Just Finished Radiation Therapy

[Rhodey007]

I was diagnosed in May 2020 at age 45 . My initial Gleason score from the biopsy was ( 3+3=6 )I had a RP and the pathology was revised to 3+4=7 ( after pathology ). I had 30 Lymph-nodes removed and all were negative .i however had one positive margin .I had a BCR at 0.21 ng/ ml 8 weeks after surgery . I quickly had a PSMA -PET scan that was negative head to toe . I then went on 6 months ADT and 8 weeks of Radiation. Before starting radiation my PSA was undetectable . I just finished 8 weeks of radiation and now just waiting for follow up labs after 3 months to see where the PSA will be . My Team seems to think the BCR is coming from the prostate bed where the positive margin was . Any feed back will be greatly appreciated

[humptedumpte]

Why were so many lymph nodes removed? Did they know at time of surgery that the margin was positive?

How large was the tumor?

Size of gland?

What was pre op PSA?

[Rhodey007 in reply to humptedumpte]

I am having my treatment at MSK .. MSK protocol for prostatectomy they say is to remove 30 LN . My PSA at the time of diagnosis was 23. The gland was 49 cc. I am not sure if the surgeon knew at the time of surgery that the margin was positive . My assumption is that they found that it was a positive margin after the pathology . The 30 negative LN is also in line with the Negative PSMA PET scan .

[Hidden in reply to humptedumpte]

A happy comment on your humptedumpte moniker . When APC was chomping me down and my body was failing in treatments I thought of myself as humptedumpte. And all of t he kings horses and all of the kings men couldn’t put me together again . Somehow through the grace of god I’m still here .. take care Humptedumpte 😎

[Hidden]

You could not have possibly done more. Time will tell.

[Rhodey007 in reply to Hidden]

Thank you for the kind words! Yes time will tell ! It’s nerve racking but I am trying to stay positive . The PSMA scan is a game changer though because the doctors are not treating blindly anymore .

[MrkP]

I had RP in early 2019 at age 48. I did a trial which involved Lupron, Abiraterone and Apalutimide for 6 months prior to surgery. My PSA stayed at around .03 up until July 2020 where it hit .05 and slowly moved up to .1 in February. I’m now on ADT and starting radiation on April 13th. My PSA is undetectable now. I kept asking about a PSMA scan but the doctor kept saying my PSA was too low. It’s good to hear that your scan at .21 confirms what they said. How was the radiation treatment? How did you feel day to day and did you have any bad side effects? Any recommendations for what to do? Thanks.

[treedown in reply to MrkP]

Everybody is different. I was 56 and I stayed active during ( rode by bike to 41of the 44 treatments) and had no side effects until the last day, a small amt of blood on my stool. Lasted 1 more day. I am a year past the end and still doing well. Also I remain very active.

[Rhodey007 in reply to MrkP]

Hi Mrkp

I did 40 treatments of RT. ( 8 weeks )

I tolerated RT very well through the 8 week . I even worked through it all. The radiation side effects hit me after I finished the course . Fatigue was the biggest side effect for me . I am curious why your team decided to wait on Radiation until now ? Different protocol ? Did you have a PSMA scan ?

Are you getting LN radiation treatment too ?

[MrkP in reply to Rhodey007]

I thought .2 was usually the threshold for starting radiation and that my team was being aggressive starting at .1. I’m getting 38 treatments, and they are hitting the lymph nodes, bladder neck and prostate bed.

[MrkP in reply to Rhodey007]

I didn’t get a PSMA scan because they said my PSA was too low.

[Rhodey007 in reply to MrkP]

Where will you be doing RT?

[MrkP in reply to Rhodey007]

Brigham and Women’s inBoston.

[Rhodey007 in reply to MrkP]

That’s a great place to have your treatment .I ready that study ! Fingers crossed !

[middlejoel]

Did you consider SBRT or Brachytherapy?

[Rhodey007 in reply to middlejoel]

No I did not consider either . I suppose RP was their initial suggestion . I believe they did this because of my age

[ron_bucher in reply to Rhodey007]

Good decision in my opinion.

[Rhodey007 in reply to ron_bucher]

Thanks Ron !

[Hidden]

Welcome Rhodey007.... you’re fighting for your life.. push the pc away . Then get back to what you love. I started this at 53 and now I’m 60..I didn’t have surgery .T -4 meant my pelvis was full of pc tumors. Gleason 4+4 =8 . I did 8 weeks imrt plus two adt drugs.I went and have stayed in a clear status for over five years now. I did an orchiectomy 2017 allowing me to drop the Lupron shots. I’m still here weakened and limited but still kicking . Love life . Stay strong 007!

[Rhodey007 in reply to Hidden]

Hi Lulu,Thanks gif Sharing your journey . The lupron is making me have hot flashes . The hot flashes are uncomfortable but given what we are faced with I think tolerating them is not an option . So the orchiectomy helped with the hot flashes ? Could you then be on ADT permanently ?

