Gleason 9 Consult Questions to Ask?

Wife of newly diagnosed (as of 8:30 this AM) husband with prostate cancer here. It's never good when a doc calls early on a Monday morning as my husband's urologist did this morning. My husband was expecting to hear all the news this coming Wednesday to discuss the biopsy he had a week ago. Now he thinks the doc wanted to give him the bad news first so they can concentrate on treatment information on Wednesday.

I'm sorry I don't have those combo scores that make up the Gleason 9 score, so I'll probably be back on the boards later in the week once we have printouts. Because we both want to be as focused as possible during the consultation, we'd like to know what questions my husband should ask on Wednesday. My husband is 70, had "good" PSAs, but started having urinary problems four months ago then bloody urine a month ago. He's a thin, non-smoking runner who eats a healthy diet but had Agent Orange exposure in Viet Nam.

What questions should we prepare for the consultation in two days so that we get the most out of the visit? Thanks in advance.

 

 

 

 

 

 

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Comments

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    Dear Elsie,I am sorry for

    Dear Elsie,

    I am sorry for your husbands diagnosis, and that you have to post here, but this is good place for information.

    As you are probably aware , a diagnosis of a Gleason 9 indicates that there is an aggressive cancer.

    Please let us know what led to your husband getting a biopsy.

    What did the digital rectal exam indicate, what was the PSA history, any other diagnostic tests to date?

    When you receive the pathology results from the biopsy, please let us know how many cores were taken; how many of these cores were positive, the Gleason of each core, and the involvement (that is the percent of the core(s) that was positive; also any other information that you find in the report.

    Here is a thread that was done that will provide some information for you and your husband.

    http://csn.cancer.org/node/258414

    As you go through the above thread and  acquire  other information, please come back with questions, etc....at this site there are knowledgeable posters who can help you.

    We are here for you.

     

    Hopeful and Optimistic

  • VascodaGama
    VascodaGama Member Posts: 3,495 Member

    Dear Elsie,I am sorry for

    Dear Elsie,

    I am sorry for your husbands diagnosis, and that you have to post here, but this is good place for information.

    As you are probably aware , a diagnosis of a Gleason 9 indicates that there is an aggressive cancer.

    Please let us know what led to your husband getting a biopsy.

    What did the digital rectal exam indicate, what was the PSA history, any other diagnostic tests to date?

    When you receive the pathology results from the biopsy, please let us know how many cores were taken; how many of these cores were positive, the Gleason of each core, and the involvement (that is the percent of the core(s) that was positive; also any other information that you find in the report.

    Here is a thread that was done that will provide some information for you and your husband.

    http://csn.cancer.org/node/258414

    As you go through the above thread and  acquire  other information, please come back with questions, etc....at this site there are knowledgeable posters who can help you.

    We are here for you.

     

    Hopeful and Optimistic

    Do not Rush

    I am sorry for the diagnosis of PCa.

    Most probably the doctor wants to speed up the process, advancing with conversations on a treatment, in your next meeting, therefore informing you by phone the "conclusion" of the biopsy. This is typical of “busy” doctors because they have no power to decide. They may advise on therapies but are the patients that will make a decision.

    In other words, the patient should try getting educated in prostate cancer matters including therapies and their risks and side effects (that will prejudice the quality of living) in a short period of time. Busy doctors have no time to teach patients. They will only pass on suggestions. However, treatments for PCa are not that easy and got many pitfalls one may lose in the “game" so that we need to be well informed and prepared, and should not rush into a decision before knowing the details and consequences. The best outcomes also follow the best diagnosis and that should be obtained before thinking in a therapy.

    I would recommend you to prepare a list of questions to expose this time in the consultation and listen and write down notes about what has been discussed. You can tape the talks too and can call the office latter or return to inquire about something you forgot to mention or did not understand.
    After “digesting” the contents discussed with this doctor, you may think in getting another (second) opinion from other specialist(s), so that you should request and keep copies of all test results, biopsy, etc. You can also request for referrals from this doctor.
    Something you need to be careful is about biased opinions. Urologists most of the time recommend surgery and radiologists will recommend radiation. This is typical and you need to “brush” from your shoulder any dust from such guys.

    Here are links to help you in preparing that list of questions;

    http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor

    http://www.mayoclinic.org/diseases-conditions/prostate-cancer/basics/preparing-for-your-appointment/con-20029597

    http://www.cancer.org/Cancer/ProstateCancer/DetailedGuide/prostate-cancer-talking-with-doctor

     

    Booklet about diagnosis and therapy;

    http://www.prostatecentre.com/sites/default/files/Prostate_Cancer_Patient_Education_Booklet.pdf

     

    A “compendium” on Prostate cancer and care;

    http://prostate-cancer.org/decision-aide/where-to-start/prostate-basics/

     

    A book on Prostate cancer;

    “Guide to Surviving Prostate Cancer” by Dr. Patrick Walsh (third edition); which may help you understanding options between surgery and radiation. Walsh is a surgeon so that the book is biased but still a good source for radical treatments.

    Best wishes and luck in his journey.

    VGama

     

  • Beau2
    Beau2 Member Posts: 261
    Elsie,
    Very sorry to hear

    Elsie,

    Very sorry to hear about your husbands PCa. 

    You mentioned that he was a Vietnam vet exposed to agent orange. i am not sure if you are aware of the fact that the VA does offer VA health care and compensation to Vietnam vets exposed to agent orange who now have PCa.

    Here is a link to information on the VA program:

    http://www.publichealth.va.gov/exposures/agentorange/conditions/prostate_cancer.asp

     

    best wishes and good luck.

  • Elsie189
    Elsie189 Member Posts: 13
    Gleason 9 questions to ask

    Thanks all for your responses. This will help us formulate some questions for tomorrow AM. I'll keep you posted.

  • Ralphie62
    Ralphie62 Member Posts: 61
    Elsie189 said:

    Gleason 9 questions to ask

    Thanks all for your responses. This will help us formulate some questions for tomorrow AM. I'll keep you posted.

    consult

    I'mglad you're getting prepared for the appointment...sorry that you have to have it. I just wanted to let you know that my husband did very well with proton therapy at the University of FL at Shands in Jacksonville. There is also LT research at Loma Linda. You should google proton, and go on the Loma linda website. There is a freee book on proton therapy that my husband read, that helped make our decision. He had no neg side effects: he has no incontinence, no impotence, and felt good up until his last tretment. Everyone at the center was pleased with their care. Many had had surgeries that did not keep the cancer at bay. The important thing to know is that his urologist did not consider or offer this option. He was very opposed to the treatment, and pushed surgery, which, of course, he performs. You should read the blogs, even the old ones...I learned more about prostate cancer on these boards, than anywhere else. The people here are great. We are so thankful or PROTON therapy :) it saved his life, without ruining it....lisa

     

  • Elsie189
    Elsie189 Member Posts: 13
    Gleason 9 Update after consult

    Thanks to all of you for responding to my posting as well as on other postings on how to prepare for my husband's consult this morning. All the advice was very helpful. Below are my husband's pathology results, which we partially understand. (Probability scores are a bit of a black box. Any translators in the house?) His PSA right up until biopsy day had been in the normal range. Obviously, that is no longer the case.

