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new guy - Advice about PBT before I start?

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Posted 2/28/2019 10:15 PM (GMT -5)
My Rad Onc at Northwestern is recommending PBT for my recently diagnosed metastatic disease in left iliac node.
My PC History - I had RRP in Jan 2005 w Dr Catalona, BCR in March, 2009 and had adjuvant external beam radiation in 2009 when my PSA rose to 0.4. about 15 months later, I experienced several instances of bleeding due to radiation cystitis in my bladder. Not pleasant, lots of cystoscopies to clean up my bladder in 2011 but no malignancy, and annual cystoscopies since then, which have all been clear for malignancy.
My PSA started rising 24 months ago, it hit 6.5 in Oct 2018 and I started Lupron injections in Nov. and Casodex in late January, 2019. I started seeing Dr Hussain at Northwestern in late Dec, 2018. She referred me to a Rad Onc at NW who performed a series of CT scans and an Axumin PETCT scan which indicated an area on my left iliac lymph node which was "highly suspicious" for metastatic growth. Dr Hussain wants me to start a course of radiation at the Proton Center outside Chicago. My most recent PSA was 0.17 and I'll have my next PSA next week.
Has anyone on the Forum had PBT treatments to the pelvis? It sounds like 28 sessions are planned. My planning CT session yesterday was difficult, they performed a procedure that I was not prepared for.
I could use some help if you've gone through PBT, fellas. Will I get beat up by radiation like I did in 2009? Have you heard of any alternative treatments? Since my PSA has dropped so quickly, can I delay the start of radiation? I'm nervous about getting through another course of Rad.
Thanks, zeke
Posted 3/1/2019 8:58 AM (GMT -5)
Hi Zeke,

Are they radiating the general pelvic ares or just the one node? You might also consider SBRT if they are doing specific targeting as you might do it in far fewer procedures. I don't remember anyone using PBT for other than initial treatment. Usually IMRT is used for salvage radiation. Obviously they did not include the pelvic nodes in the initial AEBR.

Of course the current PSA drop is due to the Lupron. It will not likely kill all the cancer, but it will starve it enough to suppress the activity and PSA expression. The radiation will kill whatever it gets to. If there is undetected PCa outside the radiation field you will know that by a PSA increase after the radiation is complete and you cease the ADT.

I hate it when they perform procedures they have not prepared you for, terrible.

Hope all goes well and that this brings another long and durable remission.
Posted 3/1/2019 7:44 PM (GMT -5)
Sorry I can't comment on the proposed Proton Beam therapy, but this treatment will be a real money maker for the Proton Center
and may be hard on your wallet.
PS: I second the thought (JNF) of looking into SBRT to irradiate that lymph node.

Post Edited (Sr Sailor) : 3/1/2019 6:19:58 PM (GMT-7)

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