Radiation and T-suppression post radical prostatectomy

[Webothbeatcancer]

My husband needs to start radiation and testosterone suppresion due to a continued rising PSA post radical prostatectomy. He had the surgery a year ago and the last 6 months it has been going up with each blood test. Are there any questions you all think we should be asking that lack of experience and knowledge may not have been thought of ?? Thank you

[Tall_Allen]

Here are some questions:

prostatecancer.news/2017/12...

[Hidden]

It must be disconcerting after the RP . But truthfully we see this all of the time . I think it’s more common than not to have a return after an RP . I was not a candidate for surgery . My urology was too twisted with pc tumors blocking my urethra and bladder . Did imrt and double adt until undetectable ..Believe in the poisons and put good things into his body to try and counter affect the treatments . 🙏😷

[pjoshea13 in reply to Hidden]

An early study [1] of robotic RP biochemical recurrence reported the following stats for 5-year recurrence-free survival:

Gleason 3+4 = 86%; 4+3 = 62%; higher = 43%.

{pT2 = 94.4%; pT3a = 63.8%; pT3b = 47.1%.}

In this study, only 8% of cases were GS = 8-10, so it's not "more common than not to have a return after an RP".

"This represents the third report of the oncological outcomes of robot-assisted radical prostatectomy, demonstrating a 5-year biochemical recurrence rate of approximately 14%"

-Patrick

[1] pubmed.ncbi.nlm.nih.gov/230...

[Hidden in reply to pjoshea13]

Thank you ! I see many men here after having RPs. Good day Sir.

[pjoshea13 in reply to Hidden]

Lulu,

I see that you joined the group on Jan 27 & within days came to the conclusion that RP is not a good option.

The fact is, for those of us who had any form of therapy with curative intent, we would not be in this group if there had not been biochemical recurrence.

-Patrick

[Hidden in reply to pjoshea13]

Actually Patrick , I’ve been here 3 yrs . I dropped off a month ago and re joined . I’m not saying an Rp is not a good option . If lucky and caught early it can be close to a cure. What I’m

Saying after reading for three years is that many of our members had an Rp then needed RT and adt still afterwards. Maybe it’s just those guys in those shoes that end up here. Probably most guys cured by an Rp don’t show here. ?

[pjoshea13 in reply to Hidden]

Lulu,

Welcome back!

I remember way back being told by a doctor: "I can keep you alive." & then: "unless you get mets - those guys don't do well."

He was clearly talking about a minority, & with 248,530 new US cases projected for 2021 & only 34,130 deaths, it seems that over 200,000 men diagnosed this year will not end up in this group.

& from the study I cited, it appears that only one in seven men who opt for RP have 5-year biochemical recurrence (& not all of those will get mets).

The great majority of cases have a Gleason score of <8 & that helps, of course.

-Patrick

[Hidden in reply to pjoshea13]

Yes Sir Patrick , the way I look at it is that we are lucky to be alive past the first round of APC and treatments . Thank God for each day .🙏

[tango65]

If his PSA is around 0.2 you could discuss having a Ga 68 PSMA PET/CT to detect location of pelvic lesions to guide radiotherapy and to determine if there are distal metastases. This PET/CT scan could help to do a more precise radiotherapy plan.

pubmed.ncbi.nlm.nih.gov/290...

ncbi.nlm.nih.gov/pmc/articl...

pubmed.ncbi.nlm.nih.gov/291...

[Justfor_]

Another strong PSMA PET/CT - before sRT opinion here.

[Rdbeard]

Aloha Webothbeatcancer: while PET scans can be helpful they are not necessarily a see-all and know-all kind of thing. I am in nearly the exact same situation (3 years post radical prostatectomy, rising PSA and scheduled for radiation therapy) but the exact location of the cells causing the rise in PSA is indeterminate. It is hoped they are still within the prostate bed and have not gone wandering. Bone scans are negative, so that is happy. Here is a bit of advice from another source: “ It’s also important to note that PSMA-PET is not the perfect crystal ball; it can’t detect areas of cancer that are really tiny. Hope says that “some patients take a negative PSMA-PET to mean they don’t need any treatment,” and that’s not always correct. “If you have biochemical recurrence (a rising PSA), and PSMA-PET doesn’t show any evidence of disease, the cancer is going to continue to progress. Don’t think you don’t need treatment, particularly if you’re a candidate for salvage radiation therapy.”..........So, off I go to the rad-therapy. We do what we can with the tools and knowledge we have available.