    The doc ruled out surgery because my husband had two abdominal surgeries this year--appendectomy then blockage, plus his third pacemaker. So even though he's out running several miles right now, his body is older than his 70 years. The recommendation is for two years of hormone treatment, which will commence within weeks, and 8-10 weeks of radiation, which will begin in January, 2015. We still have to absorb a lot of this, consider the Johns Hopkins second opinion, and other options. Oh, and PS, he must have a colonoscopy ASAP to check on that neck of the woods. His last one was six years ago. So another concern. Any further observations will be helpful. Thank you again. Today would've been very different without your excellent advice already. No need to tread too lightly. We're tough and like things straight up.

    Here's his pathology report:

    Clinical stage T2B                                 Probabilities:

    PSA 3.32                                            Organ confined 39

    Gleason 9 (4+5)                                  Extraprostatic    37

    100% of cores                                     Seminal vessels 19  Lymph nodes+4

     

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    Elsie189 said:

    Gleason 9 Update after consult

    Thanks to all of you for responding to my posting as well as on other postings on how to prepare for my husband's consult this morning. All the advice was very helpful. Below are my husband's pathology results, which we partially understand. (Probability scores are a bit of a black box. Any translators in the house?) His PSA right up until biopsy day had been in the normal range. Obviously, that is no longer the case.

    The doc ruled out surgery because my husband had two abdominal surgeries this year--appendectomy then blockage, plus his third pacemaker. So even though he's out running several miles right now, his body is older than his 70 years. The recommendation is for two years of hormone treatment, which will commence within weeks, and 8-10 weeks of radiation, which will begin in January, 2015. We still have to absorb a lot of this, consider the Johns Hopkins second opinion, and other options. Oh, and PS, he must have a colonoscopy ASAP to check on that neck of the woods. His last one was six years ago. So another concern. Any further observations will be helpful. Thank you again. Today would've been very different without your excellent advice already. No need to tread too lightly. We're tough and like things straight up.

    Here's his pathology report:

    Clinical stage T2B                                 Probabilities:

    PSA 3.32                                            Organ confined 39

    Gleason 9 (4+5)                                  Extraprostatic    37

    100% of cores                                     Seminal vessels 19  Lymph nodes+4

     

    My two cents

     

    Great that you met with the urologist, so have somewhat of an idea where your husband stands.

    I don't completely understand what you posted about the pathology, hopefully another poster will.

    As far as the pathology results, as I understand all of the cores that were taken were positive.......does the report that you have indicate how much of each core was positive?, and were they all 4+5=9, or were there other Gleason scores?

    The numbers that you listed, is that the  probability for cancer in the Seminal vessels and lymph nodes 

    .........

    What led to the biopsy? Digital rectal exam(finger wave) results? Rate of change for PSA readings, what were all of your husbands PSA readings?

    Did he have any diagnostic tests before the biopsy?

    ;;;;;;;;;;

    Did the urologist discuss having a multi-parametric MRI with a Tesla  magnet with you? This can indicate extracapsular extension, although it is very probable that a man with extensive Gleason 9 has extracapsular extension.

     

    Any discussion about a possible pet scan?

    ............

    What insurance does your husband have?

    .......................

    Medical oncologists are the experts in administering various hormones. There are a few urologist who have a doctorate in this, but there  are  very few of these, so I recommend that you find a Medical Oncologist to lead your Medical team.

    .................

    Depending on how extensive the cancer is, your husband may or may not benefit from radiation, since it is possible that the cancer may not be in a treatment range. Side effects from each treatment type is cummulative, so it beholds you and your husband to do research to determine if there would be benefit from radiation treatment.

    ...............................

    Good idea to have the colonoscopy now.

    Additionally ,as a benchmark, good idea to have a bone density test  as well as a Testosterone level test.

    .............. 

    Research, read books, internet, and try to determine a local support group or groups in your area that are great for information.  

    ..........

     

  • VascodaGama
    VascodaGama Member Posts: 3,495 Member
    A bumpy road ahead

    Elsie

    Just as we though (above), the doctor wanted to move into a treatment and such may have been the bases of your consultation. Nothing to lose in proceeding but you should get more advices from other specialists in regards to the diagnosis and treatment choices.

    I wonder why he did suggest the combo treatment of hormonal plus radiation (IMRT).
    Have your husband done any image study?
    What does the pathological report indicate?
    Is there any description of cancer’s location?
    Can you specify about the “blockage” he has done?

    The colonoscopy should be done before anything. In fact, radiation treatments for prostate cancer are prohibitive if the patient has signs of existing ulcerative colitis around the premises of the prostate (within the isodose curves, the field of irradiation). Some doctors also have reservations in the hormonal treatment when treating patients with heart problems. You need to get advice from a cardiologist in regards to hormonal drugs, radiation and X-rays examinations.

    I would recommend you to get a consultation (second opinion) at a cancer centre that analyses your man’s case with a team of specialists. Mayo clinic does that when consulting for treatments of prostate cancer. Surely you can investigate at other clinics/hospitals. Here is a link with details;
    http://www.mayoclinic.org/diseases-conditions/prostate-cancer/care-at-mayo-clinic/why-choose-mayo-clinic/con-20029597

    And now the possible translation in my layman’s opinion:

    Regarding the clinical stage T2b; it means that the Tumour is considered confined within prostate, and that it involves more than 50% of one lobe but not both lobes. The Tumour may or may not be palpable (DRE) or reliably visible by imaging (CT, MRI, Ultrasound (X-rays), Gama, etc). This stage contrasts against your meaning of “100% cores” found in the biopsy. How many needles were taken?

    Here is a link about details;
    http://www.cancer.net/cancer-types/prostate-cancer/stages

    Regarding the PSA = 3.32 ng/ml; the normal range varies with age. I do not know when he did start to get the test but you commented above of “been in the normal range… right up until biopsy day”. Typically, lower than 60 years old the range goes up to 3.5 ng/ml; above 60 y/o it goes up to 4.0 ng/ml.
    Accordingly, the present value should be considered normal. However, Gleason 9 includes the highest aggressivity type of cells (poorly differentiated) which are known to produce lesser serum.
    I wonder what have been the results of previous tests.

    Here is a link about details;
    http://www.medicinenet.com/prostate_specific_antigen/page3.htm

    Regarding the Gleason score 9 (4+5); this is a classification given to the type of cancerous cells found under the microscopy. Gleason rates go from 1 to 5 and the score adds the type most prevalent (first number) to the second most prevalent (second number). Both rates found in the cores are aggressive which classifies these patients at high risk for metastases.
    This cohort of patients usually fares better in combination treatments (not typical sequentials). Some guys start with chemo plus hormonal moving later to a radical (surgery or radiation). The purpose is to attack the cancer from several “fronts” to “oblige” it into remission.
    His doctor’s suggestion of a combo therapy fits this concept, but one should firstly investigate if the body is fit for the therapy, and if the diagnoses are valid. Exams done with the best techniques and equipments (PET, MRI-3t, etc) can assure better identification of your husband’s status. Is the cancer contained?

