Need ideas on what options to research post-surgery

worriedabouthubby
worriedabouthubby Member Posts: 37
in Prostate Cancer #1
My husband's first post-op PSA was 3.8. From what I've read that seems VERY VERY VERY high after surgery.



His bone and ct scans will be repeated this Wednesday. But we can't get in to see the Uro until Dec. 7. He has already told hubby (over the phone) that he'll give him 'a hormone threapy shot' at that visit and we'll discuss other options then. I feel this is moving VERY slowly. I know- I'm impatient. I want to suggesst to hubby that he try to see a medical oncologist ASAP. He has only seen the URO so far.



His pre-surgry doubling rate was 2.14 months. But that was calculated with only 2 PSA readings, about 2 weeks apart (73.76 on 8-10 and 81 on 8-20) Even though the first scans were clear, I strongly suspect that he has micro-mets in his spine and possibly legs (due to pain there over the past few months). Though his Gleason was dropped from a 5+4+9 to a 4+5=9 in the path report, I know we are dealing with VERY aggressive beast.

Apart from radiation and HDT, does anyone know if Chemo or other options will even be a possiblity? I think I would be more comfortable with a more systemic approach than radiation. I just can't convince myself that it is confined to the prostate bed, or even to the pelvis.


I'd appreciate any suggesstions on what I should research. I like to approch things well armed with info.
--------------------------------------------------------------------------------
Husband's details- Age 57
8/27/12 PSA 81 8/30/12 Gleason 5+4=9 8/8 cores+ 9/5/12 bone scan & ct negative DaVinci surgery Oct. 9, 2012 Final stats- G 4+5=9 T3a N 0 M x tumor in both lobes, 3.3x3.2x2.6x tumor size , positive margins extensive perineural invasion, extracapsular extension, no lymph node involvement, no seminal vessical involvement
11/21/12 1st post-op PSA 3.8 12/7/12 HDT start

Comments

  • Swingshiftworker
    Swingshiftworker Member Posts: 1,017 Member
    #2
    MegaDose Vitamin C
    I just happened to watch the video "Food Matters" in which it is asserted (around the 1 hr mark) that megadoses of Vitamin C delivered intravenously has been successful in killing cancer without any side effect.

    This video is currently being offer online on the following site, but you can also get it in DVD format on Netflix:

    http://foodmatters.tv/screening-event-cinema

    This info was a bit startling to me and a quick Google search confirmed it. See:

    http://www.alternative-cancer-care.com/Intravenous_Vitamin_C_IV.html

    I would think that anyone w/advanced PCa or failed PCa treatment should look into this as an alternative to chemo and/or hormone therapy. Note in the 2nd link that Vitamin C taken after chemo may be less effective.

    According to the following article, Vitamin C with the addition of Vitamin B3 (niacin) may also be useful in the treatment of cancer:

    http://www.alternative-cancer-care.com/Vitamin_B3_Niacin.html

    As noted in the video, your doctor may not believe or agree this but, if you insist on the treatment you "should" be able to get it. However, your insurer may not pay for it and obviously getting daily intravenous doses of Vitamin C would be very inconvenient (unless you're already hospitalized). So, if you decide to try this, you'll probably have to buy the vitamins OTC and take them orally.

    Good luck!
  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #3
    Swingshiftworker said:

    MegaDose Vitamin C
    I just happened to watch the video "Food Matters" in which it is asserted (around the 1 hr mark) that megadoses of Vitamin C delivered intravenously has been successful in killing cancer without any side effect.

    This video is currently being offer online on the following site, but you can also get it in DVD format on Netflix:

    http://foodmatters.tv/screening-event-cinema

    This info was a bit startling to me and a quick Google search confirmed it. See:

    http://www.alternative-cancer-care.com/Intravenous_Vitamin_C_IV.html

    I would think that anyone w/advanced PCa or failed PCa treatment should look into this as an alternative to chemo and/or hormone therapy. Note in the 2nd link that Vitamin C taken after chemo may be less effective.

    According to the following article, Vitamin C with the addition of Vitamin B3 (niacin) may also be useful in the treatment of cancer:

    http://www.alternative-cancer-care.com/Vitamin_B3_Niacin.html

    As noted in the video, your doctor may not believe or agree this but, if you insist on the treatment you "should" be able to get it. However, your insurer may not pay for it and obviously getting daily intravenous doses of Vitamin C would be very inconvenient (unless you're already hospitalized). So, if you decide to try this, you'll probably have to buy the vitamins OTC and take them orally.

    Good luck!

    Medical Oncologist
    Worried

    The best person to answer your pleas is a medical oncologist. Hubby needs to understand about the limitations of his urologist. He should realize on the consequences of the results from surgery and move forward. You have been a good wife but worries will not take you anyway without a fixed “protocol” to handle his case.

    Hormonal therapy is a good start, even while waiting to a definite decision. He can move to another therapy latter.