[Webothbeatcancer in reply to Rdbeard]

Thank you for sharing that with me.. thankfully my husbands scans showed no signs of the cancer having moved to his bones or any organs 🙏🏼. And yup... he will be doing the radiation.... he is 57 and just too young to hope it doesn’t metastasize. He gets his first shot of Eligard Thursday and will start rad in a month. I am the researcher in the family, as i like to know as much as i can , always.... and i think he is going to be very unhappy when the side effects of the t suppress kick in.... i just haven’t had the heart to spell it out for him. Who knows , maybe he will be lucky and not feel it to badly. Best of luck with your treatments and hoping that will be the last you have to deal with it .

[farmanerd in reply to Webothbeatcancer]

I had my 59th birthday one week into my adjuvant radiation treatment (IMRT of prostatic fossa only since my PSA was undetectable). I had positive surgical margins after my RARP, that's why I elected to have ART along with 6 months of ADT (Eligard). Exercise can help fight some of the side effects of both ADT and RT. Might be good to have his T level measured before the first injection, so you have an idea of the ballpark that it could recover to after ADT wears off. Has he had his radiation simulation already? I selected the time for my radiation treatments to correspond to when my bowels would naturally leave my rectum empty -- something to consider.

[Webothbeatcancer in reply to farmanerd]

I am going to say he has not had his radiation simulation since I have no Idea what that is !! and am guessing I need to find out !!!

[farmanerd in reply to Webothbeatcancer]

A brief introduction to the treatment:

mayoclinic.org/tests-proced...

Your husband's RO will explain more at the initial meeting.

Along with my wife, I got to learn all about breast cancer treatment when she was diagnosed not quite five years ago -- mastectomy, chemo, radiation, tamoxifen, reconstruction. We both learned about prostate cancer treatment when I was diagnosed two years later.

[Webothbeatcancer in reply to farmanerd]

I hope you are both doing well. My husband was actually diagnosed 2 years after I had been diagnosed with stage 3 colon cancer which required a foot of my colon being removed and 6 months of chemo which we now know more than we ever wanted to about cancer. !

[Hidden in reply to Webothbeatcancer]

🙏

[fluffyfur in reply to Webothbeatcancer]

The PSMA scan mentioned by Rdbeard is not a "normal" PET scan. It is a new scan that was just approved by the FDA and is a more sensitive scan for showing metastasis, so I doubt your husband has had one. You might google it to read more about it. Most normal PET scans are not sensitive enough to show small spreads of prostate cancer. That's where the PSMA scan comes in. It could potentially change his radiation treatment plan --so you might inquire about it with your radiation oncologist. It is only also available in a few places in the US. (assuming you are in the USA).

[Webothbeatcancer in reply to fluffyfur]

I am. We are in NYC and I will definitely be looking into it. Thank you so much.

[MateoBeach]

Radiation to the prostate bed and to the pelvic lymph node field combined with ADT for probably one to two years ( depending on PSA level now), is probably the best treatment possible. However you must make sure there is no cancer evident outside of the pelvis on advanced scans. For then it would be futile and systematic treatment likely the only way to go. Discuss which scans will provide the best possible information but sensitivity also depends on current PSA level. Good luck.

[Webothbeatcancer in reply to MateoBeach]

I feel like I should know what ADT is.... he starts radiation in 4 weeks . Onc wanted him to have his first t suppres hormone shot 4 weeks before.

[MateoBeach in reply to Webothbeatcancer]

Sorry. ADT is androgen deprivation treatment. That is the hormone shot that takes Testosterone to close to zero. We all hate it but is part of the regimens for most of us with advanced prostate cancer. As an adjunct to salvage radiation he won’t be on it permanently, probably 1-2 years.

[Webothbeatcancer in reply to MateoBeach]

Thank you for clarifying. Lots of new terms coming our way. As of now he will be receiving 6 months of T- suppression in the for of eligard.