    Here are links to read about Gleason 9;
    http://en.wikipedia.org/wiki/Gleason_Grading_System
    http://www.nature.com/modpathol/journal/v17/n3/full/3800054a.html

    Regarding the probabilities; these are your doctor’s thresholds based on his past experiences with PCa. His list indicates low probabilities for the cancer to be contained. The difference in such “be or not be contained” is that a radical treatment with intent at cure becomes elusive. The 19% probability of having metastases in the seminal vessels is still worse. Invasion in the lymph nodes is indicated so that the radiation planning should include them at its field.

    You can read more details in the above booklet indicated in my previous post.

    All treatments for prostate cancer have risks and side effects. You should know about them because they may prejudice the quality of living of your husband. The decision on a treatment should also consider what may and may not be acceptable. Drugs interaction should also weigh in the final decision. I recommend that you do other tests while waiting for consultations. Testosterone levels, vitamin D and bone health are important in hormonal treatments. Diet and a change in live tactics become important to counter the treatment effects. Here is a link to UCSF publication on Nutrition & Prostate Cancer, which print out I highly recommend you to get;

    http://cancer.ucsf.edu/_docs/crc/nutrition_prostate.pdf

    You have been wonderful for the care you are providing him. Family is what gives us the impetuous to go forward in these critical moments in life.

    Best wishes and luck in his bumpy road ahead.

    VGama

  • Elsie189
    Elsie189 Member Posts: 13

    My two cents

     

    Great that you met with the urologist, so have somewhat of an idea where your husband stands.

    I don't completely understand what you posted about the pathology, hopefully another poster will.

    As far as the pathology results, as I understand all of the cores that were taken were positive.......does the report that you have indicate how much of each core was positive?, and were they all 4+5=9, or were there other Gleason scores?

    The numbers that you listed, is that the  probability for cancer in the Seminal vessels and lymph nodes 

    .........

    What led to the biopsy? Digital rectal exam(finger wave) results? Rate of change for PSA readings, what were all of your husbands PSA readings?

    Did he have any diagnostic tests before the biopsy?

    ;;;;;;;;;;

    Did the urologist discuss having a multi-parametric MRI with a Tesla  magnet with you? This can indicate extracapsular extension, although it is very probable that a man with extensive Gleason 9 has extracapsular extension.

     

    Any discussion about a possible pet scan?

    ............

    What insurance does your husband have?

    .......................

    Medical oncologists are the experts in administering various hormones. There are a few urologist who have a doctorate in this, but there  are  very few of these, so I recommend that you find a Medical Oncologist to lead your Medical team.

    .................

    Depending on how extensive the cancer is, your husband may or may not benefit from radiation, since it is possible that the cancer may not be in a treatment range. Side effects from each treatment type is cummulative, so it beholds you and your husband to do research to determine if there would be benefit from radiation treatment.

    ...............................

    Good idea to have the colonoscopy now.

    Additionally ,as a benchmark, good idea to have a bone density test  as well as a Testosterone level test.

    .............. 

    Research, read books, internet, and try to determine a local support group or groups in your area that are great for information.  

    ..........

     

    Gleason 9 Update after consult

    Thanks for your input, Hopeful. To answer your questions about my husband's case:

     

    --The DRE (digital rectal exam) led to my husband's biopsy despite his having good PSA. (Sorry, I don't have earlier PSA results. It was 3.34 on day of biopsy.) The prostate felt abnormal to the urologist.

    --My husband is unable to have an MRI because of the metal pacemaker. The urologist will do a workaround with CT, X-RAYS, and contrast test of some kind (might be a PET scan. I will listen to the audiotape my husband made of the consult yesterday.)

    --My husband had some kind of special urine test before the biopsy which showed cancer cells. The urologist says it's likely there is cancer in the urinary tract. Any comments out there on this additional dreadful news?

    --My husband's Medicare Advantage plan turns out to be awful since it's limited to our area and the HMO network. My husband is working on getting his drugs through the VA since aggressive prostate cancer is associated with Agent Orange, which my husband was exposed to. He's in the VA system already because of his earlier heartbeat issue and needing a pacemaker at a young age despite seeming excellent health at the time. I'll probably pose a question about getting drugs and other benefits via VA somewhere on these boards or elsewhere. The to-do list is growing fast.

    Imminent scenario:

    --blood test, colonoscopy, bone scan, starting Casidex meds (hopefully from VA) for a drug that preps my husband for hormone shots in a few weeks. Somewhere in there is a PET scan (or is that the bone scan? Again, I have to bring myself to listen to the tape of the consult today.)

    --3-month hormone shot in two weeks

     

     

    January and beyond: 

    --Radiation 8-10 weeks. There was something mentioned about GO markers in connection with radiation. I'll look it up.

    --bladder exam every three months as biopsy showed slight thickening of the bladder. 

     

    Sorry I'm fuzzy on details and timetables. I do welcome all advice. So thanks in advance for that. 

     

     

     

     

     

     

     

  • Elsie189
    Elsie189 Member Posts: 13

    A bumpy road ahead

    Elsie

    Just as we though (above), the doctor wanted to move into a treatment and such may have been the bases of your consultation. Nothing to lose in proceeding but you should get more advices from other specialists in regards to the diagnosis and treatment choices.

    I wonder why he did suggest the combo treatment of hormonal plus radiation (IMRT).
    Have your husband done any image study?
    What does the pathological report indicate?
    Is there any description of cancer’s location?
    Can you specify about the “blockage” he has done?

    The colonoscopy should be done before anything. In fact, radiation treatments for prostate cancer are prohibitive if the patient has signs of existing ulcerative colitis around the premises of the prostate (within the isodose curves, the field of irradiation). Some doctors also have reservations in the hormonal treatment when treating patients with heart problems. You need to get advice from a cardiologist in regards to hormonal drugs, radiation and X-rays examinations.

    I would recommend you to get a consultation (second opinion) at a cancer centre that analyses your man’s case with a team of specialists. Mayo clinic does that when consulting for treatments of prostate cancer. Surely you can investigate at other clinics/hospitals. Here is a link with details;
    http://www.mayoclinic.org/diseases-conditions/prostate-cancer/care-at-mayo-clinic/why-choose-mayo-clinic/con-20029597

    And now the possible translation in my layman’s opinion:

    Regarding the clinical stage T2b; it means that the Tumour is considered confined within prostate, and that it involves more than 50% of one lobe but not both lobes. The Tumour may or may not be palpable (DRE) or reliably visible by imaging (CT, MRI, Ultrasound (X-rays), Gama, etc). This stage contrasts against your meaning of “100% cores” found in the biopsy. How many needles were taken?

