Cancer returns

mssa58
mssa58 Member Posts: 21
in Prostate Cancer #1
I was diagnosed with prostate cancer in 09 and had surgery for it. My Gleason score was 9. They didn't get it all so in May of 10 I received radiation therapy along with hormone treatments. In Sept. of 10 I had an undetectable PSA which is what we all want. Now just 15 months later I have a PSA of .22. I have to wait until April for another PSA test and at that time they will make the determination that it is either cancer or something else. Anyone else have an experience like this? Doctor told us that if it is cancer they can only slow down the progression of the disease, a cure is not possible at this stage. What makes it worse is that I am a Vietnam vet who was exposed to Agent Orange, which according to the VA makes me 50% more likely to have a relapse and it will come back even more aggressive than the initial cancer. Would love to hear from other survivors about what their experience, and treatment,was after their cancer had returned. Thanks in advance for any advice you can give me.

Comments

  • Kongo
    Kongo Member Posts: 1,166 Member
    #2
    Bad Cards
    mssa,

    So sorry to hear of your bad news. As a 30-year veteran I am particularly saddened by the whole Agent Orange thing and the impact that is having on our generation. Although I was never in country, I spent quite a bit of time on "Yankee Station" off the coast. I do hope that given the state of your diagnosis that the VA has you at 100% disability.

    I had not heard that prostate cancer caused by Agent Orange is more aggressive than other forms of Prostate Cancer but it doesn't surprise me.

    Would you mind sharing how long you were on hormone therapy? If your cancer hasn't become testosterone resistant I assume you can do it again, right?

    I know chemo is always an option but that to me has always been the last of the last resorts and I don't know if I would do it. I read a survey several months ago that indicated 80% of oncologists would not recommend chemotherapy for a family member. Makes you wonder.

    Have you considered any diet changes that might help such as eliminating red meat and dairy?

    I am very interested in what your medical team thinks is best for next steps. Also, you might consider getting some second opinions. I know that some VA centers are great and some are really lousy. If you're comfortable there I can understand staying but it can't hurt to seek some second opinions and VA should pay for it.

    I don't understand why they are telling you that you need to wait until April for another PSA test and decide what to do. I can't think of anything but a growing prostate cancer as a result of Gleason 9 cancer that could be causing your PSA to increase.

    Best of luck to you and thank you for your service.

    K
  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #3
    Kongo said:

    Bad Cards
    mssa,

    So sorry to hear of your bad news. As a 30-year veteran I am particularly saddened by the whole Agent Orange thing and the impact that is having on our generation. Although I was never in country, I spent quite a bit of time on "Yankee Station" off the coast. I do hope that given the state of your diagnosis that the VA has you at 100% disability.

    I had not heard that prostate cancer caused by Agent Orange is more aggressive than other forms of Prostate Cancer but it doesn't surprise me.

    Would you mind sharing how long you were on hormone therapy? If your cancer hasn't become testosterone resistant I assume you can do it again, right?

    I know chemo is always an option but that to me has always been the last of the last resorts and I don't know if I would do it. I read a survey several months ago that indicated 80% of oncologists would not recommend chemotherapy for a family member. Makes you wonder.

    Have you considered any diet changes that might help such as eliminating red meat and dairy?

    I am very interested in what your medical team thinks is best for next steps. Also, you might consider getting some second opinions. I know that some VA centers are great and some are really lousy. If you're comfortable there I can understand staying but it can't hurt to seek some second opinions and VA should pay for it.

    I don't understand why they are telling you that you need to wait until April for another PSA test and decide what to do. I can't think of anything but a growing prostate cancer as a result of Gleason 9 cancer that could be causing your PSA to increase.

    Best of luck to you and thank you for your service.

    K

    A bump in your journey
    Terry (Mssa58)

    I am sorry for the news on the PSA. I hope that the number 0.22 is due to other causes (laboratory error, etc.) but most probably you got recurrence.
    Have you done any image study since 2009 (surgery)?
    Gleason score 9 is very aggressive and prone to metastasize. Usually it “travels” to the lymph nodes where it creates micro colonies before becoming systemic. Bone metastasis is the next place where usually the cancer hides. In such cases, hormonal or chemo or a combination of both are recommended as treatment.

