Low Gleason, not aggressive, mets to bone?

24

Comments

  • rogerdlama48@gmail.com
    [email protected] Member Posts: 11 Member
    I had a Gleason score 9 & had

    I had a Gleason score 9 & had open surgery radical prepubic prostatectomy with pelvic lymph node dissection and seven weeks of radiation therapy treatments for cancer spread into my bladder and bone scan and mri of my spine and my radiation doctor said that he thought they looked okay.

    Cat scan and bone scan before removal surgery was supposed to be okay also and the lymph nodes that were removed were negative.

    I want to request a pet scan. That's what everyone tells me to ask for.

    My veterans administration urologist retired last week without notice and gave me prescription for Percocet 10 mg , 150 pills for 30 days and I called for refill like he told me and that's how I found out he retired and they contacted my primary care physician at the local VA outpatient clinic and they refused to write a request for refill and I have been going through withdrawal for three days.

    Hopefully the radiation oncology clinic will request the pet scan because I don't know when they will be getting another urologist at the Chillicothe VA hospital that I go to.

    My psa before removal was only 4.9 & biopsy was Gleason 9.

    So I would say that you probably don't have prostate cancer in your bones but I don't know anything and your doctor will find out for you.

    My Gleason score year before was 4 & that is the cutoff for normal and I must have had the cancer then and since the VA doctor don't do digital rectal examination and only the psa tests caused my cancer to get aggressive and fortunately I hope doesn't come back or spread to my bones.

    I probably had the cancer even longer than that psa test the previous year and my radiation doctor said that he can't determine if I am cancer free using the psa test and my recent psa test was < .01.

    But it was also the same < .01 after removal and before radiation therapy treatments when I still had the cancer in my bladder.

    I know someone who had PSA 2.7 & his biopsy was Gleason 9 aggressive cancer. PSA is not accurate for detecting existing prostate cancer and it takes the biopsy to confirm positive for cancer.

    Thanks and good luck. My life is miserable and I wish it was detected sooner and I could have had radiation therapy instead of the radical prepubic prostatectomy.

    Open surgery gave me a 12 inch incision with over twenty staples and blood clots and fluid in my lungs and hospitalized for two months.

    I wish I could have had the davinci robotic surgery but the Wright Patterson Air Force Base Hospital didn't have one.

    All we can do is hope and pray.

     

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

    Please start a new thread so we can direct our responses to your case only and not infringe on this thread

  • Tdoyle
    Tdoyle Member Posts: 36
    Bone Biopsy

    Got my results back from the bone biospy from the suspicious spot on my rib and it did not show any cancer there...So I am at the point of the decisionof what to do with my 7 of 24 core of a 3=3 gleason score.....Time to do my reading and research on my best option...

  • Old Salt
    Old Salt Member Posts: 955 Member
    Great news!

      No metastasis!

  • contento
    contento Member Posts: 75
    wow !

    Tdoyle, what an emotional  turnaround  for you ! Given that new info essentially  all the treatment options ( or not ) are open to you. Like you said research hard so you could make the best choice for your givin situation.

    Does the doc want to rescan in a few months ? or is he/ she satisfied with the biopsy results ?

  • VascodaGama
    VascodaGama Member Posts: 3,529 Member
    What to do next?

    I am glad for the news. I like the way you taking in dealing with the problem. At 53 years old you are risking your well being and quality of life. I hope newbies reading your story follow your style.

    I wonder about the location of the seven positive cores identified in the pathologist's report. They are many for the 24 units taken but these could be cores from the same place where the previous biopsy located the solo (1 out of 12) positive core. In such a case your cancer may be a single large tumour (probably a colony of micrometastases for the high PSA they produce), that could be whole contained in the gland (T1c/T2).

    In any case you should consider other important information to incorporate in your final judgment. Can you tell us what made you to have the PSA checked/ Was there any symptom like difficulty in urinating or pain? Have you done a DRE? What was the result? Did the pathologist identify any hyperplasia to justify the high PSA? What is the size of your prostate?