    Here is a link about details;
    http://www.cancer.net/cancer-types/prostate-cancer/stages

    Regarding the PSA = 3.32 ng/ml; the normal range varies with age. I do not know when he did start to get the test but you commented above of “been in the normal range… right up until biopsy day”. Typically, lower than 60 years old the range goes up to 3.5 ng/ml; above 60 y/o it goes up to 4.0 ng/ml.
    Accordingly, the present value should be considered normal. However, Gleason 9 includes the highest aggressivity type of cells (poorly differentiated) which are known to produce lesser serum.
    I wonder what have been the results of previous tests.

    Here is a link about details;
    http://www.medicinenet.com/prostate_specific_antigen/page3.htm

    Regarding the Gleason score 9 (4+5); this is a classification given to the type of cancerous cells found under the microscopy. Gleason rates go from 1 to 5 and the score adds the type most prevalent (first number) to the second most prevalent (second number). Both rates found in the cores are aggressive which classifies these patients at high risk for metastases.
    This cohort of patients usually fares better in combination treatments (not typical sequentials). Some guys start with chemo plus hormonal moving later to a radical (surgery or radiation). The purpose is to attack the cancer from several “fronts” to “oblige” it into remission.
    His doctor’s suggestion of a combo therapy fits this concept, but one should firstly investigate if the body is fit for the therapy, and if the diagnoses are valid. Exams done with the best techniques and equipments (PET, MRI-3t, etc) can assure better identification of your husband’s status. Is the cancer contained?

    Here are links to read about Gleason 9;
    http://en.wikipedia.org/wiki/Gleason_Grading_System
    http://www.nature.com/modpathol/journal/v17/n3/full/3800054a.html

    Regarding the probabilities; these are your doctor’s thresholds based on his past experiences with PCa. His list indicates low probabilities for the cancer to be contained. The difference in such “be or not be contained” is that a radical treatment with intent at cure becomes elusive. The 19% probability of having metastases in the seminal vessels is still worse. Invasion in the lymph nodes is indicated so that the radiation planning should include them at its field.

    You can read more details in the above booklet indicated in my previous post.

    All treatments for prostate cancer have risks and side effects. You should know about them because they may prejudice the quality of living of your husband. The decision on a treatment should also consider what may and may not be acceptable. Drugs interaction should also weigh in the final decision. I recommend that you do other tests while waiting for consultations. Testosterone levels, vitamin D and bone health are important in hormonal treatments. Diet and a change in live tactics become important to counter the treatment effects. Here is a link to UCSF publication on Nutrition & Prostate Cancer, which print out I highly recommend you to get;

    http://cancer.ucsf.edu/_docs/crc/nutrition_prostate.pdf

    You have been wonderful for the care you are providing him. Family is what gives us the impetuous to go forward in these critical moments in life.

    Best wishes and luck in his bumpy road ahead.

    VGama

    Is T2B, Gleason Aggressive Fast or Aggressive not so Fast?

     

    Dear VascodeGama.

    I will answer your questions in detail, as best as I can, when I can, in the next day or two. All of a sudden today, as we were filling out our joint Google calendars, with so many appointments for colonoscopy, bone scan, X-ray (can't have MRI due to pacemaker), radiology oncology consult, first hormone injection, and more!!! I wondered whether it's imperative to be on this express train or a local. We're probably going to get the Johns Hopkins second opinion service at a distance, but that takes ten days, which is close to when the hormone shots start, followed by radiation in January. 

    So my global question is whether this T2b cancer my husband has with the numbers is so fast growing, he should hop the express hormone/radiation treatments right away? Or how much time can he take to get the second opinion, get a bone density, talk to his cardiologist, get the gastroenterologist's report after the about-to-be scheduled colonoscopy, etc? The way we're going, all those results will be coming in just before or just after the first hormone shot in two weeks. Six weeks after that, it's recommended that he start radiation the first week in January. Whew!

    Below us his pathology report, keeping in mind he had two emergency abdominal surgeries in January of this year, supposedly brought on by burst appendix causing a blockage or a blockage causing burst appendix. Oh, yeah, third pacemaker replacement this year since age 50 (but a runner biker kinda guy with exceptional endurance) so not a couch potato.  

    Clinical stage T2B                                 Partin's Probabilities:

    PSA 3.32                                            Organ confined 39

    Gleason 9 (4+5)                                  Extraprostatic    37

    100% of cores                                     Seminal vessels 19  Lymph nodes+4

     
  • VascodaGama
    VascodaGama Member Posts: 3,495 Member
    Prostate cancer does not spread overnight

    Dear Elsie

    I can sense a bite of anxiety in your posts. I hope that my answer is of help to relieve some of your anguish. Remember that you are not alone. We all experience similar feelings at the beginning and struggle to find the right decision.

    Please do not rush without knowing details of what you are doing. I am appalled for the way his doctor is leading his case. He is a busy guy for sure. Diagnosis by the phone, and then conclusions on your second meeting. He has just “sack” you and he doesn’t care for the consequences. He expected you to know details and decide within the three days (Monday to Wednesday) since his calling.

    I recommend you to not trust this doctor. Get all the information (copies of tests, etc, and the biopsy cores and go to see another specialist. It seems that you are dealing with a VA but you can get consultations covered by the military system (free of charge) at private institutions. I hope fellas here help with their experiences regarding VA. Where are you living?

    T2B is a guessed clinical stage indicating the probable “location” of the cancer. It means that it is contained but without an image study they cannot be sure of their statement. If extracapsular extensions (cancer spread out of the prostate) have been verified, then your husband would be a T3 case. In fact being a T2B or T3 would not alter the way of treating your husband. However, if cancer is found in bone (by the bone scan exam) then he is a T4M1 (stage IV) for whom radiation may not be the prime choice. Doctors prefer to keep radiation as a weapon for later attacks. The theory is that radiation cannot over impose previous irradiated areas.

    Gleason score 9 is of the aggressive type. It needs attention and in most of the cases is an indication of probable metastases. But prostate cancer does not spread overnight, no matter where it is located at that particular timing. PCa needs blood to survive and travels via the circulatory system. This is in theory what classifies a cancer of beeing "fast", but it could be any Gleason. 
    Your husband got time to have proper and due analyses and exams to verify which treatment may be more feasible for him, considering his other illnesses. He needs special care and more attention to details.

    Starting the hormonal now or within two months does not alter his health conditions. Radiation should follow the procedure which is usually started 3 months after the first shot of hormonal drugs.

    I bet that this doctor just looked at the calendar and saw the date when the radiation equipment is free, and wrote down your husband’s name in the list. Then he counted back the period required for the hormonal shot which obliged it to be done the soonest.
    If for any reason you got confident and want to go through with this treatment at the above facilities, then you can request it to be delayed. You can call the office and ask for the shot to be done after securing the other exams in hand.

