Why can't I get Prostate SBRT when I'm metastatic?

[mikell]

I've been on ADT for about 5 years and through standard radiation to Cervical and Thoracic vertebrae (thoracic vertebrae now collapsed). I've been through Xofigo series and a month after that finished, had more Mets than I started with. Seems like the bone is left in a weakened state and CTCs repopulate everything. PET scan after Xofigo says one major hot spot, the Prostate and Prostate Bed. I've asked multiple times of my NWM doctors about treating the Prostate directly and they say "the horses are out of the barn" and seem content to leave it be. Most recently, Docetaxel seemed to be working and PSA dropped from 600 (where it rose to from 9 during Xofigo) to 90 and then leveled off there by the 4th treatment. Alk Phos in normal range. Why won't they go after the Prostate? I'm now thinking about leaving NWM. Where might I go in Chicagoland area?

[noahware]

I think to want to treat the prostate, your team is going to want to be convinced that it will really benefit you (and not just make your numbers look better). So maybe the real question is, what will convince them of that? So more than ask them why they don't, you need to tell them why they should.

Certainly if there are symptoms directly related to the prostate itself you will want them addressed. If they refuse THAT then you obviously want a new team. But other than for symptom relief, I think not treating the prostate directly in your state of advanced mets is normal SOC.

I hope others here will offer some supporting data on why SBRT would be a good idea, because that will surely be helpful to those with mets who still have their prostate (like myself).

[Tall_Allen]

Your doctors are right, and any doctor that agrees to treat your prostate is ignorant or a shyster who you should avoid like Covid-19! The uselessness of treating the prostate after multiple metastases have been discovered has now been proven by two major randomized clinical trials, which you can read about here:

prostatecancer.news/2018/09...

You are probably making the common mistake of believing that the metastases you can see on imaging are all there is.

Northwestern is certainly one of the best hospitals for prostate cancer oncology in the country. Both Maha Hussain and Alicia Morgan are there - you won't do better anywhere.

[Curehunter in reply to Tall_Allen]

What do you think about this study.

Sent from Yahoo Mail on Android

Men with terminal prostate cancer could be thrown a lifeline by 'doubling up' radiotherapy treatments in new approach that halves speed at which disease progresses, study finds

dailymail.co.uk/health/arti...

[Tall_Allen in reply to Curehunter]

It blocks me from reading the link.

[Curehunter in reply to Tall_Allen]

Not sure why it blocks you.It was a study carried out by Queens University of Belfast that found PCa patients lives could be extended by at least 5 months by combining radiation of the prostate with Ra223. It was led by Professor Joe O'Sullivan.

[Tall_Allen in reply to Curehunter]

Yes, I agree that Ra223 and EBRT can be a good combo. See the "external Beam Radiation" section in my Xofigo article:

prostatecancer.news/2021/02...

But this has nothing to do with debulking the prostate.

[mikell in reply to Tall_Allen]

I did manage to read Curehunter's link. I did first get a redirect notice from HU. Clicking on it proceeded to the site.

[Stevecavill]

I think it’s a bit more complicated than TA’s answer of straight no, it doesn’t work, it depends a lot on whether you had oligometastatic disease. It sounds like you don’t though as you referred to widespread mets. In which case neither metastasis directed therapy or treatment of the primary would likely do much ro-journal.biomedcentral.co...

urotoday.com/video-lectures...

[Tall_Allen in reply to Stevecavill]

What I actually wrote was "The uselessness of treating the prostate after multiple metastases have been discovered has now been proven by two major randomized clinical trials." There is just no question about it.

[Stevecavill in reply to Tall_Allen]

Yes, I did miss you said “multiple”, my mistake. And your link makes it quite clear. It’s certainly worth investigating though for men with low metastatic burden, like me

[cesces]

Once it metastasizes, local treatment makes sense only is something local is threatened, like a tumor near your spine.

But no harm in getting second opinions.

Try university of Chicago.

[EdBar]

I was dx with stage 4 PCa, mets throughout my skeleton. In the first year after dx back in 2014 I consulted with an RO who suggested I debulk my prostate. Seemed to make sense, especially after reading Snuffy Myers book where he details studies showing how metastasis are spread. Eliminating a significant amount of tumor cells made sense to me and so I i it done using IMRT. This was done by the RO who suggested it, an award winning doctor in the Atlanta area, far from a “shyster”. Later when I became a patient of Snuffy Myers he commented it was one of the best things I could have done, “eliminate the mothership so it doesn’t create more metastasis or give way to mutations”. My local MO at the time, another award winning doctor and no “shyster”, agreed with having it done, he based his opinion on palliative reasons, by radiating the prostate you stop it from spreading into other nearby organs that are very difficult to treat (bladder). Given the option I’d do it again in a heartbeat, I believe it’s one of the many reasons I’m still alive today. That’s my experience, just sharing what I’ve done that has seemed to help me.

Ed

[spw1 in reply to EdBar]

My husband's MO and RO did prostate SBRT despite the diagnosis of bone mets. At the time, the MRI showed that the prostate had lost its extracapsular extension and had shrunk. There were no pelvic masses. They also thought that the bone scan was consistent with healing; certainly no new mets since diagnosis in July 2020. The debulking will hopefully provide benefits on the basis of the mothership theory as well as palliative reasons (this was the RO thinking). My husband would have chosen an RP if one was offered but with covid hospitals are not functioning normally.

[mikell]

I'm not simply seeking Prostate debulking. It's just that every time something seems to be working, like Xofigo (good ALK Phos readings) a month later more mets start appearing, all the while still on ADT. My last PET-CT scan appeared to show the hot area of activity to be my Prostate and Prostate bed. And, while Xofigo did appear to be doing it's work, it wasn't doing anything to stop the aggressive cancer in my prostate. I will be having a 6 month repeat PET-CT scan in a few days and am curious as to what it shows. However, I should note that I have put off my 5th round of Docetaxel because my PSA had stopped dropping. It was 600 at chemo beginning, dropped sharply at every blood test until about 90 after the 3rd chemo, did a quick rise to 120 and then back to 90 again and stayed about the same again for the last blood test. There have been substantial effects from chemo, like neuropathy in hands and feet, in spite of every extensive cooling method I could manage. My WBC was also dangerously low. The only good sign is my ALK Phos is currently in normal range. My perception might change after the next PET-CT scan but I think it likely it will still show my prostate as being highly active