Need Advise on how to proceed

GTG
GTG Member Posts: 1
in Prostate Cancer #1

Greeting All!

Never thought I would be posting in a group like this, but here I am.

OK, here's my story.

I am 52 years old and in great general health. Had PSA of 11.2 in 2009, BX showed PIN, but no Pca.

Did what a typical male would do...absolutely nothing until my physical in 2012. Had repeat PSA of 12.7.

Underwent biopsy #2 in November 2012 which showed Gleason 6 (3+3) with only 1 core + at 11%. Urologist (who is a well known robotic surgeon in the area) of course recommended surgery 

I immediately cleaned up my diet, became vegan & saw a Integrative Oncologist that started me on a number of suppliments.

PSA in Jan 2013 was 15.5
PSA March 2013 was 15.9

I have an appointment with the Urologist next week to discuss next steps.

I have not had any additional tests such as Ultrasound, MRI, or seen an Oncologist.

Given my low volume disease I am perplexed at the level of PSA and continued rising.

Given the wisdom of this group, what else should I be looking into before agreeing to have surgery? Should I have an Radiation Oncology opinion? Is it worthwhile to have an outside pathologist review the slides? Is it worthwhile to have another biopsy to see where we are now?

Thanks in advance for any help or suggestions you may have!!!!!

Matt

Comments

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #2
    Quality over Quantity

    Matt

    Welcome to the board. Your post shows that you got some basics on the problem and I think you are reasoning rightfully.

    The chronology of your PSA results indicates a slow growth of the cancer with very low doubling time (PSADT) of over 16 months, within the period since diagnosis of cancer till the start of taking supplements. The present PSADT (since 2012 Nov) indicates a slower growth of over 30 months but it should not be taken in the same perspective because of the possible influences caused by the supplements you are taking. Some are known to include hormonal type of “ingredients” such as estrogens, which will influence deeply the PSA marker.
    The jump from 12.7 to 15.5 could be a result of the supplement, though the continuing slow increase may be disregarded for the brief period of one month. You would require more tests at longer intervals of at least three months to have a better judgement.

    Here is the chronology:

    2009; 11.2 ng/ml (positive to PIN)
    2012 Nov; 12.7 (Gleason score 6 in one core)
    2013 Jan; 15.5 (start of supplements)
    2013 Feb; 15.9

    You did not share other info on the pathologist’s report regarding the biopsy which is important to diagnose your status.

    Can you tell how many cores were taken and what was found at cellular level?
    In which prostatic region did they find the cancer, Apex?
    What type does the report indicate?
    Is there any apparent hyperplasia?
    What about other tests, did you get a DRE or PAP or Free PSA?
    Did you experience any symptom?

    I wonder if you were ever recommended a protocol of anti inflammatory drugs to rule out BPH. The first PSA of 2009 was high and may have lead to get the first biopsy, which was negative to cancer. However the PIN presence should raise alarms about possible PCa. In fact, the biopsy only analysis a small portion of the prostate and its results can lead to erroneous judgements.
    Gleason scores of 6 (low risk cases), low volume of cancer and low PSA (<10) are the parameters for Active Surveillance. You could fall into this group wasn’t there the high PSA.

    Second opinions are always a must do thing when dealing with cancer. The speciality of the doctors we consult will influence their view so one must visit several to try getting an unbiased recommendation.

    My lay opinion is that you should not rush before getting proper diagnosis and knowing about the risks and side effects that a treatment involves. You do not need another biopsy but a confirmation of the cancer progression.

    Young patients in particular got lots to lose from radical approaches. I would recommend you to include the element of Quality of Life over quantity and that you look for experienced practitioners and facilities, even if you have to travel far. Your age of 52 requests prudency and detailed attention.

    Meanwhile read, talk with your family and do not get loosed.

    Here are links that may be of help to you;

    http://csn.cancer.org/node/201600

    http://csn.cancer.org/node/205208

    http://csn.cancer.org/node/210858

    http://csn.cancer.org/node/215505

    http://csn.cancer.org/node/234627

     

    Wishing that you find a conclusive answer to your case.

    VGama  Wink

  • BLUEpac6
    BLUEpac6 Member Posts: 43
    #3
    what to do

    Every ones case is different but in my case my psa was 110 and gleason score 9 and diagnosed agressive carcinoma and out of prostrate.I went to a robtic surgeon and he said he would not touch me.The uncolgist I went to said he would recomend putting in seeds then 35 radiatio treatnents .This was may 2009 and was sheduled for procedures aug. 2009 as you have to take a hormone shot and wait 90 days before radiation that hormohe shot was the most miserable time Ispent through the whole ordeal.I went to oklahoma cancer tretment center and they said same thing no surgery to dangerous but with cat scan bone scans mri all negetive except a hump extending out of prostrate.I was unsure as every body on this forum has been about what to do,but with the 90 days to do more research a friend was talking to his urologist about my case and the doctor called me and said if you have radiation and cancer returns there is not much else can be done to cure cancer.He said you need to get prostrate out of there and if comes back then you can have radiation.He put me in touch with Dr. Seth Lerner Baylor Clinic Houston and Aug.2009 did surgery.He checked the lymph nodes for cancer when he got in there and was negative or he would have sewed me back up.evrything was fine for about one and half years and my psa rose gradualy to .06 and he said I would need to have salvage radiaton.So june 2011 I began 35 treatments with no side effects at all.Icould not even tell I was having radiation.Well 6 mo. later my psa was les than.01 and Feb.2013 .0003. Thats my story but everybody has to make there own decisons.I think people praying for me did not hurt.Hope and pray yours go well.Even thugh it seems Iam doing fine there is not a day goes by I do not worry about it because no doctor will tell you you are cured.