    Typically the hormonal shots are administered after two weeks of taking an antiandrogen (Casodex bicalutamide). You could take it now but I think it better you do nothing before meeting another specialist. They will want to get “unstained” tests, in particular the testosterone that, in a Gleason 9 patient, becomes a very important marker (value before treatment) for judging the success of the treatment, and any progression.

    Many urologists do not like to be contested by the patients, but they are not the ones that will suffer the consequences.

    Best wishes and peace of mind.

    VGama

     

    Note; Regarding the VA benefits, you can try contacting the survivor named ralph.townsend1, via this forum mail. He had the AO problem and is a Gleason 9 patient, being treated at MD Anderson.

    Some links that can help you about VA affairs;

    http://csn.cancer.org/node/237449

    http://www.mdanderson.org/

    http://www.publichealth.va.gov/exposures/agentorange/conditions/prostate_cancer.asp

    http://www.cancer.org/cancer/cancercauses/othercarcinogens/intheworkplace/agent-orange-and-cancer

     

     

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member

    Prostate cancer does not spread overnight

    Dear Elsie

    I can sense a bite of anxiety in your posts. I hope that my answer is of help to relieve some of your anguish. Remember that you are not alone. We all experience similar feelings at the beginning and struggle to find the right decision.

    Please do not rush without knowing details of what you are doing. I am appalled for the way his doctor is leading his case. He is a busy guy for sure. Diagnosis by the phone, and then conclusions on your second meeting. He has just “sack” you and he doesn’t care for the consequences. He expected you to know details and decide within the three days (Monday to Wednesday) since his calling.

    I recommend you to not trust this doctor. Get all the information (copies of tests, etc, and the biopsy cores and go to see another specialist. It seems that you are dealing with a VA but you can get consultations covered by the military system (free of charge) at private institutions. I hope fellas here help with their experiences regarding VA. Where are you living?

    T2B is a guessed clinical stage indicating the probable “location” of the cancer. It means that it is contained but without an image study they cannot be sure of their statement. If extracapsular extensions (cancer spread out of the prostate) have been verified, then your husband would be a T3 case. In fact being a T2B or T3 would not alter the way of treating your husband. However, if cancer is found in bone (by the bone scan exam) then he is a T4M1 (stage IV) for whom radiation may not be the prime choice. Doctors prefer to keep radiation as a weapon for later attacks. The theory is that radiation cannot over impose previous irradiated areas.

    Gleason score 9 is of the aggressive type. It needs attention and in most of the cases is an indication of probable metastases. But prostate cancer does not spread overnight, no matter where it is located at that particular timing. PCa needs blood to survive and travels via the circulatory system. This is in theory what classifies a cancer of beeing "fast", but it could be any Gleason. 
    Your husband got time to have proper and due analyses and exams to verify which treatment may be more feasible for him, considering his other illnesses. He needs special care and more attention to details.

    Starting the hormonal now or within two months does not alter his health conditions. Radiation should follow the procedure which is usually started 3 months after the first shot of hormonal drugs.

    I bet that this doctor just looked at the calendar and saw the date when the radiation equipment is free, and wrote down your husband’s name in the list. Then he counted back the period required for the hormonal shot which obliged it to be done the soonest.
    If for any reason you got confident and want to go through with this treatment at the above facilities, then you can request it to be delayed. You can call the office and ask for the shot to be done after securing the other exams in hand.

    Typically the hormonal shots are administered after two weeks of taking an antiandrogen (Casodex bicalutamide). You could take it now but I think it better you do nothing before meeting another specialist. They will want to get “unstained” tests, in particular the testosterone that, in a Gleason 9 patient, becomes a very important marker (value before treatment) for judging the success of the treatment, and any progression.

    Many urologists do not like to be contested by the patients, but they are not the ones that will suffer the consequences.

    Best wishes and peace of mind.

    VGama

     

    Note; Regarding the VA benefits, you can try contacting the survivor named ralph.townsend1, via this forum mail. He had the AO problem and is a Gleason 9 patient, being treated at MD Anderson.

    Some links that can help you about VA affairs;

    http://csn.cancer.org/node/237449

    http://www.mdanderson.org/

    http://www.publichealth.va.gov/exposures/agentorange/conditions/prostate_cancer.asp

    http://www.cancer.org/cancer/cancercauses/othercarcinogens/intheworkplace/agent-orange-and-cancer

     

     

    Vascos post is excellent and

    Vascos post is excellent and in my opinion on target.

    You mentioned that you are not satisfied with your health coverage. It may be that you can switch to a PPO (where you can go to any doctor that you want) which I believe would start Jan 1 I am not sure of the dates that you may switch medical coverages, but I know that it is about this time of year. 

    Best

    Hopeful

  • Elsie189
    Elsie189 Member Posts: 13

    Prostate cancer does not spread overnight

    Dear Elsie

    I can sense a bite of anxiety in your posts. I hope that my answer is of help to relieve some of your anguish. Remember that you are not alone. We all experience similar feelings at the beginning and struggle to find the right decision.

    Please do not rush without knowing details of what you are doing. I am appalled for the way his doctor is leading his case. He is a busy guy for sure. Diagnosis by the phone, and then conclusions on your second meeting. He has just “sack” you and he doesn’t care for the consequences. He expected you to know details and decide within the three days (Monday to Wednesday) since his calling.

    I recommend you to not trust this doctor. Get all the information (copies of tests, etc, and the biopsy cores and go to see another specialist. It seems that you are dealing with a VA but you can get consultations covered by the military system (free of charge) at private institutions. I hope fellas here help with their experiences regarding VA. Where are you living?

    T2B is a guessed clinical stage indicating the probable “location” of the cancer. It means that it is contained but without an image study they cannot be sure of their statement. If extracapsular extensions (cancer spread out of the prostate) have been verified, then your husband would be a T3 case. In fact being a T2B or T3 would not alter the way of treating your husband. However, if cancer is found in bone (by the bone scan exam) then he is a T4M1 (stage IV) for whom radiation may not be the prime choice. Doctors prefer to keep radiation as a weapon for later attacks. The theory is that radiation cannot over impose previous irradiated areas.

    Gleason score 9 is of the aggressive type. It needs attention and in most of the cases is an indication of probable metastases. But prostate cancer does not spread overnight, no matter where it is located at that particular timing. PCa needs blood to survive and travels via the circulatory system. This is in theory what classifies a cancer of beeing "fast", but it could be any Gleason. 
    Your husband got time to have proper and due analyses and exams to verify which treatment may be more feasible for him, considering his other illnesses. He needs special care and more attention to details.

    Starting the hormonal now or within two months does not alter his health conditions. Radiation should follow the procedure which is usually started 3 months after the first shot of hormonal drugs.

    I bet that this doctor just looked at the calendar and saw the date when the radiation equipment is free, and wrote down your husband’s name in the list. Then he counted back the period required for the hormonal shot which obliged it to be done the soonest.
    If for any reason you got confident and want to go through with this treatment at the above facilities, then you can request it to be delayed. You can call the office and ask for the shot to be done after securing the other exams in hand.

