Husband - 62-YO - RP 12-8-12, Gleason 5+4=9 - Wife Worried

pjp1753

I'll preface by stating that I (the wife) have not been comfortable with my husband's doctor (Urologist) since day of surgery.  Why?  Because he seems to be talking out of both sides of his mouth.  I wish I'd kept a journal of everything that's transpired, because right now I'd be hard-pressed to go back and put it all together in sequence.  Since I'd like to just get the "basics" out there right now, this will surely be a convoluted version of what's going on.

I was very happy to have found this site yesterday and have been reading many of the posts.  I haven't come across one that is precisely the same situation but I've obtained enough excellent information that I knew I wanted to become a member of this group.

My husband had a slightly elevated PSA several years back.  Primary care physician had him re-tested months later but did not feel there was any problem.  At annual exam in April 2012, PSA was 7.4.  Re-test, September 2012, PSA was 7.2.  Referred to urologist, appt. in October 2012.  Upon physical exam, urologist felt there was something wrong.  Was pretty sure it was cancer but would need to do MRI and needle-guided biopsy to confirm.  Because husband was leaving for a 3-week hunting trip the very next day, these tests had to be put off until the week he returned.  MRI showed nothing.  The needle-guided biopsy results were delivered 2 weeks later and every single one of the biopsies showed cancer.  I wish I had the numbers....I know they were all high.  I'm still trying to get that report from the doctor's office.  I will have it by next week!  Unfortunately, I was out-of-town that Friday my husband received biopsy results so I'm not sure precisely what transpired between him and the doctor.  I do know the doctor told him that surgery could be done robotically but that he saw no advantages to that.  Note:  This urologist is not trained to do the surgery robotically.  End result was...the following Monday my husband and I were in that doctor's office with the office manager who took care of clearing the doctor's OR schedule for the following Monday and ordering all the preadmission testing that would occur that week.  In addition to the routine tests, my husband also requested a bone scan.  All test results were good.

Day of surgery (10 days after getting biopsy results), urologist came down to talk to me while my husband was still in the recovery room.  He was in my face wanting to know if my husband made me aware of just how SERIOUS this cancer was!  Went on and on about how it was one of the most aggressive cells and it would require aggressive treatment.  He said hormone therapy as soon as possible and radiation at 3 months post-op.  But then said, if is PSA comes back as a 0, he'd be hard-pressed to make a case for radiation.  Doctor was very happy with the surgery, thought he did an excellent job of removing the entire prostate.  Said there was no evidence of cancer in the lymph nodes.

I'm going to jump ahead here just for the sake of getting the facts out.  I finally was able to obtain the post-op pathology report this week.  I am still waiting for the copy of the pathology report from his needle-guided biopsies performed 11/20/12.  The Urologist does not want me to have copies of the pathology reports, "because there is nothing in them that is positive and I need you to stay positive!"  This he told me on my husband's 2nd post-op office visit after doctor removed the surgical drain and the nurse was taking out his staples.  Urologist went so far as to say that he knew I had SOME medical knowledge, but that I was not a healthcare professional and he didn't want me on the internet with the information contained in those reports. He told my husband at that same visit that had he waited another 6 months, he wouldn't have even touched him because the prostate gland was "bulging" with cancer.  He advised him to take time to heal, he would see him again in one month at which time he would start him on hormone therapy and radiation would start at 3 months.  I asked the urologist how long my husband would be on the hormone therapy and without hesitation, he said, "three years."

Pathololgy/Cytology Results:  Both lymph nodes biopsied were free of metastatic disease.  Prostate and seminal vesicles - extensive involvemen by adenocarcinoma, Gleason 9 (5+4) - Multi-focal extraprostatic extension - multi-focal margin involvement - bilateral seminal vesicle involvement.  Bladder neck margin, left, excision - no evidence of malignancy.  Microscopic exam: This prostate gland exhibits a remarkable degree of involvement by adenocarcinoma.  Every one of the 37 blocks of tissue examined is to one extent or another, often very extensive, involved by adenocarcinoma with 15 of these blocks exhibiting foci of extraprostatic extension, and 7 exhibiting definitive margin involvement.  Margin involvement is probably greater but hindered by artifact induced by the surgical excision process.  The Gleason score varies widely with the lowest being 3+3 and the highest 5+5, on average the Gleason score appears to be 5+4.  Prostate size:  3.5 x 4.5 x 4.0 cm.  Lymph Node Sampling:  Pelvic lymph node dissection, Histologic Type:  Adenocarcinoma, Gleason pattern:  Primary Pattern:  Grade V; Secondary Pattern:  Grade IV.  Portion/Percentage of Prostate Involvd by Tumor:  95%.  Total Gleason Score:  9.  Extraprostatic Extension:  Present, non focal.  Seminal Vesicles Invasion:  Bilateral.  Margins:  margins involved by invasive carcinoma, multifocal.  Treatment Effect on Carcinoma:  not identified.  Lymph-Vascular Invasion:  Not identified.  Perineural Invasion:  Present.  Primary Tumor:  pT3b seminal vesicle invasion.  Regional Lymph Nodes (pN): pNX:  Cannot be assessed.