    In your other thread you indicated that in April and May of 2010 you got injections of female hormones. Have you continued those shots after the radiation therapy?
    Can you tell what the drug’s name was? Was it DES ?
    (http://www.cancer.gov/cancertopics/factsheet/Risk/DES)

    As Kongo comments you may start again the hormonal treatment. HT is palliative (does not cure) but it can control the advancement of the cancer during long periods, some over ten years. Newer drugs are now available and some are still in trials but they have shown to be very effective in advanced cases.

    The side effects of HT may have caused the sensation of depression you commented in the other thread. However, a change in life style, diet and physical fitness is known to help in countering the effects. You just have to educate yourself in this type of treatment. Try to get a book on hormonal treatments and do some researches in the net.

    I would recommend you to gather all the data since surgery and consult an oncologist specialized in prostate cancer. You can also investigate about clinical trials in the National Cancer Institute site;
    http://www.cancer.gov/clinicaltrials/results/type/prostate
    http://www.cancer.gov/clinicaltrials

    Trials are safe and give a possibility of getting the latest drugs. Abiraterone (for HT) and Denosumab (for bone metastases) are example of drugs you can read in the above site. Discuss the matter with your doctor.

    Wishing you find an answer to your continuous case.
    Hope for the best and you will beat the beast again.

    VGama
  • mssa58
    mssa58 Member Posts: 21
    #4
    Kongo said:

    Bad Cards
    mssa,

    So sorry to hear of your bad news. As a 30-year veteran I am particularly saddened by the whole Agent Orange thing and the impact that is having on our generation. Although I was never in country, I spent quite a bit of time on "Yankee Station" off the coast. I do hope that given the state of your diagnosis that the VA has you at 100% disability.

    I had not heard that prostate cancer caused by Agent Orange is more aggressive than other forms of Prostate Cancer but it doesn't surprise me.

    Would you mind sharing how long you were on hormone therapy? If your cancer hasn't become testosterone resistant I assume you can do it again, right?

    I know chemo is always an option but that to me has always been the last of the last resorts and I don't know if I would do it. I read a survey several months ago that indicated 80% of oncologists would not recommend chemotherapy for a family member. Makes you wonder.

    Have you considered any diet changes that might help such as eliminating red meat and dairy?

    I am very interested in what your medical team thinks is best for next steps. Also, you might consider getting some second opinions. I know that some VA centers are great and some are really lousy. If you're comfortable there I can understand staying but it can't hurt to seek some second opinions and VA should pay for it.

    I don't understand why they are telling you that you need to wait until April for another PSA test and decide what to do. I can't think of anything but a growing prostate cancer as a result of Gleason 9 cancer that could be causing your PSA to increase.

    Best of luck to you and thank you for your service.

    K

    Cancer returns
    Thanks for your kind words Kongo. I got two hormone shots 3 months apart. I got the first one two months before I started radiation therapy and the 2nd one half way through radiation.
    The only side effect I had from the hormones were hot flashes. Those are not fun and now I can better understand what my wife went through when she had them. My wife is an RN and has researched prostate cancer and has reommended diet changes. I am now eating more fruit and vegetables and trying to avoid sugar. I drink diet soda when I drink it and when we cook or bake we try to use a sugar substitute.

    If you had any blue water time off the coast of Nam you should register with the Agent Orange program at the VA. They are now accepting claims for treatment and disablitiy from those with blue water exposure off the coast. I was on 100% disablitiy but since I was cancer free for 15 months they are lowering my award to 20% effective the first of next month. If in fact the results come back in April that the cancer has returned I will be back up at 100%.

    The VA doctor basically told us that if cancer has returned they can only slow it down with either more homone therapy or chemo, those are my only two options. If I do have cancer again I will definitely get a 2nd opinion somewhere other than the VA. I am on total disability with Social Security so I only have the VA and medicare for insurance so that will limit my choices somewhat but my experiences with the VA medical system have been less than encouraging. After a phone call to tell me that I had aggressive and fast growing prostate cancer they made me wait 4 months before they would operate on me. Prior to surger I was a Gleason 8 but was bumped up to a 9 when it was discovered it had spread to the bladder neck. My next PSA revealed that they had missed a bit of csncer and they made me wait another 5 months before starting radiation. They were suppose to do bone scans before and during radiation and they didn't. These are a few of the reasons I am not fond of the care our veterans receive at the VA.