    Typically the hormonal shots are administered after two weeks of taking an antiandrogen (Casodex bicalutamide). You could take it now but I think it better you do nothing before meeting another specialist. They will want to get “unstained” tests, in particular the testosterone that, in a Gleason 9 patient, becomes a very important marker (value before treatment) for judging the success of the treatment, and any progression.

    Many urologists do not like to be contested by the patients, but they are not the ones that will suffer the consequences.

    Best wishes and peace of mind.

    VGama

     

    Note; Regarding the VA benefits, you can try contacting the survivor named ralph.townsend1, via this forum mail. He had the AO problem and is a Gleason 9 patient, being treated at MD Anderson.

    Some links that can help you about VA affairs;

    http://csn.cancer.org/node/237449

    http://www.mdanderson.org/

    http://www.publichealth.va.gov/exposures/agentorange/conditions/prostate_cancer.asp

    http://www.cancer.org/cancer/cancercauses/othercarcinogens/intheworkplace/agent-orange-and-cancer

     

     

    Gleason 9, T2B Treatment Developments

    Thanks Vasco and Hope. We are following some of your advice to slow things down a bit so that there's time to get a second opinion (Dana Farber since we're in MA) after colonoscopy, bone scan, X-Ray and blood test results are in. So far only the blood test has been done since the consultation. 

    Since my husband doesn't even have a colonoscopy date and the bone scan would come right before first hormone shot, he decided not to start Casodex at this time. He is postponing the first hormone shot to the first of the year. This buys some time to travel to Farber with all results.

    Since my husband did have soft tissue blockage near his appendix less than a year ago, having colonoscopy results is critical in having the Farber consultation. I discovered some info about prostate/colon cancer connection.  http://www.nyhq.org/diw/Content.asp?PageID=DIW010108

    He's probably going to see his pacemaker cardiologist as well about effects of hormone blocking drugs on his heart. Bone density? testosterone levels? So, yes, a lot to schedule. 

    I thank everyone on this thread for the help so far. I'll keep checking in. I may start a VA/Agent Orange thread elsewhere on the boards to learn about the ropes. Our Medicare Advantage policy and urology practice are private but they deal with the VA, which fills scripts and/or sends people over to the practice. That can lower the co-pay by a lot. I need to find out how to set this up for my husband. Thanks all.

     

     

  • tarhoosier
    tarhoosier Member Posts: 195

    Prostate cancer does not spread overnight

    Dear Elsie

    I can sense a bite of anxiety in your posts. I hope that my answer is of help to relieve some of your anguish. Remember that you are not alone. We all experience similar feelings at the beginning and struggle to find the right decision.

    Please do not rush without knowing details of what you are doing. I am appalled for the way his doctor is leading his case. He is a busy guy for sure. Diagnosis by the phone, and then conclusions on your second meeting. He has just “sack” you and he doesn’t care for the consequences. He expected you to know details and decide within the three days (Monday to Wednesday) since his calling.

    I recommend you to not trust this doctor. Get all the information (copies of tests, etc, and the biopsy cores and go to see another specialist. It seems that you are dealing with a VA but you can get consultations covered by the military system (free of charge) at private institutions. I hope fellas here help with their experiences regarding VA. Where are you living?

    T2B is a guessed clinical stage indicating the probable “location” of the cancer. It means that it is contained but without an image study they cannot be sure of their statement. If extracapsular extensions (cancer spread out of the prostate) have been verified, then your husband would be a T3 case. In fact being a T2B or T3 would not alter the way of treating your husband. However, if cancer is found in bone (by the bone scan exam) then he is a T4M1 (stage IV) for whom radiation may not be the prime choice. Doctors prefer to keep radiation as a weapon for later attacks. The theory is that radiation cannot over impose previous irradiated areas.

    Gleason score 9 is of the aggressive type. It needs attention and in most of the cases is an indication of probable metastases. But prostate cancer does not spread overnight, no matter where it is located at that particular timing. PCa needs blood to survive and travels via the circulatory system. This is in theory what classifies a cancer of beeing "fast", but it could be any Gleason. 
    Your husband got time to have proper and due analyses and exams to verify which treatment may be more feasible for him, considering his other illnesses. He needs special care and more attention to details.

    Starting the hormonal now or within two months does not alter his health conditions. Radiation should follow the procedure which is usually started 3 months after the first shot of hormonal drugs.

    I bet that this doctor just looked at the calendar and saw the date when the radiation equipment is free, and wrote down your husband’s name in the list. Then he counted back the period required for the hormonal shot which obliged it to be done the soonest.
    If for any reason you got confident and want to go through with this treatment at the above facilities, then you can request it to be delayed. You can call the office and ask for the shot to be done after securing the other exams in hand.

    Typically the hormonal shots are administered after two weeks of taking an antiandrogen (Casodex bicalutamide). You could take it now but I think it better you do nothing before meeting another specialist. They will want to get “unstained” tests, in particular the testosterone that, in a Gleason 9 patient, becomes a very important marker (value before treatment) for judging the success of the treatment, and any progression.

    Many urologists do not like to be contested by the patients, but they are not the ones that will suffer the consequences.

    Best wishes and peace of mind.

    VGama

     

    Note; Regarding the VA benefits, you can try contacting the survivor named ralph.townsend1, via this forum mail. He had the AO problem and is a Gleason 9 patient, being treated at MD Anderson.

    Some links that can help you about VA affairs;

    http://csn.cancer.org/node/237449

    http://www.mdanderson.org/

    http://www.publichealth.va.gov/exposures/agentorange/conditions/prostate_cancer.asp

    http://www.cancer.org/cancer/cancercauses/othercarcinogens/intheworkplace/agent-orange-and-cancer

     

     

    Proper path

    I am less concerned about the doctor than VdaG. Diagnosis by phone is the standard since it is the result of the biopsy. I was G9 and 11 of 12+ and heard by phone. It gave me some time to prepare for the meeting at the office.

    The G9, 100% of samples positive, means that the cancer has escaped the gland. No doubt. Considering the age of the man, his medical history and conditions, some type of hormone therapy (HT) and radiation is a given as treatment. Surgery is absolutely the wrong way. Unless there is a solid reason to delay HT, then now rather than later, even two months later should be the choice. Further waiting will not change the current diagnosis or pathology. I cannot see any second medical opinion changing what I have described here unless it is the overall length of HT or the type of radiation. This means the second opinion can take place after the initiation of HT now or quite soon. HT is inevitable, given these diagnosis figures. Waiting invites risk and enables denial.

    The better news is that with the best treatment this man has a good chance of dying of some other condition.

  • Elsie189
    Elsie189 Member Posts: 13

    Proper path

    I am less concerned about the doctor than VdaG. Diagnosis by phone is the standard since it is the result of the biopsy. I was G9 and 11 of 12+ and heard by phone. It gave me some time to prepare for the meeting at the office.

