PCa4, PSA 100, Gleason 1+1 ??????

Rakendra
Rakendra Member Posts: 197 Member
in Prostate Cancer #1

I am in the Philippines and wondering about Drs competence.  

I have extensive matastases involvement of the bones with evidence in arms, femurS,  spine, shoulders, hips and almost all ribs.  I am 81, have very strong bones, no pain, and lift weights regularly.

Uro A did the Biopsy three weeks ago.  Only one large specimen was taken and submitted for reading. Gleason was 1 + 1.  Uro was very upset about this reading and said Pathologist was incompetent, the result was impossible, and to get a second opinion.  However, investigation showed that this is the most respected pathologist here and does work in the best hospitals.  Uro A encouraged me to start ADT over castration.  I do not like ADT side effects.

Uro B did my castration two days ago.   I just had received the Biopsy report. He says he has never seen this kind of Gleason score in a patient with my advanced disease, but it is possible.  He totally trusts the pathologist, but says to get it checked.  Also, my prognosis changes for much the better.  He wants to start Zometa, but I refused Chemo.  I believe in doing nothing to weaken the immune system, and I do not like the Zometa efficacy or side effects.  And, being as I now have no pain, do not want to chance that the Zometa might do something to change this. Uro encouraged castration over chemical castration.  I agreed.

Uro C says I have probably had this cancer for many years.  I think probably true, as my PSA has been very high for at least 15 years.  I was 4 for a long while, went to 8 and I stopped testing.  About 8 months ago, it was 34, but I did nothing until it reached 100.  Uro C says that something else will get me before this cancer does, and I should live a long time. (Hooray!!!)

Before Biopsy, I had a bone scan.  Uro A and Uro B and my oncologist said to expect Gleasons of 8,9, or ten.  I think they all assumed this, especially Uro A.  Why would Uro A only take one sample???  I have never heard of this.  And when it tests 1+1, of course, there will be questions about other sites.  My prostate is large and hard and tumors are felt with the DRE.  Perhaps Uro A just figured that I would be a 8,9, or ten, so why should he bother wasting time and taking a lot of samples.

For the last 50 years, I have been a Vegan and my diet is very similar to the anti-cancer diet.  I am very healthy and strong for any age.  The body scan shows no involvement outside of the bone metastases.

    We all know that there is no black and white with this disease.  Different Drs. have different ideas and treatment methodology.  However, my case seems to be well outside the norm.  I would greatly apreciate any help as I have exhausted my sources here.  Love, Rakendra

 

 

 

Comments

  • Rakendra
    Rakendra Member Posts: 197 Member
    #2
    PCa4 PSA 100 Gleason 1+1????????

    Guys, I really need some help here and am hoping for some replies.  I hope that there is nothing in my posts that turn people off.  If so, I would greatly apreciate knowing.  I did receive two replies from another board.  Both said that they had never heard of a one specimen Biopsy, had questions about any possibility of a Gleason 2, and advised me to take Zometa.  Here was my reply:

    -----------------

    I greatly appreciate your replies.  First, here is what the net says about Gleason 1+1=2  Apparently it is extremely rare and the lowest value found is usually Gleason 3.

    I found the following on the net:

    Hence, the Gleason score can range from 2 (1+1) to 10 (5+5). The following are the basis of the assignment of the Gleason grade numbers at the primary and secondary site. From Prostate Cancer Central

    Gleason Grades 1 and 2: These two grades closely resemble normal prostate. They are the least important grades because they seldom occur in the general population and because they confer a prognostic benefit which is only slightly better than grade 3. Both of these grades are composed by mass; in grade 2 they are more loosely aggregated, and some glands wander (invade) into the surrounding muscle (stroma). From Prostate Cancer Info Link

    Also, different countries may have their own way to look at grading Gleason.  It would seem impossible that in my case, a Gleason 2 would be possible.  Also, as there are no other specimens to compare, it would seem my biopsy would have no clinical value. I am thinking that I must get a new biopsy. 