At one-month post-op visit to urologist, 45 mg. Eligard was administered.  My husband asked how long he would be on the hormone therapy and without hesitation, the urologist said..."for the rest of your life."  Radiation was not mentioned and, unfortunately, we were so focused on the hormone therapy beginning, we didn't realize the radiation hadn't been addressed until we were getting in the car to go home when I husband said, "I guess I'm not going to get radiation at 3 months since my next appointment with the urologist is ANOTHER 3 months from now."  I said I'd call the office hen we got home.  Husband said no, it was OK. Well, as time went on, it bothered me tremendously that the doctor has said repeatedly that radiation would begin at 3 months and consistently reminded us that he was "going to be throwing the kitchen sink at this."  I called the urologist's office and asked if we could be referred to radiation oncology for a consult.  The urologist called me back and was irate, telling me that I was being over-zealous about the radiation, that my husband was not READY for medical oncology and that when he DID get referred, it will be to a radiation oncologist.  I stated to him that I never SAID medical oncology, my concern was that he (the urologist) said radiation treatments would be started at 3 months post-op and yet my husband wasn't going to be seen by the urologist again until he was 4 months post op, which would likely put impending radiation treatments to begin at 5 months post-op.  His response was...."it doesn't matter if the radiation treatments begin at 3 months or 5 months post-op!  But if you want to move his appt. up sooner, by all means, let's take your anxiety away and get him in here sooner!"  Ok, so the appt. got moved up a few weeks, only to be moved back even further than 4 months post op...because urologist was going on vacation.  (We received a postcard in the mail telling us of the reschedule.)  I called the office and said this was unacceptable, so the urologist "squeezed us in" before office hours last Monday.  He again said it didn't matter whether radiation started at 3 or 5 months and proceeded to tell my husband that he didn't want to start it too soon because he could guarantee him that his incontinence...at whatever level it is right now....would be worse after radiation.  He also told him of all the negatives of having radiation and all but said he wasn't sure he should even have it.  However, when my husband said that he'd be fine with waiting another 6 months to have the treatments, the doctor exclaimed, "You can't WAIT another 6 months!"  So then the doctor says, "how about if we split the difference?  I'll see you back here in 6 weeks!"  WHAT?!!  Why do we have to keep coming back to see HIM?. 

Of note, husband has had two PSA's since surgery.  I don't have the numbers and the urologist's office won't give them to me without the doctor's permission.  Doctor is on vacation.  I do know that they were both zero point something....negligible.  He will have another PSA prior to the May 17 appontment...which is exactly 5 months and one week post-op.

I cannot understand WHY the urologist hasn't been willing to refer us to an oncologist for a consultation. I feel strongly that an oncologist should already be involved in my husband's treatment plan.  Given my husband's family history....mother died of colon cancer in her 40's, brother died of kidney cancer....diagnosed January 25, 2012 (one day before his 60th birthday) and died one month (to the day) later...totally misdiagnosed, and his father died from throwing a clot due to untreated prostate cancer at age 69....and the fact that this is an aggressive cell and the margins were not clean, I can't wrap my head around the fact that it DOESN'T MATTER if radiation begins at 3 months or 5 months.

Am I crazy to be worried sick that this cancer could be spreading while we await the radiation treatments or is the hormone therapy such a for-sure cure that I should not be worried at all?

I will be grateful for any input!

 

 

 

 

 

 

hopeful and optimistic

Dear wife

I am sorry for your husband's condition, and the challenges that your husband and you must face.

First, I believe that a "doc" is a hired hand. He works for you.

The information that you provided here is somewhat sketchy.

The law in the United States is that a patient is entitled to his medical records. A doctor must release same. Have your husband ask for a copy of all procedures including the pathology report, all office visit notes.

Having this information will enable you to discuss intelligently and be available for other doctor consultations.

The highest number found in the biopsy, in your husband’s case, the Gleason 5+5=10 is the determining factor. As you realize this is very serious.

In my opinion, a Medical Oncologist needs to be the leader of your husband’s medical team. You want the best that you can find. This type doctor is the expert on hormone therapies.

Where do you live, hopefully we can at this board will be able to direct you to a competent Oncologist..

Please let us know what the PSA’s have been after the surgery.

 

Kongo

You have a right to be worried

Dear Pjp

I am sorry to read of your husband's situation and the fact that, in my lay opinion, your urologist doesn't seem to be doing you any favors.  The Gleason score associated with your husband's diagnosis is very serious but it is not immediately life threatening.  While you can't go back and rewind the actions that lead you to this point you and your husband certainly have control over what goes on from this point forward.

I would first recommend that you both educate yourselves about prostate cancer.  While he has received a serious diagnosis, many men live long and productive lives in similar situations.  I would also recommend that you immediately seek second opinions as Hopeful and Optimistic suggests in his response.  There is greatly divided opinion among the so-called experts as to whether the removal of the prostate with a Gleason 9 is an appropriate course of action.  This is because it is almost a certainty that the cancer has spread beyond the prostate in these advance cases and removing the prostate does nothing at all to curb the growth of cancer elsewhere in the body.  Prostate cancer in the prostate doesn't kill men.  It is when prostate cancer metastasizes to distant organs that is fatal.  In my opinion, removing the prostate only complicates his quality of life by introducing impotence and urinary incontinence as potential side effects.  

Since those choices are behind you at this point there is nothing you can do to change it but the course of treatment this urologist imposed upon your husband is indicative of how he might be in the future.  I wish you had taken the time to seek second opinions from several other specialists, including radiologists and oncologists before embarking on surgery but at least you can do that now.  You need to march right down to the urologist's office and demand a full copy of all the medical paperwork, the lab reports, the MRI results, the post surgical pathology, everything.  Put these together in a folder that you can take when you visit other sepecialists to seek second opinions.

Your doctor is giving your husband Eligard because that is a hormone treatment that diminishes the testosterone produced in th testes.  Prostate cancer generally requires testosterone to grow.  By chemically castrating your husband with homone therapy they are seeking to slow the growth of the cancer.  Hormone therapy is not curative and eventually, as prostate cancer progresses to advanced stages, the hormone therapy will become ineffective.  So despite what he told your husband about being on it for the rest of his life, in fact it is likely that at some point in the future the Eligard will become less effective as evidenced by rising PSA readings, and he will need to transition to another family of drugs.  Unfortunately, these too are not curative.

