ONC wants me to see RAD ONC ( Scared)

[DeanNelson]

Ok, so my doctor has told he wants me to meet with RAD ONC, on my 6-month visit since I was diagnosed with APC. I have been on Zytiga and Lupron since day one... I have no pain, but the usual side effects of the drugs. Other than that I feel OK... I was told I have a very rare and aggressive variant of APC "Ductal Adenocarcinoma" Gleason 9 with Bladder and bone Mets...

What are they likely going to do?...what kind of radiation?...

I've heard of so many different types from everyone.....

Does anyone have recent data of survival time with this type of APC?

What should I ask them?

Should I be getting

[Tall_Allen]

They are probably going to want to debulk the cancer in the prostate, bladder, and bone mets with external beam radiation (IMRT or SBRT). It usually responds to hormonal treatment, radiation and docetaxel. The prognosis depends on the proportion of your cancer that is acinar vs ductal.

[DeanNelson in reply to Tall_Allen]

Tall_Allen will I have to be there for days?....is the treatment like once a day for 10 days?...etc

[HopingForTheBest1]

Are the hormone drugs losing their effectiveness, and are you having a rising PSA? If not, I am curious why the need to see a rad onc. Have you had a recent scan indicating possible progression?

[charlesmeyers1964]

if your talking about Gleason scores then u haven't had your prostrate removed or radiation applied. most people who have some tx on lets just say prostrate then the gleason score is gone. its only used for when first dx the score tells u how fast the cancer is moving and the size of the tumor.

charlie

[Rmanns]

You don't have to do anything you don't understand. Talk to your Doc.

I did IMRT 3 years ago for the reason Tall Allen noted and I'm glad I did. l recently did palliative radiation and feel much less pain.

A number of people have side effects from radiation later on (a year or 3). Usually bleeding and scar tissue in urine. had this, It's tolerable.

[Raymonda100]

How did they determine you have this aggressive type of cancer?

[DeanNelson in reply to Raymonda100]

Biospy

[Caring7]

First - the radiation oncologist is one of our favorite doctors in this mad journey. We have a really good one. They are really specifically trained in both reading the scans and helping you decide the best things to do. Your MO is sending you to RO so that you can get more info and make better decisions. My husband skipped past any localized treatment for the PCa, but he has had "spot welding" as we call it, for palliative pain relief, and as someone else noted, the results of this have been good.

We go see the RadOnc any time Joe has concerns, feels like he has tumor pain, or he doesn't like what we see on the scans. He works closely with the MO. And about half the time, he does not recommend treatment. What we really appreciate is that he goes through all of the imaging really thoroughly, so if there is a decision to treat or not to treat, we feel really confident about the reasons.

[DeanNelson]

Thank you!!

[Hidden]

DeanNelson, I survived it, you can too. I’ve never been told that I have ductal.. That’s doesn’t sound great, sorry about that. Your strength and lack of symptoms should be to your advantage. I did the IMRT 5days a week for 2months. Fatigue ,depression and moods swings have been some of my issues. I ve gotten much better the further I get away from RT 31/2 yrs ago .. lace up your boots, you’ll be whipped around a bit but when it works it’ll be worth it.. All treatments suck. You must do whatever it takes to be with your loving wife and family. They need you here. Although fear is expected and always available to us. We cant feed into that or we lose the fight. Enjoy each moment while not dwelling on this PC BS. Don’t listen to anyone spouting the negative. Got to give it the ol’ Hail Mary . Stay active .. dig deep , ... I pray for you to hurdle these gates and get to a better place..