    As far as making me wait until I have another PSA test in April, from the research I have done that seems to be an accepted practice. They claim that they may have missed a bit of prostate tissue and it has regenerated itself and that is what is causing my PSA to rise.

    The VA has just recently released the results of a study they have conducted on several hundred veterans with prostate cancer and the results show that those who have been exposed to Agent Orange are 50% more likely to have a reoccurence than those not exposed, and when it comes back it is more aggressive than the original cancer. Agent Orange is the gift that keeps on giving.

    Once again, thanks for your concern.

    TP
  • Cherokee6
    Cherokee6 Member Posts: 33
    #5
    VascodaGama said:

    A bump in your journey
    Terry (Mssa58)

    I am sorry for the news on the PSA. I hope that the number 0.22 is due to other causes (laboratory error, etc.) but most probably you got recurrence.
    Have you done any image study since 2009 (surgery)?
    Gleason score 9 is very aggressive and prone to metastasize. Usually it “travels” to the lymph nodes where it creates micro colonies before becoming systemic. Bone metastasis is the next place where usually the cancer hides. In such cases, hormonal or chemo or a combination of both are recommended as treatment.

    In your other thread you indicated that in April and May of 2010 you got injections of female hormones. Have you continued those shots after the radiation therapy?
    Can you tell what the drug’s name was? Was it DES ?
    (http://www.cancer.gov/cancertopics/factsheet/Risk/DES)

    As Kongo comments you may start again the hormonal treatment. HT is palliative (does not cure) but it can control the advancement of the cancer during long periods, some over ten years. Newer drugs are now available and some are still in trials but they have shown to be very effective in advanced cases.

    The side effects of HT may have caused the sensation of depression you commented in the other thread. However, a change in life style, diet and physical fitness is known to help in countering the effects. You just have to educate yourself in this type of treatment. Try to get a book on hormonal treatments and do some researches in the net.

    I would recommend you to gather all the data since surgery and consult an oncologist specialized in prostate cancer. You can also investigate about clinical trials in the National Cancer Institute site;
    http://www.cancer.gov/clinicaltrials/results/type/prostate
    http://www.cancer.gov/clinicaltrials

    Trials are safe and give a possibility of getting the latest drugs. Abiraterone (for HT) and Denosumab (for bone metastases) are example of drugs you can read in the above site. Discuss the matter with your doctor.

    Wishing you find an answer to your continuous case.
    Hope for the best and you will beat the beast again.

    VGama

    Agent Orange Connection
    mssa58,

    I too have the Agent Orange connection with a Gleason 9 score and have been told that the Agent Orange PC tends to be more aggressive than others. I had an RT in Dec of 09 and two years out I am still enjoying a <.1 PSA reading but have been on HT since just prior to my radiation treatment. I have also been on a daily hormone pill for the past 9 months. I do suffer depression from time to time, more frequently lately, together with hot flashes, ED and incontinence but I'm afraid to get off of the HT as long as it keeps the PSA low. Was told to stay on HT for at least 3 years. I haven't heard of anyone else that has been told to remain on it for that long. Most seem to get placed on intermittent HT after a year or so. I wish I knew if it made a difference.

    Don't give up. I have a friend that also has the Agent Orange connection and his PSA was over 400. Yes, that's 4-0-0. He recently went through two Chemo treatments which lowered his PSA down to 165 and then was placed on an experimental drug which lowered his PSA to 4. As you can imagine this was great news for him.

    Please tell me that you are receiving VA benefits and if not don't waste any time and get down to a National Service Officer and sign up. Once you have had a recurrence you should get a rating of 100% total and permanent.

    I so enjoy VascodaGama's and Kongo's responses, as they have so much information to share and we can always count on an informative and quick response from the both of them.

    Stay positive and keep in contact.
  • mssa58
    mssa58 Member Posts: 21
    #6
    VascodaGama said:

    A bump in your journey
    Terry (Mssa58)

    I am sorry for the news on the PSA. I hope that the number 0.22 is due to other causes (laboratory error, etc.) but most probably you got recurrence.
    Have you done any image study since 2009 (surgery)?
    Gleason score 9 is very aggressive and prone to metastasize. Usually it “travels” to the lymph nodes where it creates micro colonies before becoming systemic. Bone metastasis is the next place where usually the cancer hides. In such cases, hormonal or chemo or a combination of both are recommended as treatment.