Radiation is often used in advanced cases when the prostate is removed.  The basic plan is to radiate the "prostate bed," that area adjacent to where the prostate used to reside and the likely place for cancer to spread to, and hope that you get it.  Prostate cancer spreads through the blood system, the lymph system, and by physical contact.  After prostate removal the prostate PSA reading shoul be undetectable.  Any PSA reading is most likely an indication that there is cancer growing somewhere else, even if at the microscopic level that can't be detected by normal imaging systems.

I wish you both the best of luck and hope that you seek second (and third or fourth) opinions from other specialists to put what your present urologist is telling you.

K

pjp1753

hopeful and optimistic said:

Dear wife

I am sorry for your husband's condition, and the challenges that your husband and you must face.

First, I believe that a "doc" is a hired hand. He works for you.

The information that you provided here is somewhat sketchy.

The law in the United States is that a patient is entitled to his medical records. A doctor must release same. Have your husband ask for a copy of all procedures including the pathology report, all office visit notes.

Having this information will enable you to discuss intelligently and be available for other doctor consultations.

The highest number found in the biopsy, in your husband’s case, the Gleason 5+5=10 is the determining factor. As you realize this is very serious.

In my opinion, a Medical Oncologist needs to be the leader of your husband’s medical team. You want the best that you can find. This type doctor is the expert on hormone therapies.

Where do you live, hopefully we can at this board will be able to direct you to a competent Oncologist..

Please let us know what the PSA’s have been after the surgery.

 

Gleason is 10?

Thanks for your response, hopeful and optimistic!

My heart skipped a beat at reading your statement that his Gleason is 5+5=10.  How did you come to that determination?  That is the ONE thing the doctor has stated, without retraction, continuously at every appointment....his Gleason is 5+4=9.

I know what I wrote was "sketchy," but I wasn't sure where to begin and having found this forum, I was anxious to just get some information on here to make contact with others who could relate and share.

Of the many things that didn't make sense to me from the urologist...at the first follow-up after surgery, I asked what stage my husband's cancer was and he wrote on a sheet from his prescription pad:  pT3c No Mo, Gleason 5+4=9.  Just yesterday I was talking to someone who does medical transcription in pathology and she said that pT3c isn't even on the scale!  I see on the pathology report I received from the hospital yesterday that the Primary Tumor is:  pT3b.  Maybe seems like a silly, picky thing for me to point out this discrepancy between what the doctor personally wrote down for me and I still have in my possession (c) and what is actually on the pathology report (b), but it is just one of many things that have caused me to....I hate to say it, but to not TRUST him.  Why say without hesitation at one appointment that he'll have hormone therapy for 3 years and at the very next appointment, he's going to have it for life.  If he didn't KNOW, then just say, "We'll talk about it."  Don't just make stuff up as you go along!

Thank you for sharing your opinion in believing that a Medical Oncologist should be the leader on my husband's medical team.  I have said this from the very beginning!  At last week's appointment, urologist said, "The moment I send you over to Radiation Oncology, they're going to RADIATE you!  They will end up causing you MORE damage than good, and then 'I' will be the one taking care of you!"  He comes off (to me) as thinking he's God.  My husband has been satisfied with his care from the urologist, but then you have to know my husband to understand that.  He is not one to "push" for anything!  As of today, my husband is finally "on board" with being willing to let someone else review his records...once we finally GET them!  Because the urologist gave me a hard time about getting the records from his office, I let it drop for a while but finally decided to call the hospital to get a form for release of the hospital records.  Of course, there was a significant fee involved and unbeknownst to us, the one report that we REALLY wanted wasn't available through hospital records.  I called the urologist's office today asking for the most recent PSA numbers and a copy of the needle biopsies but they won't release ANYTHING without the doctor's permission and he is on vacation until next Tuesday.  I called back and asked if one of the other doctors in the group could release that information since my husband had been seen on one occasion by another doctor in the group when urologist was on vacation but the answer was still no.  I know we are entitled to have that information.  I was trying to avoid any more confrontation with the urologist so went by way of the hospital.

We are located in northeast PA.

Thank you again for responding! 

Samsungtech1

Dr.s

You are the only people who can fight this.  Why would you hesitate to seek an oncologist.  Your husband needs to be tested, pet scan, ct scan, and maybe an MRI.  Not sure about MRI, but they keep giving them to me. Your husband needs to wake up.  He has to fight for his life.  Do not hesitate on this.  His life depends on this.

 

I wish you well.

 

Mike

hopeful and optimistic

pjp1753 said:

Gleason is 10?

Thanks for your response, hopeful and optimistic!

My heart skipped a beat at reading your statement that his Gleason is 5+5=10.  How did you come to that determination?  That is the ONE thing the doctor has stated, without retraction, continuously at every appointment....his Gleason is 5+4=9.

I know what I wrote was "sketchy," but I wasn't sure where to begin and having found this forum, I was anxious to just get some information on here to make contact with others who could relate and share.

Of the many things that didn't make sense to me from the urologist...at the first follow-up after surgery, I asked what stage my husband's cancer was and he wrote on a sheet from his prescription pad:  pT3c No Mo, Gleason 5+4=9.  Just yesterday I was talking to someone who does medical transcription in pathology and she said that pT3c isn't even on the scale!  I see on the pathology report I received from the hospital yesterday that the Primary Tumor is:  pT3b.  Maybe seems like a silly, picky thing for me to point out this discrepancy between what the doctor personally wrote down for me and I still have in my possession (c) and what is actually on the pathology report (b), but it is just one of many things that have caused me to....I hate to say it, but to not TRUST him.  Why say without hesitation at one appointment that he'll have hormone therapy for 3 years and at the very next appointment, he's going to have it for life.  If he didn't KNOW, then just say, "We'll talk about it."  Don't just make stuff up as you go along!

