LAUNCH OF MILITARY CANCER SURVIVORS' DISCUSSION

spongebob
spongebob Member Posts: 2,565 Member
edited March 2014 in Prostate Cancer #1
After a little cajolling, I have convinced the CSN that there is a need for a discussion for military cancer survivors. The purpose of this discussion is to give military folks a safe place to go and ask questions about treatment, administrative issues, performance evaluations, etc. that are unique to military cancer survivors. If you or someone you care about are military cancer survivors, stop on over and say "Attention!". I have recruited Kat - a military attorney with 11 years of trial experience and Mike, an oncology nurse (NOT a doctor) to help out with technical stuff. As you may have gathered, I am an old dinosaur myself (23 years E-1 to O-4) with lots of experience at "working the system". We're here to listen, advise, let you vent or kick you in the butt if necessary.

Hoping to hear from you soon - active duty or retirees.

- LCDR SpongeBob

Comments

  • nutt
    nutt Member Posts: 140
    #2
    Bob, great you have taken the time to push this through however, believe most folks would perfer to contact you privately instead due to the many obstacles and length of discussion that would be required to "fight the system". Could / would you provide an email (separate of CSN webpage) to be contacted?
    Thanks,
    Joe
  • therog
    therog Member Posts: 8
    #3
    Hello SpongeBob;

    Well done on the group thing. I agree with the fact that a group like this is necessary. I am new at this so how do we navigate to the discussion group or is this it. I have some VA questions that will soon follow.

    My cancer is service connected to Agent Orange. I had a nerve sparring RP performed Jan 2003. I currently have some lingering side effects. Stress - incontinence and no erections. Viagra helps some and I'm optimistic. I understand that this is normal and can take up to 18 months to return to normal.

    My question is in regards to pas after surgery. My psa was 1.6 and remains steady. Why was it not at 0.0 like most of the other's I see here? Does that mean I may have some cancer cells that spread beyond?

    Thanks therog
  • Sailor1988
    Sailor1988 Member Posts: 23
    #4
    therog said:

    Hello SpongeBob;

    Well done on the group thing. I agree with the fact that a group like this is necessary. I am new at this so how do we navigate to the discussion group or is this it. I have some VA questions that will soon follow.

    My cancer is service connected to Agent Orange. I had a nerve sparring RP performed Jan 2003. I currently have some lingering side effects. Stress - incontinence and no erections. Viagra helps some and I'm optimistic. I understand that this is normal and can take up to 18 months to return to normal.

    My question is in regards to pas after surgery. My psa was 1.6 and remains steady. Why was it not at 0.0 like most of the other's I see here? Does that mean I may have some cancer cells that spread beyond?

    Thanks therog

    Hi Therog; Welcome aboard! Let me try to answer your navigation question. To get to the Military Cancer discussion group, scroll down to the bottom of this page; click on the box to "Jump to another Discussion Group" and when you find the Miltiary Cancer Survivor group, click "Go". You can swithch between any of the groups in this manner.

    Sorry I can't answer your question about your PSA, though it would seem good that it has remained constant. What does your doctor say? What were the results of the postop biopsy? Was there any indication that it had spread beyond the gland?

    BTW, my RP was in Nov., 2003 with about the same problem areas as you. We remain optimistic that things will get better in the next year or two, but if not, will cross those bridges then.

    My case is linked to Agent Orange like yours. Have you been thru the VA process and been assigned a disability percentage?

    Hope to see you at the other group.

    Sailor
  • williams
    williams Member Posts: 2
    #5
    "ATTENTION" I am a RETIRED of 20year draft in 1962 yes I was draft, I like the military I stay in for 20year In 1967-1968 I was in Vietnam yes I am a agent orange cancer survivors I was diagnosed with cancer in 2001 PSA of 13.9 underwent prostatectomy removeing the postate and some other thing that was damage. I went though 2year of treatment in Oncology. To make along story short, I was award 100% from VA NOW what did know was after 2years of treatment my PSA is down to 0.1 the VA have cut my disability from 100% to 60% not enough to pay my bills I am 64years old and what cancer left I cant do what I did before. I listen to story,s about homeless and how thay got there now I am one of them. Well I want to do some VENTING now, (1) I went and did what my country ask me to do. (2) I pay my tax every year on time. (3) I spent 20years in the military with the promise that everything will be taken care of. WELL I AM HERE TO SAY THAT A BIG LIE. The VA think that you get better from postate cancer, Well I am here to tell them that not so, you dont get better you learn to live with what cancer leave behind. Now thay drop me to 60% now I have something else to go with my cancer call stressed-out. Well I VENTED and I still anger, Can anybody help me or tell me where to get help.
  • Unknown
    Unknown
    #6
    williams said:

    "ATTENTION" I am a RETIRED of 20year draft in 1962 yes I was draft, I like the military I stay in for 20year In 1967-1968 I was in Vietnam yes I am a agent orange cancer survivors I was diagnosed with cancer in 2001 PSA of 13.9 underwent prostatectomy removeing the postate and some other thing that was damage. I went though 2year of treatment in Oncology. To make along story short, I was award 100% from VA NOW what did know was after 2years of treatment my PSA is down to 0.1 the VA have cut my disability from 100% to 60% not enough to pay my bills I am 64years old and what cancer left I cant do what I did before. I listen to story,s about homeless and how thay got there now I am one of them. Well I want to do some VENTING now, (1) I went and did what my country ask me to do. (2) I pay my tax every year on time. (3) I spent 20years in the military with the promise that everything will be taken care of. WELL I AM HERE TO SAY THAT A BIG LIE. The VA think that you get better from postate cancer, Well I am here to tell them that not so, you dont get better you learn to live with what cancer leave behind. Now thay drop me to 60% now I have something else to go with my cancer call stressed-out. Well I VENTED and I still anger, Can anybody help me or tell me where to get help.

