j-o-h-n3 years ago

This is an old post of mine regarding radiation to "the bed".

I had 8 weeks of salvage radiation to "the bed". 5 days a week (not weekends) for 8 weeks minus 1 day for a total of 39 sessions. The actual radiation was like getting an x-ray by my dentist. I never had any side effects during the whole 39 sessions. However 2 years later my left urinary tract was "fried" as per my urologist (or from passing prior kidney stones he was not sure). So I had to have a urinary stent placed up my urinary tract (through my willy which is really nothing - sounds terrible but it's nothing) to aid in passing my urine (which was never a problem anyway). So I had stents in and out every three months for many years and now I'm stent free, However today 15% of urine from left kidney and 85% from right kidney, but not a problem. So make sure you get a good radiologist. Also I don't know if this would apply to you but guys here recommend "A PADDLE" to be inserted for protection of parts of your body. Make sure you ask your R.O. about the paddle and make sure you ask here on this forum before getting fried.

Good Luck, Good Health and Good Humor.

J-o-h-n Thursday 08/27/2020 5:36 PM DST

searchingtom in reply to j-o-h-n3 years ago

Thank you for responding j-o-h-n. I'm not sure what the alternatives are to radiation for my profile. Your experience does scare me but not sure what I can do to minimize the associated morbidities. I think I will try to get the PSMA scan though.

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j-o-h-n in reply to searchingtom3 years ago

I'm sorry if I scared you... I actually meant to calm you down since my 39 sessions were like "nothing". No side effects and no pain. I went home after each session by myself using the New York city subway system. The issue with my urinary stent did not involve any pain or blood. It was spotted with a "routine" MRI. And as I mentioned placing the stent in and out every three months is actually "a nothing burger". Again each time no pain or blood... Well hopefully your experience with the initial radiation will duplicate my experience.

Good Luck, Good Health and Good Humor.

J-o-h-n Thursday 08/27/2020 8:57 PM DST

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searchingtom in reply to j-o-h-n3 years ago

Oh good to know ! I have dealt with multiple painful episodes of prostatitis over the last 20 years and they were NOT pleasant. One time I was travelling to Mexico City and I had an episode where I could not urinate and was in strong pain - I will never forget that. I want to do everything I can to minimize the bowel and bladder morbididties Again, thank you for responding. The wonderful people on this forum are a lifeline for someone facing this.

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Hidden3 years ago

The only plus I can see is that he is local.

timotur3 years ago

The only thing I would question is not knowing which LN(s) are involved so the radiation field could target those. The sensitivity of a PSMA scan at such a low PSA is probably about 30-40%, so it might provide useful information. You may ask the RO, if he knew which LN’s were involved, would it change his radiation mapping. In my case, I had a mesorectal node detected by the PSMA scan that’s not in the usual chain of LN progression, and the RO treated that node, which otherwise would have been at the periphery of the radiation field.

searchingtom in reply to timotur3 years ago

Hi. thank you for responding. Did you have the PSMA scan performed at UCLA ? May I ask how long that took? Did you stay there a couple of days? Did they share the results with you or did they send them to your radiation oncologist to cover with you? How was the whole PSMA experience?

Thanking you in advance !

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Concernedwife24 in reply to timotur3 years ago

My husband had the scan at ucla also. Also found mesorectal node. He starts radiation on Monday. Did you have any side effects from it? He is so worried.

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timotur in reply to Concernedwife243 years ago

No SE’s at all from radiation, either Brachytherapy or IMRT... but had muscle fatigue and muscle loss from 18 mos Lupron. (see profile for tx plan)

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timotur3 years ago

Yes, I did the PSMA scan at UCLA in Feb 2019. It took about 3 hours overall, just one afternoon. The process isn't bad-- get a port put in your arm (for contrast later on), drink a quart of liquid containing the radioactive dye, then take the scan, which takes about 30 minutes, with and w/o contrast. The radiation tech gave me a CD with the images as I was leaving, and a couple of days later received the radiologist's interpretation. Cost was the same, about $2,800 OOP. It was really pretty easy, the only thing that hurt was the port placement.

searchingtom in reply to timotur3 years ago

Thanks for responding so quickly. Good to know how your experience went. I am going to contact them tomorrow. UCLA's clinical trial literature says that one of the requirements is that the radiation oncologist uses the scan in the treatment protocol. Not sure how that plays out or is managed. Regardless I imagine that I would have to delay the ADT treatment until after the scan. I haven't ever been to LA and not looking forward to the logistics of getting in and out

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timotur in reply to searchingtom3 years ago

UCLA med center is about 20 miles north of the airport off the 405, pretty easy depending on traffic. There is a garage next to the med bldg, and they validate parking if you are paying OOP. If you need to stay overnight there is a place on campus for patients that’s very reasonable and only a 10 min walk (Tiverton House). Yes, delay the ADT. Your RO should advise that he would adjust his radiation mapping based on findings from the scan, which would satisfy UCLA’s rqmts.

