How content should I be with my curre... - Advanced Prostate...

Advanced Prostate Cancer

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How content should I be with my current treatment 🤷

Lewellen profile image
Lewellen
•6 Replies

Yay, I finally expanded my treatment history into a useful document! Just did the update.

The dust seems to have settled into my current treatment of Lupron, Abiraterone, and Prednisone. And I have to admit I'm enjoying riding that path quietly for a while.

On the other hand I'm still confused about some things I've brought to my MO and RO.

My RO has told me twice now that she will not do any further radiation on me as long as the prostate can continue to be a point of origin for cancer. So I definitely understand her position!

My MO agrees. So any possibility of an "early'' triplet therapy is off the table before it gets on. And the idea of met-to-met spread doesn't seem to get a response from either of them.

Zapping existing Mets with a focus on the main nodule in my previously zapped prostate makes sense to me, but it's a no-go 🤷.

Does this mean I'll never get any more radiation? I don't think the ROs condition is even possible to meet!

Sounds like a logic hole to me 🤔

And when I've brought up to my MO the idea of just ADT vacation (s) much less BAT, the conversation seems to dissipate.

So I'm wavering.

If this is the best treatment for me for the next months or years anyway, maybe I should just stop chasing possibilities for now.

But do I want to be hoping for some non-SOP treatment eventually from this team which is sounding more SOP with every visit?

Wouldn't a second opinion within my medical network be likely to be SOP too?

Going outside network can't happen. Tried that once. What a fiasco. Wasted 5 months.

My Lupron treatment is open ended. I feel like I can rabble rouse now or later.

I really like the idea of zapping existing Mets now though...

Advice?

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Lewellen profile image
Lewellen
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tango65 profile image
tango65

I would get a second opinion about doing SBRT or brachy to the node in the prostate and SBRT to the other nodes and discuss the possibility of doing whole pelvis radiation and also radiation to the higher node along with at least 2 years of ADT and abiraterone.

redjournal.org/article/S036...

Lewellen profile image
Lewellen in reply to tango65

Thanks Tango, your suggestions support and amplify on what I've thought would be the way to go.

I am impressed with my current MO and RO for other reasons, but I'm just not following why we can't do more now instead of later!

Especially with radiation.

I'll have one more talk with the MO in a few weeks. Then I may need that second opinion.

Lewellen profile image
Lewellen in reply to Lewellen

I think some of the reason my MO isn't considering radiation is that I have exceeded the "cutoff" for Oligometastatic cancer. But why should the number 5 be magic?I'm told my Mets are small too. The tech who read the scan initially found 4 or 5. The RO reviewed it and found two more tiny ones.

So now I don't "qualify"??

tango65 profile image
tango65 in reply to Lewellen

If the higher up node is close to the aorta bifurcation, get a second opinion about radiation treatment besides ADT and abiraterone.

Tall_Allen profile image
Tall_Allen

As I understand your situation - you had prostate radiation, but then you had a recurrence in your pelvic lymph nodes "plus one "higher up" (out of the pelvis?) " Why is that a question? Where, exactly is the one higher up? It matters.

There is no point aiming at individual lymph nodes. If it is worthwhile irradiating lymph nodes, the entire area must be irradiated. There is a lot more cancer than can be seen on any PET scan. But if the mysterious "out-of-pelvis" lymph node is above the aortic bifurcation, your cancer is systemic and only systemic therapy will be useful.

Lewellen profile image
Lewellen

Ahh, now that I can understand. AND I can ask those specific questions!Thank you TA

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