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Posted 8/26/2019 11:26 PM (GMT 0)
So glad you guys are here. So, after DiVinci had his way with me last November my PSA jumped from nothing to .03 to .09 and now .1 with another test tomorrow. I'm scheduled to start SRT next week, 40 days. The Dr. said he has a 70% success rate, I think that's typical right? I really don't listen too much, I just don't have much choice. Finally my question: What should I expect? Will I be able to work a few days a week? Should I keep my scheduled special date with my 16 year old grand daughter in October or am I going to be in the bag? Final question, I need to leave for 5 days after my first 10 days and tack them on to the end. Will that totally screw things up? My PO says no but I don't know what to believe any more. You guys are a breath of fresh air and are super helpful, I appreciate it. Let me know, thanks
Posted 8/26/2019 11:42 PM (GMT 0)
Was wondering why you didn’t opt for ADT before SRT. I would go aggressive now and have a better chance at success.
Posted 8/26/2019 11:51 PM (GMT 0)
I just don't think I could handle it, I'm told I can still do it later but from what I hear about it, I think it might work on my psa but the rest of me might not survive. Most likely un warranted fear, but its there
Posted 8/27/2019 12:29 AM (GMT 0)
Vistacal,
Success doesn't seem to be expressed so much as cure, but as five years free from biochemical recurrence. Still, a minimum of five years (probably much more) is a huge chunk of time to buy:

"For patients with prostate cancer who have persistent or rising prostate-specific antigen (PSA) levels after radical prostatectomy, the addition of short-term androgen-deprivation therapy and radiotherapy to the pelvic lymph nodes demonstrated increased rates of freedom from disease progression, according to data presented at the 2018 Annual Meeting of the American Society for Radiation Oncology (ASTRO).

Interim analysis of the phase III randomized SPPORT trial demonstrated significant improvements in freedom-from-progression rates at 5 years with the addition of 4 to 6 months of androgen-deprivation therapy to prostate bed salvage radiotherapy (82.7%) vs prostate bed radiotherapy alone (71.7%). Moreover, when radiotherapy of the pelvic lymph nodes was added to hormone therapy and prostate bed salvage radiotherapy, 89.1% of patients remained free of prostate cancer progression at 5 years. There was also a trend toward reduction in distant metastases in those treated with the combination."

I would seriously reconsider your decision not to add 4-6 months of ADT.

I was able work through the entirety of my RT without any major problems. If your doctor thinks the week long break is okay, it's probably okay. I think I personally would avoid doing that if at all possible

Good luck with your treatment.
Posted 8/27/2019 12:34 AM (GMT 0)
Yes, unwarranted fear. I’m not going to say it’s fun, (ADT) it’s not. It sucks. But a short course of 6 months, which is typical with SRT , is very manageable.

Back to your original question....we all speak from our own experiences...for me the SRT was a non event. No real fatigue, no urinary or rectal issues. I worked straight through. The hardest part was getting up at 5:30 every morning , filling my bladder, and emptying my rectum.

You should be able to maintain your normal activity level.
Posted 8/27/2019 12:55 AM (GMT 0)
For me it was, as Prato says, a non-event.
I didn't miss a day of work. Also, exercise helps fight fatigue.
A few forum members had a rough time of SRT, there's no guarantee yours will be smooth sailing. But there's no reason to go into it expecting a hell ride.
Posted 8/27/2019 1:13 AM (GMT 0)
My experience with SRT/ADT was exactly as described by Prato.
Posted 8/27/2019 1:43 AM (GMT 0)
Missing a few days of SRT in the middle won't affect the outcome. The radiation is delivered over a long time, it's the total dose accumulated. It doesn't wear off in between much. If they know about it up front, they can adjust your schedule.

I had a couple of days were the machine was having problems and I was given the option of waiting for the repair or just leave and they'd add another day at the end. I waited since I didn't want to have extra days.

Andrew
Posted 8/27/2019 1:55 AM (GMT 0)
Vistacal - I don’t think missing radiation treatments is generally a good idea. I asked about that when I did my ART and they said they will take the three day weekend at Memorial Day or a day off at my request but may schedule makeup treatments on Saturday after Thanksgiving to avoid a four day off period. I think if you search you will find some data that supports not missing many treatments for best results so I am surprised that they were agreeable to a whole week off.