    Reading your past entries shows that you cannot expect Hubby to follow your suggestions.
    You will need someone in the family to help you when discussing about his problem, or request his doctor to introduce him a medical oncologist specialist in PCa.
    http://csn.cancer.org/node/245957
    http://csn.cancer.org/node/246053

    Hope for the best.
    VG
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #4
    VascodaGama said:

    Medical Oncologist
    Worried

    The best person to answer your pleas is a medical oncologist. Hubby needs to understand about the limitations of his urologist. He should realize on the consequences of the results from surgery and move forward. You have been a good wife but worries will not take you anyway without a fixed “protocol” to handle his case.

    Hormonal therapy is a good start, even while waiting to a definite decision. He can move to another therapy latter.

    Reading your past entries shows that you cannot expect Hubby to follow your suggestions.
    You will need someone in the family to help you when discussing about his problem, or request his doctor to introduce him a medical oncologist specialist in PCa.
    http://csn.cancer.org/node/245957
    http://csn.cancer.org/node/246053

    Hope for the best.
    VG

    bem dito ... muito bons conselhos
    well said ...very good advice

    worried...time for you to use the information that you received from this site and the healingwell site, as well as other sources to make the best treatment decision with the best doctors you can afford, no matter where they are located is important in my opinion....a caution to you, fast rushed treatment may not be the best...proper dianostic tests is important..it is time to move on from the "doctor" you have been seeing.

    Good Luck
  • ralph.townsend1
    ralph.townsend1 Member Posts: 359 Member
    #5
    hopeful and optimistic said:

    bem dito ... muito bons conselhos
    well said ...very good advice

    worried...time for you to use the information that you received from this site and the healingwell site, as well as other sources to make the best treatment decision with the best doctors you can afford, no matter where they are located is important in my opinion....a caution to you, fast rushed treatment may not be the best...proper dianostic tests is important..it is time to move on from the "doctor" you have been seeing.

    Good Luck

    No Joke!
    You have a fight or I could tell you a lie! With a gleason's score that high could be in trouble.

    There is a chance that the number's are wrong and your husband eat right,live right,plus live strong + mind!!!

    God Bless!!!
  • tarhoosier
    tarhoosier Member Posts: 195 Member
    #6
    Next step
    Worried:
    It is of concern that the patient himself is not active in this discussion. He may actually be resisting the move to search for advice.
    Nonetheless, the uro who took him to surgery did him no favors. It is illogical that he will consider the best interests of the patient now. Move on. There are lots of doctors in the world.
    The best advice that I gave myself was to move the the very best oncologist I could find and afford as soon as my situation was stable. My post surgical numbers approach those of the man in question here. Anti hormone therapy will prevent any further metastasis at this time. I agree with the view of the author about radiation as unnecessary at this time. It is quite possible that, with the help of the best oncologist, in a few years time there will be other means to combat this disease. After six years of ADT I have recently had radiation to numerous sites known or suspected of harboring disease. Right after surgery this would have been premature. My psa has dropped to its lowest level in two years.
    I also recommend the patient and partner, if so inclined, attend a local Prostate Cancer support group. Or call the group leader and talk or meet with a group representative.
  • laserlight
    laserlight Member Posts: 165
    #7
    tarhoosier said:

    Next step
    Worried:
    It is of concern that the patient himself is not active in this discussion. He may actually be resisting the move to search for advice.
    Nonetheless, the uro who took him to surgery did him no favors. It is illogical that he will consider the best interests of the patient now. Move on. There are lots of doctors in the world.
    The best advice that I gave myself was to move the the very best oncologist I could find and afford as soon as my situation was stable. My post surgical numbers approach those of the man in question here. Anti hormone therapy will prevent any further metastasis at this time. I agree with the view of the author about radiation as unnecessary at this time. It is quite possible that, with the help of the best oncologist, in a few years time there will be other means to combat this disease. After six years of ADT I have recently had radiation to numerous sites known or suspected of harboring disease. Right after surgery this would have been premature. My psa has dropped to its lowest level in two years.
    I also recommend the patient and partner, if so inclined, attend a local Prostate Cancer support group. Or call the group leader and talk or meet with a group representative.

    next number of steps
    I agree with TAR and the others, Worried there is only so much that You as a care giver can do. If this cancer is to be fought and treated correctly, it will require Both of you.

    You have went far beyond in this, You Hubby has to also become active in treatment and researching all of the options.

    I would start to research Onc's right away.

    I have found that since I was diag'd with Prostate Cancer that I had to step up and start to take care of myself. Cancer is a wake up call.

    It is rough this is a life changing event, nothing is the same now.

    Every Man on this forum that has PC knows what a fight this is,

    It would be real good if you both can get into a support group, now it sounds like that there is depression here on your Hubby's part. This is part of surgery/cancer and needs to be taken care of.

    I have days where it will hit me big time, but I work thru it and try to stay focused on treatment.

    The best move right now is to find a GOOD Onc that treats Prostate cancer and get their input.

    Take care and hang in there. Kurt

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