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searchingtom in reply to timotur3 years ago

Thank you - very helpful information !

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wilcoxsaw in reply to searchingtom3 years ago

Pan Thin, one of the research coordinators at UCLA for the PSMA, told me Monday on the phone, that they are not scheduling any scans after Sept 4th, and that they are full up until that time. They have some issues they need to resolve, and Pan did not know when they will begin rescheduling scans , she said she might know more as Sept 4th gets closer. Stanford and UCSF are not taking external patients without a long wait, or have a psa requirement higher than yours is.

Be cautious of those on this site that are telling you ADT may not be necessary, what field of treatment you may or may not require, etc. Some sound very knowledgeable, citing many studies, replying as if an expert, but none (perhaps one on occasion) have an MD following their name and often contradict MD's that have many years of training/experience treating actual patients and seeing results of those treatments first hand.

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searchingtom in reply to wilcoxsaw3 years ago

Thank you for your sound advice. At the end of the day I will make a selection of next steps and providers based on both objective and subjective information. The universe is much bigger than what most of us are plugged into

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Tall_Allen3 years ago

This study found there was no advantage to ADT when PSA was below 0.6. Maybe email it to your RO and ask for his opinion.

jamanetwork.com/journals/ja...

68.4 Gy to the prostate bed is quite low. My RO (who did the following study) routinely uses 72 Gy, so does Zelefsky at MSK:

thegreenjournal.com/article...

I agree that at your low PSA, you may not require lymph node treatment:

prostatecancer.news/2019/06...

prostatecancer.news/2018/10...

Because of the pandemic, some ROs are recommending an abbreviated course of salvage radiation:

prostatecancer.news/2016/08...

searchingtom3 years ago

Thank you Tall_Allen. Your expertise is so valuable. I will dig into the links and pursue some answers. One interesting response from the question I asked around potentially having to do a second radiation treatment to some of the broader areas not covered by the initial treatment. He talked about the difficulties with shaping the treatment plan especially around the edges of the previous treatment. It did not sound from that response that it is something that has been done a lot.

marlins13 years ago

Hi searching- my pc is almost a duplicate of your situation. I had a PSA o f .34, 36months s/p Robotic Prostatectomy. My MO here in Las Vegas recommended the same treatment. He ordered a Axumin scan which was negative and felt the BCR was local, therefore suggested one 6mo shot of lupron and the RO gave 39 treatments of IMRT full field and boost to prostate bed. The only side effect I had was some occasional colitis. Nothing changed much with any urinary incontinence or ED. The 6mo of lupron turned into a year of low T and all the side effects from that. The ED did recovery after one year and my last two PSA's 6month apart are undetectable. So I would not fear treatment. You might want to check your disease free interval on the MSK normo charts. If yours is like mine , it came out to about 80% 6yr disease free.

searchingtom in reply to marlins13 years ago

Wow we are very similar. Thank you for responding. Did you have the Decipher RP test?

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marlins1 in reply to searchingtom3 years ago

Yes and similar low risk

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searchingtom in reply to marlins13 years ago

Thanks for responding so quickly! Can you tell me the total amount of radiation you received compared to the 68.4 GY my RO is recommending?

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marlins1 in reply to searchingtom3 years ago

Yes, 7020 cGy

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searchingtom in reply to marlins13 years ago

Thanks !

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rscic3 years ago

His suggested next steps:

1. He does not see much value in either the PSMA scan or the Auxium scan due to the low PSA and that it would not change his treatment recommendation.

---if PSMA or Axumin PET detects anything the RO would likely focus an extra dose of radiation at that site .... at least this is what mine said he would do with an Axumin PET scan -- at the time I was not eligible for a PSMA Scan.

2. His recommendation is to start ADT immediately - lupron ?

---I received ART & I had a PSA of 0.05 (2019). My MO (a respected researcher) said ADT was somewhat controversial in my case and he could not recommend it .... however your case as well as your MO & RO may differ .... something to discuss.

3. In 8 weeks perform 38 treatments of IMRT radiation (total of 68.4 Gy) targeting the prostate bed and the lymph area right around the prostate region. This is because of the radical prostatectomy findings that basically saw no spread of cancer beyond the capsule and the low Decipher RP score.

---I had EPE with positive surgical margins & neg lymph nodes. I received ART to the Prostate bed & the pelvis including the Iliac lymph nodes regions. I was told there are difficulties in the overlap regions if one had to later go back and radiate the pelvis. I was told the problem is solvable but you only get so much radiation in your lifetime to an area so the overlap problem can be a difficulty. Something to discuss with the RO & MO.

