Update on Radiation Onocologist second opinion. Confused?

[gamemaster34]

I visited a radiation Onocologist at MD Anderson in Tuscaloosa Al. He had a different opinion that my current Onocologist. I had surgery on March 19, 2019. Lymph node positive and seminal vessel positive. One week after surgery I had one shot of firmagon and last week one shot of Lupron. Current Onocologist wants me on Zitega if she can get it approved and would like for me to start radiation three months after surgery. The Onocologist at MD Anderson wants to add Casodex and not start radiation for 5 to 6 months after surgery. He said he would not give me zitega unless my psa went up. He also said my radiation would last 8 weeks for 8-10 min. Current doctor said 8 weeks for 2 min. Any suggestions or advice.

[Tall_Allen]

The time after surgery is to allow for complete healing. The amount of time each treatment takes is a function of the machine they use. Zytiga before radiation is experimental.

[Hidden]

Each different ? Maybe a third opinion if possible ,it is your life ? If both said 8 weeks RT , that’s what I had and it has worked well for me so far ..You might wait with other dudes like I did for about twenty minutes , then you lay in the easy bake oven ,maybe in the room ten minutes but under the beam I was told for less than two minutes . Powerful and hopefully effective for you too. This is what drives me nuts ,drs don’t even agree . Fight for what you think you want . Maybe both are right , so you have an option . Beyond my lay grade .. Good Luck ...

[cujoe]

Gamemaster, My 8 weeks of IMRT went same as Lulu described. I counted off seconds several times and about 2 minutes ON time is about right. (However, I think my cancer center used the Original Betty Crocker Easy Bake Oven, but I could be mistaken.) While not the case for everyone, I never had any discernible side effects over the 8 weeks of RT or in the almost 5 years since.

I also had non-organ confined, excap invol, & rt side SV invol - but no lymph nodes. AUA/ASCO guidelines at that time suggested possible benefit from RT for any of those negative pathology findings, so I pushed for start of RT ASAP and started mine at 3 months. TA is on target about healing and unless it has changed the recommended period before starting RT after surgery is still about 6 months. That is mostly to allow incontinence (and maybe ED) to improve since it will likely NOT improve after RT. Even with diligent kegel exercises and later PT, my incontinence never much improved after surgery, but I believe that to be mostly the result of a tear in my urethra during the RALP surgery. Two years ago I had the AUS800 artificial urinary sphincter implant and that has provided a great solution and immediate QOL improvement. (I wouldn't, however, suggest starting out with that being part of your treatment game plan, but just know that it is there if you need it.)

So, in your case, if you are satisfied with the level of continence and ED you have regained at 3 months, then earlier RT COULD be better. If not, then you take the same risks I did by doing RT "early". Also the fact you are on already on meds to suppress the cancer is likely a factor in timing that I am completely unacquainted with. Others here can probably provide some guidance on that. BTW, I recovered 90+/-% of my erectile function about a year after surgery and have maintained it for these past 5 years. At 71 years old, I'm a very lucky old(er) guy.

Good luck whatever you decide to do! Be Well - cujoe

[GP24]

I would agree with your oncologist at MD Anderson. It does not matter for how long you are radiated, most of the time you spend is to drive to the hospital, wait until it is your turn in the hospital and drive back. (Plus going to the gym to exercise against fatigue)

[j-o-h-n]

Is it possible for you to get a third (tie breaker) opinion? At a reputable cancer center recommended by someone here. Where are you located? Post this info together with your same question on a new future post for answers. My humble opinion would be MD Anderson.

This is from one of my old Posts:

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

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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. 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 "A PADDLE" to be inserted for protection of parts of your body. Make sure you ask your R.O. about the paddle and make sure you ask here on this forum before getting fried

.

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 05/01/2019 9:53 AM DST

[gamemaster34 in reply to j-o-h-n]

Birmingham Al. Area

[j-o-h-n in reply to gamemaster34]

If you're looking for a third opinion then post that (in a future post - not today and here) and ask us if we can recommend any MO in the Birmingham Al. area.

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 05/01/2019 6:29 PM DST

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

Hey, j-o-h-n, Are you sure you have not confused your wife's paddle with the one used by radiologists?? Us canines sometimes wonder about such things. I also had a trip to the ER for a kidney stone about a month after completing my 8 weeks, but in my case it was due to me reducing fluids to help with the incontinence. One time around the ER block with the kidney stone pain and I've been drinking LOTS of fluids ever since. I usually keep a bottle of lemon water on call 24/7. Keep dem ureters open wide & Be Well - cujoe

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

She uses a shillelagh.

