Looking for tips on a few aspects of my PCa journey. Mostly tips on dealing with SE and Quality of Life so I can continue to function. Thanks in advance!
I placed the questions up front for those who might not require my background story. My story is at the bottom portion.Questions:
1. HT/ADT and dealing with SE
a. For those that underwent HT/ADT, what are tips to getting back pre-treatment functions? e.g. will ED just go away after treatment? While on HT, what are tips to enhancing chances of recovery of sexual function?
b. any tips or experience losing the mini moobs (there is some tenderness there - so maybe I am mentally imagining)? Would weights help? I do some moderate weights and will gladly do so if anyone has any relatable experience.
c. Is it safe to assume the night sweats and hot flashes will go away after the HT is finished (not sure yet if it is 12 or 18 months)?
d. Any other gotchas? I did experience at the very first injection (in May) a sleepless night due to GI (gas, bloating, diarrhea, etc.) reaction. A helpful nurse did show me that the original clinical trial had 13-16% GI reaction for the 22.5 mg LHRH I got. But the 2nd injection in August did not cause me such bad side effects.
2. Long term SE of IMRT
a. So given that I will have 25 hypo-fraction (not 45 or 50) plus the spacer, any other things I should know to minimize side effects?
b. I will ask the RO team when I get in for simulation, but I saw a 2014 study by Dr. Zelefsky https://www.auajournals.org/doi/pdf/10.1016/j.juro.2014.02.097
. It is basically adjuvant Viagra while on RT... any feedback on this?
c. How long did you guys need to remain on Flowmax? I started on this after HDR. But it seems during IG-IMRT I will still need it.??
d. One way of course to minimize nightly trips to bathroom is limit drinks at night. But I get parched due to the sweats from HT. Any ideas? I would typically just gulp down 8-16 oz when I wake up in the middle of the night (the sweats I put out only diminishes if I run about
5K in the evening or some significant workout)?
e. But is it advisable to run (talking about
12 to 16 miles per week) while on RT? Will exercising help or aggravate fatigue? What is the deal with fatigue versus exercise as mitigation? I rather not nap (risky behavior at job) but I also seeing advise less or no caffeine.
f. What is overall advise from those of you who had EBRT/IMRT/RT and runs as a form of exercise? How did you deal with urinary issues (urgency? dribbles?)
g. I was told Citrucel and Gas-X remains even after the simulation into IMRT treatment. My RN thought the fleet enema might be required every time. My RO said no. I think the enema is truly needed if it is SBRT. What do you guys who underwent EBRT/IMRT experience?
h. Any tips for a more sane simulation? I am hoping drinking a lot of water is not needed - because I still have lingering issues with urinary urgency from HDR BT (though lessened now versus the 3 days after actual HDR). If I have to remain still on the table for a long while with a full bladder and a cold room which encourages voiding, what tips do you have?My Story:
I am the only caregiver for my octogenarian mom. So aside from overloaded workload, I am busy taking care of mom's needs such as numerous medical appointments. She was hospitalized a few years back and since then even after rehab, I kinda neglected my annual check ups until this year, I finally did one again. PSA detected at 5.3 ng/mL. Off to the races we went.
URO detected something on DRE. So we did TRUS biopsy (not a favorite activity for me). First Pathology report was done via JH/Epstein crew. G=3+4 and G=4+4. T1C. MSKCC thought on review that my left side is G=3+3 rather 3+4, but the higher risk 4+4 on the right is confirmed. Which basically determines my overall risk level.
MSKCC RO gathered a team and in consultation with URO and came up with triple play approach (HT/ADT + HDR BT + EBRT/IMRT). HT definitely as I was at 50 cc. HT started in May to allow 3+ months before I get to HDR BT and
IG-IMRT. The HDR BT is just to boost with Iridium 192 and then put fiducials and SpacerOAR.
Originally the proposed plan considered either IMRT or SBRT (MSKCC Precise) but after HDR BT my RO decided we should go for 25 days IMRT. I am guessing it has to do about
one tumor abutting the walls of capsule and trying to hit surrounding area and still be conservative about
damage to nearby tissues (otherwise higher Gy with SBRT).
I really do not have a lot of time for myself not even with this situation. I actually sleep only 5+ hours on weekdays to meet chores at home plus job needs. So I did not have a lot of time spent on researching - although I did get 3 doctor's opinion. My URO, My RO + MSKCC team, and a 3rd one who is a very good radiologist to read my MRI
and pathology reports.
RP was ruled out early - mostly by me - because I cannot afford to be on post-op recovery of that length with no one to care for my mom and I do not want to lose my job too (FMLA is not a good choice for me, and my short term disability fine print did not bode well for me -- the reduced cash flow alone will just put a different kind of stress on me). Plus the nomograms I saw seems to indicate that data shows up to 25% post-RP may need salvage RT anyway.
2 weeks ago I had my HDR BT. Fiducials and spacerOAR is in place. A couple of great friends picked me up from hospital (otherwise, I was there alone and commuted by train in the morning of my procedure). The SE afterwards were horrible for the next 3 days then it became bearable the following week. Now, about
2 weeks after, I say it is just annoying (still some frequency or urgency to do no.1 but no.2 is better...the only remaining annoyance is when I run, about
1.5-2 miles into it, I still have to do a bio break).
I am now due for simulation and eventual scheduling for IG-IMRT for 25 days.
Trying to make sense of what each day brings....