy surgery, unless compelling clinical factors recommend it. "Compelling clinical factors" might be severe urinary stricture, the need to "debulk," or others. But usually, surgery for first-line (initial) treatment of metastatic disease is considered a lot of agony for little return. Also, the age of around 70 is when (again, completely unofficially) surgery as first-line treatement is commonly recommended against. Many guys over 70 have benefitted from surgery, but my comment in general remains correct. I had robotic prostectomy at 59, and the experience was an a**-kicker, believe me.
However, he has had stricture issues. In his case, I find myself agreeing with the Day 1 surgeon. You may want a DIFFERENT surgeon, but removal may be advisable. Surgery will also allow some exploration, and removal of adjacent nodes and the seminal vesicles. When the gland is removed, all guessing ends: under a microscope, the exact Gleason and any escape is established.
But even if he does get surgery, curative radiation and HT are likely going to also be required. Find out what the urinary stricture was caused by. Radiation will sometimes worsen stricture.... My read is that he might best benefit from all three: Surgery, radiation, and HT.
A doctor's bedside manner ought not be determinative. I have had the best doctors of various sorts who were nerds and thoughtless in their responses, but whom I used because they were in fact the best. I find myself agreeing with essentially everything "Day 1" ("current uro") said to you,
max
Max, to follow up - My Dad agrees, if he picks surgery he wants radiation after wards even though Day 1 Dr right now is not advocating for it. We would essentally have to go out on our own to get it done, from what I understand, no collobration would occur between the doctors since seperate offices/practices/speciality areas.
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Grinder, Thank you!
Grinder, Thank you!
What does CK stand for? And yes, he has Medicare. No supplemental. To date, he has been covered well but once we talk surgery and radiation the costs will start to rise. My husband and I will help him as we can, where needed. He is my best friend, and a devoted father, he deserves all I can give him and no one else is going to do this! This is why we have daughters right? To love and be loved in times of need.
How is prostatitis diagnosed? I read a little bit about that last night too, randomly.
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Newer Info from Dr 4 - Dattoli Office
I talked to his oncology nurse today for one hour.
This is what she shared -
If my Dad goes to Dattoli there would be no surgery. His treatment plan for now based on the data we have would follow such:
1. External Radiation - DART for 7 - 8 weeks targeting prostate and likely Lymps (more fields if neccessary determined by further scans and such)
"Off for 10 days - 8 weeks depending on scheduling and size of gland, goal is to have gland shrunk down for seed implants"
2. Seed implants which would be active for 3 months
3. External Radiation for 2 weeks (block gland and treat around it for microscopic cancer)
He'd remain on HT anywhere from 1 - 2 years.
Prior to treatment they would like (insruance dependent): pathology slides to be read again in house; repeat of all the lab work; imaging at Stan Lakes a 2 day overnight stay to determine has it gone outside the capsule, something about F18 PET Scan, then color doppler imagery, bone density scan, a dental consult to determine any osteoporios or breakdown of the jaw bc some medicine they would give him can impact it, a colonoscopy and an EKG.
She said the goal is CURE. She said they regularly see and treat patients with Gleason's hire then my dad's, 8, 9, and 10s and with PSAs just as high.
No decision just passing along to keep you all updated and for those searching key words in the futre.
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ClarificationTinkerbellRM27 said:At "finishing grace" some
At "finishing grace" some great feedbacks and experiences - thank you for sharing. Although talent in surgery may matter most I do think compassion and patience and general caring for the patient goes a long way in helping guide the patient towards their decisions and understanding of their treatment.
I did not mean to suggest that hiring a talented doctor is not critical, I just believe there are plenty of medical oncologists, surgeons, urologists out there who are among the best who also aren't @ssholes.
You are a good daughter and I wish you the very best as you seek to help your dad.
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Multiple opinions, finally a decision
Tinkerbell,
You are doing it well in inquiring and trying to gather details before deciding. Keep questioning and research the net, and then prepare that List of Questions for the consultations. Discuss the matters with your dad and family too. Soon, you will want to change the title of this thread to “Multiple opinions, finally a decision".
An important missing data in your first post is the pathologist’s report on the biopsy. The report comments on the findings, for instance; existing BPH, calculi, number and location of positive cores, percentage of cancer in each core, type of cancer, classification and tertiary Gleason rate, PIN and probability of seminal vesicles involvement, etc. In any case you have posted now additional info like “all cores being positive“, which places extraprostatic extensions at high probability for existing, downplaying the T2c classification and increasing it to a T3 case. This together with the negative MRI and the Gleason score 7 (3+4) makes me to understand the micrometastases diagnose.