    The low Gleason patterns provides low risks for existing metastases. Gleason rate 3 could also be a lower rate (ex: rate 2) indicating still a lower aggressive type of cancerous cells. With this diagnosis you may chose to treat or follow AS (active surveillance) postponing the treatment while continuing checking the bandit for any progression. At your age I would take the treatment side effects seriously into consideration. Research the details and consequences and involve your family in the final decision.

    Best wishes and luck in your journey.

    VGama

  • Tdoyle
    Tdoyle Member Posts: 36

    What to do next?

    I am glad for the news. I like the way you taking in dealing with the problem. At 53 years old you are risking your well being and quality of life. I hope newbies reading your story follow your style.

    I wonder about the location of the seven positive cores identified in the pathologist's report. They are many for the 24 units taken but these could be cores from the same place where the previous biopsy located the solo (1 out of 12) positive core. In such a case your cancer may be a single large tumour (probably a colony of micrometastases for the high PSA they produce), that could be whole contained in the gland (T1c/T2).

    In any case you should consider other important information to incorporate in your final judgment. Can you tell us what made you to have the PSA checked/ Was there any symptom like difficulty in urinating or pain? Have you done a DRE? What was the result? Did the pathologist identify any hyperplasia to justify the high PSA? What is the size of your prostate?

    The low Gleason patterns provides low risks for existing metastases. Gleason rate 3 could also be a lower rate (ex: rate 2) indicating still a lower aggressive type of cancerous cells. With this diagnosis you may chose to treat or follow AS (active surveillance) postponing the treatment while continuing checking the bandit for any progression. At your age I would take the treatment side effects seriously into consideration. Research the details and consequences and involve your family in the final decision.

    Best wishes and luck in your journey.

    VGama

    7 of 24

    The 7 cores all on the right mid and right side of the prostate.. The urologist thought like you that it is probably a tumer on that side.. I went for my yearly check up and when they did blood work they found my PSA was around 6, I had them check it again a few days later and it was still a 5.6... thats when this all started..I have had a DRE done by 4 differnet doctors along this journey and all said it was normal..I have had non what so ever problems with urination and everything is normal in that area. 

    And thank you VGama for the kind words. I am really considering everything and I am involving the whole family in this. I have to stay around a while. I have 2 daughters ages 16 and 22 that I have to see get married and one graduate high school....

  • VascodaGama
    VascodaGama Member Posts: 3,529 Member
    You will be around not just for your children but grandchildren

    Tdoyle,

    Let's be realistic. PCa may be a killing cancer but it takes long and the patient must be in a very advanced status to real get problems from it. This impression comes from the real statistics. One may well expect to die from other causes when his cancer is low aggressive and indolent. In my 17 years as a survivor I have come across of so many cases in all varieties, colors and shapes which makes me to opinion as I do in this forum. Once diagnosed one should try identifying his real status, be vigilant and treat when necessary. Doing nothing is no good and treating thinking that such will close the bad chapter of one's life is a mistake. The bandit is now our unwanted guest. One must do something, done intelligently, timely and in no rush, even if his case is quite advanced.
    Some guys die earlier because of the treatment effects. These effects are real and they did not exist before an intervention. Many times we see us caring more for the effects of a treatment than the cancer itself. It is imperative therefore to know the details of what we are involving in our case.

    Your added information supports my comment in the above post that you may have a contained case. Negative DRE makes it a T1c and the location of all positive cores turns the initial biopsy results (of 1 in 12 cores positive) and the confirmed Gleason 6 as a leading result to recommend AS as the best approach. Active Surveillance implies a vigilant period in a sort of military disciplinary regiment of testing along the patient's life to check on the bandit's developments. It is like our annual health check up but it involves additional testing in shorter periods. It is not easy for those that do not like to sleep with the enemy in the same bed but it avoids the risks and consequences of an intervention without prejudice on the outcomes of a latter attack. Our families will need to educate on the matter too so that no one is apprehended for the fact of having the bandit in the house.

