Salvage Options after Relapse - Prostate Cancer N...

Prostate Cancer Network

4,946 members3,081 posts

Salvage Options after Relapse

Xcrunner1988 profile image
18 Replies

Greetings. I was diagnosed with Prostate cancer in 2015 at 49 years old. I had 1 treatment of HDR Brachytherapy at UCSF. PSA consistently dropped (to 0.5) until 2020 when Covid halted my trips back to UCSF. 2021 had me preoccupied with DVT/PE.

I’m now reading 3.2. MRI showing still contained in prostate. PSMA Scan next week to confirm.

Meeting with team at MD Anderson next week. As I understand it, surgery after radiation will cause not only ED but also likely permanent incontinence and possible bowel issues.

More radiation (and likely ADT) has its own issues.

I understand I’m out of great choice but wondering if folks have salvage experiences to share? At only 56 looking for something that will get me pretty far down the road.

thanks much.

Written by
Xcrunner1988 profile image
Xcrunner1988
To view profiles and participate in discussions please or .
Read more about...
18 Replies
Tall_Allen profile image
Tall_Allen

This clinical trial at NIH is free. I think they even pay for transportation:

clinicaltrials.gov/ct2/show...

I know someone who did salvage SBRT successfully at UCLA after primary HDR brachy failed locally.

Have you talked to Joe Hsu at UCSF? He should be able to treat you focally with some more HDR brachy to just that spot.

Of course, salvage surgery is out of the question.

Xcrunner1988 profile image
Xcrunner1988 in reply to Tall_Allen

thanks for the response. I haven’t been back to UCSF. Live in Texas now and MD Anderson seems top notch. My radiation oncology guy has left UCSF. He’s at UCLA now.

Why surgery out of question? Just too many side effects?

Tall_Allen profile image
Tall_Allen in reply to Xcrunner1988

IMO, MD Anderson is not "top notch" for this particular treatment.

Look at the table at the end of this:

prostatecancer.news/2017/09...

Salvage surgery has high risk of fistula! Do not do it no matter what a hot dog surgeon tells you - every patient I talked to who did it regretted it. There are excellent salvage treatments, but you may have to travel. Highly recommend NIH.

Xcrunner1988 profile image
Xcrunner1988 in reply to Tall_Allen

As expected the experienced salvage surgeon recommended salvage surgery. I have PSMA scan tomorrow. Video consult with RO that did my HDR Brachy next Monday.

Frankly I’m confused and concerned. If the scan confirms the MRI assumption that it is still contained and with a PSA of only 3.1, I feel like I’m getting a second shot at cure and unlikely to get a 3rd. At only 56 yo I’m not sure what to do

However, I also understand I was getting advice and sales pitch (“this is going to kill you by 70”).

Has anyone here had salvage ralp or is it that rare? I feel like I’m willing to deal with a lot to be cured. I don’t want to deal with it if I’m going to be facing round three anyway.

Tall_Allen profile image
Tall_Allen in reply to Xcrunner1988

It is rare because it is horrible. Don't do it!

Jancapper profile image
Jancapper

I also elected to have the HDBT. It has only been a few months since the procedure. Did you also receive the 25 sessions of IMRT and two years of ADT? I have G-9 cancer confined within the prostate, so I chose the three tier approach. I would like to follow your case and see what you ultimately decide upon. Best of luck.

billy1950 profile image
billy1950

hi…i had EBRT in 2004-5 for 8 weeks. the recurrence showed up in biopsy and MRI in 2021. Been advised ( by MSK in new york) against having RP due to complications. Recurrence is Contained in prostate per PSMA. I understand this dilemma!

Both HDB and SBRT has been recommended. Both are more radiation not sure if i want additional radiation.

Xcrunner1988 profile image
Xcrunner1988 in reply to billy1950

Have you made a decision Billy?

Xcrunner1988 profile image
Xcrunner1988

Greetings all. With all the kind comments I wanted to update:

March Scan came back with no spread. June fusion biopsy at MD Anderson came back with three positive cores. All 3+4.

Surgeon still “suggested” surgery by UCLA RO who treated me first time at UCSF believes he can get it with 2 rounds of HDR Brachy.

Third opinion was do the salvage HDR Brachy. Watch PSA like hawk. If it comes back, do surgery. Thought being it could come back even with surgery so why do it now.

After careful consideration I’m having Dr Chang at UCLA do the two HDR Brachy in August.

The waiting is terrible but it’s a busy work summer so that should keep mind off it.

More updates as they come. Thanks for the support.

billy1950 profile image
billy1950 in reply to Xcrunner1988

Hi runner,

In January 2023, i talked with Cornell- Weill doctor who was going to do SBRT…He wanted a MRI and another PSMA i did both of them . In early 2023 the tumor is still only in the prostate (with no other signs of cancer elsewhere…)

After learning more about the amount of radiation i would be given with SBRT, i asked about possibly a focal SBRT, (i.e. only hitting the right side where the tumor is located.). They didn’t want to do that! So i never had SBRT…

I had 6 months of ADT last year and my PSA went down to .09 but since then has come up to 1.03. My next psa is next month…

I really don’t want either SBRT or HD brachytherapy -either one may eventually cause bad SEs…

I was consulted by a well respected oncologist at Memorial Sloan Kettering about having 2 sessions of HDR brachytherapy….Conversations went on for most of the summer of 2021, however, i eventually said no…

Curious to know what or how long did you have 1 treatment of Brachytherapy in 2015?

Having had 8 weeks of EBRT in 2004-5, is basically why i don’t want more radiation…

What is UCLA telling you about the amount of radiation now since you already had HDR brachytherapy in 2015?