    The G9, 100% of samples positive, means that the cancer has escaped the gland. No doubt. Considering the age of the man, his medical history and conditions, some type of hormone therapy (HT) and radiation is a given as treatment. Surgery is absolutely the wrong way. Unless there is a solid reason to delay HT, then now rather than later, even two months later should be the choice. Further waiting will not change the current diagnosis or pathology. I cannot see any second medical opinion changing what I have described here unless it is the overall length of HT or the type of radiation. This means the second opinion can take place after the initiation of HT now or quite soon. HT is inevitable, given these diagnosis figures. Waiting invites risk and enables denial.

    The better news is that with the best treatment this man has a good chance of dying of some other condition.

    Bladder biopsy for my Gleason 9 SO. Any thoughts?

    Anyone out there get a bladder biopsy? My husband's urologist scheduled it because he wasn't happy with the CT scan.

    I appreciate your response Tar Hoosier as well as the thoughtful others, especially V. de Gama. The two-part delivery of the urologist's diagnosis didn't bother us too much. It gave us a couple days to do research and get good advice from people on this board. Still, last week was overwhelming. One week my husband was out running four miles a day five days a week, took nothing but a baby aspirin, and now he's got aggressive prostate cancer and everything that goes with it. So you all know what this is like. (I am mindful that his two abdominal surgeries and the pacemaker belie my husband's still healthy appearance. The bad stuff is on the inside right now, not outside.)

    No, there won't be surgery. My husband had the bone scan this AM, starts the Casodex today, meets with a radiology oncologist on Thursday, will have a bladder biopsy in two weeks, and get the hormone shot in two weeks. He sees his internist to pull this together in a week, if not sooner. He still wants a second opinion, so we may be headed to Dana Farber soon. It's more to make sure our local docs are doing the right things. We also want to know how my husband's two abdominal surgeries may impact radiation or vice versa. Onward! 

     

  • VascodaGama
    VascodaGama Member Posts: 3,495 Member
    Elsie189 said:

    Bladder biopsy for my Gleason 9 SO. Any thoughts?

    Anyone out there get a bladder biopsy? My husband's urologist scheduled it because he wasn't happy with the CT scan.

    I appreciate your response Tar Hoosier as well as the thoughtful others, especially V. de Gama. The two-part delivery of the urologist's diagnosis didn't bother us too much. It gave us a couple days to do research and get good advice from people on this board. Still, last week was overwhelming. One week my husband was out running four miles a day five days a week, took nothing but a baby aspirin, and now he's got aggressive prostate cancer and everything that goes with it. So you all know what this is like. (I am mindful that his two abdominal surgeries and the pacemaker belie my husband's still healthy appearance. The bad stuff is on the inside right now, not outside.)

    No, there won't be surgery. My husband had the bone scan this AM, starts the Casodex today, meets with a radiology oncologist on Thursday, will have a bladder biopsy in two weeks, and get the hormone shot in two weeks. He sees his internist to pull this together in a week, if not sooner. He still wants a second opinion, so we may be headed to Dana Farber soon. It's more to make sure our local docs are doing the right things. We also want to know how my husband's two abdominal surgeries may impact radiation or vice versa. Onward! 

     

    Cystoscopy

    I think it better you prepare again a List of Questions for the next meeting at the biopsy. You should ask details about the CT scan. What abnormalities did the doctor find and where were they located (inside the bladder or in the outer walls). You can secure again a copy of the film and keep it in his file. I hope that the bone scan is negative, but it is hard to believe in the results of those exams for their limited detection. PET scan is better and possible in pacemaker patients. I am not sure about the use of specific contrast agents, such as the C11 choline.

    The typical biopsy procedure is simple and done under localized anaesthesia. With the cystoscopy they will pinch a small piece of tissue so that your husband will have some discomfort for two days until it heals, but you need not to be worried. You may be allowed to watch the images on the screen, if you request for such. It may relief your anxiety.

    Regarding your scheduling, I think it better you get the second opinion at Dana Farber the soonest. Also try having a testosterone test done now (at a local laboratory) before the agonist shot. This test uses a blood sample and costs a mere $30 and it will be of great help in future comparisons.
    In all meetings you should comment always of his other health interventions, the coronary problems and the pacemaker issue. I wonder about the bone density scan (DEXA). It can be done now at the same place of the bone scan When meeting the radiologist you should discuss about the issue of ulcerative colitis. Does he recommend a colonoscopy?

    Tarhoosier above recommends the hormonal therapy as the most probable choice to treat your husband. It may be, however, HT (Androgen Deprivation Therapy) is not to every patient, in particular those with congestive heart failures or prior heart attacks, who are 3.3-times at increased risk of death from heart problems, when on ADT. I think you should discuss the matter with specialists for peace of mind. Please note that I am only suggesting lay opinions based on my experiences with the disease and researches done along my 14 years of survivorship.

    Best wishes in the continuing diagnoses. You are doing it well in being active with the tests and exams while gathering more details. Casodex will not influence the “route” you take.

     

    Best,

    VG

     

  • Elsie189
    Elsie189 Member Posts: 13

    Cystoscopy

    I think it better you prepare again a List of Questions for the next meeting at the biopsy. You should ask details about the CT scan. What abnormalities did the doctor find and where were they located (inside the bladder or in the outer walls). You can secure again a copy of the film and keep it in his file. I hope that the bone scan is negative, but it is hard to believe in the results of those exams for their limited detection. PET scan is better and possible in pacemaker patients. I am not sure about the use of specific contrast agents, such as the C11 choline.

    The typical biopsy procedure is simple and done under localized anaesthesia. With the cystoscopy they will pinch a small piece of tissue so that your husband will have some discomfort for two days until it heals, but you need not to be worried. You may be allowed to watch the images on the screen, if you request for such. It may relief your anxiety.

    Regarding your scheduling, I think it better you get the second opinion at Dana Farber the soonest. Also try having a testosterone test done now (at a local laboratory) before the agonist shot. This test uses a blood sample and costs a mere $30 and it will be of great help in future comparisons.
    In all meetings you should comment always of his other health interventions, the coronary problems and the pacemaker issue. I wonder about the bone density scan (DEXA). It can be done now at the same place of the bone scan When meeting the radiologist you should discuss about the issue of ulcerative colitis. Does he recommend a colonoscopy?

    Tarhoosier above recommends the hormonal therapy as the most probable choice to treat your husband. It may be, however, HT (Androgen Deprivation Therapy) is not to every patient, in particular those with congestive heart failures or prior heart attacks, who are 3.3-times at increased risk of death from heart problems, when on ADT. I think you should discuss the matter with specialists for peace of mind. Please note that I am only suggesting lay opinions based on my experiences with the disease and researches done along my 14 years of survivorship.

    Best wishes in the continuing diagnoses. You are doing it well in being active with the tests and exams while gathering more details. Casodex will not influence the “route” you take.

     

    Best,

    VG

     

    Awaiting test results + thanks

    Thanks, Vasco. 