    With the data in hands, any options you chose seem good. I hope you find that peace of mind so deserved after the dramatic period of the diagnosis.

    Best wishes,

    VGama 

     

  • Tdoyle
    Tdoyle Member Posts: 36
    edited December 2017 #30

    You will be around not just for your children but grandchildren

    Tdoyle,

    Let's be realistic. PCa may be a killing cancer but it takes long and the patient must be in a very advanced status to real get problems from it. This impression comes from the real statistics. One may well expect to die from other causes when his cancer is low aggressive and indolent. In my 17 years as a survivor I have come across of so many cases in all varieties, colors and shapes which makes me to opinion as I do in this forum. Once diagnosed one should try identifying his real status, be vigilant and treat when necessary. Doing nothing is no good and treating thinking that such will close the bad chapter of one's life is a mistake. The bandit is now our unwanted guest. One must do something, done intelligently, timely and in no rush, even if his case is quite advanced.
    Some guys die earlier because of the treatment effects. These effects are real and they did not exist before an intervention. Many times we see us caring more for the effects of a treatment than the cancer itself. It is imperative therefore to know the details of what we are involving in our case.

    Your added information supports my comment in the above post that you may have a contained case. Negative DRE makes it a T1c and the location of all positive cores turns the initial biopsy results (of 1 in 12 cores positive) and the confirmed Gleason 6 as a leading result to recommend AS as the best approach. Active Surveillance implies a vigilant period in a sort of military disciplinary regiment of testing along the patient's life to check on the bandit's developments. It is like our annual health check up but it involves additional testing in shorter periods. It is not easy for those that do not like to sleep with the enemy in the same bed but it avoids the risks and consequences of an intervention without prejudice on the outcomes of a latter attack. Our families will need to educate on the matter too so that no one is apprehended for the fact of having the bandit in the house.

    With the data in hands, any options you chose seem good. I hope you find that peace of mind so deserved after the dramatic period of the diagnosis.

    Best wishes,

    VGama 

     

    Thank you

    Thank you for your input, you put it in a way I can understand... I spoke with the nurse of the Oncologist that ordered the Pet scan and he wants me to just come back for the MRI of the prostate that is scheduled in Feburuary. He thinks they got a good sample from the suspicious rib on the bone biospy and confirmed what he thought from the beginning that it was rare for my stage to spread. 

    Its been a journey from going from a Oncologist and Radiologist here in my town to do the scans and say "well you have bone cancer and we are sorry"  to the point I am now... And also I am on Lupron hormone 4 month shot, and will be very glad for this to wear off...and I am looking serious into AS for now...

    Again thank you

  • Tdoyle
    Tdoyle Member Posts: 36
    Bone biopsy results

    Here are the results from the radiologist on the bone biopsy done on 11/20/17

     

     

    Case Report


    Clinical Information
    53 yo M with hx of prostate cancer, presents with 9th right rib lesion.
     
    FINAL DIAGNOSIS


    A. Bone, right 9th rib, biopsy:

    - Abundant woven bone formation and fibrous stroma, negative for carcinoma in this sample; see comment.


    Electronically signed by Matthew R. Lindberg, MD on 11/22/2017 at  1:10 PM
    Comment
    Immunohistochemical stains for pancytokeratin, PSA, and PSAP are performed with adequate controls and found to be negative, providing no support for metastatic carcinoma. However, there is abundant new bone formation suggestive of an osteoblastic process, and given the reported history of prostatic adenocarcinoma, an osteoblastic metastasis cannot be ruled out from this sample. If clinical concern for malignancy persists, additional sampling is recommended.
     
    Gross Description
    Specimen A is received in formalin, labeled with the patient's name, Troy D Doyle, medical record number, 003304000, and 3/2/1964.  The specimen consists of three fragment of tan bone measuring 0.6 x 0.6 x 0.2 cm in aggregate.  Specimen A is submitted entirely inside a yellow biopsy cassette A1.  

    Tierra Holland 
    11/20/2017
     
    Microscopic Description


    Performed if applicable.