    This comment has been removed by the Moderator
  • spongebob
    spongebob Member Posts: 2,565 Member
    #7
    williams said:

    "ATTENTION" I am a RETIRED of 20year draft in 1962 yes I was draft, I like the military I stay in for 20year In 1967-1968 I was in Vietnam yes I am a agent orange cancer survivors I was diagnosed with cancer in 2001 PSA of 13.9 underwent prostatectomy removeing the postate and some other thing that was damage. I went though 2year of treatment in Oncology. To make along story short, I was award 100% from VA NOW what did know was after 2years of treatment my PSA is down to 0.1 the VA have cut my disability from 100% to 60% not enough to pay my bills I am 64years old and what cancer left I cant do what I did before. I listen to story,s about homeless and how thay got there now I am one of them. Well I want to do some VENTING now, (1) I went and did what my country ask me to do. (2) I pay my tax every year on time. (3) I spent 20years in the military with the promise that everything will be taken care of. WELL I AM HERE TO SAY THAT A BIG LIE. The VA think that you get better from postate cancer, Well I am here to tell them that not so, you dont get better you learn to live with what cancer leave behind. Now thay drop me to 60% now I have something else to go with my cancer call stressed-out. Well I VENTED and I still anger, Can anybody help me or tell me where to get help.

    Ahoy, williams -

    Venting is a good thing and this is a good place to do it. It's easy to be anonymous here and still get stuff out. I agree that it seems the VA gave you the short shrift - have you been to talk to a VA counselor in person? What about Medicare or other VA medical benefits - have you looked into that? I will be happy to try and help you with some specific questions if I can. Since I'm not yet retired, I haven't navigated your waters, but maybe we can do it together! Do me a favor, can you post your response at the "Military Cancer Survivors" discussion site? I check that one regularly - or you can e-mail me through CSN "SpongeBob" or at LTRHendrickson@hotmail.com.

    Take care!

    - SpongeBob
  • spongebob
    spongebob Member Posts: 2,565 Member
    #8
    nutt said:

    Bob, great you have taken the time to push this through however, believe most folks would perfer to contact you privately instead due to the many obstacles and length of discussion that would be required to "fight the system". Could / would you provide an email (separate of CSN webpage) to be contacted?
    Thanks,
    Joe

    Ahoy, nutt -

    Sorry it tooke me months to get back to you, but I checked the site regularly and didn't seem to have much response... guess I wasn't looking in the right spots - hopefully you haven't bailed on me!

    I understand your concerns. You can get me at LTRHendrickson@hotmail.com or here at the CSN as "SpongeBob".

    Be well!
  • spongebob
    spongebob Member Posts: 2,565 Member
    #9
    therog said:

    Hello SpongeBob;

    Well done on the group thing. I agree with the fact that a group like this is necessary. I am new at this so how do we navigate to the discussion group or is this it. I have some VA questions that will soon follow.

    My cancer is service connected to Agent Orange. I had a nerve sparring RP performed Jan 2003. I currently have some lingering side effects. Stress - incontinence and no erections. Viagra helps some and I'm optimistic. I understand that this is normal and can take up to 18 months to return to normal.

    My question is in regards to pas after surgery. My psa was 1.6 and remains steady. Why was it not at 0.0 like most of the other's I see here? Does that mean I may have some cancer cells that spread beyond?

    Thanks therog

    Ahoy, therog -

    I'm no doc, but I do know that some tests are not as consistently accurate as others. I look at the CEA test they do for other types of cancer - I for one never flagged a high CEA number even though I had cancer. I know that there are other, more accurate tests for the presence of prostate cancer that your doc can try. I would talk to him about it. Having a PSA that's elevated such as yours is doesn't necessarily mean there are still cancer cells in the area - but your doc can help you figure out what is causing it and how to deal with it.

    SpongeBob
  • alderman1citlink
    alderman1citlink Member Posts: 1
    #10
    Vietnam Vets with Colon Cancer
    I am interested in talking with other Vietnam Vets who currently have Colon Cancer or are Colon Cancer Survivors. I have filed a claim with V.A. for my colon cancer as I believe it is an Agent Orange related cancer (having no cancer in my family and being very healthy otherwise...never smoked, never overweight, etc). VA is not recognizing colon cancer as agent orange related. (Although they have recognized many other cancers, including Prostate cancer).

    I'm trying to locate others with Agent Orange related colon cancer to provide statistics to V.A. so that, eventually, they will recognize colon cancer as an Agent Orange related cancer and award compensation to deserving vets with this disease.

    Thanks for any input/advice in this regard.

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