Prostate cancer

laserlight
laserlight Member Posts: 165
in Prostate Cancer #1

Hello all I have been AWOL for the last couple of months. This time has alowed me to do research into PC. For the new members I really wish that you all did not have to be here. For us surviors Paitents family members the fight goes on. In my research I am finding support groups for prostate cancer that have been a help in my case. The social media groups are from what I have found to be a great resource. My cancer at the time of surgery was stage T2C gleason score of 7. Now I for the most part I am looking at reocuring cancer, just had PSA test and am waiting on results.

 

For those of you that are looking for information and support groups I would encourage Facebook, I found a lot of information on this site, Now for the VIETNAM VETS on this site there is also a lot of good people on this site. There are several Vet groups that have helped me. Prostate cancer is a monster and causes many problems for us. I am 2 years into this fight.

One of my daughters helped me join. When fighting cancer we need all information. This helps over the last 9 months I have been able to extract a lot of information and data.

 

For the person or family member that is just starting this journey facebook can be a real resource.

 

 I maintain a page and it has helped me. 

With all due respect   Kurt Knoblock, stop and visit

 

 

 

 

Comments

  • hunter49
    hunter49 Member Posts: 243 Member
    #2
    sorry to hear you are having

    sorry to hear you are having a re-occurence.  what is the PSA  and how much did it go up over how long? There area lot of support groups out there and I find the good support at my urologist with other patience.  good luck and let us know how it goes and keep fighting the beast.

  • caseyh
    caseyh Member Posts: 63
    #3
    Similar Numbers

    Kurt

    My numbers were very simialr to yours and I also had a recurrence at the 2 year mark.  I think that many doctors mislead patients with a gleason socore of 7 or higher into believing that the treatment they are offering will lead to a cure.  The fact is that for many of us it leads to the Management Phase of the disease, and for many of us the disease is very manageable.  I am now 11 years out form my recurrence date and doing very well.  I belive that with your numbers, you are likely to have a similar experience.  Good Luck and don't hesitate to contact me if I can provide any information for you.

  • laserlight
    laserlight Member Posts: 165
    #4
    caseyh said:

    Similar Numbers

    Kurt

    My numbers were very simialr to yours and I also had a recurrence at the 2 year mark.  I think that many doctors mislead patients with a gleason socore of 7 or higher into believing that the treatment they are offering will lead to a cure.  The fact is that for many of us it leads to the Management Phase of the disease, and for many of us the disease is very manageable.  I am now 11 years out form my recurrence date and doing very well.  I belive that with your numbers, you are likely to have a similar experience.  Good Luck and don't hesitate to contact me if I can provide any information for you.

    PSA

    Hunter and Caseyh, my numbers have doubled and are close to triple, I just had lab work done and have Dr appt. in April, I will know more then. I had a bone scan done that right now is clean. I also set mysellf up with the onocologist. He informed me that if these numbers keep moving then I will need follow up. The gleason score of 7 from what he explained in my case is an Intermediate agressive cancer.  The fact that the cancer was thru out the prostate, puts my doctors on edge.

     

    This oncologist, pointed me in the direction of the USTOO group, he is a member of the group, but does not have PC. The urologist did make the comment that if this cancer comes back it usually occurs at about the 2 year mark give or take, so I am there in that time frame.

    I hate psa numbers, the only good number is 0.

    My psa numbers have been slowly moving up since surgery. everytime I do lab work the number has increased and is starting to double. I always get lab work done at the same lab.

     

     

  • caseyh
    caseyh Member Posts: 63
    #5
    Doulbing Time

    Your PSA doubling time gives cause for concern, however you have time to carefully investigate and plan your next step.   At this point any metastasis that has taken place is in all liklihood local or limited to your lymph nodes and treatable.  Depending on the agressivenss of the cancer, it often stays in the lymph nodes for years before spreading to other parts of the body. I've  been to Sandlake Imaging and the Datolli Cancer Center in FL with good results.  That is a possibility worthy of your consideration.  You can contact Datolli through their website for a free telephone consultation.  For now. I would see what your oncoloogist has in mind treatment wise.  You have time to weigh all options before planning your next step.  Take charge of your disease.

    You can still beat this disease,
    caseyh

     

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