Starting a hopeful course of RT

[npaulson1]

I'm about to embark on a 44-session radiation treatment which my RO calls "out of the box."

Diagnosed in summer of '17 with gleason 8, I immediately started ADT with 6-month Lupron and daily 500 mgs Zytiga (half-strength due to liver stress). PSA has been undetectable for well over a year.

The key to the unusual timing of the RT seems to be my low burden -- one bone met on the pubis and one funky lymph node. Citations include HORRAD trial and our old friend, STAMPEDE; the latter notes, "In a prespecified subgroup analysis, overall survival was improved with RT in the men with a low metastatic burden at diagnosis." Low is defined as fewer that four mets.

When I moved from Denver to Minneapolis in the spring, my Denver MO (a Kaiser doc named Hermosillo) suggested in my farewell visit that I consider this treatment when I landed in Minnesota. My Minnesota MO, Dr. Wilkowske (head of oncology at Methodist Hospital) thought that was worth a shot and assigned me to a RO named Dr. Suppiah, who is taking to the challenge with enthusiasm. He plans to shoot the bone met too, since it was in the target zone.

Recent scans showed that both the bone met and the funky node had shrunk considerably after two years of ADT. Suppiah has high hopes and talked about an ADT vacation down the road.

Kind of nice to have a new infusion of hope after two years of feeling like you're in a gunsight. I'll put up with the threat of radiation damage for more time.

The preparations include belly tattoos to allow the techs to hit the right spot every day. I asked for a fouled anchor and a Chinese character that translates as "stupid," but they insisted on three tiny dots.

Is anybody else doing this course of treatment?

[Tall_Allen]

You seem to be a good candidate for debulking, but why 44 treatments? ASTRO has strongly endorsed hypofractionation in 20 or 28 treatments, or if you have brachy boost therapy, the external beam part is only 25 treatments.

pcnrv.blogspot.com/2018/10/...

[Goodwife in reply to Tall_Allen]

Tall_Allen, thank you for the information. My husband , who was diagnosed approx 3 months ago, Gleason scores of 8 and 9 two cancerous areas out of the 12 biopsies. No Mets. Cancer appears to be confined to the prostate. After discussion , my husband refused the “ chemical castration” recommended in conjunction with the radiation. The Urologist agreed with him and said he himself will take that same approach. The RO has him scheduled for approx 40 treatments, which he just started. I was concerned that in the information it stated that the RO may be reluctant to decrease the numbers as they are paid per treatment. I certainly don’t want to assume that is the rationale here What could he tell me that justifies continuing the longer course of treatment ?How can i have an intelligent discussion with the RO about the his proposed 40 tx vs the 20 or 28 recommended in the article. I don’t want to offend or develop an antagonistic rapport with the person who will be treating my husband for at least the near future. Thank you for any suggestions.

[Goodwife in reply to Goodwife]

Also, what is “ debulking”?

[Tall_Allen in reply to Goodwife]

Your husband and the OP are in different situations. The OP has metastases. So "debulking" is treating the prostate after distant metastases have been discovered in the hope of slowing progression.

The way I handle reliable info that seems to conflict with what a doctor is telling me is this: I email a link to a reliable peer-reviewed publication (not a random internet source like me). I attach a short note: "I would like to discuss this with you at our next meeting." I never throw stuff at them during a meeting and expect them to absorb it. Treat him the way you would want to be treated; i.e., with respect.

(1) In your case, you would email him this:

ascopubs.org/doi/10.1200/JC...

(2) You should have your husband read this:

thelancet.com/journals/lano...

As you can see, adjuvant ADT improves the effectiveness of external beam radiation markedly. It was a mistake, imho, asking the urologist what he would do. - What does he know about it? He's a urologist, not an RO. I'm sure his ignorance of a specialty completely outside his field doesn't stop him from having an opinion - but what is his opinion worth?

