Anyone ever returned to normal after EBR

Steve1961
Steve1961 Member Posts: 301

I am worried sick that I will never ever regain the strength I had before EBR ...I was a jogger and want to know if I will ever be able to jog again 

Comments

  • Old Salt
    Old Salt Member Posts: 899 Member
    Steve

    Yoiu should specify the kind of radiation you decided on; ideally with the number of Grays for each. 

  • Steve1961
    Steve1961 Member Posts: 301
    Old Salt said:

    Steve

    Yoiu should specify the kind of radiation you decided on; ideally with the number of Grays for each. 

    I did the combo treatment

    I did the combo treatment unfoftunetely...25 EBR  40 greys and 1 hdr brachytherapy  it has tore me up ...no sleep messed up bowels ..had bleeding for a week ..can’t pee up all night peeing every hour ...on flomax ..having regrets big time .i hsve a question ....I cant imagine hsving to self Cath ....I just can’t ...I wonder if insurance would pay for salvage prostatectomy if I had to ....my surgeon does it I know I’m jumping the gun here but If my bowels are going to be messed up here  and I have to pee every hour on the hour and get sleep and hardly pee during the day.  well at least the surgury I hope I would be able to pee for whatever life I have left ..really don’t care if u have to wear a diaper would be better than this seriously oh and ed who cares I don’t flowmac ruins you anyway 

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    Steve1961 said:

    I did the combo treatment

    I did the combo treatment unfoftunetely...25 EBR  40 greys and 1 hdr brachytherapy  it has tore me up ...no sleep messed up bowels ..had bleeding for a week ..can’t pee up all night peeing every hour ...on flomax ..having regrets big time .i hsve a question ....I cant imagine hsving to self Cath ....I just can’t ...I wonder if insurance would pay for salvage prostatectomy if I had to ....my surgeon does it I know I’m jumping the gun here but If my bowels are going to be messed up here  and I have to pee every hour on the hour and get sleep and hardly pee during the day.  well at least the surgury I hope I would be able to pee for whatever life I have left ..really don’t care if u have to wear a diaper would be better than this seriously oh and ed who cares I don’t flowmac ruins you anyway 

    Sorry

    Steve I do not remember all of your particulars but will say something very general about RT. Yes, usually, people regain strength, but his can take varying amounts of time. Very unlikely that you will ever get to pre-treatment levels, however.  Besides the treatments, the disease itself takes a toll.

     Chemo is similiar. After a few months of infusions, I was sleeping 17 hours per day. This persisted for many months, but today I work again and have more energy than a lot of guys 15v years younger than me.

    Your immediate issue is to get your urination problems fixed. I would be in the doctor's face regarding that.  I believe that there are probably surgical solutions less drastic than R.P.  Hopefully some of the guys will elaborate on this subject.

    max

  • Steve1961
    Steve1961 Member Posts: 301
    Come on really anymore

    Come on really anymore support I felt great before the damn radiation which I stupidly chose over surgery 

  • fishinguy
    fishinguy Member Posts: 18
    Steve1961 said:

    Come on really anymore

    Come on really anymore support I felt great before the damn radiation which I stupidly chose over surgery 

    The next chapter

    Hi Steve, I wish I had sound words of medical advice for you.   You asked a pretty broad question.  I can't comment much except to say I am certain yes men have returned to some resemblence of normal following EBR, and three weeks is not a lot of time.   Put all your energy into moving forward, try not to look back so much.

    What information are you receiving from your doctors on current urinary issues?

  • Old Salt
    Old Salt Member Posts: 899 Member
    Steve1961 said:

    Come on really anymore

    Come on really anymore support I felt great before the damn radiation which I stupidly chose over surgery 

    I had a 'combo' treatment as well

    but a different one (3 CyberKnife + 24 IMRT sessions). Although I had side effects, they weren't as bad as the ones you are currently experiencing. For one of them (bleeding rectal tissue), I had Argon Plasma Coagulation Therapy (about 18 months after the end of the radiation sessions), which helped. By now, almost five years later, no more issues, although that may change at some point. One never knows. 

  • SantaZia
    SantaZia Member Posts: 67
    Now is the time to exercise more

    Steve sorry to hear you are having to deal with all of that. I would start forcing yourself to get out and exercise. I started marathon running at 57 I am now 68. I have had degenerated disk disease which caused a neurogenic bladder and have cathed for 20 years. I even ran bent over because I could not stand up straight for a couple of years in my mid 40's.  I am on my second 3 month shot of Lupron and have noticed some decreased energy. When I go out for a run if I need to stop I will or walk for a while. I will turn off my watch so I still have to complete the distance. I use the app RunCoach to motivate me. Also the free app 7-minutes workout.  I have also started resistance training on my own a couple of days a week. It was recommended that I try a boot camp or some other class to mix it up. I have put on 5 lbs around my waist which pisses me off. There was one clinical study with a small sample that supports exercise https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3034389/  I start radiation next month and expect to have to work even harder.  Now is the time for intensity not sitting around. Of course, if exercise is not advised because of other issues therapy and diet might be your only choice. I thought this information was also useful https://www.nccn.org/patients/resources/life_with_cancer/exercise.aspx Good Luck! 

  • eonore
    eonore Member Posts: 118 Member
    edited August 2018 #9
    Steve1961 said:

    I did the combo treatment

    I did the combo treatment unfoftunetely...25 EBR  40 greys and 1 hdr brachytherapy  it has tore me up ...no sleep messed up bowels ..had bleeding for a week ..can’t pee up all night peeing every hour ...on flomax ..having regrets big time .i hsve a question ....I cant imagine hsving to self Cath ....I just can’t ...I wonder if insurance would pay for salvage prostatectomy if I had to ....my surgeon does it I know I’m jumping the gun here but If my bowels are going to be messed up here  and I have to pee every hour on the hour and get sleep and hardly pee during the day.  well at least the surgury I hope I would be able to pee for whatever life I have left ..really don’t care if u have to wear a diaper would be better than this seriously oh and ed who cares I don’t flowmac ruins you anyway 

    Self cathing

    Steve,

     

    I am so sorry you are going through this.  Inability to urinate is a very difficult problem to deal with, one that I am very familiar with.  One thing I can tell you, is that self cathing turns out to be easier and much less scary than you think it is.  Two years prior to my cancer diagnosis, I experienced total urinary retention twice, due to a massively enlarged prostate, each time resulting in the insertion of a foley catheter.  I panicked when they told me that I would have to learn how to self cath, at least temporarily.  The reality turned out to be much easier and less traumatic than I imagined.  I never enjoyed it per se, but at times it was a real relief to totally empty my bladder.

    If you wind up taking this route, make sure you do google searches for forums that discuss self cathing.  Most of the good info I got was online from other patients, not from my doctors office.  These hints and tips where very helpful.  Most of all, try not to worry too much.  The process is much less scary than your imagination is telling you.

    Good luck,

    Eric