    I have checked the internet and have found no instance of a biopsy being done with one specimen.  The Philippines has almost no Medical Malpractice laws.  thank you.  

     

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #3
    Rakendra said:

    PCa4 PSA 100 Gleason 1+1????????

    Guys, I really need some help here and am hoping for some replies.  I hope that there is nothing in my posts that turn people off.  If so, I would greatly apreciate knowing.  I did receive two replies from another board.  Both said that they had never heard of a one specimen Biopsy, had questions about any possibility of a Gleason 2, and advised me to take Zometa.  Here was my reply:

    -----------------

    I greatly appreciate your replies.  First, here is what the net says about Gleason 1+1=2  Apparently it is extremely rare and the lowest value found is usually Gleason 3.

    I found the following on the net:

    Hence, the Gleason score can range from 2 (1+1) to 10 (5+5). The following are the basis of the assignment of the Gleason grade numbers at the primary and secondary site. From Prostate Cancer Central

    Gleason Grades 1 and 2: These two grades closely resemble normal prostate. They are the least important grades because they seldom occur in the general population and because they confer a prognostic benefit which is only slightly better than grade 3. Both of these grades are composed by mass; in grade 2 they are more loosely aggregated, and some glands wander (invade) into the surrounding muscle (stroma). From Prostate Cancer Info Link

    Also, different countries may have their own way to look at grading Gleason.  It would seem impossible that in my case, a Gleason 2 would be possible.  Also, as there are no other specimens to compare, it would seem my biopsy would have no clinical value. I am thinking that I must get a new biopsy. 

    I have checked the internet and have found no instance of a biopsy being done with one specimen.  The Philippines has almost no Medical Malpractice laws.  thank you.  

     

     I am unable to give the best

     I am unable to give the best and complete answers to your questions. Below are some thoughts.

    I am not familair with Gleason 1+1=2 results/

    You did not mention the involment of cancer, that is what percent of the core was cancerous.

    Is there any other information that is listed in the Pathology report?

    I do believe that you need to have a second opinion of the biopsy by an expert Pathologist, since determining a Gleason is subjective. I don't know who the best Pathologist will be in the Philipines. I tend to remember a recommendation at this site that was made a year or two ago. I think that the doctor was in Japan. Hopefully another poster will provide this information.

    Second, I wonder, what is the documentation that you have that the cancer has in fact spread.

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #4
    hopeful and optimistic said:

     I am unable to give the best

     I am unable to give the best and complete answers to your questions. Below are some thoughts.

    I am not familair with Gleason 1+1=2 results/

    You did not mention the involment of cancer, that is what percent of the core was cancerous.

    Is there any other information that is listed in the Pathology report?

    I do believe that you need to have a second opinion of the biopsy by an expert Pathologist, since determining a Gleason is subjective. I don't know who the best Pathologist will be in the Philipines. I tend to remember a recommendation at this site that was made a year or two ago. I think that the doctor was in Japan. Hopefully another poster will provide this information.

    Second, I wonder, what is the documentation that you have that the cancer has in fact spread.

    Look for proper diagnosis

    Rakendra

    I don’t get it. How much have you paid for the biopsy?  Yell

    In your other thread you commented that you were getting 12 sites for sampling. Why wasn’t it done?

    You said:

    “…I will get a biopsy on Friday and that will be $650, sedation included, for 12 sites…”
    http://csn.cancer.org/node/257099#comment-1354650

    In my opinion one needle cannot diagnose your status properly. The results have no meaning in the diagnosis. Biopsies are mapped in all the “zones” of the prostate gland (benign and cancerous tissues) according to international urological norms. These are followed by proper urologist.