The info that; “He can urinate on his own. Night time is still very frequent.”, Is an indication that the prostate got smaller, but it still may be pressing up the bladder wall causing the frequency. The lower PSA due to Firmagon also indicates that his cancer is hormone dependent, a good sign that even if his case is found worse in additional testing (like PET scan) he would have a load of weapons assuring him many years of quality living as a survivor.
I am not a doctor but it seems to me that radiation therapy is a better option for treating your dad, and most probably the Dattoli suggested protocol is in fact the best. The idea is to treat into two separate zones. (1) RT of the lymph nodes and surrounded area, plus (2) the prostate, which can be done in two modalities: by RP dissecting the whole gland (including the seminal vesicles) or applying seeds RT at the delicate area close to the bladder. The intent is to avoid incontinence and scar tissue of the bladder.
Regarding the added exams, his Dr1 may not request the CT because he got already the negative MRI result. One should think that his trade is surgery; his reasoning is that the cancer is contained (T2c) so that by removing the whole gland his work is complete. A radiologist will want to have additional image exams to identify fields of attack. In your last post regarding Dr4 Dattoli’s treatment protocol, they exactly suggest a PET exam with the tracer F18 that is most appropriate for a case like your father’s. They also will continue ADT before RT as I commented initially. To such extent they may want to change Firmagon to Lupron shots that are administered every 3 to 6 months. Firmagon is only administered monthly which may be burdensome if you get treatment at a far clinic during 2 years. There are various F18 tracers so that I would request them to do it with F18 choline (Flurocholine) that is better in micrometastases including bone. F18 FDG is the common and also good if the cancer uses glucose, otherwise it could provide false negatives when the prostatic cells are under the influence of ADT.
Sticking evidence that Dattoli’s clinic is reliable is for their inclusion of a colonoscopy before the RT procedure to look for any existing ulcerative colitis that would turn the treatment into a night mare (I like to read about that). It also includes the base line procedure regarding bone health which may be affected by the long period on ADT (hormonal treatment).
Can you confirm if Dattoli’s services are all covered by your dad’s insurance? It would be like killing two birds with one stone. A proper diagnosis plus a due treatment.
I would image that you are now more composed and relaxed. Glad for you.
Best wishes,
VGama
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MoffitTinkerbellRM27 said:Max, to follow up - My Dad
Max, to follow up - My Dad agrees, if he picks surgery he wants radiation after wards even though Day 1 Dr right now is not advocating for it. We would essentally have to go out on our own to get it done, from what I understand, no collobration would occur between the doctors since seperate offices/practices/speciality areas.
Tinkerbell,
As I read your initial post, "Moffit" is the doctor from "Day 3." He was clueless, in my layman's opinion.
Regardless of healthcare, if your father has surgery, SOME provision should be made to pay for RT, if it is medically necessary. "Day 1" will know good RT partners and collaborate if required. Be aware that radiation ordinarily has to wait awhile while surgical incisions heal for a bit, but the amount of time should not be dangerous, and the pathology report from the removed gland would give information on this. There is no way a surgeon who has done several thousand DaVincis does not have a strong supporting network of other doctors available. Is he in a large hospital setting ?
Much of what is written below is to assist you as an overview, since you mentioned the Information Overload and excess of jargon that you are hearing from the doctors.....
IF it has occured (NOT yet established in your father's case), escape of the disease from the gland (termed "extracapsular escape") mostly happens along a couple of common channels: (1) It moves into the seminal vesicles, two wing shapepd glands which lie between the prostate and bladder, which is why surgeons today always remove the seminal vesicles; (2) it goes through the wall of the gland (this is related to a "positive margin"), in which case the next stop for the disease is usually adjacent lymph nodes (dubbed the "sentinel nodes"). [Note well: the way PCa is staged, a man can have a bit of cancer outside the gland in the sentinel nodes or other immediate tissue, and still be rated at Stage III, rather than Stage IV.]; (3) Perineural Escape: The cancer can exit the glan inside the nerve sheathing of the nerves that run through the gland itself. By iteslf, a biopsy showing "perineural involvement" does not mean that cancer has exited the gland, only that cancer is inside the nerve sheathing, and potentially could have done so. (4) "Other." Sometimes how or where PCa left the gland cannot be absolutely determined, and metastasis somtimes first shows in distant locations: The lungs, distant bone marrow, anywhere. This is less common, but happens.
His doctors have mentioned the "Big 3" in PCa treatments: Surgery, RT, and HT.
Be aware, if you are not already, that only two of these is curative of PCa: Surgery and Radiation. HT is never curative, but can beat back the disease dramatically, and in best-case scenarios allows seriously ill men to live meny years, even over a decade often, usually in pretty good health and with quality of life. But know that if the goal is what doctors call curative intent, then either RT or surgery must be employed. Often HT is added to either RT or surgery to assist, but by itself, HT is not curative.