Thank you for sharing your opinion in believing that a Medical Oncologist should be the leader on my husband's medical team.  I have said this from the very beginning!  At last week's appointment, urologist said, "The moment I send you over to Radiation Oncology, they're going to RADIATE you!  They will end up causing you MORE damage than good, and then 'I' will be the one taking care of you!"  He comes off (to me) as thinking he's God.  My husband has been satisfied with his care from the urologist, but then you have to know my husband to understand that.  He is not one to "push" for anything!  As of today, my husband is finally "on board" with being willing to let someone else review his records...once we finally GET them!  Because the urologist gave me a hard time about getting the records from his office, I let it drop for a while but finally decided to call the hospital to get a form for release of the hospital records.  Of course, there was a significant fee involved and unbeknownst to us, the one report that we REALLY wanted wasn't available through hospital records.  I called the urologist's office today asking for the most recent PSA numbers and a copy of the needle biopsies but they won't release ANYTHING without the doctor's permission and he is on vacation until next Tuesday.  I called back and asked if one of the other doctors in the group could release that information since my husband had been seen on one occasion by another doctor in the group when urologist was on vacation but the answer was still no.  I know we are entitled to have that information.  I was trying to avoid any more confrontation with the urologist so went by way of the hospital.

We are located in northeast PA.

Thank you again for responding! 

Sorry, I misread your post

the Gleason is 5+4=9

Samsungtech1

Kongo said:

You have a right to be worried

Dear Pjp

I am sorry to read of your husband's situation and the fact that, in my lay opinion, your urologist doesn't seem to be doing you any favors.  The Gleason score associated with your husband's diagnosis is very serious but it is not immediately life threatening.  While you can't go back and rewind the actions that lead you to this point you and your husband certainly have control over what goes on from this point forward.

I would first recommend that you both educate yourselves about prostate cancer.  While he has received a serious diagnosis, many men live long and productive lives in similar situations.  I would also recommend that you immediately seek second opinions as Hopeful and Optimistic suggests in his response.  There is greatly divided opinion among the so-called experts as to whether the removal of the prostate with a Gleason 9 is an appropriate course of action.  This is because it is almost a certainty that the cancer has spread beyond the prostate in these advance cases and removing the prostate does nothing at all to curb the growth of cancer elsewhere in the body.  Prostate cancer in the prostate doesn't kill men.  It is when prostate cancer metastasizes to distant organs that is fatal.  In my opinion, removing the prostate only complicates his quality of life by introducing impotence and urinary incontinence as potential side effects.  

Since those choices are behind you at this point there is nothing you can do to change it but the course of treatment this urologist imposed upon your husband is indicative of how he might be in the future.  I wish you had taken the time to seek second opinions from several other specialists, including radiologists and oncologists before embarking on surgery but at least you can do that now.  You need to march right down to the urologist's office and demand a full copy of all the medical paperwork, the lab reports, the MRI results, the post surgical pathology, everything.  Put these together in a folder that you can take when you visit other sepecialists to seek second opinions.

Your doctor is giving your husband Eligard because that is a hormone treatment that diminishes the testosterone produced in th testes.  Prostate cancer generally requires testosterone to grow.  By chemically castrating your husband with homone therapy they are seeking to slow the growth of the cancer.  Hormone therapy is not curative and eventually, as prostate cancer progresses to advanced stages, the hormone therapy will become ineffective.  So despite what he told your husband about being on it for the rest of his life, in fact it is likely that at some point in the future the Eligard will become less effective as evidenced by rising PSA readings, and he will need to transition to another family of drugs.  Unfortunately, these too are not curative.

Radiation is often used in advanced cases when the prostate is removed.  The basic plan is to radiate the "prostate bed," that area adjacent to where the prostate used to reside and the likely place for cancer to spread to, and hope that you get it.  Prostate cancer spreads through the blood system, the lymph system, and by physical contact.  After prostate removal the prostate PSA reading shoul be undetectable.  Any PSA reading is most likely an indication that there is cancer growing somewhere else, even if at the microscopic level that can't be detected by normal imaging systems.

I wish you both the best of luck and hope that you seek second (and third or fourth) opinions from other specialists to put what your present urologist is telling you.

K

Physical contact

Kongo,

Excuse my ignorance but what exactly do you mean by physical contact?  Can it spread through your blood?  Say you get a cut or something.  

 Mike

Kongo

Samsungtech1 said:

Physical contact

Kongo,

Excuse my ignorance but what exactly do you mean by physical contact?  Can it spread through your blood?  Say you get a cut or something.  

 Mike

Contact

If the cancer tumor is physically next to other cells it can spread from cell to cell.  Prostate cancer moves via the blood stream and the lymph system.  During surgery, if the doctor cut across a tumor near the margins (as suggested in the post surgergy pathology report) then it's quite possible that these cancer cells ripped loose by the incision entered the blood stream.  Normally, the body's undamaged immune system can handle small amounts of cancer cells without difficulty but when there are a whole lot of them it becomes a matter of statistics.  A few of them will likely find a favorable spot (the bone is a favorite place for prostate cancer) to start another colony.  Even if these cells move to another part of the body, they remain uniquely prostate cancer.  

K

Samsungtech1

Kongo said:

Contact

If the cancer tumor is physically next to other cells it can spread from cell to cell.  Prostate cancer moves via the blood stream and the lymph system.  During surgery, if the doctor cut across a tumor near the margins (as suggested in the post surgergy pathology report) then it's quite possible that these cancer cells ripped loose by the incision entered the blood stream.  Normally, the body's undamaged immune system can handle small amounts of cancer cells without difficulty but when there are a whole lot of them it becomes a matter of statistics.  A few of them will likely find a favorable spot (the bone is a favorite place for prostate cancer) to start another colony.  Even if these cells move to another part of the body, they remain uniquely prostate cancer.  

