Hi everyone, I had prostatectomy winter 2019 and began Lupron Jan 2020. Gleason 9 and spread to 1 lymph node. PSMA scan was clean. Was to start 40 rounds of radiation last Tuesday but in consult with several of my oncologists we postponed due to virus risks traveling back and forth from Brooklyn to Sloan Kettering in Manhattan/NYC every day. PSA and Testosterone are negligible at .05 and 6 respectively. I'm safe with Lupron keeping my cancer in check for now as opposed to risking getting Covid19 with frequent hospital interactions while getting rad treatment and traveling in different cars services every day. My med team and I are comfortable with decision to delay. Any thoughts on delaying Rad? Thanks and everybody stay safe.
Best wishes, Bill
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geobill99
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PSA in October .21 and .31 November before the surgery and before Lupron? I assume you mean it was 21 and 31 before..
Delaying seems reasonable especially now. By contrast, my RO had no problem with me doing a similar delay except mine was for a long before planned vacation. So there’s that.
I had a very bad experience with radiation so I would say stick with the Lupron. Your PSA is low enough so any delay will not be that bad and the Lupron should keep things in check until the coast is clear.
Radiation proctitis which fried my rectum into a mass of scar tissue and constant pain making it almost impossible to sit. After a year of pain management I couldn’t take it anymore so I had a Colostomy hoping that would it it time to heel and then reverse the procedure. Three and a half years later not much has changed except now I can sit in a chair for about twenty minutes and eat at the table with my family. I have been the outlier for every procedure I’ve had done. So I’m not a big fan of radiation.
I know another gentleman who had a similar experience more than a decade ago, and am very sorry to hear about bad experiences like that. I think it is fine and sometimes useful to share those experiences, but using your own personal situation as justification to prescribe what another patient should or shouldn't do goes beyond what a support group should be in my opinion. Every case is unique.
Personally, as a fellow member of this "club", I appreciate anyone and everyone sharing any of their experiences, but get turned off when anyone tries to prescribe what treatments I should or should not undertake.
I’m not trying to recommend anything. You asked and I offered my experience. What I do know that Lupron has given me better results than any thing else I’ve tried. I am getting ready for a clinical trial that was supposed to start on Wednesday and part of the preparation was a one month Lupron shot. It knocked my PSA down from 8.8 to 2.2 in that month. Now with my Hospital in NYC in the middle of the pandemic in full emergency mode my oncologist suggested that we start at the end of April instead. Which is fine by me, I really wasn’t looking forward to walking in there when they have so much they are dealing with. Plus even though the PSA is now back up to 6.8 I know that if need be another shot will buy me the time I need to get through the trial. That’s been my experience and the members of my advanced Prostate support group are happy that I can go through with the trial and hopefully do well.
My situation was similar to yours at Dx, but RP was not in the cards for me. If the ADT is working (looks like it) a delay in rad treatment is likely to be insignificant, in the bigger scheme of things.
I was G9 and node positive (more than one 'hot spot').
My rad treatments consisted of about 45 sessions - spread over several months.
Most of the focus was on the gland itself while the nodes received lesser doses (not the max).
You're on the right path for now - excess worry is useless ....
Yes. I also delayed my trip(s) to Australia for 3 months (or whenever) for Lu-177-PSMA treatments in conjunction with Veyonda. Must be patient and looking to the long game.
Thank you everyone that responded to my post. You all are very informative and encouraging to stay the course. Good luck to all of you battling the adversities we face together.
First of all no problem delaying the radiation, Second tell us more about yourself (all info is voluntary but it helps us help you and helps us too). Thank you.....
Here is an old post of mine:
I've had 39 treatments (8 weeks, 5 days a week minus 1 day). I did NOT have any side effects during the actual "FRYING". However years later it was discovered that my left urinary tract had become scarred/constricted and required many "in and out stents" for my kidney and urine. BTW the in and out of the stents were "a walk in the park". No Pain or discomfort. Rad was done at Memorial Sloan Kettering cancer center in NYC (Dr.Zelefsky).
After not having a stent in my tract for a few years my Urologist went in to see what's happening this past Wednesday. This procedure was done based upon routine CT scans and a scheduled Ultrasound prescribed by my Urologist. So in went a stent (he also added one in my right side for a kidney stone in my right Kidney).
Just be wary of the damage that Rad can do (even if it's silent).
Ask about a SpaceOAR Hydrogel. !!!
Good Luck. Good Health and Good Humor.
j-o-h-n Monday 03/30/2020 5:07 PM DST
P.S. One plus is that my naive blow up doll can feel the left stent while we're dancing.
Thanks John. I also have Dr. Z as my RO. He is completely on board with suspending my rad as well as my med oncologist Dr. Morris. I'm a retired math professor living in NYC. I had my RRP at NYU....Dr. Taneja. All is going pretty well. Numbers are good. Very little incontinence but my urination stream is a bit weak. No dribble. Just slow. I'm staying close to home and well stocked with food, meds, etc. This virus is VERY contagious. Reports of patients coming in with minor cough/fever and cleared lung xray and within 6 hours lung xray goes opaque and death follows within 48 hrs! Insidious. I'm safe at home and will ride it out here as long as PSA/Testosterone stays exceptionally low. It's a crap shoot. I get it. Thanks again for your support.
Thanks for your response.... Dr. Morris is my M O also...... Well I live Queens and I had to postpone a Lupron injection due next week until July.... No concern about your stream as long as you're streaming.....Stay home and remember "figures don't lie, liars figure"...
Stay safe.....and keep posting here..........
BTW If you know the play/movie Westside story there's a song in the play about Officer Krupke well I sang it to Dr. Z and changed the lyrics from Officer Krupke to Dr. Zelefsky... If looks could kill.....
Smart move. I am at 16 treatments of 44 at Yale New Haven Hospital. Every day there are more and more restrictions and hoops to jump to get into the hospital for the treatment. So far, so good... get in, get the treatment, get out. There may be an interruption, and RO says I can have a gap of up to two weeks if necessary, with additional treatments added at the end. Hoping we get through as many as possible without a break. To date, there are 148 patients admitted with COVID, 34 on vents, and four deaths (I have some connection with nursing staff in other areas of the hospital).
Wondering how others are weighing the benefits of treatment vs costs. I believe if I hadn’t started yet, we would have postponed.
Irrespective of the hassles created with Covid19, there real advantages of treating your aggressive PC with ADT prior to external beam radiation anyway. The prostate us a smaller target and there is less bystander organ damage. Published from an australasion study.
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