My 2nd post and still full of questions, would like to hear from everyone.
Regarding my specific case: I was told I have to do 6 months of ADT and appx 28-30 rounds of EBRT. Of course, I still don't have my PSMA/PET scan results back yet, but I'm assuming the best case scenario. Still trying to make those travel plans!
What I do know:
- Get the nipples zapped before/while first starting ADT
- Start the ADT injection 1x monthly
- At end of ADT month 2, start daily treatments of EBRT
- Do 5 to 6 weeks of daily EBRT treatments
- Continue ADT injection for duration of 6 months
Questions:
1) The Radiation Oncologist already met with me and explained the process. Now he's awaiting results of genomic tests and PSMA/PET scan. How soon after he gets those results can I get this show on the road? Meaning, do I get the ADT injection and nipples zapped the next day, follwing his treatment? Or, are there more labs?
2) Will I have to do weekly meetings with the Radiation Oncologist while having the EBRT? Can I forego the office visit and do the meetings via Zoom?
3) How frequently will I have to do lab work (ie check PSA levels, anemia, cholestrol, white blood count, glucose, etc)
4) I'm assuming I'll need a bone density scan somewhere along the way to ensure no major osteoporis or to correct if there is. Yes/no?
5) Re-imaging of prostate after the EBRT or at the conclusion of month 6 ADT? Or is another biopsy done?
I live in a rural location. The RO is in one city, the RT building another community, and my primary care and urologist are in another place. So I'll also be doing (or my wife will) a fair amount of driving. Part of me is wondering if it wouldn't be easier to go to a one-stop-shop like City of Hope to get the EBRT done, just rent an AirBnb during the 5-6 weeks of treatment. I guess it depends upon how much more is involved than merely the EBRT treatments.
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conchjoe
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1) Why would you get your nipples zapped when starting ADT? ADT seldom causes gynecomastia - only Casodex monotherapy usually does. The ADT shot is 2 months before radiation begins. Radiation planning can't begin until after fiducials are implanted. A few days later, they can do the planning imaging study. It may take about a week to work out the plan.
2) You never have to see your RO during treatment, unless you have a reason to.
3) I think it's a good idea to get baseline testosterone and PSA. You may want to make sure testosterone eventually recovers to baseline. If ADT works (and it almost always does), your PSA will be close to undetectable. After testosterone recovers, a PSA test every 3 months for a year is typical.
4) bone mineral density is not usually a problem with 6 months of ADT.
5) No biopsies or imaging, just PSAs.
in addition to 6 weeks EBRT, you'll need to get a planning CT with empty rectum,. and full bladder to present to RO for radiation contour and dosage planning. Thats usually 2 weeks before, as the RO has multiple patients, and need to schedule the planning. Then right before day 1 you go in for a simulation, where you are positioned the same as planning CT. They will align those cute little dot tattoos you received in planning. A CT will be taken and overlaid to the RO's contour planning CT, and verify all is aligned.
You will get a CT or 3D XRAY every session to confirm your position is correct, minor adjust, emts will be made by the tech via computer programming.
If the PSMA shows lymph node invasion, that might add days to the treatment.
I have no prostate, so it was 33 days for prostate bed, and lymph nodes (invasion), others in the waiting room had an extra 10 days above that, dedicated to just the prostate.
What else do you talk about with guys in the waiting area (the ones holding a bottle of water are in for the same thing).
My Kaiser has 7 Linacs, 4 patients per hour per Linac, you run into a lot of commonality!!
My RO met me every week during IMRT but definitely could have been done with Zoom. It’s really just to make sure any side effects are managed properly and to see how you are holding up.
I’ve been on ADT 6 months and am 6 weeks post IMRT. Life back to normal except for the ADT side effects.
It seems you and I are on the same path. My DX was 6 months before you. My RT was complete 2 weeks after you. Same Gleason, no spread. Next 6 month Lupton 1 month away.