K

Thanks, Kongo

I really worry about nurses taking blood.  Not all on the same professional scale.  Theytoldmenoorgansor blood.    Shame,

Mike

pjp1753

Kongo said:

You have a right to be worried

Dear Pjp

I am sorry to read of your husband's situation and the fact that, in my lay opinion, your urologist doesn't seem to be doing you any favors.  The Gleason score associated with your husband's diagnosis is very serious but it is not immediately life threatening.  While you can't go back and rewind the actions that lead you to this point you and your husband certainly have control over what goes on from this point forward.

I would first recommend that you both educate yourselves about prostate cancer.  While he has received a serious diagnosis, many men live long and productive lives in similar situations.  I would also recommend that you immediately seek second opinions as Hopeful and Optimistic suggests in his response.  There is greatly divided opinion among the so-called experts as to whether the removal of the prostate with a Gleason 9 is an appropriate course of action.  This is because it is almost a certainty that the cancer has spread beyond the prostate in these advance cases and removing the prostate does nothing at all to curb the growth of cancer elsewhere in the body.  Prostate cancer in the prostate doesn't kill men.  It is when prostate cancer metastasizes to distant organs that is fatal.  In my opinion, removing the prostate only complicates his quality of life by introducing impotence and urinary incontinence as potential side effects.  

Since those choices are behind you at this point there is nothing you can do to change it but the course of treatment this urologist imposed upon your husband is indicative of how he might be in the future.  I wish you had taken the time to seek second opinions from several other specialists, including radiologists and oncologists before embarking on surgery but at least you can do that now.  You need to march right down to the urologist's office and demand a full copy of all the medical paperwork, the lab reports, the MRI results, the post surgical pathology, everything.  Put these together in a folder that you can take when you visit other sepecialists to seek second opinions.

Your doctor is giving your husband Eligard because that is a hormone treatment that diminishes the testosterone produced in th testes.  Prostate cancer generally requires testosterone to grow.  By chemically castrating your husband with homone therapy they are seeking to slow the growth of the cancer.  Hormone therapy is not curative and eventually, as prostate cancer progresses to advanced stages, the hormone therapy will become ineffective.  So despite what he told your husband about being on it for the rest of his life, in fact it is likely that at some point in the future the Eligard will become less effective as evidenced by rising PSA readings, and he will need to transition to another family of drugs.  Unfortunately, these too are not curative.

Radiation is often used in advanced cases when the prostate is removed.  The basic plan is to radiate the "prostate bed," that area adjacent to where the prostate used to reside and the likely place for cancer to spread to, and hope that you get it.  Prostate cancer spreads through the blood system, the lymph system, and by physical contact.  After prostate removal the prostate PSA reading shoul be undetectable.  Any PSA reading is most likely an indication that there is cancer growing somewhere else, even if at the microscopic level that can't be detected by normal imaging systems.

I wish you both the best of luck and hope that you seek second (and third or fourth) opinions from other specialists to put what your present urologist is telling you.

K

Many thanks

Thank you for your concern and all the helpful information, K!

It is becoming quite obvious that it may have been a huge mistake for my husband to have rushed into the surgery but there was no convincing him to wait and/or obtain a second opinion.  I TRIED!  He just wanted the cancer OUT!  As you said, we can't go "back" at this point, but we certainly CAN take control of where he goes from here.

Today is the very first that he's agreed to getting a second opinion.  I've been going on about my dissatisfaction with the urologist ever since day of surgery!  For whatever reason, he couldn't see clear to see that what I was saying had merit until today!  Of course, we did just receive the pathology report yesterday so now it is IN OUR FACE!  I am angry with the urologist for being so condescending and bullying me about the pathology report, along with making me out to be a crazy woman for being anxious about moving on to oncology.  Now that I finally have my husband "on board" with getting another opinion AND have made contact with you folks on here to point me in the right direction, I hope we can move on to the next step quickly! 

I saw somewhere on these Discussion Boards names of hospitals/cancer centers given that you could send your records for review.  I'm not sure where I saw that but am wondering if someone could shed more light on that option.  There were actual names of the institutions and the cost involved for review.

I would be thrilled if we could simply just get IN to see a local oncologist!  I full-heartedly agree that the urologist has done us no favors!

Thank you both for taking time to respond!  You've shared a weath of information and your support is deeply appreciated!

pjp

pjp1753

hopeful and optimistic said:

Sorry, I misread your post

the Gleason is 5+4=9

Mis-read post

Phew!  Well that's GOOD!  Thanks!

hopeful and optimistic

pjp1753 said:

Many thanks

Thank you for your concern and all the helpful information, K!

It is becoming quite obvious that it may have been a huge mistake for my husband to have rushed into the surgery but there was no convincing him to wait and/or obtain a second opinion.  I TRIED!  He just wanted the cancer OUT!  As you said, we can't go "back" at this point, but we certainly CAN take control of where he goes from here.

Today is the very first that he's agreed to getting a second opinion.  I've been going on about my dissatisfaction with the urologist ever since day of surgery!  For whatever reason, he couldn't see clear to see that what I was saying had merit until today!  Of course, we did just receive the pathology report yesterday so now it is IN OUR FACE!  I am angry with the urologist for being so condescending and bullying me about the pathology report, along with making me out to be a crazy woman for being anxious about moving on to oncology.  Now that I finally have my husband "on board" with getting another opinion AND have made contact with you folks on here to point me in the right direction, I hope we can move on to the next step quickly! 

