Salvage Radiation Question

[Ab75]

I met with RO for consult. He mentioned radiation to lymph nodes, I am not sure where we left it as far as getting it. What are the pros and cons for this.

[Tall_Allen]

It depends on your PSA. The benefit of salvage whole pelvic treatment and ADT was not maintained in men with very low PSA. I'm not sure what "very low PSA" is - discuss with your RO.

prostatecancer.news/2018/10...

The downside is potential GI toxicity and reduced WBC count. Although elevated, they are still quite low

Hypofractionation should be discussed during the pandemic.

[Ab75 in reply to Tall_Allen]

My last psa was .16 , G7 but mostly G6. Can you have lymph node radiation later if I decide to skip it on initial radiation? Concerned about potential added side effect. Thanks

[Tall_Allen in reply to Ab75]

Yes, you can do the pelvic LNs later. But why are you concerned enough about potential added side effects that are so low? At what level would you not be concerned?

[Ab75 in reply to Tall_Allen]

The statement of the improved results wasn't maintained in very low psa patients. Very low was referenced in another section as less than .2. I looked at the criteria for the trial psa had to be between . 1 and 1 . So I would have increased side effects, although small, with potentially no benefit.

[Tall_Allen in reply to Ab75]

"So I would have increased side effects, although small, with potentially no benefit." You mean you would have a small risk of side effects, with potentially no benefit. You are right at the 0.2 point.

[cesces]

I got lymph node radiation. And it ended up killing off most of my cb4 t-cells.

Most types of t-cells will grow back.

Cb4 t-cells are unique. They don't grow back.

If possible, explore having the troublesome lymph nodes surgically removed.

[Justfor_]

Do you have reasonable evidence for LN involvement, or just including them to be on the "safe" side? In the latter case have a PSMA PET/CT when you reach 0.2 (silly doctors' magic number) to get a better view.

[Ab75 in reply to Justfor_]

No evidence of involvement. I think he is wanting to add it just in case it has spread to the lymph nodes. Thanks

[dadzone43]

It is disturbing that important decisions are being proposed and you are not sure of the next steps or of what was decided. Do you take a companion with you to listen.? In the visit, Your brain is dealing with so much information all at once that you may miss what is said. The clinician should be supplying a written summary of that visit and of the next steps. If s/he is not, you are receiving substandard care and need to speak up. This is your life and your health.

[Ab75 in reply to dadzone43]

No companion been single since my divorce. The discussion lasted over 45 minutes so it is easy to miss something. The medical group I go to can be a pain, they won't release psa test results without the doctors consent it required calling the office several times, I found a work around where I get results directly from the lab. Thanks

[dadzone43 in reply to Ab75]

Sometimes the members of my support group will accompany a buddy to a medical meeting. So much happens in 45 minutes. I am 77 and may miss things. I have taken a digital recorder to some appointments. Believe me: THAT changes the communication!! I am there for my health and not the doctor's comfort.

[fluffyfur]

Did you have positive surgical margins? Any nodes removed during your surgery? These could potentially sway the case for or against nodes.

[Ab75 in reply to fluffyfur]

I had two positive margins and 6 lymph nodes were removed, highest grade at margin G6.

[fluffyfur in reply to Ab75]

Two RO's did not feel it was worth doing whole pelvic radiation for my husband and he also had positive margins, and negative nodes (G6 and G7). Our RO at UCLA (Dr. Kishan) said nodes can be done later. I really think it is a personal preference. I will add my husband had a ton more nodes removed than you did. I don't think there is an easy answer here.

You can do a video or phone consult with another RO and get a second opinion. That's what we did. It helps cement your decision....so at least you're not questioning yourself.

[Ab75 in reply to fluffyfur]

Thanks

[Murk]

I have used a Digital Voice Activated Recorder for Lectures, Meetings, Interviews - HD Sound Mini Portable Audio Recorder with Playback, USB device so I can replay later to make sure I understand all that was said.

Many are available like this one here.

amazon.com/YDEROD-Activated...

[Ab75 in reply to Murk]

Thanks