Salvage radiation aftermath

I’ve been using these meds for 1yr now

@frankybaby
They can use SBRT radiation to zap that metastasis you have on your ribs. I had it done to my spine, and I know many people that have had it to their bones.

The thing is, you don’t want it to get too big and grown in or they cannot zap it. That’s why you always want to try to get it treated early.

@makemyday1

I have seen some data in literature that points to the use of SRT to the prostate bed, short term ADT and WPLN radiation in cases where the individual is high risk...

Long ago and far away, when I was experiencing BCR after a "successful" surgery, I recall reading literature from Mayo where the data they collected from BCR pointed to exactly that, more often than not recurrence in high-risk cases extended to the PLNs.

You say "puzzling that they’d perform radiation on my pelvic region without proof that anything was there..." keep in mind I think that even with today's sensitive imaging, there is always the possibility of micro-metastatic disease too small to be detected.

I discussed that idea with my medical team, urologist and radiologist at that point. They said yes, but there was no "long term" data supporting that, I acquiesced to the SOC, SRT to the prostate bed, epic failure, may your outcome be different!

Kevin

@jeffmarc
It may not be too late for Decipher test. My RP was in 2022 and After my BCR in July of this year I asked about a Decipher. My Urologist/Surgeon ordered my tissue sample to be tested. It was and came back low risk. My PSMA pet scan showed nothing but a solitary suspicious lesion with SUV uptake of 6.3 in my left first rib. My Oncologist wants to do SBRT to the rib even though SUV is in the grey zone between benign or cancer. The SBRT will follow my SRT to the pelvic lymph nodes and prostate bed. Oncologist not impressed with Decipher but Urologist was..... I have had two doses of Firmagon so far, but surprisingly my insurance has approved Orgovox pills for next 4 months.

@jeffmarc you make some great points . You rub on your research - Great job ! Yes, when I got my Salvage radiation my PSA went to 0.010 . Almost nothing . That was about 2.5 years ago . Since then Ive hung around 0.050 - 0,031 . Dr's feel there is healthy cells in the Pelvic bed that was producing some PSA but both the URO and RO said they are not worried about it. I was also discharged from Victoria Cancer clinic ( so I loose contact with my RO there) , BUT he told me to keep in contact with URO . SO I see him every 6 months. Same opinion every time , "your a healthy hiking 62 year old enjoying life ,and have very few normal cell in Prostate bed" . I said how do you know they are not cancerous I asked them both several times. They both say 'we see this all the time, very low levels of PSA going sideways - typically this means normal cells did not get killed on in radiation..." Never been on ADT . Operation 6 years ago , Gleason 3+4 . I actually feel fine .Gene testing done - nothing found . Dad was a prostate guy too and passed away at 67 with it. Late diagnosis I think - although a chemical engineer , he didnt trust Dr's of any sort. Odd for such a brilliant man ! I have No leaks , ED a lot better over time . Here is a site for people on ADT . They are getting great results and help men with their symptoms. https://estradiolinitiative.org . It surrounds the use of Estrediol . Richard a friend of mine is one of the Dr's taking it and has been on ADT for about 22 years . Yep ! 22 years ! Amazing fellow ! Still is very healthy . ADT with estradiol seems to limit Cardio events as well . helps men with 80-90% of symptoms so says people that have taken it under Dr direction . Keep well Jeff .

If you're still on ADT , check out this study group . A Dr friend of mine has been been in ADT for over 20 years ! Amazing I know ! here is their web page . https://estradiolinitiative.org . Richard , the Dr friend , has been taking it under his Dr's care and have eliminated 90% of the negative effects from ADT . He says it is more of less harmless and has great results . He says outcomes may vary depending on person , however more and more people are using it WITH ADT , as it is normally synthesized by your testosterone , but does to zero as well and T is missing in ADT people . I hope this helps . You feeling better ?

@makemyday1 I hope you will take advantage or this respite and live your full life now that your numbers have risen and are hopefully feeling better. Cancer is just one part of who we are. Our journey is pretty similar. Things have changed and radiation side effects seem never ending but figuring it out. My physical endurance and strength is slowing returning 3 months post ADT and 7 months post salvage.
Best wishes on your continued recovery.

@vancouverislandhiker
Are you talking about Richard Wassersug PhD, Who has been on estradiol for over 20 years as you mentioned. Also wrote a book about ADT.

He actually has done two different online meetings with ancan.org. You can go over to their website and watch his videos discussing using estradiol instead of ADT.

The one thing that annoyed me is that if you have BRCA2 you can’t do it, The extra estradiol is just poison with BRCA2.

Thanks or sharing your experience, but I am sorry to hear about the many unpleasnt side effects of the additional tereatments.

I recently had prostate suregery and the risk profile from the final pathology report and a decipher score of .75 I received last week, surgest a high likelihood of cancer recurrece at some point in the future.

Given the quality of life issues you described, I am wondering if the additional treatments are worse than the disease?

I want to live long, but NOT at the expense of my quality of life. That really worries me a lot. The only potential silver lining might be better treatments with less toxicity and side effects may be available relatively soon.

I wonder what you and experienced folks like @jeffmarc think about my worries and hopes? What bad are the side effects of salvation radiation and hormone treatments? Are there better treatmens on the horizon are we stuck with the same treatmens whose side effecgts might be worse than the disease?

@soli
It’s true. I’ve been on ADT for almost 9 years, But people I know have absolutely no idea unless I tell them. Even with PC for 15 years, I’m very active. I run on the track a mile twice a day and it probably keeps me energized. I go to the gym three times a week just to build up my muscles which at one point I couldn’t even get off the floor, and now I can. My wife and I go swing dancing almost every weekend, Did it last night. I never get tired doing that.

I am now getting very few hot flashes, I used to get a lot. Many days I get zero or one, And they’re very mild.

I had a prostatectomy 15 years ago. 3 1/2 years later, my PSA started rising, and I Had salvage radiation. 2 1/2 years later, it came back and I went on ADT.

I am on Orgovyx and Nubeqa And it really makes it easy, No side effects from that Nubeqa, It’s even allowed me to reduce the amount of blood pressure medicine I need because of Zytiga.

I do watch what I eat very few carbs and sweets no deli meats or red meat, But even with those rules, you can have steak once a month and not worry about it.

I’ve had four reoccurrences and I’ve been Castrate resistant for six years, Going on almost 2 years undetectable. I do have BRCA2 so someday it’s going to come back.

I’ve had this so long I really don’t worry about it. It’s not something I think about.. With the proper treatment, you can live until you die of something else. I’m almost 78 And I don’t look or feel that old. I know there are drugs and treatments. I can take one when what I have now fails.

PC can be scary, but you just have to live your life.