     
    Attestation
    Matthew R. Lindberg, MD 
    Electronically Signed on 11/22/2017, 1:09 PM 

    I have reviewed the pertinent gross findings, any and all microscopic slides and the Resident’s/ Fellow’s interpretations.  I have made appropriate editorial changes and have rendered the final diagnosis.
     
  • Tdoyle
    Tdoyle Member Posts: 36
    Bone biopsy results

    Case Report


    Clinical Information
    53 yo M with hx of prostate cancer, presents with 9th right rib lesion.
     
    FINAL DIAGNOSIS


    A. Bone, right 9th rib, biopsy:

    - Abundant woven bone formation and fibrous stroma, negative for carcinoma in this sample; see comment.


    Electronically signed by Matthew R. Lindberg, MD on 11/22/2017 at  1:10 PM
    Comment
    Immunohistochemical stains for pancytokeratin, PSA, and PSAP are performed with adequate controls and found to be negative, providing no support for metastatic carcinoma. However, there is abundant new bone formation suggestive of an osteoblastic process, and given the reported history of prostatic adenocarcinoma, an osteoblastic metastasis cannot be ruled out from this sample. If clinical concern for malignancy persists, additional sampling is recommended.
     
    Gross Description
    Specimen A is received in formalin, labeled with the patient's name, Troy D Doyle, medical record number, 003304000, and 3/2/1964.  The specimen consists of three fragment of tan bone measuring 0.6 x 0.6 x 0.2 cm in aggregate.  Specimen A is submitted entirely inside a yellow biopsy cassette A1.  

    Tierra Holland 
    11/20/2017
     
    Microscopic Description


    Performed if applicable.


     
    Attestation
    Matthew R. Lindberg, MD 
    Electronically Signed on 11/22/2017, 1:09 PM 

    I have reviewed the pertinent gross findings, any and all microscopic slides and the Resident’s/ Fellow’s interpretations.  I have made appropriate editorial changes and have rendered the final diagnosis.
     
  • Tdoyle
    Tdoyle Member Posts: 36
    edited December 2017 #33
    Bone biopsy results
    Here are the results for the bone biopsy...to me it sounds like they are back and forth on the result.

    Case Report
    Clinical Information
    53 yo M with hx of prostate cancer, presents with 9th right rib lesion.
    FINAL DIAGNOSIS
    A. Bone, right 9th rib, biopsy:
    - Abundant woven bone formation and fibrous stroma, negative for carcinoma in this sample; see comment.
    Electronically signed by MD on 11/22/2017 at 1:10 PM
    Comment
    Immunohistochemical stains for pancytokeratin, PSA, and PSAP are performed with adequate controls and found to be negative, providing no support for metastatic carcinoma. However, there is abundant new bone formation suggestive of an osteoblastic process, and given the reported history of prostatic adenocarcinoma, an osteoblastic metastasis cannot be ruled out from this sample. If clinical concern for malignancy persists, additional sampling is recommended.
    Gross Description
    Specimen A is received in formalin, labeled with the patient's name, Troy D Doyle, medical record number, 003304000, and 3/2/1964. The specimen consists of three fragment of tan bone measuring 0.6 x 0.6 x 0.2 cm in aggregate. Specimen A is submitted entirely inside a yellow biopsy cassette A1.


    11/20/2017
    Microscopic Description
    Performed if applicable.
    Attestation

    Electronically Signed on 11/22/2017, 1:09 PM

    I have reviewed the pertinent gross findings, any and all microscopic slides and the Resident’s/ Fellow’s interpretations. I have made appropriate editorial changes and have rendered the final diagnosis.
  • VascodaGama
    VascodaGama Member Posts: 3,529 Member
    ... it sounds like ...

    Doyle,

    I understand your worries for the end comment by the pathologist, however, this is typical in physicians as they report just what they found not what they think. Their comments are carefully laid down with professionalism conclusions. The reason for him to write "... an osteoblastic metastasis cannot be ruled out from this sample ...", relates to the fact that the sample is from a patient that have been diagnosed with prostate cancer. Once diagnosed positive no one will ever rule a negative status in such a patient. Even after a successful treatment no doctor will ever refer the word "cured".

