Today we saw a neuro-surgeon who one of our docs uses to look at last weeks MRI's etc. He began telling us first we need to see our radiologist, since there is a tumor on the right ilium.
I'm writing because i have taken a two year break in what's happening with PCa. Before seeing the radiologist we are going to see 3 other docs. Two are oncologists and one our team alternative guy who helps us mitigate side effects.
The reason I'm putting off the radiologist is that I know nothing about how they even diagnose whether it's PCa or benign. Apparently, it could be benign by what I've read so far. Also, I know nothing about the type of radiation they would use.
We can go anywhere to do it apparently, or if there are different types of radiation, since I have zero experience or zero framework to pull from..
I'm not burying my head, though I do know that upon initial diagnosis, the scans showed at least 9 met places in his body, which we know now were something else showing up. That's a story in itself.
I'm asking for any information about making sure something is cancer before radiating. And, if anyone has had their pelvic bone radiated. We are familiar with spot radiation on a vertebrae. PSA did decrease afterwards, something the doc today doesn't believe, though I know someone else who had the same experience and even read a paper on it today. PSA can drop after radiation to a bone.
This is much too important for us to just go in without information. Many doctors today are kept exceptionally busy with all of the merging centers, and the hoops they have to jump through. I truly feel for them.
An MRI was looked at 6 months ago without a mention of this tumor though it was there because it was sensitive to the touch then... We mentioned it and it was dismissed.
It's integral that we get as much information as possible. We aren't the usual patient they see. We have veered off many times from the conventional route.
What we have on our side is 11 1/2 years from the initial Stage IV diagnosis. So, we just keep asking, looking, questioning and being grateful... I'd appreciate any information. It'll be more than I have now, and I will research it.
Thanks.. genie
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Bluebird11
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It is unclear from your post whether Paul has been on ADT or not. If he has, the new met is a sign of castration resistance. Since it is painful, SBRT treatment in 1-3 zaps of SBRT is all that's needed. If the pain is relieved, it was a met.
PSA almost always goes down after mets are treated with radiation. That does not necessarily mean the cancer progression has stopped -- it has been stopped LOCALLY, but not systemically. Treating PSA is not the same as treating the cancer.
There are PET scans that are more sensitive than bone scans. Unfortunately, the Axumin scan is only approved for recurrent PC. The PSMA-based scans are experimental, and those trials are limited to recurrent patients and high risk patients with localized PC. You may be able to get the NaF(18) PET scan if your hospital has a registry. It is only useful for bone lesions with active overgrowth, and may also have false positives. A biopsy is a sure thing, but that is not always possible if the lesion is small or hard to reach.
Thank you, your post is very helpful to me. Once we see the radiation oncologist I will come back with what he suggests.
I had an interesting conversation with one of the docs when I said we at this point are not interested in chemo.
His response was if my husband did Lupron then he considered that chemo. I related Lupron to a systemic treatment. I would never consider these chemo drugs.
I didn't respond since I felt it not appropriate to challenge him. Could this be a general conclusion that a doctor would make about ADT therapy?
I shall return and again I thank and appreciate the information you provided... genie
I agree with you that ADT is not chemo. What we mean by "chemo" is a cytotoxic drug that kills cancer cells more effectively than healthy cells. ADT has no effect on healthy cells that lack an androgen receptor.
With 9 mets, docetaxel is certainly his best bet right now. Possibly while you were on break, we got more evidence for its benefit in early use, especially when multiple mets have been detected. In such men, docetaxel improved survival by 1 1/2 years. By contrast, if they wait to use it, they only get 2 months of extra survival from out. It also has fewer side effects and INCREASES quality of life more when used earlier. It is tragic that so many men put off using it due to what they may have heard about other chemos for other cancers.
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