    I wanted to let you know we're in waiting mode right now for blood test and bone scan test results. Up next will be EKG, bladder biopsy, colonoscopy. My husband is juggling his schedule. The second opinion will not be from Dana Farber but Mass General instead for various reasons too busy to go into. However, we need test results before that can happen. In any case, my husband has decided to commence with hormone treatment and is on Casodex right now. He's never had a heart attack or angina but slow heartbeat, which is why he has a pacemaker. The EKG will give a fuller picture. 

     

    I'll check back in when we have more intel.

  • VascodaGama
    VascodaGama Member Posts: 3,495 Member
    Elsie189 said:

    Awaiting test results + thanks

    Thanks, Vasco. 

    I wanted to let you know we're in waiting mode right now for blood test and bone scan test results. Up next will be EKG, bladder biopsy, colonoscopy. My husband is juggling his schedule. The second opinion will not be from Dana Farber but Mass General instead for various reasons too busy to go into. However, we need test results before that can happen. In any case, my husband has decided to commence with hormone treatment and is on Casodex right now. He's never had a heart attack or angina but slow heartbeat, which is why he has a pacemaker. The EKG will give a fuller picture. 

     

    I'll check back in when we have more intel.

    Shall we dance? I am happy

    General Mass Cancer Center is among the best. I hope you get an appointment with a radiation oncologist and medical oncologist. This hospital has been in advanced trials for PCa with many qualified researchers. Your husband may benefit in future from becoming one of their registered patients. I have been following developments in their trial of a newer antiandrogen that seems to “bit” all the others in the “market”, in terms of outcomes and lesser side effects. (http://www.ncbi.nlm.nih.gov/pubmed/22266222)

    Well done. You are taking the right steps.

    Wishing you luck.

    VGama

  • Elsie189
    Elsie189 Member Posts: 13
    Gleason 9 current updates on recent tests

    Hi, all.

    --I just wanted to let you know that after a second round of X-rays to more closely examine some spots on the recent bone scan, the spots were determined to be old injuries. So that was a relief.

    --We're back to trying to schedule Dana Farber again since my husband's urologist is already in the Mass General system and following their protocols. For a true second opinion, my husband wants to go outside that loop.

    --Having said that, he's already on the hormone treatment and got the first shot of Zoladex--a 3-month one--a few days ago after a few weeks of Casodex. No side effects so far.

    --He got an EKG--everything is good in that department. His pacemaker is for electrical problems, but there are no blockages. He has great low blood pressure, and great numbers for cholesterol, LDL, etc. Yeah, so too bad HE HAS AGGRESSIVE PROSTATE CANCER!!!! 

    --the somewhat nerve-wracking bladder biopsy is next Wednesday with a follow-up consult on that a week later. 

    --He's got a colonoscopy scheduled for first week in January after we return from a long visit south with family. He met with the GI doc who studied his surgery reports.

    --We've met with the radiation oncologist (also in the Mass General system but out our way) who is working up the game plan, which will be discussed and scheduled for mid-January. That was a big day--five hours, plus that doc requested the extra bone-X-rays. 

    So that's where things stand--or not stand since we've gone to more doctors and for more tests than our entire lives. Thanks so much.

  • shirley40
    shirley40 Member Posts: 1
    Elsie189 said:

    Gleason 9 current updates on recent tests

    Hi, all.

    --I just wanted to let you know that after a second round of X-rays to more closely examine some spots on the recent bone scan, the spots were determined to be old injuries. So that was a relief.

    --We're back to trying to schedule Dana Farber again since my husband's urologist is already in the Mass General system and following their protocols. For a true second opinion, my husband wants to go outside that loop.

    --Having said that, he's already on the hormone treatment and got the first shot of Zoladex--a 3-month one--a few days ago after a few weeks of Casodex. No side effects so far.

    --He got an EKG--everything is good in that department. His pacemaker is for electrical problems, but there are no blockages. He has great low blood pressure, and great numbers for cholesterol, LDL, etc. Yeah, so too bad HE HAS AGGRESSIVE PROSTATE CANCER!!!! 

    --the somewhat nerve-wracking bladder biopsy is next Wednesday with a follow-up consult on that a week later. 

    --He's got a colonoscopy scheduled for first week in January after we return from a long visit south with family. He met with the GI doc who studied his surgery reports.

    --We've met with the radiation oncologist (also in the Mass General system but out our way) who is working up the game plan, which will be discussed and scheduled for mid-January. That was a big day--five hours, plus that doc requested the extra bone-X-rays. 

    So that's where things stand--or not stand since we've gone to more doctors and for more tests than our entire lives. Thanks so much.

    Fight aggressively from the start!

    My husband had an aggressive prostate cancer diagnosis (Gleason 9) in March, 2013.  He received anti-testosterone injections every 3 to 6 months (Lupron was used).  We thought that would take care of the cancer.  All the urologists we talked to said not to worry because the Lupron will take care of it. This is an exact quote from one of the urologists: You will die with this cancer rather than from it.  We were never warned about the fact that a Gleason 9 meant that we should be more aggressive in using other therapies along with Lupron. 

    A few months ago, my husband again had problems urinating and his urologist thought there might be some adhesions left over from the first surgery.  A routine urinary tract clean-out was scheduled that would last about 30 minutes.  Well!  Instead, the procedure took an hour and a half because a large tumor had grown out of the prostate into the bladder and covered the trigone area at the base of the bladder.  His tumor actually grew on Lupron.  The urologist removed as much of the tumor as he could and told me the shocking news immediately after the surgery. 

    We went to a medical oncologist who first wanted a PET scan to see where else the cancer might be.  We were relieved to find that the cancer was contained in the bladder and had not metastasized to lymph nodes.  One small spot in one of the femurs may also be cancer.  We also scheduled radiation therapy and had the preliminary CT scans done to make precise measurements of the lower pelvic area.  In the meantime, we started what the oncologist said would be a mild chemotherapy (Taxotere).  The first chemo treatment was tolerated well, but the second treatment was an absolute disaster!  My husband was greatly fatigued, had no appetite, and became very weak.

    The beginning of this week, we were going for a third chemo session when my husband collapsed as he got into the cancer center.  To make a long story short, he is fighting for his life right now in an intensive care unit.  The intestinal tract was severely affected by the chemo treatments and he now has a large duodenal ulcer that has penetrated into the outer muscular layers of the intestinal wall.  An endoscopist was able to stop the bleeding and acturally saved his life--at least for the time being.  I am sure the chemo did not cause the ulcer, but it certainly made it life-threatening.  The bone marrow has been severely affected, and up to this date he has received 3 units of whole blood to boost his red blood cells and white blood cells.  In addition, he has gotten white blood cell injections.  Essentially, he is not yet able to make enough blood cells to keep himself healthy.

    My advice is that anytime you get a Gleason 9 score, treat it aggressively from the start.  This cancer is not the prostate cancer that you will die with.  It can kill you!