    In the above report it mentions clearly that they used the stains for adenocarcinoma of the prostate which provided a negative result ("... found to be negative."). Accordingly, this lesion relates to an active localized formation of bone which could be due to a variety of other occurrences not identified, and for such a reason he ends the report by saying that

    "... If clinical concern for malignancy persists, additional sampling is recommended". In my opinion I would add at the end of his sentence "... in the future if any ...".

    I would like to inform you that the Lupron is surely playing a trick on your feelings. One of the typical side effects is mood change. We gain the tendency for easily crying and worrying at any little thing. You are in chemical castration and the hypogonadism makes you to experience a series of unusual symptoms (some are very mild and unnoticed).

    I recommend you to take a family member with you when visiting the doctor and take notes of the conversation (taping is also valid). I also recommend you to prepare a list of questions in advance of any consultation including those questions that may seem awkward to you.

    I wonder about any other tests you have done. Check the whole lipids panel and include a test on heart health, the PSA and the testosterone to check on castration levels (action of Lupron). Hormonal treatment (Lupron) weakens the bone and that could be one of the causes behing your system to react with bone formation (the cause of the lesion ???).
    While waiting for the next appointment you could have a DEXA scan done at your local clinic to verify any osteopenia/osteoporosis.

    Best wishes,

    VGama

     

  • Tdoyle
    Tdoyle Member Posts: 36
    Test

    PSA was checked last probably 3 weeks ago and it was 2.12  and that is around 2 months into this 4 month Lupron shot, here are other blood test results.

    WBC 6.64 K/uL 3.60 - 9.50 K/uL
    RBC 4.62 M/uL 4.50 - 5.70 M/uL
    Hemoglobin 13.2 g/dL 13.0 - 17.0 g/dL
    Hematocrit 41.1 % 40.0 - 50.0 %
    MCV 89.0 fL 80.0 - 100.0 fL
    MCH 28.6 pg 26.0 - 33.0 pg
    MCHC 32.1 g/dL 32.0 - 36.0 g/dL
    RDW 12.2 % 12.0 - 15.0 %
    Platelet 195 K/µL 150 - 450 K/µL
    MPV 10.9 fL 9.0 - 13.0 fL
    ANC 3.6 K/uL 1.4 - 6.0 K/uL
    Nucleated RBC 0.0 #/100 WBC #/100 WBC
    Neutrophils, Auto 54.5 % 35.0 - 65.0 %
    Lymphs, Auto 34.6 % 23.0 - 50.0 %
    Monocytes, Auto 5.9 % 4.6 - 12.0 %
    Eosinophils, Auto 3.6 % 0.5 - 6.5 %
    Basophils, Auto 1.1 % 0.1 - 1.1 %
    Immature Grans, Auto 0.3 % 0.0 - 0.5 %
    Neutrophils, Absolute 3.62 K/uL 1.40 - 6.00 K/uL
    Lymphocytes, Absolute 2.30 K/uL 1.20 - 3.40 K/uL
    Monocytes, Absolute 0.39 K/uL 0.20 - 1.00 K/uL
    Eosinophils, Absolute 0.24 K/uL 0.00 - 0.50 K/uL
    Basophils, Absolute 0.07 K/uL 0.00 - 0.07 K/uL
    Immature Grans, Absolute 0.02 K/uL K/uL

     

  • Old Salt
    Old Salt Member Posts: 955 Member
    Looking Good

    Those tests all look 'normal', which is great.

    As Vasco pointed out, a lipid panel and a DXA scan (to assess bone health) could be useful for you at this stage.

  • VascodaGama
    VascodaGama Member Posts: 3,529 Member
    Looking Good

    Yes I agree with Old Salt. These markers indicate a healthy immune system. How about the Kidneys (Creatinine, Filtration rate estimated), the Liver (GOT, GPT and enzymes), Diabetes, Cholesterol and BP, and a very important Testosterone test?