  • BLUEpac6
    BLUEpac6 Member Posts: 43
    #4
    what to do

    Every ones case is different but in my case my psa was 110 and gleason score 9 and diagnosed agressive carcinoma and out of prostrate.I went to a robtic surgeon and he said he would not touch me.The uncolgist I went to said he would recomend putting in seeds then 35 radiatio treatnents .This was may 2009 and was sheduled for procedures aug. 2009 as you have to take a hormone shot and wait 90 days before radiation that hormohe shot was the most miserable time Ispent through the whole ordeal.I went to oklahoma cancer tretment center and they said same thing no surgery to dangerous but with cat scan bone scans mri all negetive except a hump extending out of prostrate.I was unsure as every body on this forum has been about what to do,but with the 90 days to do more research a friend was talking to his urologist about my case and the doctor called me and said if you have radiation and cancer returns there is not much else can be done to cure cancer.He said you need to get prostrate out of there and if comes back then you can have radiation.He put me in touch with Dr. Seth Lerner Baylor Clinic Houston and Aug.2009 did surgery.He checked the lymph nodes for cancer when he got in there and was negative or he would have sewed me back up.evrything was fine for about one and half years and my psa rose gradualy to .06 and he said I would need to have salvage radiaton.So june 2011 I began 35 treatments with no side effects at all.Icould not even tell I was having radiation.Well 6 mo. later my psa was les than.01 and Feb.2013 .0003. Thats my story but everybody has to make there own decisons.I think people praying for me did not hurt.Hope and pray yours go well.Even thugh it seems Iam doing fine there is not a day goes by I do not worry about it because no doctor will tell you you are cured.

  • BLUEpac6
    BLUEpac6 Member Posts: 43
    #5
    what to do

    Every ones case is different but in my case my psa was 110 and gleason score 9 and diagnosed agressive carcinoma and out of prostrate.I went to a robtic surgeon and he said he would not touch me.The uncolgist I went to said he would recomend putting in seeds then 35 radiatio treatnents .This was may 2009 and was sheduled for procedures aug. 2009 as you have to take a hormone shot and wait 90 days before radiation that hormohe shot was the most miserable time Ispent through the whole ordeal.I went to oklahoma cancer tretment center and they said same thing no surgery to dangerous but with cat scan bone scans mri all negetive except a hump extending out of prostrate.I was unsure as every body on this forum has been about what to do,but with the 90 days to do more research a friend was talking to his urologist about my case and the doctor called me and said if you have radiation and cancer returns there is not much else can be done to cure cancer.He said you need to get prostrate out of there and if comes back then you can have radiation.He put me in touch with Dr. Seth Lerner Baylor Clinic Houston and Aug.2009 did surgery.He checked the lymph nodes for cancer when he got in there and was negative or he would have sewed me back up.evrything was fine for about one and half years and my psa rose gradualy to .06 and he said I would need to have salvage radiaton.So june 2011 I began 35 treatments with no side effects at all.Icould not even tell I was having radiation.Well 6 mo. later my psa was les than.01 and Feb.2013 .0003. Thats my story but everybody has to make there own decisons.I think people praying for me did not hurt.Hope and pray yours go well.Even thugh it seems Iam doing fine there is not a day goes by I do not worry about it because no doctor will tell you you are cured.

  • BLUEpac6
    BLUEpac6 Member Posts: 43
    #6
    what to do

    Every ones case is different but in my case my psa was 110 and gleason score 9 and diagnosed agressive carcinoma and out of prostrate.I went to a robtic surgeon and he said he would not touch me.The uncolgist I went to said he would recomend putting in seeds then 35 radiatio treatnents .This was may 2009 and was sheduled for procedures aug. 2009 as you have to take a hormone shot and wait 90 days before radiation that hormohe shot was the most miserable time Ispent through the whole ordeal.I went to oklahoma cancer tretment center and they said same thing no surgery to dangerous but with cat scan bone scans mri all negetive except a hump extending out of prostrate.I was unsure as every body on this forum has been about what to do,but with the 90 days to do more research a friend was talking to his urologist about my case and the doctor called me and said if you have radiation and cancer returns there is not much else can be done to cure cancer.He said you need to get prostrate out of there and if comes back then you can have radiation.He put me in touch with Dr. Seth Lerner Baylor Clinic Houston and Aug.2009 did surgery.He checked the lymph nodes for cancer when he got in there and was negative or he would have sewed me back up.evrything was fine for about one and half years and my psa rose gradualy to .06 and he said I would need to have salvage radiaton.So june 2011 I began 35 treatments with no side effects at all.Icould not even tell I was having radiation.Well 6 mo. later my psa was les than.01 and Feb.2013 .0003. Thats my story but everybody has to make there own decisons.I think people praying for me did not hurt.Hope and pray yours go well.Even thugh it seems Iam doing fine there is not a day goes by I do not worry about it because no doctor will tell you you are cured.

  • butteguy
    butteguy Member Posts: 2
    #7
    Procedural Advice

    Dear Matt...Run do not walk and do not worry about collecting $200 passing GO!  Conult with a oncologist along with your urologist and go with what they recomend. I waited too long and now incurable. Early detection and treament is the answer.

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