Ah kidney stones, my favorite subject. You are now a certified member.

Had 3 on my right side and 4 on my left side. PAIN PAIN AND MORE PAIN. WATER WATER WATER. Believe me, sometimes you can pass a stone by jumping up and down to dislodge it. Some say riding a horse helps dislodge it sometimes. Unfortunately we only raise buffaloes on our Ranch in New York City. Yep keep that pee flowing... Be well too.

p.s. Got me a tee shirt that says "Wanna see my kidney stones?"

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 05/01/2019 7:51 PM DST

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

Well, fortunately, I passed mine and caught it in the filter they gave me at ER. Hard to believe in my case that something so small could cause that much pain. I had acute appendicitis about 20 years ago and guessed I would never have any pain that would top that, but . . . well you know all about kidney stones & pain. When I got the IV pain meds in the ER, I would have given the nurse anything she asked for in return. I read somewhere on the net a perfect description of it - more or less: "It's the kind of pain that no position your try has any effect at all in reducing it." I remember pacing the ER waiting room because I couldn't bear to sit down. I never thought to jump up and down. I just flooded my urinary tract with gallons of lemon water until it passed. Maybe you should get yourself a trampoline just in case you get stoned again. But maybe the wife could also beat them out with that Shillelagh thingy. Be Well - cujoe

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

I can relate... with my first stone I told the nurse to get a rusty gem single edge razor blade and cut it out.... After that I could recognize one coming on.... and knew what to expect. Only one time I caught one in the strainer. It had a white tip and Doc said it's a calcium stone which are easier to pass than citric acid stones which are Jagged and difficult to pass.

I had a business selling trampolines to Eastern Europeans but I went bankrupt cause....the Czechs keep bouncing.

I hid the Shillelagh....

Keep drinking that H20.

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 05/02/2019 6:08 PM DST

[Victorq1 in reply to j-o-h-n]

Hi J-oh-n,monte111,cujoe and other fellows

with or without kidney stones - smile

I am one of those central Europeans

(although I lived in Western Canada for years)

and do you what is common to all without kidney stones ?

-which means hundreds of friends ,classmates and family:

They all drink daily huge quantities of GOOD beer-

I do not know if water would do?

you can try.

-btw ,without selling anything

there is a reasonable priced Proton beam facility

in Prague (as far as I know built with co-operation with British facility),

also good beer and pretty girls

also beside a nice city.

Greetings

victorq1

PS:

been there,done it

EBRT 2 months,failed and many years on ADT

and almost died because of side effects ,while my oncologist switched

me from Bicalutamide to Anandron (Nilutamidea0

you can read my story under victorq1 or ask,if interested.

[j-o-h-n in reply to Victorq1]

to Victorq1,

Thank you for your post and your concern.... Besides water and jumping up and down my Mediterranean background recommends OUZO and breaking dishes for stones..... ADT side effects are killing me too. I forgot to wear my tee shirt, and I hit my head on the kitchen counter when I bent over and tripped on my tits....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 06/23/2019 2:05 PM DST

[monte1111 in reply to cujoe]

Getting stoned and trampolines are probably not a good idea.

[Victorq1 in reply to monte1111]

Hi J-oh-n,monte111,cujoe and other fellows

with or without kidney stones - smile

I am one of those central Europeans

(although I lived in Western Canada for years)

and do you what is common to all without kidney stones ?

-which means hundreds of friends ,classmates and family:

They all drink daily huge quantities of GOOD beer-

I do not know if water would do?

you can try.

-btw ,without selling anything

there is a reasonable priced Proton beam facility

in Prague (as far as I know built with co-operation with British facility),

also good beer and pretty girls

also beside a nice city.

Greetings

victorq1

PS:

been there,done it

EBRT 2 months,failed and many years on ADT

and almost died because of side effects ,while my oncologist switched

me from Bicalutamide to Anandron (Nilutamidea0

you can read my story under victorq1 or ask,if interested.

[Victorq1 in reply to cujoe]

Hi J-oh-n,monte111,cujoe and other fellows

with or without kidney stones - smile

I am one of those central Europeans

(although I lived in Western Canada for years)

and do you what is common to all without kidney stones ?

-which means hundreds of friends ,classmates and family:

They all drink daily huge quantities of GOOD beer-

I do not know if water would do?

you can try.

