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What side effects have you experienced?

Share with others who are trying to make a treatment decision! What treatment did you have and what side effects did you experience?

  1. I had SBRT and am winding up six months of ADT. SBRT was easy. For about two months afterward, I had frequent urination, burning urination if I drank acidic drinks (I just COULDN'T give up coffee), and some occasional tiredness.

    ADT, though, has been awful. I have one more month to go and have decided I will NEVER do it again even if it means a shorter life. Where to begin on the side effects: tachycardia, muscle and joint pain, nausea, loss of appetite and weight as a result (40 pounds in 4 months), ED, anorgasmia, insomnia, severe depression and suicidal thoughts, and memory problems (forgetting names of common objects and sometimes people I've known for years). It makes for a very poor quality of life but I only have exactly one month to go.



    1. I had a bad time with my radiation treatments due to diarrhea and tenesmus so bad that I had to reschedule my 44 radiation treatments to the afternoon because I spent the mornings on the toilet. I almost had to stop the radiation treatments. The Lupron treatments were even worse, and I had to stop after 4 months due to severe 24/7 sweats and headaches. All my joints and muscles were sore to the point I could barely get out of bed. The sweating is so bad that I cannot sleep with any covers, or I am soaked from head to toe. The sweating makes me cold, but I cannot cover up. It has been 5 months since my Lupron shot should have expired, and the side effects have diminished but are still there. I work out hard about 5 days a week and the sweating I do there is minor compared to the ADT sweats. At one and 4 months after the end of my treatments my PSA < 0.1 and testosterone < 9 which is good, but I fear that both will rise after the Lupron wears off if it ever does. I am 83 years old and had open heart surgery 18 years ago.

    2. Hi . It has been a little while and just want to check back in and see how things are going. Have you been able to regain any muscle mass and energy? Wishing you the best. Richard (Team Member)

  2. Incontinence for 18 months - trained by a pelvic floor PT lady to control most of it, then had a sling inserted surgically to maximize control.

    1. Hi . Looking for answers to the continued ED is certainly understandable. I don't know if you have already seen these, so want to share with you a couple of articles we have on penile implants: https://prostatecancer.net/living/ed-treatments-penile-implants and https://prostatecancer.net/clinical/penile-implants. Hope these can help in discussions with your doctor. Best, Richard (Team Member)

    2. I was still leaking 2 years post surgery so decided to have sling surgery. That has worked great. Normally, no need for pads. I thought this might also help with ED, but that was not the case. So, about a year later I had the Boston Scientific penile implant surgery. After recovering (pretty sore the first 3 weeks), this has been great. Feels and works like a normal election. Highly recommend if it is possible for you.

  3. I still need to wear a pad because of occasional leakage -- coughs and sneezes invariable push out some urine. Two pads every 24 hours is what I use, and in the beginning I needed 15 or so a day and usually needed to change underwear two or three times. Great progress.

    1. that is great progress! You must be happy with this. Thanks for sharing with us. Jill (Team Member)

  4. I had SBRT with the SpaceOAR barrier. The SpaceOAR had zero side effects, not even discomfort immediately following the placement. During SBRT I had some fatigue and mild urinary symptoms (urgency, weak stream). I used Flomax to help with those symptoms for about a week. About one week following the last radiation all side effects were gone. Two months out, my PSA has dropped from 15.47 pre-treatment to 1.00 now.
    My biopsy had one of 12 cores positive for PC, although it was graded on the aggressive side of a Gleason 4+3=7. The cancer was confined to the gland as far as all the testing and judgement of my doctors can determine.
    I know I’m one of the lucky ones. For those of you who catch it early, SBRT can be a great option.

    1. I had the same…. 45 treatments and 2 Eligard shots….. 1 week after treatments were done…. No side effects!! 4+3 also…. Cancer confined to the prostate!

    2. Try cranberry capsules. It's cheap , does not interfere with my meds and it works !
      One more thing . Don't cheap out on the cranberry supplement.

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