I saw somewhere on these Discussion Boards names of hospitals/cancer centers given that you could send your records for review.  I'm not sure where I saw that but am wondering if someone could shed more light on that option.  There were actual names of the institutions and the cost involved for review.

I would be thrilled if we could simply just get IN to see a local oncologist!  I full-heartedly agree that the urologist has done us no favors!

Thank you both for taking time to respond!  You've shared a weath of information and your support is deeply appreciated!

pjp

medical oncologist

Some more information:

There are approximately 50 oncologists who specialize only in prostate cancer...threy are the true experts. I don't have the list handy...I saw the listing at the back of one of the books that I read. Try to google this and see what comes up.

There are support groups throughout the country. Many provide a lot of knowledge and some provide emotional support....some provide both....good idea for you and your husband to attend. These people will have a pretty good idea of medical experts in your area, and elsewhere if necessary....You really want the best that you can find on your team...yes there is a difference between doctors. 

Two national support groups are USTOO and MAN TO Man....google for your area.

What about your medical coverage or coverages. Do you have limitations on what they will pay, and who you can see?

pjp1753

Samsungtech1 said:

Dr.s

You are the only people who can fight this.  Why would you hesitate to seek an oncologist.  Your husband needs to be tested, pet scan, ct scan, and maybe an MRI.  Not sure about MRI, but they keep giving them to me. Your husband needs to wake up.  He has to fight for his life.  Do not hesitate on this.  His life depends on this.

 

I wish you well.

 

Mike

PHYSICIAN BULLYING?

Truly, I think I have to say I'm a victim of being bullied by a physician!  I've been made to feel like a complete lunatic by my husband's urologist!  I've asked repeatedly WHY CAN'T WE MOVE ON TO ONCOLOGY?  Nope, we need to see the urologist!  Your husband isn't READY for oncology!  When their office called me back with regard to moving his last appointment because I said it was unacceptable for him to wait yet another MONTH, the nurse literally shouted, "and the doctor said your husband is NOT in ANY danger!"  I'm so angry that I allowed myself to be intimidated by that pompous ****!  As for my husband, this is the way he's always been.  He likes to bury his head in the sand and just hope that everything either "goes away" or "works itself out!"  He doesn't like confrontation or to be "bothered" by the least little thing. That's always been his way of dealing with ANYTHING!  Trust me, I've been TRYING to get my husband to see that we need to DO SOMETHING but he just didn't "see it."  Like I said above, I think that now that we have the one pathology report in front of us, he IS waking up!  I'm SO GLAD to have found this forum!  Thank you for writing, Mike!  I think those tests are a great idea.  I've been thinking along the same lines! In mind, it just only makes sense that if the margins were not clean, those cancer cells have every opportunity to be hopping off onto something else!  I'm no rocket scientist but I DO have common sense!  I've expressed my thoughts and feelings to everyone who will listen, but I couldn't convince my husband that we needed to move on.  There will be no more hesitation!

 

pjp 

hopeful and optimistic

pjp1753 said:

PHYSICIAN BULLYING?

Truly, I think I have to say I'm a victim of being bullied by a physician!  I've been made to feel like a complete lunatic by my husband's urologist!  I've asked repeatedly WHY CAN'T WE MOVE ON TO ONCOLOGY?  Nope, we need to see the urologist!  Your husband isn't READY for oncology!  When their office called me back with regard to moving his last appointment because I said it was unacceptable for him to wait yet another MONTH, the nurse literally shouted, "and the doctor said your husband is NOT in ANY danger!"  I'm so angry that I allowed myself to be intimidated by that pompous ****!  As for my husband, this is the way he's always been.  He likes to bury his head in the sand and just hope that everything either "goes away" or "works itself out!"  He doesn't like confrontation or to be "bothered" by the least little thing. That's always been his way of dealing with ANYTHING!  Trust me, I've been TRYING to get my husband to see that we need to DO SOMETHING but he just didn't "see it."  Like I said above, I think that now that we have the one pathology report in front of us, he IS waking up!  I'm SO GLAD to have found this forum!  Thank you for writing, Mike!  I think those tests are a great idea.  I've been thinking along the same lines! In mind, it just only makes sense that if the margins were not clean, those cancer cells have every opportunity to be hopping off onto something else!  I'm no rocket scientist but I DO have common sense!  I've expressed my thoughts and feelings to everyone who will listen, but I couldn't convince my husband that we needed to move on.  There will be no more hesitation!

 

pjp 

upset, angry and worried

A few things......

First it is a perfectly natural thing for your husband to want to take immediate action , and get that CANCER out of his body.

Many simply trust their docs, are not informed and suffer consequences as a result. This happens the majority of times.

 the doc bullied you, and your angry.

Your angry at your husband for the way he dealt with this.......but mainly you are very worried.

All of the above may be true, but now it's time for you to place your energy focused on the best treatment for your husband.  Probably not a good idea to tell this doc that he is a **** head, since you probably have to deal with him in the near future.

Be focused on solving the challenges ahead of you.

I'm not say that you don't have the right to be upset, you do...but channel your enery into making the "best" decisions.

 

 

 

pjp1753

hopeful and optimistic said:

medical oncologist

Some more information:

There are approximately 50 oncologists who specialize only in prostate cancer...threy are the true experts. I don't have the list handy...I saw the listing at the back of one of the books that I read. Try to google this and see what comes up.

There are support groups throughout the country. Many provide a lot of knowledge and some provide emotional support....some provide both....good idea for you and your husband to attend. These people will have a pretty good idea of medical experts in your area, and elsewhere if necessary....You really want the best that you can find on your team...yes there is a difference between doctors. 