For completeness I will add that the same is true of chemo as of HT: Chemo is never curative, but pallative of PCa (chemo IS of course curative of some other cancers, mostly the blood cancers, like Leukemia and Lymphoma, and is SOMETIMES curative of some organ cancers, but is simply NOT CURATIVE of PCa). And usually (there are exceptions) chemo is a last-hurrah effort, after other modalities have run their course and are no longer working. And chemo has the most severe side-effects of any treatment. I''ve known a few men personally who fought the disease about 12 years each and then when on chemo for pallative effect. It seems to give guys who are no longer on HT a year or more; combined with continuing HT, longer than that. There are a few relatively new "post chemo" drugs that are extending these times even moe (Zytiga and Jevtana).
Like "Day 1" told you, HT is in his treatment future, maybe for life. As I wrote above, I view the "Day 1" doctor as a straight-shooter who cuts to the chase and has given you good data, even if his delivery style is poor.
A reminder: Ask each doctor about the issue of serious stricture (urinary blockage), as again, this is why I agree with surgery in his case; without stricture, I would have likely leaned more toward RT, for the reasons given before.
max
As some of the guys mention on occasion, I also have no medical training, but as a former historian I learned in grad school how to read massive volumes of material with comprehension.
Many guys present here seeming very bad, and further assessment increases their chances, and they do well. With what data you have shared thus far, it is completely within the realm of possibility that he will beat this. Many regulars here have come back even from advanced Stage IV to do well and enjoy life ! St Paul wrote, We hope after hope.
.
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GoodVascodaGama said:Multiple opinions, finally a decision
Tinkerbell,
You are doing it well in inquiring and trying to gather details before deciding. Keep questioning and research the net, and then prepare that List of Questions for the consultations. Discuss the matters with your dad and family too. Soon, you will want to change the title of this thread to “Multiple opinions, finally a decision".
An important missing data in your first post is the pathologist’s report on the biopsy. The report comments on the findings, for instance; existing BPH, calculi, number and location of positive cores, percentage of cancer in each core, type of cancer, classification and tertiary Gleason rate, PIN and probability of seminal vesicles involvement, etc. In any case you have posted now additional info like “all cores being positive“, which places extraprostatic extensions at high probability for existing, downplaying the T2c classification and increasing it to a T3 case. This together with the negative MRI and the Gleason score 7 (3+4) makes me to understand the micrometastases diagnose.
The info that; “He can urinate on his own. Night time is still very frequent.”, Is an indication that the prostate got smaller, but it still may be pressing up the bladder wall causing the frequency. The lower PSA due to Firmagon also indicates that his cancer is hormone dependent, a good sign that even if his case is found worse in additional testing (like PET scan) he would have a load of weapons assuring him many years of quality living as a survivor.
I am not a doctor but it seems to me that radiation therapy is a better option for treating your dad, and most probably the Dattoli suggested protocol is in fact the best. The idea is to treat into two separate zones. (1) RT of the lymph nodes and surrounded area, plus (2) the prostate, which can be done in two modalities: by RP dissecting the whole gland (including the seminal vesicles) or applying seeds RT at the delicate area close to the bladder. The intent is to avoid incontinence and scar tissue of the bladder.
Regarding the added exams, his Dr1 may not request the CT because he got already the negative MRI result. One should think that his trade is surgery; his reasoning is that the cancer is contained (T2c) so that by removing the whole gland his work is complete. A radiologist will want to have additional image exams to identify fields of attack. In your last post regarding Dr4 Dattoli’s treatment protocol, they exactly suggest a PET exam with the tracer F18 that is most appropriate for a case like your father’s. They also will continue ADT before RT as I commented initially. To such extent they may want to change Firmagon to Lupron shots that are administered every 3 to 6 months. Firmagon is only administered monthly which may be burdensome if you get treatment at a far clinic during 2 years. There are various F18 tracers so that I would request them to do it with F18 choline (Flurocholine) that is better in micrometastases including bone. F18 FDG is the common and also good if the cancer uses glucose, otherwise it could provide false negatives when the prostatic cells are under the influence of ADT.
Sticking evidence that Dattoli’s clinic is reliable is for their inclusion of a colonoscopy before the RT procedure to look for any existing ulcerative colitis that would turn the treatment into a night mare (I like to read about that). It also includes the base line procedure regarding bone health which may be affected by the long period on ADT (hormonal treatment).
Can you confirm if Dattoli’s services are all covered by your dad’s insurance? It would be like killing two birds with one stone. A proper diagnosis plus a due treatment.
I would image that you are now more composed and relaxed. Glad for you.
Best wishes,
VGama
I agree with Vasco that the Dattoli plan seems sound and certainly detailed. As more results come in, the decision-making process can be fine-tuned. What they did not mentionis his urinary stricture. Make them explain how they would address this issue.
You're making great progress in this,
max
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