(3) With a Gleason 9, the most curative therapy is brachy boost therapy. That means 25 external beam treatments to the whole pelvic area followed by a brachytherapy treatment just to the prostate. In a definitive randomized trial (ASCENDE-RT), 9-year PSA recurrence-free survival for high-risk men was 83% if they got brachy boost therapy vs only 62% if they had external beam only:

pcnrv.blogspot.com/2017/03/...

You have to talk to an specialist in brachytherapy to get this. The external beam part of the therapy can be done by your current RO.

[Goodwife in reply to Tall_Allen]

Thank you for your reply. My husband is, quite literally, thinking with his penis. He is absolutely terrified and every other adjective you can think of to lose sexual function. I’ve talked for several conversations about intimacy expressed in different ways etc He is terrified. And resolute in his decision. I believe I could sway him. I do think if I had a hissyfit and carried on etc he would do the hormone deprivation treatment. I would hope we could get through what might follow psychologically Would he blame me for the loss of function? How can he know now how he would feel then ? I will follow your instructions re discussing the information. That is exactly what i was seeking; a respectful way to introduce a question based in some new-to-me knowledge. Is it too late to do the hormone depravation ? He’s had two treatments. I appreciate you giving me the rates of survival. I don’t feel this was accurately represented in either physicians visit. Thank you again

[Tall_Allen in reply to Goodwife]

I wonder if your husband understands the difference between libido and erectile dysfunction. ADT diminishes libido - it's not impossible, just less likely to "have the urge." Even while taking ADT and without libido, he will still be able to get an erection by injecting trimix.

It is the treatment itself (surgery or radiation - not ADT) that causes erectile dysfunction. Surgery, because the neurovascular bundles feeding the penis are disconnected. Radiation, because of scar tissue in the blood vessels feeding the penis. The only way I know of to reduce the scarring from radiation is vigorous exercise (including penile exercise). Younger men tend to have less stenosis of the blood vessels from radiation. ADT may indirectly contribute because less penile utilization causes atrophy. I know men who use a penis pump daily while on ADT in order to maintain blood flow. Radiation has much better erectile function preservation than surgery. One kind of brachytherapy, high dose rate brachytherapy, may have better erectile function preservation than low dose rate brachytherapy (seeds).

It may be challenging to find a specialist in high dose rate brachytherapy - where do you live?

[Goodwife in reply to Tall_Allen]

We live in St. Louis MO. The urologist told us that my husband should be sure to have an erection for 5 minutes per day He offered a pump of some kind, which we declined as it is still manageable now but we probably need to get one based on your exercise recommendation. He also prescribed viagra which using a quarter of a tablet yields good results He is 57 years old. Thank you for the explanation. The RO did not offer brachytherapy as an option, nor did he talk about the pump etc. My husband listened to my plea last night and read the article you provided. He reminded me that the RO didn’t object to our request to only do the radiation, and he knew my husband’s chief concern was maintaining sexual function so I’m a bit confused that he wouldn’t have made the same argument or provided the same statistics that you did My husband is already experiencing the urgent GI issues and some form of generalized pain. His father, who is 93, had prostate cancer 18 years ago and was treated with only radiation so I think that is where my husband is getting that idea. But your information that it is the radiation that causes scar tissue disproves his hopes. I need him to live longer than the statistic of 9 years post treatment. I will continue to discuss. Barnes Hospital is our big Hospital here, but it is so huge, difficult to park and navigate into the hospital and generally feels like you are a number or important only to the dr using you in his clinical trial. I’m all for teaching hospitals. I worked as an RN at Barnes for many years and saw some great, exciting things happen there. But I feel that they have lost site of patient centered care at Siteman, their cancer treatment center. Most patients and families say they feel as though they were important to be used in clinical trials but not as human beings seeking a cure or simply more time on earth That was certainly our perception when my dad was treated there for cholangiocarcinoma Thank you for your input. I will look to see brachytherapy options near us

[Tall_Allen in reply to Goodwife]

It is always a mistake to ask a specialist in one therapy (e.g., IMRT) about another therapy (e.g., brachytherapy). As I said earlier, you have to talk to a brachytherapy specialist about this. Doctors only recommend what they know - it is up to you to do the work. There is probably one at Barnes Jewish/Siteman. I only know of Michalski there, but I don't know if he is an expert at any kind of brachytherapy. I recommend you travel to Detroit for a consultation with Alvaro Martinez about HDR brachytherapy.