Two national support groups are USTOO and MAN TO Man....google for your area.

What about your medical coverage or coverages. Do you have limitations on what they will pay, and who you can see?

Oncologists and Medical Coverage

Thanks, I will Google the oncologist specializing in prostate cancer, and I also know some people who quite possibly may be able to help point us in the right direction.

With regard to medical coverage, it's not pretty, but I can't put a price on my husband's life.  We have a $5,000 deductible for each of us.  This means we pay for ALL medical care and prescriptions up to $5,000, then our insurance pays 80% and we pay 20% until we've paid out of pocket ANOTHER $5,000 each, for a maximum total out-of-pocket of $10,000 for each of us per year.  That is IF we stay within the EPO!  We are not in a PPO.  If we go (or if any tests are sent out of) the EPO, our deductible is $10,000 each, for a maximum of $20,000 out-of-pocket for each per year.  Some of the blood work for my husband was sent out of the EPO ($1,000 worth) so we actually spent $11,000 out-of-pocket for his healthcare in 2012, in addition to our insurance premiums (nearly $1,000/mo.) and the amount spent on MY healthcare.  It's crazy!

pjp1753

hopeful and optimistic said:

upset, angry and worried

A few things......

First it is a perfectly natural thing for your husband to want to take immediate action , and get that CANCER out of his body.

Many simply trust their docs, are not informed and suffer consequences as a result. This happens the majority of times.

 the doc bullied you, and your angry.

Your angry at your husband for the way he dealt with this.......but mainly you are very worried.

All of the above may be true, but now it's time for you to place your energy focused on the best treatment for your husband.  Probably not a good idea to tell this doc that he is a **** head, since you probably have to deal with him in the near future.

Be focused on solving the challenges ahead of you.

I'm not say that you don't have the right to be upset, you do...but channel your enery into making the "best" decisions.

 

 

 

Much as I Would Like to, I never would!

No, I'm well aware it would serve no purpose to tell the urologist precisely what I think of him.

I truly have been focusing all of my energies on taking care of my husband the best I can.  I'm regretting that I wasn't more proactive in FORCING him to wake up and listen to me!  I didn't want to be a constant nag and with the doctor making me out to be an idiot, well....let's not beat the horse to death.

We can only move on from here and that's what we'll be doing!  Post haste!

I did just Google Oncologists specializing in Prostate Cancer but I'm not seeing anything I find very helpful.  Tomorrow I'm going to make contact with everyone I know who could possibly help me!  And in the meantime, perhaps I'll find some more "leads" within this forum!

Sure do appreciate all the interaction here!

pjp

hopeful and optimistic

pjp1753 said:

Oncologists and Medical Coverage

Thanks, I will Google the oncologist specializing in prostate cancer, and I also know some people who quite possibly may be able to help point us in the right direction.

With regard to medical coverage, it's not pretty, but I can't put a price on my husband's life.  We have a $5,000 deductible for each of us.  This means we pay for ALL medical care and prescriptions up to $5,000, then our insurance pays 80% and we pay 20% until we've paid out of pocket ANOTHER $5,000 each, for a maximum total out-of-pocket of $10,000 for each of us per year.  That is IF we stay within the EPO!  We are not in a PPO.  If we go (or if any tests are sent out of) the EPO, our deductible is $10,000 each, for a maximum of $20,000 out-of-pocket for each per year.  Some of the blood work for my husband was sent out of the EPO ($1,000 worth) so we actually spent $11,000 out-of-pocket for his healthcare in 2012, in addition to our insurance premiums (nearly $1,000/mo.) and the amount spent on MY healthcare.  It's crazy!

Look into major medical centers of excellence

such as Sloane Kettering , Jonhs Hopkins, and other ones near where you live..........the facilities are generally state of the art, and the doctors are excellent.

U.S. News and World report annually publishes a list of the best hospitals by specialty...these hospitals are ranked

Kongo

pjp1753 said:

Many thanks

Thank you for your concern and all the helpful information, K!

It is becoming quite obvious that it may have been a huge mistake for my husband to have rushed into the surgery but there was no convincing him to wait and/or obtain a second opinion.  I TRIED!  He just wanted the cancer OUT!  As you said, we can't go "back" at this point, but we certainly CAN take control of where he goes from here.

Today is the very first that he's agreed to getting a second opinion.  I've been going on about my dissatisfaction with the urologist ever since day of surgery!  For whatever reason, he couldn't see clear to see that what I was saying had merit until today!  Of course, we did just receive the pathology report yesterday so now it is IN OUR FACE!  I am angry with the urologist for being so condescending and bullying me about the pathology report, along with making me out to be a crazy woman for being anxious about moving on to oncology.  Now that I finally have my husband "on board" with getting another opinion AND have made contact with you folks on here to point me in the right direction, I hope we can move on to the next step quickly! 

I saw somewhere on these Discussion Boards names of hospitals/cancer centers given that you could send your records for review.  I'm not sure where I saw that but am wondering if someone could shed more light on that option.  There were actual names of the institutions and the cost involved for review.

I would be thrilled if we could simply just get IN to see a local oncologist!  I full-heartedly agree that the urologist has done us no favors!

Thank you both for taking time to respond!  You've shared a weath of information and your support is deeply appreciated!

pjp

Oncologist vs. ?????

PJP,

I certainly appreciate your frustraton.  Some doctors use intimidation and patient fear of an unknown situation and the "C-word" to bully their patients.  I'm sure they think they know what's best but prostate cancer patients and their families are mature adults and deserve to be treated with kindness, respect, and sensitivity.  Patients should never allow a physician to talk down to them or treat them in a condescending manner.  Patients, on the other hand, have a responsibility to be as informed as possible, understand their rights, and ask questions until they are satisfied with the answers.  I'm always amazed that people who will get multiple estimates for car repairs, house painting, or room additions see only a single doctor and blindly follow her advice on what perhaps may be the most important medical decision they will ever make.