    The metastases found in your bones could be a cause from lesions due to bone breakages or deterioration by cancer other than prostate cancer too. Your doctor can not use a judgement based on guessing. You should get a second opinion from specialists. You can do it at St. Lucks’ in Manila or visit the JH in Singapore. They have excellent doctors treating cancer and their consulting prices are reasonable for patients from the Philippines. Just call and say that you are a resident of the Philippines.

    http://www.imc.jhmi.edu/

     

    Hope for the best.

    VGama  Wink

  • Rakendra
    Rakendra Member Posts: 197 Member
    #5
    VascodaGama said:

    Look for proper diagnosis

    Rakendra

    I don’t get it. How much have you paid for the biopsy?  Yell

    In your other thread you commented that you were getting 12 sites for sampling. Why wasn’t it done?

    You said:

    “…I will get a biopsy on Friday and that will be $650, sedation included, for 12 sites…”
    http://csn.cancer.org/node/257099#comment-1354650

    In my opinion one needle cannot diagnose your status properly. The results have no meaning in the diagnosis. Biopsies are mapped in all the “zones” of the prostate gland (benign and cancerous tissues) according to international urological norms. These are followed by proper urologist.

    The metastases found in your bones could be a cause from lesions due to bone breakages or deterioration by cancer other than prostate cancer too. Your doctor can not use a judgement based on guessing. You should get a second opinion from specialists. You can do it at St. Lucks’ in Manila or visit the JH in Singapore. They have excellent doctors treating cancer and their consulting prices are reasonable for patients from the Philippines. Just call and say that you are a resident of the Philippines.

    http://www.imc.jhmi.edu/

     

    Hope for the best.

    VGama  Wink

    PCa4 PSA 100 Gleason 1+1????????

    First, I want to thank you pros and everyone for the very loving replies.  I have been stressing a lot from this experience.  Now, the problem is solved.  LITERALLY EVERYTHING IN THE PATHOLOGY REPORT IS WRONG!!   The doctor who signed the report did not do the biopsy.  Report says one specimen was received in one container.  There were twelve specimens submitted. The diagnosis of Gleason 1+1+2 is normally never given, and even a Gleason 3 does not matastasize.  It would be easy to assume that my Gleasons will be at the other end of the scale, 8,9, and 10.  I waited 15 days for 12 biopsys and recieved one, which was a farce.

        The problem?  One of the pathologists is an 85 YO senile man who has great seniority and it is difficult to push him out.  He is the one who did the biopsy.  It was these 85 YO eyes that judged Gleason 2!!!

       I very sincerely hope that this has not been a total waste of time.  What I have learned is that often what it seems to be, or what I think about this disease, turns out to be something quite different.  I have to be more cautious in my judgements.  My doctors are following all the prescribed treatments and have done everything correctly.

    Also, of those patients at my stage, only 28% will survive for five years or more.  But who will go and who will not go?  My bet is the first to go will be the aged with weak immune systems, the overweight, the smokers and drinkers, the sugar and meat eaters, the eaters of all the chemicals in the food today, those with heart disease, diabetes, high blood, and those who do not take all measures to fight this affliction.  Those who may survive will be those who have long taken care of their health, who have not trashed their immune system, and have healthy living habits.  Statistics are deceiving.  Everyone of us has the oportunity to extend our lives by studying and doing as many things as possible to combat the disease, there is simply no black and white as to what to expect in the future.

      Vasco, your posts have helped me enormously, as has hopefuls and others.  Thank you, your work is very much needed and apreciated.  I paid $500 for the biopsys including hospital and anaethesia, which was the Michael Jackson sleeping pill. My drs seem to know what they are doing, and I am embarassed by my doubting and misunderstanding.  Dr office visits here are $10, and it seems half of the time there is no charge.  My orchiedectomy was two days in hospital, total cost about $2000. All procedures have been with no pain, except for IV needles which collapsed my veins and had to be inserted several times.  The hospital room is new, very atractive and about $75 a day.  Nurses are gorgeous, do a good job, and must get paid about $300 a month, or less.  If I can possibly be of any service to anyone on this board, please ask.  love, Rakendra

Discussion Boards