-btw ,without selling anything

there is a reasonable priced Proton beam facility

in Prague (as far as I know built with co-operation with British facility),

also good beer and pretty girls,

also beside a nice city.

Greetings

victorq1

PS:

been there,done it

EBRT 2 months,failed and many years on ADT

and almost died because of side effects ,while my oncologist switched

me from Bicalutamide to Anandron (Nilutamide)

you can read my story under victorq1 or ask,if interested.

[sjc2 in reply to gamemaster34]

Hello gamemaster34! We are in the Birmingham, AL area also! I wonder if you're going to the same MO as my hubby, since you said "she" when referring to your MO. Is your MO Dr. Hamilton?

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

did you get RT in stone age.....complete scorched earth radiation

may be operator was dosing....

a bit scary...for Good L H H

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

Damn operator wasn't dosing, worse he was texting....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 09/09/2019 12:07 PM DST

[elvismlv123]

I assume they removed your prostate. The surgeon who performed the surgery must have observed clear margins?If at that point you had locally contained cancer then whatever is beyond that has to be eliminated with radiation. Whatever was raising your PSA in your prostate is gone so your PSA is low. If something is left in other structures it must be treated. Use of Lupron,Casodex is treating that residual PCa is a systemic approach.

Any and all of that is good to protect you while waiting for radiation. The cancer cells will go into a stupor and be defenseless for radiation. But the dr has to know precisely where to radiate the cancer. Easier said than done. Remember that there are patients who didnt do surgery who were managed for years with the drugs alone.

I would do a thorough search of the success rate of each dr and see who has had superior results. What equipment are they using? Find someone who has super stellar results.

Ask Dr Meyers in VA who he would use ...he went to FL I know years ago.

Some of these drs write papers and those guys know more about the subject.

I dont think time is of the essence so look around but the drugs are a no brainer.

It isnt going to be a gamechanger without the radiation....but its a good protective maneuver. You do need a security blanket and a pre radiation therapy like this.

I never did the radiation because they said I needed chemo,ADT and radiation.

The ADT was for 3 years and way too long...that made me say no.It was Guilianis dr Richard Stock at Mt Sinai?Firstly chemo was just starting as a novel approach without ant proof it worked. ADT was known to work. At the time I took Prostasol and it reduced my PSA right away. These kind of herbal remedies are still around and I am sure theyb still work. Somehow they starve out the PCa cells. People really dont understand how sensitive PCa and normal prostate cells are to ANYTHING we ingest. Its not a foreign country.

So if you eat something anti hormonal your PSA will be affected right away.

I f you can get two doctors who are great ...thats the way to go but I figure thats near impossible.

BTW there is a protocol for this and its a standard for hospitals.They wait 3 months for a rise...then another 3 months and if the rises are too high they say the surgery has failed and scavenging radiation is prescribed. They usually irradiate the Prostate bed.

[gamemaster34 in reply to elvismlv123]

Thanks for the information. I did have surgery.

[Victorq1 in reply to elvismlv123]

Hi elvismlv123

Beside "standard" and Intermittent ADT

lupron,casodex

and lately lupron only , Bicalutamide is known to be liver toxin

and worse Anandron (Nilutamide) almost killed me.

Two doctors recommended Ketogenic diet

I am on now and loosing weight

i was too "heavy" from 110 KG to more comfortable 90 Kg.

Please explain what you mean with "anti-hormonal " food please,so i can avoid it.

Thanks and good luck and health !

victorq1

[elvismlv123]

I meant to say two doctors to agree on a therapy who are great but its not going to happen. Most of your tumor burden is gone and PCA is a slow growing disease.

This phase is necessary but sort of incidental to the surgery.

[gamemaster34]

Thanks for all the comment and advise.

[Hidden]

Sounds like way different opinions. Check out the radiation drs at m d Anderson in Houston. Don’t know anything about imrt but the 2 minute time sounds similar to what I had in Houston. It was proton radiation. Don’t ask me if it is better or worse. They say it is. Others say not. All I care is if it worked. Very positive there of that helps. Worth the trip. I had guys from Florida Tennessee Mississippi. All came there because they were confused about treatment including me.

[gamemaster34]

I called the Dr. at MD Anderson today to clarify the differences. He said that the 8 to 10 min. was the set up time and getting me in place but only 2 min. of actually radiation. He also said the reason he wanted to wait later for radiation was to give me time to to heel from surgery but could be sooner if bladder issues improve.