[JRPnSD]

Having had Robotic RP 8/2019..and after starting at undetectable but rising to .16 PSA a year later...I was told ADT (Degeralix/Firmagon) was best started before reaching .2 PSA. We began that 10/2020 ...and went to undetectable ...and will begin Salvage Radiation later this month due to the delay in getting Covid Vaccination (65+ and stage 4 cancer). So keeping up with fingers crossed and prayers offered. Switching to Orgovyx for ADT in another week. I will keep you posted.

[Webothbeatcancer in reply to JRPnSD]

Good luck !!

[TwilightZone]

Went through the same in fall 2018. Had 40 sessions of radiation over 8 weeks, and getting 45 mgs. Eligard every six months. My next Dr. appt. is in March, have been advised I'll start with Prolia and Xtandi at that appt. Good luck.

[TJGuy]

Hi webothbeatcancer

PSMA scan has been FDA approved at UCSF and UCLA very very recently. Check if your insurance covers it. Also be aware insurance likes to discourage and deny scans like these so you might need to fight for them, I have and won eventually.

In the US these very advanced scans like Axumin, and Choline tend to cost in the $15,000 to $17,000 range.

I would assume PSMA won't be priced less than that, but I'd love to know what those institutions will charge. And any Institution can charge whatever they want.

Many of us on this site have flown to different places around the world for the same PSMA scan that cost only in the hundreds of dollars in other countries.

Some of us flew and paid cash $2700 or so for it as part of a Clinical trial. MSK in NYC was charging $10k for one at the time I needed one so I went to UCLA.

Mayo Clinic offered a free PSMA when you also paid for a Choline scan as part of a clinical triak that compared to two scans.

I think many of us have been through what your beginning and started with ADT two to three months prior to Radiation and continued on it for one, two or more years. The length of time your on it is a decision based on your cancer.

Note I have had Lupron and Eligard and have had a much worse time with my last Eligard injection. My Dr's office said many are having the same response since the shortage of Lupron during Covid 19. There are other drug option as well.

I took one CVS Probiotics pill (dose of 20 billion) each day starting before beginning radiation. This was to protect the cell lining of the intestion. I continued each day throughout radiation. And still do today over a year later. I stopped all antioxidants during radiation.

Your husband will learn more at simulation.

But I would recommend he repeat the same amount of water before each session. Make it the same process everyday, meaning fill two large water bottles, same two bottles every day. Carry them in a backpack, mine had outside pockets for two water bottles.

I started one bottles exactly 45 mins before radiation time. I finished it in 15 mins every time.

Then I sipped 3/4 of the second one over the next half hour.

I went in to radiation every day with the same amount of water in my bladder. This is important.

During my first radiation session I was trying so hard to stay still I was strung like piano wire and twitched throughout my first session. I learned to just relax and don't move.

You don't feel anything except maybe a very very sight warmth in a couple places, and the process leaves you wondering if anything actually happened.

I thought I had done well, I had a few episodes of diarrhea after drinking some beer on the weekends. Near the end, The final week I had a slight burning during urination during.

The side effects get slightly worse as you get to the end of each week and you get better by Monday.

I thought I had done great.

My side effects seem to happen after the end if radiation.

Some loose stools and diarrhea happened a number of times.

Then I noticed a laziness that lasted a better part of the year, a fatigue, not wanting to do things. Having to push yourself to get out there and do things.

Incontinence crept in and I had to perform a couple months of Kegal exercises to get a handle on that. Actually just started doing another month to see if I can improve it more.

My PSA has continued to drop steadily 14 months after completing radiation to below detectable levels of the ultra sensitive PSA test.

Some blood values on the CBC blood test have gone somewhat abnormal but my doctors aren't concerned.

The fatigue has gone away.

I complete two years of ADT in July.

What happens from here, we will see?

[j-o-h-n]

Greetings wbbc,Here I go again....

Radiation - I've posted this before so to those people who have already seen this please forgive me.

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 at MSKcc. in NYC. 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 SPACEOAR HYDROGEL to be inserted for protection of parts of your body. Make sure you ask your R.O. about the spaceoar and make sure you ask here on this forum before getting fried.

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 02/03/2020 10:50 PM EST