I did not have any significant issues from 37 ART treatments either. If I was not retired, I could have gone to work after treatments but I may have had trouble doing full days given the timing of appointments. A lot depends on travel distances and time spent. Some get really early or late times and adjust the work day to fit. I was a little tired in the last week or two which lasted a week or two after treatments ended but I could have gone to work most days but may have crashed when I got home. Just hope your employer is flexible and can understand that some days may not work out so good (machines do go down and you have to come back later or you get recycled due to bladder or bowel fullness, meet with RO once a week after treatment kills some more time, or you just don’t feel up to it).
Posted 8/27/2019 2:14 AM (GMT 0)

Vistacal said...
I just don't think I could handle it, I'm told I can still do it later but from what I hear about it, I think it might work on my psa but the rest of me might not survive. Most likely un warranted fear, but its there

doing ADT later means you'll be taking it for the rest of your shortened life after treatment has failed. I would be going with the kitchen sink at this point -- which is your last shot at a cure.

a short course of ADT is not going to kill you. good luck in whatever you do decide!
Posted 8/27/2019 2:46 AM (GMT 0)
So do you do ADT at the same time as SRT or immediately after?
Posted 8/27/2019 2:53 AM (GMT 0)
Finished 5 of 40 SRT on Friday. Also on ADT. Libido is zero and some fatigue but nothing that has affected my regular activities. Work wise it’s mostly about logistics. I am working full schedule but sliding around things a bit during the day to accommodate scheduling and am fortunate to be able to telecommute a number of days. Might change going forward but so far that’s the story.
Posted 8/27/2019 2:57 AM (GMT 0)
If you elect to do ADT I think you would need delay the start of your RT slightly. Normally ADT is started for a period prior to RT, then all the way through RT, and then for a period following RT.
Posted 8/27/2019 2:58 AM (GMT 0)
Typically take ADT a couple months before starting the radiation but have seen different patterns. It takes testosterone down to low levels weakening the cancer cells that feed off it and making them more susceptible to radiation treatment.
Posted 8/27/2019 2:59 AM (GMT 0)
You guys are awesome, really appreciate your input!
Funny story:
So the guy is doing the setup for my SRT and tells me I have too much gas etc in my rectum. “ would you like an enema” ?
I was a little off guard and stressed out at the time so I turn around and say “F!/! No I don’t want an enema! I’ve spent 9 years with more stuff up my A!?? than ( fill in the blank ) on a 3 day weekend! No, who wants an enema????
Realizing he was a little unprepared for this response I spent the rest of our time together, after an enema, apologizing for being such a jerk. I think he was OK with it, it was one of those wrong time things 😜 at 69 years old you’d think I’d know better!
Posted 8/27/2019 3:02 AM (GMT 0)
I’ll be talking to my PO about ADT tomorrow, thanks guys
Posted 8/27/2019 2:35 PM (GMT 0)
Vistacal - As a side note, ADT usually would delay your SRT treatments a bit which may work better with your planned time off?

There are some different theories from studies about ADT with non-detectable PSA (<0.10 or 0.20) in the ART/Early SRT time period while there is little question with rising PSA above those limits. Since you are apparently over 0.10 (new results soon?) and over 6 months post-op, ADT may be prudent as suggested but your doctors can advise to the benefit at this time if you question them about it a lot. ADT typically stops the PSA progression so the timing of SRT is not as important once you start.

ps: My tech said my bladder was too full after the preliminary scan and handed me a cup to fill to the line and dump out 100cc+. Glad my rectum was clear enough. These items may come up again during treatments until you get your schedule straight over the many weeks, reasonably full bladder & empty colon (no gas either) needed to minimize radiation damage and they will recycle you if out of whack to properly position the radiation treatment field. Good luck.
Posted 8/27/2019 2:53 PM (GMT 0)
Vistacel....good luck today with your RO, I presume. With your G3+4, and him claiming a 70% success rate without ADT, I would both skip it, and not start radiation until after your 5 day trip. Sounds like it would only delay initiation of RT by two or three weeks at most. My two RO's both wanted an uninterrupted period of treatment.

Regarding ADT, it's a very sketchy decision for you. If your RO says you don't need it, I'd go with his advise. Mine, from Cleveland Clinic, say no to ADT, with the same G3+4, but I went with a six month course of Lupron anyway, due to some advise here and from aggressive Dr. D'Amico at Dana-Farber. I believe the current radiation studies are moving away from the 'throw the kitchen sink at it' philosophy. Chemical castration can be nasty, and most of the side effects come after SRT, and those studies are still wanting.

You should do fine at work, SRT schedule permitting, and you'll have a grand time on that special date with your grand daughter. Keep us posted.
Posted 8/27/2019 4:43 PM (GMT 0)
Vistacal,
As you can see from my signature below, I recently went through SRT with Lupron. For months before, I struggled with the idea of going on Lupron, given the potential for nasty side effects. My radiologist at MSK said I could skip the Lupron if I was that concerned, but It was because of this forum that I decided to go forward with it. What pushed me the most were the opinions of those on this forum that said it would increase my chances for a cure (or a durable remission) and the fact that I would kick myself later if the SRT wasn't successful. There are studies that show that Lupron does indeed help. Many men, like myself, experience few if any side effects from the Lupron. Others are not so fortunate, but from what I've read, they are bearable. In terms of how SRT affected me, I had few side effects. The worst of it was getting my bladder filled just enough but not too much, every day, for 39 days. I did experience some diarrhea for awhile, but that was it. I believe exercise helped. I wish you all the best with whatever path you choose.
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