I'm not faulting you, PJP, most of us cancer survivors go through a phase of waking up to the fact that we are our own best advocate for what is best for us and not the doctor.  In my own cancer journey I've learned to do my own research, validate it aganist what the doctor is telling me, and question him until he explains the differences.  When they tell you something and don't look directly in your eyes, that to me is a signal that they don't really fully believe what they're saying.  For example, a survey a few years ago indicated that 90% of doctors would not recommend chemotherapy for a family member or take it themselves.  Yet these same doctors prescribe it freely for the patients referred to them.  Why? Urologists who know the statistics and pros and cons of surgery versus radiation or other treatment forms continue to press for surgery instead of encouraging their patients to seek other opinions.  I've learned to be my own advocate.  I generally trust and admire physicians but I trust myself too and it is not that difficult to translate the medical jargon into something that is more easily understood.

I ended up reading more than a dozen books and visiting six specialists before deciding on my treatment and I still sometimes have second thoughts.  We can never be completely sure about the course we choose and there are no guarantees but we should make our decisions based on knowing all the facts and pros and cons of a particular course of action not emotion.

I know a lot of people suggest that at certain stages you must see an oncologist.  I saw one when I was visiting experts for second opinions.  I'm not entirely persuaded that they hold any magic keys anymore than other specialists.  In the United States there are basically three approved way to treat cancer:  surgery, radiation, chemicals.  Urologists tend to go for surgery since that is the basis of their training.  Radiologists favor modern radiology techniques to kill cancer.  Oncologists use chemicals such as hormones and chemotherapy to treat cancer.  Of the three basic methodologies to treat cancer, chemicals and drugs are the least effective.  Hormone therapy is not curative.  It does slow the progress of the disease but does not reverse it.  Chemotherpy has a very, very poor record of success and often kills the patient as well as the cancer cells.  In short, I would guard against any "silver bullet" or insist that only a certain specialty is appropriate.  I am sure there are radiologists who are perfectly capable of prescribing an overarching course of treatment for prostate cancer just as there are urologists and oncologists.  A team approach for your husband's situation may be the best course at this point as others have suggested.  Major cancer centers have the ability to bring all the specialties together better than any single physician.

I know you are feeling guilty about what you could or should have done in the past.  This is NOT YOUR FAULT.  There's no rewind button that enables you to go back.  We can only go forward.   Both you AND your husband need to be engaged in this process of education.  When the oncologist talks to you about hormone therapy, please have done your homework in advance so you can intelligently discuss things like hot flashes, weight gain, impact on libido, intermittent versus continuous dosage, PSA testing schedules, fall back plans and the pros and cons of the different drugs.  

I would also suggest that you and your husband investigate the elements of most American diets that can contribute to cancer, particularly red meat, dairy, sweets, and the ingredients in certain preservatives and packaging materials.  A great place to start reading is The China Study.

I wish you the very best.

 

K

hopeful and optimistic

pjp1753 said:

Much as I Would Like to, I never would!

No, I'm well aware it would serve no purpose to tell the urologist precisely what I think of him.

I truly have been focusing all of my energies on taking care of my husband the best I can.  I'm regretting that I wasn't more proactive in FORCING him to wake up and listen to me!  I didn't want to be a constant nag and with the doctor making me out to be an idiot, well....let's not beat the horse to death.

We can only move on from here and that's what we'll be doing!  Post haste!

I did just Google Oncologists specializing in Prostate Cancer but I'm not seeing anything I find very helpful.  Tomorrow I'm going to make contact with everyone I know who could possibly help me!  And in the meantime, perhaps I'll find some more "leads" within this forum!

Sure do appreciate all the interaction here!

pjp

Good idea

to ask permission of the various docs to record the office visits

Also good idea for the two of you to go together to appointments

pjp1753

pjp1753 said:

Much as I Would Like to, I never would!

No, I'm well aware it would serve no purpose to tell the urologist precisely what I think of him.

I truly have been focusing all of my energies on taking care of my husband the best I can.  I'm regretting that I wasn't more proactive in FORCING him to wake up and listen to me!  I didn't want to be a constant nag and with the doctor making me out to be an idiot, well....let's not beat the horse to death.

We can only move on from here and that's what we'll be doing!  Post haste!

I did just Google Oncologists specializing in Prostate Cancer but I'm not seeing anything I find very helpful.  Tomorrow I'm going to make contact with everyone I know who could possibly help me!  And in the meantime, perhaps I'll find some more "leads" within this forum!

Sure do appreciate all the interaction here!

pjp

Have Appt. with Radiation Oncologist!

I'm happy to report I was able to get an appt. for my husband for a consultation with a radiation oncologist who comes highly recommended in our area...a week from tomorrow!

laserlight

Questionable Doctor

If you live in the States here you are entitled by law to obtain a complete copy of the medical reports. This includes surgery and doctor visits. I have pulled all of my reports from time to time, for my records. I am a little worried that the doctor just went ahead and started Hormone therapy without giving you all some time to think or research. And you have everyright to seek a second opinion. The urologist may not like it. I would look at another Urologist that will work with you and help you.  Now the Onocolist will most likely treat with various drugs. My advice is to step back and take time and start to research the upcomming treatment methods. What really needs to happen here is that all of your doctors work toghter. Now there is nothing wrong with asking questions, you need to do this when you are fighting cancer the more information the better. Good Luck with your up comming doctor visits, if you have all of the records bring them with you or a copy, this helps the other doctors. I am sorry to hear that you have had this many problems. Hang in there.

 

Kurt