Same here....and no side effects and when I asked to skip them...he stopped my session that day until I did meet with him. It was all about $. He wanted to bill me weekly for less than 5 min session. $400/per session...about $100/min. What a scammer. He said Medicare required it. Total BS!
#4, yes, but unless you already have issues I wouldn't get in a big hurry. My stage 4 prostate cancer diagnosis was at age 59 and my first bone density scan was at age 61. There were no issues. I had another one at age 62 and they found mild osteopenia (sp?) in the hip.
PSA and testosterone at baseline is so obviously important it saddens me that every man doesn't get this ordered for him.
Who in the world told you to zap your nipples for 6 months of ADT injections? This is misinformation.
Agree that bone density is probably not an issue with a short ADT course but if it were me I'd get a Dexa scan anyway if I hadn't yet (or not in a long time anyway), especially at 76.
Also an oral pill form of ADT called Orgovyx. The monthly Firmagon shots were very painful for 3-4 days after the shot. Also an antagonist version of ADzt...seems to have documentation for less cardiac effects.
I tried to get out of the weekly meetings with my RO during my IMRT treatments but I was told they were mandatory. They were a complete waste of time. They seemed like just another opportunity to charge something for services. 🦊
Ok, the breast radiation is a prophylactic to sustained ADT breast enlargement. With a planned short course of 6 months, I'm not too sure there would be benefit vs possible radiation side effects. Once I was told I would be on ADT for life, I got it done, despite the low % possibility of it occuring. I'm a slim guy, and breasts wouldn't work out so well for me, lol. Over 2 years in (ADT), so far, so good!
Next up, with 40 RT planned, I met with my RO weekly to review. I was also in a study to examine cognitive function before, during, and post treatment, so there was those evaluations. Was on the water protocol, due to delivery of RT near the bladder, and that was the biggest PITA! Lol...
It does induce fatigue over time, I walked about 1 mile from transportation to the hospital daily, and had skip in my step when started, but by the end had slowed down quite a bit. Was all good though, probably all due to the monotony of daily wash/repeat cycles, lol.
If bone density is done at this stage, it's for a baseline. Are you expecting to remain on ADT? Again, can't see why a Bone Scan would be done for a short course of ADT. Also, you note monthly injections... Assuming Firmagon, and that could be an issue as many experience site injection discomfort. This may conflict with remaining still for the RT session... Why not a 3 or 6 month Lupron injection? Just curious...
I will just cover some of the items that were not discussed above or I may have missed them.
I had BOTH the SpaceOAR and the markers inserted one week prior to the planning session.
I am on Lupron for six months. Three more to go. I started it about 45 days prior to the 20 sessions of radiation.
Five days prior to the first Lupron shot the RO prescribed Bicalutamide to stop the testosterone flare associated with initial Lupron shot.
At the same time she prescribed Tamoxifen to counter any breast pain and breast enlargement. Worked for me and was easier then having to drive for the additional radiation.
Daily Radiation took about 30 minutes. No need for a driver.
After radiation I am under care of a Medical oncologist and 30 day follow up with the radiation oncologist.
Limited side effects from Lupron. Start doing resistance and aerobics a month or more prior to radiation and Lupron. You will thank me.
Read this forum EVERY day. You will learn more here then from the doctors. Guys like Tall Allen and many others are truthful, knowledgeable and always try to answer you question and then their are guys like me who have just been through the process.
I never wanted to join this league but now I feel like a Player Coach.
for what it is worth, I started going to City of Hope (formerly Cancer Treatment Center) in Newnan Georgia and it is a wonderful place and wonderful people. Everything under one roof. I’m not doing radiation but am doing triple therapy. Every 3 weeks I go there and they create a complete schedule. Check in, then blood work. You get blood work results in an hour. Then medical oncologist then chemo (for me). They also work in others as needed such as dietician, mental health, imaging, orthopedic, etc.. wonderful cafeteria, chapel, gardens, etc. trust me it is well worth the travel to go to a place like this.
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