45 Days After Surgery

Luckyfoot
Luckyfoot Member Posts: 6
edited June 2016 in Prostate Cancer #1

Sorry new to this so I posted this as a comment to Someone else's Post Initially.

I had open surgery at the CTCA in Georgia. Was given the option of HDR Therapy or Surgery. At 55, I elected to have the surgery becuase I had hoped with a PSA of 5 and Gleason of 8, the surgery would send me on my way. Not!!! The surgeon descibed my surgery as difficult and had to "go wide!" Which I eventually realized meant there was some spread to the Lymph nodes. The Urologist referred me to the onsite Oncologist who recommended Lupron every 3 months for 1 year. My PSA yesterday was 3 and had my first injection of Lupron. I FEEL GREAT TODAY, but am very afraid of what is to come in the way of side effects and outcomes. On top of everything else, the job I have been on for 3 years suddenly downsized and I was one of the casualties. I will have health insurance through the end of July, then I am on my own. After attempting to be optimistic since the surgery, yesterday was very difficult for me. It seemed the reality of my condition really hit home. Still incontinent and soaking pretty good day and night. Advised to do the Kegel exercises to help. Live in the Metro Atlanta area and think I could really use a GOOD support group. I've attended the men's group at CTCA here, but both times attendance was low. Once it was only me and the facilitator. I am open for any suggestions on support or anything else that can help get me through this since my personal support network is very small.

Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #2
    Thoughts

    Lucky,

    You have come to a place that will provide you with a lot of understnading friends and information.

    A PSA of 3.0 45 days after radical prostectomy means that the doctor did not get all of the disease; your PSA should have been either 0 , or close to 0.

    I would ask if radiation were not an option toward "curative effect"; that is, toward elimination of all of the disease.

    You will need some form of long-term health care insurance. I have no idea if you qualify for medicare/medicade.  But I would be investigating the options now.

    max

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #3
    USTOO is an international

    USTOO is an international organization that sponsors local support groups so go to their site to find a support group in your area. They also publish "hot sheet," that is worth reading at the site 

    You may ask your doctor for a prescription to a physical therapist. Many times men who do kegels need direction from a physical therapist in order for the to be done correctly 

  • Luckyfoot
    Luckyfoot Member Posts: 6
    #4
    Max Former Hodgkins Stage 3 said:

    Thoughts

    Lucky,

    You have come to a place that will provide you with a lot of understnading friends and information.

    A PSA of 3.0 45 days after radical prostectomy means that the doctor did not get all of the disease; your PSA should have been either 0 , or close to 0.

    I would ask if radiation were not an option toward "curative effect"; that is, toward elimination of all of the disease.

    You will need some form of long-term health care insurance. I have no idea if you qualify for medicare/medicade.  But I would be investigating the options now.

    max

    Thank you Max. He did mention

    Thank you Max. He did mention he wanted to wait to see if PSA went down after round of Lupron, but I will check to see if available sooner.

     

  • Luckyfoot
    Luckyfoot Member Posts: 6
    #5
    hopeful and optimistic said:

    USTOO is an international

    USTOO is an international organization that sponsors local support groups so go to their site to find a support group in your area. They also publish "hot sheet," that is worth reading at the site 

    You may ask your doctor for a prescription to a physical therapist. Many times men who do kegels need direction from a physical therapist in order for the to be done correctly 

    Thank you Hopeful. I will

    Thank you Hopeful. I will check on USTOO.

  • Rakendra
    Rakendra Member Posts: 197 Member
    #6
    Lupron

    When testosterone is taken from a man, there can be very difficult side effects.  I suggest you search for posts and do a lot of reading.  There are great guys here who have shared a lot of info.  You are in a good place here.  You will get lots of support.  Sorry about your present condition.  We all have been there, and many a lot worse who are now doing well.  There is a lot of info here.  

    Love Swami rakendra

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #7
    Be confident, you will manage well the side effects

    I am sorry for the situation. You haven't shared much about you clinical or pathological stage so that we cannot opinion on the treatment but I believe that Lupron will drive you to remission levels. Your next PSA will be very low. In any case, Lupron is just a palliative way to control the advance of the cancer. It doesn't cure you. I wonder why your doctor didn’t suggest a salvage therapy with cure intent (like radiation).

    The side effects from Lupron (chemical castration) may be nasty to some but they are mild to others. In my case I experienced sort of menaupose symptoms when on Leuprolide during 18 months. The worse was fatigue and loss of libido, my balls shrinked and become sort of spongy, but it all returned to normalcy once the drug lost its effectiveness. You can find details on the side effects googling the word: "side effects of Lupron".

