Questions for First Visit to Radiation Oncologist

[dans_journey]

Okay guys, I'm asking for your insights....

I was diagnosed in November 2010 and had a radical prostatectomy in January 2011 (3+4, pT2c N0 M0, negative margins, no extra capsular extension, no seminal vesicle involvement). My post-surgery PSA remained undetectable for 54 months and then came in at 0.05 ng/ml in September 2015. Last month it came in at 0.11 ng/ml.

Next week, I have my first appointment with a radiation oncologist to open the discussion and learn about salvage radiation therapy.

I'm compiling my list of questions for the radiation oncologist and I'm wondering, for those of you who have been on a similar path, what are the one or two questions that you thought, "Oh, crap! I should have asked that," but didn't in your first visit discussing salvage radiation therapy.

Thanks in advance!

—Dan

[spinosa]

How many sRT have you done? What equipment is used? Will "seeds" be implanted? What is the likelihood of success in my particular case? How pronounced and extended are the side-effects? How long have you worked with your medical physicist and dosimetrist? DO you have a "team," or will I see a rotation of personnel?

[dans_journey in reply to spinosa]

Thanks! All great questions to be added to the list.

[Mathes72 in reply to dans_journey]

I had rad. After my psa went up 30 months after prostate removed.had 37 treatments,plus lupron, waited 6 months spa 1.8 I went crazy,I went to md Anderson in Houston three visits(I live in nc) tested me to death,to.ld me nothing new,,came home had 6 chemo 3 provenge,on zitiga,lupron,xgeva,make sure they have the must up to date equip. The treatment last about 5 minutes,remember they are shooting in the dark,get a ct an BONE scan first to see if the cancer mesh. Good luck

[pinejog in reply to Mathes72]

I had scans We’dnesday waiting for results

Currently on Xtandi and Lupron

PSA is riseing quickly

Can you explain what you mean when you say “to see if the cancer mesh” Thanks Dennis

[Mathes72 in reply to pinejog]

To see if the cancer has metastasized to the bone or else where,for give my spelling I grad college in the 60s,if they do not see any cancer they have no place to radiate,i had 37 treatments an there was nothing there,it was up in my sternum

[pinejog in reply to Mathes72]

Thanks my friend I appreciate your help

[Mathes72 in reply to pinejog]

Your welcome,that is what is great about this web sight,we know more about our problem because we live it, keep hanging in

[Hidden in reply to Mathes72]

That’s crazy.

[dans_journey]

I agree, as did my urologist, about the slowness of the PSA increases and no need to rush into anything right now. We just want to open the discussion and get educated about my options.

At the moment, it's going to have to be a very compelling argument that will convince me to move forward with SRT. A study by Freedland shows that with my doubling time, my pathology, and the fact it took five years for my PSA to return, I have a 94% chance of still being around 15 years from now without doing anything other than monitoring.

[Tall_Allen]

Here's my question list for this situation:

pcnrv.blogspot.com/2017/12/...

I always go in with questions in writing, and write down the answers as I hear them. Most of the questions should be covered in his briefing. Bring someone with you if you can - you will miss a lot.

Your chances for a cure go down markedly as your PSA goes up. Men who waited until after the PSA had risen over 0.2 had twice the rate of biochemical recurrence compared to those treated earlier. Hormone therapy alone is not curative.

pcnrv.blogspot.com/2016/09/...

[dans_journey in reply to Tall_Allen]

Thanks, Allen. That's a fantastic list that you shared. We had spoken previously and you shared the second link with me already, but thanks for the reminder.

[whatsinaname in reply to Tall_Allen]

Superb links, Tall_Allen, thank you very much. Cheers !!

[Hidden in reply to Tall_Allen]

I bow down To you Tall_ Allen .. you are “the” source of helpful info and insight. Thanks

[bitittle]

Dan you may want to visit my previous posts and think about some questions. I have had a similar path. My cancer albeit more aggressive based on pathology after prostatectomy. I concur with Tal Allen on results of radiation prior to a PSA of 0.2. SRT w/o ADT pushed me back into remission with a low undetectable PSA of 0.025. Good luck with your decisions. Many people forget to ask about diet during and following radiation.

[dans_journey in reply to bitittle]

Thanks. Talking with the urologist, he was not in favor of ADT in conjunction with the SRT given my stats, and I'm okay with that. We'll see what the radiation oncologist says.

[bitittle in reply to dans_journey]

Its really a personal decision and evaluation of each person’s situation at the time. I chose no ADT in my situation and frankly am glad I chose the direction I chose. Good luck with your decision and wish the best outcome for you!

[dans_journey in reply to bitittle]

Couldn't agree more! And all the best to you, too. BTW, if you don't mind my asking... Any long-term side effects from SRT that impact your daily quality of life?

[bitittle in reply to dans_journey]

It took a couple months for digestion and bowel movements to return to normal. I am plant based and eat alot of fiber...so it caused some distress. All good after a couple of months. I highly recommend probiotics if you choose SRT. It helped me tremendously. Exercise through entire duration of SRT procedure helped me considerably with fighting fatigue. Long term I had no long term effects. Urinary continence the same as prior SRT and erections no different than prior SRT. Today I am 2 years out and glad I made the decision with no regrets. Good luck!

[Hidden in reply to bitittle]

Sound advice indeed..

[Grumpyswife]

When my husband had his radiation there were conflicting opinions from the ROs about the brachy boost and we went without it. Have regretted that decision as it was a window of opportunity that eventually closed and when we decided to get it later it was not curative.

Dr. Gordon Grado in Scottsdale did the brachytherapy eventually and was the one who suggested doing it right after the SBRT. He has an excellent reputation and is a caring person.

[j-o-h-n]

As usual TallunderscoreAllen hit the nail on the head with a list of questions but only one more to add: "DO I HAVE TO BUY DONUTS FOR THE TECHNICIANS?"

Good Luck and Good Health.

j-o-h-n Sunday 05/13/2018 1:23 PM EDT

[dans_journey in reply to j-o-h-n]

Thanks, j-o-h-n! And I think the answer to that question will be, "Of course!"

[Hidden in reply to j-o-h-n]

A small price to pay.🍩

[dans_journey]

Thanks for your reply, Rust and sorry to hear about your own journey.

Yeah, this really is a conundrum—zap the prostate bed with a low PSA without certainty that the cancer is there, increasing the chance of success but risking life-long side effects if it's not, or wait until the PSA increases enough for it to become detectable on the newer PET scans. Roll the dice. Throw the dart. Make the best decision for ourselves with the information available at that moment and hope for the best.

[WayneSC]

I would have a plan in case you suddenly are unable to urinate. Five per cent of patients have this happen due to inflammation and it is a scary situation. I had this occur twice in one week and there was no warning.

My preference would be to have my appointment at the same time each day.

Like another responder, getting involved wit a regular gym routine iscrucial to combat fatigue.

[Neathuh1]

Hi Dan. I had the salvage radiation five years ago and am fairly sure I wouldn't do it again if I had it to do over. Have had side effects plus they didn't get the cancer. I now have learned that they frequently don't hit the target but we patients are scared and are willing to try almost anything. It's a decision that needs (in my opinion) prayerful consideration. You, like all of us, will make the decision that you and yours decide is the best for you based on all the information at your disposal. Once you make that decision, go forward with confidence. Time will tell if it was the right one.

BTW, if you have not done so yet, I would suggest that you get an appointment at MD Anderson or one of the other premier cancer treatment centers to learn what they have to say before doing anything else.

Best of luck to you.

[Hidden]

I agree. There is much hope ..