[dougnola in reply to Rhodey007]

Hey Rodney. I’m having this feeling I’m at a virtual coffee with you and Lulu since he and I have talked about this issue. I was diagnosed at 50 (12/16) with psa of 498 and Gleason 9. Once I finished chemo and radiation, I’ve been on Zytiga, eligard and prednisone since July 2017 at ND. I haven’t ruled out doing the orchiectomy as Lulu did but I can say that, for me anyway, the hot flashes and other irritating things went away after a year. I have a few night sweats every time I get a fresh injection it seems but it’s otherwise negligible. So I think it may be a personal preference. Just letting you know the hot flashes might go away for you. Stay strong as Lulu says! ✌️ DougNOLA

[Rhodey007 in reply to dougnola]

Thanks Doug for your comments ! Did you do radiation ? Did you have RP?

[dougnola in reply to Rhodey007]

I didn’t have an RP since it had already spread all through my bones...they’d have had to remove my legs, spine and skull, too (gotta find humor in all this!). As for radiation, yes, two places in my spine and one in my neck...that’s where my largest tumors were that were imminently threatening my nerves and spinal integrity. So grateful I didn’t get paralysis because of this. 🙏🏻

[Hidden in reply to dougnola]

You are amazing to survive what you had. 🥳🥳👏🏼👏🏼👏🏼👏🏼

[Hidden in reply to dougnola]

We will break bread again my friend. 🙏🕊🕊🕊❤️

[Hidden in reply to Rhodey007]

Lupron kicked my ass for 18 months. The orchiectomy side effects are similar to adt . No T is the culprit. .However, I do feel that they are lessened . But I’m still on a pill form adt stopping the adrenal production. Simply eating a few handfuls of edamame helps hot flashes. I get night sweats. Temps are up this week. Much more noticeable in the summer. I’m on this tak-700 adt test drug. My mo can’t tell me to stop it. The fear is, the return of the beast. Guys think that APC is a death sentence. For the very many unfortunate it can be. Many others survive for years. Even decades. Not without suffering and depletion .. We need a strong reason to endure .. although I’ve had no visible signs of pc for five years I know that it’s not done with me. We carry this to the end. The heart gets many of us .Eat healthy , exercise and cling to what you love in this world. Advocate for yourself. This world needs you around.✌️😎

[Tall_Allen]

I hope it was successful. It will take a while for ADT to wear off and PSA to become useful to you.

[Rhodey007 in reply to Tall_Allen]

Thank you so much TA

[Cooolone]

MSKCC is one of the places to be... They will be agressive, but still follow some standard protocols. So with the recurrence and positive margins, I believe they will take the nodes as a preventative, regardless if there is any positive results on scans. Following RP, RT (40 sessions) along with 6 months of ADT closely follows the SPPORT RTOG0534 Trial that results had shown very favorable results with this method. So much so, they did release the data early before the end of the study knowing the data wouldn't improve much.

This was my path as well... For me, I had persistent PSA even after the second line of therapy. So TA is correct, you'll follow the treatment plan, then need to be off the ADT for a while (usually as long as you were on it) in order to see if it was effective.

Again, the results from that treatment modality has been very favorable, so look it up and check it out.

Best Regards

[Rhodey007 in reply to Cooolone]

Thank you Cooolone ... That was very encouraging news ! I appreciate everything. Fingers crossed

[Rhodey007 in reply to Cooolone]

Hi Cooolone ... so yiu had RP, had a BCR, did a PSMA scan, it was negative and you did RT to the Pelvis ( prostate bed ) and Lymph Node RT? What’s your PSA now and how long has it been since RT ?

[Rhodey007 in reply to Cooolone]

Thank you so much ! I just read your profile a few times to understand ! So I assume yiu have Castrate resistant Pca.1. Question is before starting RT , did your PSA respond to the ADT ? (Sorry if I missed that part )

2.Do you think the PSMA pET did not help at all in your case ? Or am I interpreting this wrong ?

[Cooolone in reply to Rhodey007]

I'm not castrate resistant, I'm actually still hormone sensitive (mHSPC) as opposed to (mCRPC).

I seem to have skipped a few steps to metastatic disease that the typical patient experiences. This is called agressive PCa...

So to answer your question, my PCa is respondent to ADT, then and now. But it has spread regardless. Now there's no way to know if that cancer was already spread on a micro cellular level prior to having the RP. I did a CTC test then, and also DNA profiling which did not show or indicate anything out of the ordinary at the time.

I may be PSMA naive in my wonderful situation, as my last scans didn't not really light up the areas where the lesions were found as they should have. Some avidity was noted, but I would've figured something like a Christmas tree would have been appropriate, lol. It wasn't so... Inflammation was seen and noted and I possibly benefitted that the reviewer was a doctor who was familiar with Ovarian cancer and noted the inflammation near my appendix and one lymph node there. The node was negative by the way...