I also want to emphasize that I was recommending full body exercise, and not just a penis pump.

I have no idea how you came up with 9 years.

[Dostoevsky in reply to Tall_Allen]

Solid. Words ... the talking cure helps the head clear up, and our reading/writing skills help us both ways. Peace of mind is the key here and it seems to be born of that attitude ... you know, gratitude. Thanks TA ... I’m three years into treatment and your expertise is a comfort.

[Tall_Allen in reply to Tall_Allen]

I thought about the "9 years" and realized that I created a misunderstanding. The term "9-year PSA recurrence-free survival" just means that they tracked the men in the clinical trial, and in the 9 years of follow-up, 17% of the men had rising PSA as high as 2.0 over their lowest PSA. In some of them, the cancer was not cured (called a "clinical recurrence") but none (or very few) died of prostate cancer (although a few may have died from some other cause). I apologize for alarming you - I get used to the medical terminology and sometimes forget to explain.

[Goodwife in reply to Tall_Allen]

Thank you for clarifying. I feel overwhelmed with information and emotions and feeling that as a nurse I should have a better grasp on this. Thank you for your help

[Canoehead]

I had 42 treatments, 28 on whole pelvic region and another 14 on prostate only. My insurance, BCBS, denied payment (not medically necessary), but my treating hospital has handled that fight for me. Most annoying long term side effect has been more frequent - and urgent - bowel movements

I’m on ADT vacation now. Beast of luck with this.

[EdBar]

I had my prostate and several nodes debulked using IMRT after a G9, dx with mets throughout my skeleton and several pelvic nodes. So I was high volume.

5 years later my PSA is undetectable. It was “outside the box” for some of my docs, others thought it was a smart move. SE’s were pretty mild, I remember the RO had me take an excessive amount of a cranberry supplement that helped with the urinary SE’s.

Ed

[RonnyBaby]

I had RT (81 Gy over 9 weeks) to the prostate and (lesser amn't) pelvic region.

I was 'node positive' G9 with PSA @ 300+.

My RT was finished in Feb of 2018.

What I'd like to add to the topic is as follows'

Fatigue was surprising to me. It took months to overcome it

I totally underestimated the fatigue factor.

I was fortunate, in terms of relatively few side effects (others).

Today, I am on an ADT holiday and I'm feeling much better.

My PSA is at 0.06 and slowly rising (within normal parameters) while my 'T' is slowly climbing into the low 'normal range' of 8.0.

While your case is slightly more advanced than mine, there is still room to be optimistic.

I wish you well in your journey ...,.

[npaulson1]

Thanks for the comments. And Tall Allen, I'll wave the short-course recommendation at my RO, but I'm wondering if he's just a belt-and-suspenders kind of guy.

[npaulson1 in reply to npaulson1]

Come to think about it, the RO's opting for 44 treatments may be a function of the patient's (me) obesity: I trip the scales at 300 pounds. I'll ask.

[j-o-h-n]

Ask them to place a dash following the 3 dots. Morse code for the letter "V" for Victory.

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 08/09/2019 5:27 PM DST

[monte1111]

Friend/relative is going to start radiation treatment for esophagus/stomach cancer. They had great difficulty with the tattoo dots because he had so many tattoos already. That is what I call morbid humor. His prognosis is good. (Do not look at iphone pictures of other people's cancer. There is absolutely nothing there that will make you sleep better at night.)