Also consider meeting with an MO at the Univ. of WI Madison.

I used to be a General Radiologist in Fond Du Lac, WI. UW Madison is where I would go to see a MO or Urologist if I were still in WI (I am retired & in the Las Vegas area). I think you are making the right move to discuss your case with someone at UW Madison .... I would suggest you also see a Medical Oncologist (MO) there to also review your case.

In my situation, the Urologist (USC in Calif) said I needed no additional treatment at this time. The Medical Oncologist (MO -- a well known Prostate Cancer Researcher based in the Las Vegas area) said I should get Adjuvant Radiation Treatment (ART) and I did. I say this because opinions can differ.

My last PSA was 0.01

Good Luck,

Rick

searchingtom in reply to rscic3 years ago

Thank you so much for your response fellow Wisconsinite ! It is a confusing process as there is much contradictory studies and opinions. I am starting first with my local group so that I can compare them with what the academic hospitals are saying. I will talk both with UW Madison and Froedtert and pursue the PSMA at UCLA. Take care and stay safe.

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rscic in reply to searchingtom3 years ago

Tell your story to others. My wife's training coach (still in WI) badgered her husband age 46 to get into the Doctor when he started developing Urinary symptoms. Turns out he had Prostate Cancer & he got recent surgery for low grade early disease. His wife told me without my telling my story they likely would not have gone in ..... at least not so soon. Sometimes what you say REALLY matters.

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searchingtom in reply to rscic3 years ago

Agreed. Thanks for responding.

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searchingtom3 years ago

Very interesting and thank for responding. I will take a deep look into the study. I might as well do the PSMA if I can as it may influence future therapies and/or different doctors/hospitals.

Peppertree6023 years ago

Hi fellow cheese-head! I am in Milwaukee and gleason 9, had RP with Dr. Vip Patel in Orlando on March 26th and last 3 PSA's so far <.01 and deciper at 41%. But seminal vesicle invasion and intraductal as well, but negative margins and no LN involvement. I go to Froedtert and see MO Dr. Kilari and RO Dr. Coleen Lawton. Both I feel are excellent Kilari really thinks out of the box and my last visit (1 week ago) Kilari said if we do PSMA there is a place in Chicago, so only a 4 hour drive for you.

Good luck and agree get another opinion.

searchingtom in reply to Peppertree6023 years ago

I did not know there was a place in Chicago that did the PSMA scan. That is very helpful. Dr. Kenneth Jacobsohn from Froedtert performed my robotic radical prostatecomy so I will follow up through him. Thank you so much for this information!

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Hidden in reply to Peppertree6023 years ago

Exact duplicate stage here, only 10 months earlier. First 7 months PSA 0.02, now 0.05. Close following, but won't do anything before 0.1.

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Horse128883 years ago

I'm surprised to see this recommendation. I would have said:

1) All the ADT is going to do is make you miserable and cause other imperceptible health issues, e.g., bone density loss; it won't improve your survival.

2) There is decent change an Axumin scan will find something at PSA 0.38. I would do that, now, especially if it's growing rapidly.

searchingtom in reply to Horse128883 years ago

Thank you for responding. I will push to get a scan. Preferably PSMA.

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ron_bucher3 years ago

A year after my prostatectomy my PSA went to 0.20. IMRT without Lupron gave me another 7.5 year remission with undetectable PSA.

searchingtom3 years ago

First of all thank you for your comments! Your information is encouraging and insightful. I am anxiously awaiting my next two discussions with academic hospitals. I have the first consultation on Monday with the University of Wisconsin at Madison.

fluffyfur3 years ago

1. Because you had no nodes removed during surgery I would push for a PSMA scan. You may not need radiation to them. Or you may need a more targeted dose. Either way it could provide you with more valuable information.

2. The dose of radiation you were advised seems low. Most large cancer centers are doing 70 gy.

3. Two RO's advised my husband against ADT at that level of PSA based on the latest studies. I would probe around his rationale for giving it to you. What is the goal? Will in increase your OS? Does he give it to all his patients getting radiation and why?

I'm glad you're seeking other opinions.

searchingtom in reply to fluffyfur3 years ago

Thanks for the info and response. I find them very valuable and I will certainly follow up on them. Take care!

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ron_bucher3 years ago

I had IMRT in 2007 when my PSA went to 0.20 a year after RP. It gave me another 7.5 years of undetectable PSA. I’m now in remission again after more IMRT on more lymph nodes plus Taxotere 3 years ago. My side effects from radiation have been very minimal. Decades of experience is what I always want.

searchingtom in reply to ron_bucher3 years ago

Thank you for responding. I hope my results are as good as yours !

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