    You can read about my experience with Leuprolide (Lupron Eligrad, etc) here;
    https://csn.cancer.org/node/290854

    Hormonal treatments may last many years so that you need to be financial prepared. You need to discuss the matter at your local council/authority. Be confident, you will manage well the side effects if prepared (know what to expect and how to counter).

    Best wishes.

    VG

     

     

  • Will Doran
    Will Doran Member Posts: 207 Member
    #8
    PSA, Lupron, Radiation

     Luckyfoot,

    Sorry to hear of your situation.  All of us, here, have been in the same place you are, and understand completely.  All of our cases are different, but we still have lots of common concerns.  I was Diagnosed with at PSA of 69.  I had no symptoms.  I turned out to have a Gleason of 7.  I had Robotic Assisted surgery in Dec 2013. Pathology showed 40% of prostate involved and one lymph node had a very tiny spot (it never showed up in any of my MRI;s), and NO Bone  Involvement. Then two years of Lupron, and 8 weeks, 5 days per week of radiation as "clean up", post surgery.   My PSA dropped to <0.010 in two months time post surgery, and is still at that level.  I have been off of the Lupron for 4 months and my PSA remains at "0".  However many of the side effects of the Lupron remain, but not as bad.  I've been told that the side effects will linger for up to a year and maybe longer. I ended up with an increase in bone density in all areas of my body, except from my Femurs, where the radiation hit.  I am now on Porlia for bone density.  At times I think the side effects of the Prolia have hit me harder than the Lupron did.  Both chemo's effected  my leg muscles, bones and joint with pain and weakness.  I also had incontinence problems.  Did PT for that and have also done PT for the leg muscle problems.  PT did and has helped those problems to a point.  But, I still have to be very guarded and I wear a pad, just in case.  I continue to do my home PT, weight lifting, up to 100 minutes on a Spinner Bike every day, plus work out at the gym two days per week.  My doctors encourage me to continue all that physical exercise.  So far that has really helped.  I had been a road cyclist and was out on the road for up to two or  three hours per day, pre surgery.

    So, please stay active, exercise and fight like the devil.  There is hope.  There will be many times that you have bad days and feel like you want to give up.  But, DO NOT DO THAT.  There were times I'd just sit and cry.  I think that helped.  Don't be afraid of crying.  This is a hard fight, but you can do it.  You will find that the support of your Wife / Family / Friends is very important.  You will also get support here.  Enjoy the simple things in life.  Trees, sunshine, wild life, drives in the country, wind , rain, thunder and lightning and even snow in the winter.

    Please know that you are in my daily prayers as are all who suffer this disease and fight this battle.  God have mercy on us all.

    Peace and God Bless

    Will

  • Luckyfoot
    Luckyfoot Member Posts: 6
    #9
    VascodaGama said:

    Be confident, you will manage well the side effects

    I am sorry for the situation. You haven't shared much about you clinical or pathological stage so that we cannot opinion on the treatment but I believe that Lupron will drive you to remission levels. Your next PSA will be very low. In any case, Lupron is just a palliative way to control the advance of the cancer. It doesn't cure you. I wonder why your doctor didn’t suggest a salvage therapy with cure intent (like radiation).

    The side effects from Lupron (chemical castration) may be nasty to some but they are mild to others. In my case I experienced sort of menaupose symptoms when on Leuprolide during 18 months. The worse was fatigue and loss of libido, my balls shrinked and become sort of spongy, but it all returned to normalcy once the drug lost its effectiveness. You can find details on the side effects googling the word: "side effects of Lupron".

    You can read about my experience with Leuprolide (Lupron Eligrad, etc) here;
    https://csn.cancer.org/node/290854

    Hormonal treatments may last many years so that you need to be financial prepared. You need to discuss the matter at your local council/authority. Be confident, you will manage well the side effects if prepared (know what to expect and how to counter).

    Best wishes.

    VG

     

     

    Thank you VG!
     

    Thank you VG!

     

  • Luckyfoot
    Luckyfoot Member Posts: 6
    #10
    Thank you Will... I really

    Thank you Will... I really needed that encouragement today. Side effects have been very minimal so far, but I am only 9 days in from the Lupron Injection. It worries me though that my Dr. did not recommend radiation with the Lupron. I will check with him soon on that?

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