    In your other thread you indicated that in April and May of 2010 you got injections of female hormones. Have you continued those shots after the radiation therapy?
    Can you tell what the drug’s name was? Was it DES ?
    (http://www.cancer.gov/cancertopics/factsheet/Risk/DES)

    As Kongo comments you may start again the hormonal treatment. HT is palliative (does not cure) but it can control the advancement of the cancer during long periods, some over ten years. Newer drugs are now available and some are still in trials but they have shown to be very effective in advanced cases.

    The side effects of HT may have caused the sensation of depression you commented in the other thread. However, a change in life style, diet and physical fitness is known to help in countering the effects. You just have to educate yourself in this type of treatment. Try to get a book on hormonal treatments and do some researches in the net.

    I would recommend you to gather all the data since surgery and consult an oncologist specialized in prostate cancer. You can also investigate about clinical trials in the National Cancer Institute site;
    http://www.cancer.gov/clinicaltrials/results/type/prostate
    http://www.cancer.gov/clinicaltrials

    Trials are safe and give a possibility of getting the latest drugs. Abiraterone (for HT) and Denosumab (for bone metastases) are example of drugs you can read in the above site. Discuss the matter with your doctor.

    Wishing you find an answer to your continuous case.
    Hope for the best and you will beat the beast again.

    VGama

    Cancer returning
    Thanks for your concern and all the info you provided me with. It is all appreciated. They did do a CT scan prior to my radiation therapy and then before each treatment they would do a mini scan.

    I only had two hormone treatments and I dont remember what the drug was. All I know about it is that they use a huge needle. They give you a shot first to deaden it and then nail you with the big needle.

    My wife and I are researching a bunch of websites. We both like to be informed before meeting with the doctor. If the test comes back positive I will be seeking a 2nd opinion.

    Thanks again.
    \
    TP
  • mssa58
    mssa58 Member Posts: 21
    #7
    Cherokee6 said:

    Agent Orange Connection
    mssa58,

    I too have the Agent Orange connection with a Gleason 9 score and have been told that the Agent Orange PC tends to be more aggressive than others. I had an RT in Dec of 09 and two years out I am still enjoying a <.1 PSA reading but have been on HT since just prior to my radiation treatment. I have also been on a daily hormone pill for the past 9 months. I do suffer depression from time to time, more frequently lately, together with hot flashes, ED and incontinence but I'm afraid to get off of the HT as long as it keeps the PSA low. Was told to stay on HT for at least 3 years. I haven't heard of anyone else that has been told to remain on it for that long. Most seem to get placed on intermittent HT after a year or so. I wish I knew if it made a difference.

    Don't give up. I have a friend that also has the Agent Orange connection and his PSA was over 400. Yes, that's 4-0-0. He recently went through two Chemo treatments which lowered his PSA down to 165 and then was placed on an experimental drug which lowered his PSA to 4. As you can imagine this was great news for him.

    Please tell me that you are receiving VA benefits and if not don't waste any time and get down to a National Service Officer and sign up. Once you have had a recurrence you should get a rating of 100% total and permanent.

    I so enjoy VascodaGama's and Kongo's responses, as they have so much information to share and we can always count on an informative and quick response from the both of them.

    Stay positive and keep in contact.</p>

    Cancer returning
    I am very happy to hear that your PSA test still remain good. I know that is always a concern. I only had the two hormone shots, they last 3 months each, and since then I have had no treatment. I also suffer from major depressive disorder as well as PTSD along with complete ED and wear pads for incontinence. I go to weekly group therapy and have an individual session with a counselor once a month.

    I am currently receiving VA benefits. They just lowered my cancer award down to 20% since I had been cancer free for 15 months but now it seems it has returned. I will have to wait until April to find out for sure.

    One thing I have going for me is my support system. My family is behind me 100%. Also I have a wife that is an RN with a lot of experience in geriatrics. The entire family have, at one time or another, done research on prostate cancer and treatments.

    Eventually I will get to the point that I am not so upset by all this but right now it is all fresh in my mind. I finally gotten to the point that it didn't bother me every day and I know it will get back to that poing.


    The nice thing about this site is all the support and info you get from others who know exactly what you are going through.

    Thanks again for your concern and info.

    TP

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