Continuing to do more ADT is no cure…

In 2004-5, i wasn’t informed about the difficulty in having a recurrence after having radiation. I suppose i was thinking that the cancer would be permanently gone…

I do feel fortunate since it has been 18 years since being first diagnosed!

Billy

Xcrunner1988 profile image
Xcrunner1988 in reply to billy1950

Hi Billy,

In 2015 I likely overestimated the side effects of surgery and underestimated the chance of recurrence with either surgery or HDR Brachy. If I had a do over I probably would have gone surgery route although still concerns it’s pushed too hard.

Now facing salvage I’m trying not to underestimate surgery side effects. Given it hasn’t spread. Is still appearing less than aggressive, more radiation is the right choice for me.

I will pull my old files and see what the 2015 dose was. It was whole gland. Dr Chang has said they have unfortunately seen the guys that’s did one day one dose have had biochemical reoccurrence. It knocks it down, not out.

I was not put on any ADT during initial treatment

This time around it will be a focal treatment. Two doses. One week apart. Again I’ll get the dose strength from my notes for you.

Chang has had good success with this treatment and salvage process. Of course always the risk it could come back. However, even with clean PSMA there could theoretically be microscopic spread so the same/similar reoccurrence risk would be there with surgery as well.

Hopefully, worst case I can kick can 15 years down road.

Any specific questions please fire away.

billy1950 profile image
billy1950 in reply to Xcrunner1988

In 2015 what did your treatment with HD brachytherapy involve? Was it a one time HD dose? In then out…

My EBRT involved having a total of 7140 cGy over eight weeks. My PSA was 6.9 with gleason 6. No ADT due to the numbers, i suspect!

One thing that i am facing is “intraductal” cancer cells which are aggressive ( also a poor prognosis). However, as you say if the PSMA doesn’t show anything outside, it is somewhat promising for now…

What i do wonder about is the difference between having the original radiation being EBRT vs. HD brachytherapy? My treatments vs. yours! Having more radiation in your situation could be different than mine!

My concern with having the salvage HD brachytherapy was that there is no way in knowing how additional radiation will effect the scaring ( fibrosis) that was left from the initial radiation….

In other words, there were a lot of unknowns, with SEs, etc. I could have been overthinking…I was reading a lot on the internet from studies, etc…

However, after a summer (2021) in having different conversations with the doctors at Memorial Sloan Kettering, my last telephone conversation with the top oncologist ( Dr. Zelesky) was that if i had doubts about the salvage HD brachytherapy, then it would be best not to have it…I was at peace afterwards…Additionally, it has been over a year now in talking with a psychologist at the local hospital whose specialty is cancer…At least, in a way, i am prepared for whatever may happen in the future!

Xcrunner1988 profile image
Xcrunner1988 in reply to billy1950

I checked my notes. I made a note saying 2015 was 1 x 19. Salvage would be 2 x 13.5. Apologies is that is wrong. I seem to remember a number in nineties but still way below your dose number.

2015 was one and done. Salvage is 2 doses one week apart.

My Gleason was 3+3 and 3+4 in 2015. 3+4 now. PSA got as high as 6 in 2015 leading up to treatment. PSA now 4.0.

I think it’s hard to compare two different patients with two different symptoms and treatments.

At the end of the day, I believe, the most effective treatment is the one that leaves you at peace with decision and confident in treatment plan.

billy1950 profile image
billy1950 in reply to Xcrunner1988

Your PSA is now 4…your oncologist waited until it got to 4 ( and not sooner ?)

cGy is different than Gy…i actually had in total 7740 cGy , This converts into 77.40 Gy. My sense is that since you had one treatment only (in 2015) that you had Gy in the 90’s with HD brachytherapy….having the needles in only one time…(Sometimes initial HD brachytherapy is done in two sessions…)

My 77.40 was divided over 8 weeks…Not all at once…

I know that salvage is done in 2 treatments a week apart…That number of 13.5 is what i also remember being told me with salvage…there is something about consideration of a lower dose around the urethra….You could check with RO at UCLA about this….Not really sure how the doses can be controlled through the needles to different locations….This is something that i vaguely remember talking about with Dr. Zelesky’s team…

I agree that after making a decision one has to be at peace in whatever the outcome/s will be in the future….

Xcrunner1988 profile image
Xcrunner1988 in reply to billy1950

My PSA was 0.5 at it nadir. I did not have it checked in 2021-22 because frankly I was dealing with other health issues I wasn’t sure I’d survive.

January 2023 it popped to 3.4. Down to 3.2 in February. 4.0 in May.

I’m sure the team at UCLA will be mindful of previous dose and urethra and colon. I’m full speed ahead now.

MackworthGuy profile image
MackworthGuy

guys, following this discussion. Wishing you both well and letting you know your input here is helping others like me understand choices, decisions and outcomes. Thanks for sharing!

billy1950 profile image
billy1950 in reply to MackworthGuy

I have read over the last few years of guys having the combination of HDR with EBRT. It wasn’t offered to me in 2004.

billy1950 profile image
billy1950

I hope for the best for you! Will see if we can connect sometime in the future…

You may also like...

Travel 6 weeks after salvage radiation

which will fall 6 weeks after the end of his salvage radiation. It therefore involves flying. Dad...

salvage radiation after surgery?

Hi - Shouldn’t I be doing salvage radiation or chemotherapy now? I had my surgery February 25 and...

Questions to ask my Urologist after salvage radiation treatments completed

completing an 8-week course of salvage radiation treatment consisting of 40 sessions, I'd like to...

Rectal Bleeding 7 Months After Salvage Pelvic Radiation

years, after pelvic radiation. I had RP October 2018. I finished 38 radiation sessions October...

PSA rising after salvage treatment

advice. I had a radical prostatectomy in 2021 followed by salvage radio therapy. My psa levels have...