    Urologists are specialists so that they do not request a full panel of tests because they focus on the problem, the cancer, which by norm and depending on the patient's status would involve the PSA, PAP, CEA, NSE and CGA. However, image studies required in clinical staging will involve contrast substances that would require some of boddy functions to be fit. Anemia is a worrisome condition for all tracers. Some medications also interact with PCa HT treatments justifying a comprehensive investigation on the overall health of the patient.

    In Europe this is the work of a GP (everybody has one) which is required by the national health services (NHS) system before one gets into a specialist (urologist). If you do not have one then you proper should take control and request what you want to each doctor when in consultation. You need to investigate/research, take the lead and discuss with the specialist attending your case. A medical oncologist would do the work for you if you feel it better.

    In any case, you doing it well. Wait for the next exam and get a clinical stage to help you in that final decision.

    Wishes for luck in your journey.

    VG

  • Tdoyle
    Tdoyle Member Posts: 36

    Looking Good

    Yes I agree with Old Salt. These markers indicate a healthy immune system. How about the Kidneys (Creatinine, Filtration rate estimated), the Liver (GOT, GPT and enzymes), Diabetes, Cholesterol and BP, and a very important Testosterone test?

    Urologists are specialists so that they do not request a full panel of tests because they focus on the problem, the cancer, which by norm and depending on the patient's status would involve the PSA, PAP, CEA, NSE and CGA. However, image studies required in clinical staging will involve contrast substances that would require some of boddy functions to be fit. Anemia is a worrisome condition for all tracers. Some medications also interact with PCa HT treatments justifying a comprehensive investigation on the overall health of the patient.

    In Europe this is the work of a GP (everybody has one) which is required by the national health services (NHS) system before one gets into a specialist (urologist). If you do not have one then you proper should take control and request what you want to each doctor when in consultation. You need to investigate/research, take the lead and discuss with the specialist attending your case. A medical oncologist would do the work for you if you feel it better.

    In any case, you doing it well. Wait for the next exam and get a clinical stage to help you in that final decision.

    Wishes for luck in your journey.

    VG

    Thanks

    Thank you guys, I have an appointment with my GP this next friday..He has wanted me to keep him updated on everything since he is the one that found my elavated PSA.. I will ask him about getting these other test. My Oncologist that scheduled the bone biopsy and that has the MRI scheduled in Feb. I will ask many more question as for where I stand in all this. Seems that no matter where I go and the doctors I have seen, no one wants to say anything as far as what needs done besides the Urologist that suggest RP.

    Tdoyle

  • Tdoyle
    Tdoyle Member Posts: 36
    your opinion....

    Just curious, Like I have mentioned above the MRI is scheduled in February which seems like forever to me...If the MRI comes out with the best possible resultss for me, I was wondering what yall think about what treatment if any would be a good move for me... from that point????

  • VascodaGama
    VascodaGama Member Posts: 3,529 Member
    Get the best data on your case before any decision

    You need more data on your status before choosing an option. The MRI makes part of the initial exams providing information necessary when judging the location of the cancer. That leads to a clinical stage from which the doctor will recommend a treatment that typically involves his trade. However, it is you that will choose and decide. Doctors do not take that responsibility. In fact, before any intervention, you will sign an agreement relieving the doctor and the hospital from any wrong outcome. You need to educate on the matter and be prepared in advance. This period of waiting can be used for reading a book on PCa so that you may be more comfortable at the time of a decision.

    Reaching a decision is not easy. You should do it not rushing. Here is a list of books from where to choose;

    www.csn.cancer.org/node/311252

    For the moment try to relax and enjoy the season with your kids. You will do it. Be positive.

    VG

     

     

  • Tdoyle
    Tdoyle Member Posts: 36
    T3 MRI ??

    How can I find a place close that has the T3 MRI... ?   Not sure if the one I am scheduled for in Februaury is this type...