As to the sensitive scans, I believe the PSMA is certainly beneficial to most all patients. But there are some 29+ different cell types, and now a few hundred genetic markers associated with PCa. So what may work best in any given situation is completely subjective to that Individual's diagnosis.

The three main contrasting agents for sensitive scanning can be beneficial when applied in the best timely manner, and appropriate setting. Do I use the Axium scan next? Or maybe the 18F-DCFPyL scan? Each uses a different contrast agent to varying efficacy for what it attaches to. Who knows... I might ask that all 3 be done if my PSA comes back!

I've done my homework and research and have discussed each step intently with my care team. I've agreed with each step as it has happened and prior to those tests or treatments have discussed many alternatives and explored what might be most appropriate, given my personal situation. Once my Stg.IV was diagnosed last year, all that occured before really becomes moot point for the most part.

I recommend the SSPORT trial modality as it was and is a combined therapy treatment that I think offers patients a good chance at a cure who've had RP and then subsequent recurrence. Some doctor's today as still behind the times and would not offer a combined methodology. So it's important to get that information out there.

Every patient is different... My Cancer isn't Your Cancer! And it's important to understand this...

[Hailwood in reply to Cooolone]

My PMSA scan is with the the 18F-DCFpyL and I’ll post here any results. It’s a 200 person BC wide study and I am meeting the RO one week after to review results. So perhaps it will show up as a “Christmas tree” or hopefully as one tiny little dim bulb!

[ron_bucher]

I had my RP at age 54 in 2006 with Gleason 4+3. Several follow in treatments later, my PSA is undetectable. I think you are wise to use every tool in the toolkit to keep it in remission every step of the journey.

[Rhodey007 in reply to ron_bucher]

Hi Ron,ThGs fantastic that your PSA has remained undetectable this long . Do you mind me asking what another treatments you had after RP?

[ron_bucher in reply to Rhodey007]

I had IMRT salvage radiation of the prostate bed about 18 months after RP. That gave me 7.5 years of undetectable PSA. Then I had chemotherapy plus IMRT of more lymph nodes plus 9 months of Lupron. Now 4 years into remission again.

[Hailwood]

We are very similar. I’m 65 years old. RP in November 2020 with a Gleason of 8 with all biopsy specimens positive right up to the margins and 6 lymph glands removed with one positive. Also showed positive margins post RP. 6 weeks post surgery PSA was 8.9 and most recent was 3.7. I am scheduled for a PMSA PET scan on April 15th and then likely radiation and ADT/Lupron. You seem to be a little ahead of me on the timescale of treatments. I’m well right now and look forward to hearing how you are doing. I’m trying to stay positive and continue to work full time. I think this site has been so valuable for the honest opinions of people who have done all of this before as well as helping those who are about to start the journey.

[Rhodey007 in reply to Hailwood]

Hello Hailwood,

Yes i am a few steps ahead of you . I pray that the PSMA scan is clean . Yes let’s stay the course . RT was not bad at all . I worked full time and had treatment too .You will do great ! The ADT is different with everyone . I have hot-flashes as my worst side effect but I just deal with it . Fingers crossed on the PSMA scan

[Hidden]

I wish you clean reports ahead. I did the 8 wks RT also. I hope that it works for you like it did for me . I was 53 upon dx now I’m near 60. It hits me hard to see such young fellows as yourself caught in the same trap. You’ve gone through much . Now time to recover from it all and heal up . Good job !

[Rhodey007 in reply to Hidden]

Thank you Lulu... that means so much

[Hidden in reply to Rhodey007]

Hang in there dude. We are all hanging in for the long haul.. winning the first rounds are the most important. I had mucho self loathing in the beginning transition losing t. Don’t hate yourself . Practicing daily happiness is a must . You’re young enough to see a cure come forth.

[MateoBeach]

Good luck in your follow up. Sounds like excellent care plan.

[Gary64]

I think you have it licked. April 9 will be my 18th anniversary following diagnosis . My story is a bit like yours and I tell it to you to give you confidence since I know how scary it is. I was diagnosed at age 51 with a PSA of 32 (my first PSA test). Surgery with a small margin, Gleason 3+4, with my initial follow up PSA of <0.01. Couple years later it started to very slowly move back up and I met Dr. Stephen Strum who became my coach and, might I add, my hero throughout the journey. I went to the Netherlands where Dr. Jelle Barentsz performed the Combidex MRI diagnostic. Completely negative so I decided to do radiation and androgen ablation under the guidance of Dr. Strum. I was on the Board of Directors of Tomotherapy at the time so I had state of the art radiation. In fact we had one of the company's board meetings at the hospital where my fellow board members watched the session. My PSA dropped to <0.01 during that treatment and afterward it remained at that level for about 8 years. Then it crept up just a tiny amount and I decided enough was enough. I was going to live my life, however long that would be, to the fullest. Now, several years later, I'm delighted to say that my PSA is <0.01. So as I said when I began, I think you have it licked but keep us informed.