Dying from PC. Questions doctors don't seem to want to answer.

Posted by rick42wood @rick42wood, Jul 23, 2023

How does prostate cancer eventually kill you? You can survive without a prostate so how do you die? I have often head of doctors saying you are more likely to die with it than from it, but if you do die from it, what is the process?

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@linric70

Our urologist told us bluntly that since my husband had a leakage spot on his pelvic bone that he would die in 6 months from bone cancer if he doesn’t take the meds he suggested. Needless to say we are looking for a new UR while my husband continues on Lupron & Xtandi.

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Look at adding 3 month injections of Xgeva as well take 1200 mg Calcium plus one at bedtime when cells reproduce I am also on Zolodex injectin 3 months and Xtandi in Jan L1 was radiated 2 years ago L2 now has 1 inch since Jan PSA dropped from 9.8 to 1,7 in 3 months

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"Prostate cancer tends to be the tortoise of tumors, growing and spreading slowly. When cancerous cells escape the golf ball-sized prostate, they can lodge in various places throughout the body. New research shows that where these cells go can affect how long a man survives.
When prostate cancer spreads, or metastasizes, about three-quarters of the time it takes up residence in the bones. Less common locations are the lungs, liver, and lymph nodes."

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I asked a death doula about dying from prostate cancer. She was very helpful. Her observation was that the dying process is similar to all cancers. The better prepared we are for our death the better the outcome will be. We all want the same thing. Die in our sleep. That seldom happens.

I am 2.7 years into this stage 4 prostate cancer journey. Best version of myself because of all the work I put into my wellness. But she advised me to keep a palliative team at the ready. I visit a palliative psychologist every three months. Epically helpful.

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I am wondering if the future of prostate cancer medication isn’t heavily in immunotherapy. This was the treatment of Covid and HIV. It might be that this cancer appears in older men who may have a less active immune system and that complicates immunotherapy treatment. Has anyone spoken to their physicians about this? I also wonder if immunotherapy coupled with ADT is a viable treatment?

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@kam23

I was diagnosed with PC at 58. Mine was highly aggressive. I pressed my oncologist this question…”what is the prognosis for curing this disease?” He hung his head a said “Very low.” (I had a Gleason score of 5+4 to 5+5 and the pc had spread to seminal vesicles and several lymph nodes but not yet to my bones.
Fortunately, my wife wouldn’t accept this and did tons of research. Long story short…we found a doc at Mayo Rochester (Dr. Kwon) that treats PC more aggressively. Eighteen months past my original diagnosis (stage 4) now and my recent scan was clean and my PSA

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Get on Xtandi and Xgeva if it mets I am as well Zolodex shots

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@kam23

I was diagnosed with PC at 58. Mine was highly aggressive. I pressed my oncologist this question…”what is the prognosis for curing this disease?” He hung his head a said “Very low.” (I had a Gleason score of 5+4 to 5+5 and the pc had spread to seminal vesicles and several lymph nodes but not yet to my bones.
Fortunately, my wife wouldn’t accept this and did tons of research. Long story short…we found a doc at Mayo Rochester (Dr. Kwon) that treats PC more aggressively. Eighteen months past my original diagnosis (stage 4) now and my recent scan was clean and my PSA

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That’s great news kam23. Congratulations! Do you mind sharing how Dr Kwon treated you?

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@mtarchangel

That’s great news kam23. Congratulations! Do you mind sharing how Dr Kwon treated you?

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I was started on Lupron (ADT). Chemotherapy with Docetaxel was added (3 week intervals for 6 rounds). Next I had 20 fractions of external beam radiation to my pelvic region and 15 to my chest (to target a lymph node in my chest).
Lupron is planned for a couple more years if I can tolerate it.

After visiting Mayo for a consult, I went back to my big 10 university system doc to see if they would do the same process. They would not, claiming the chemo isn’t effective. At that point I switched my care to Mayo/Dr. Kwon.

I highly recommend watching the videos of several presentations where Dr. Kwon discusses various approaches to treatment. I realize each patient’s situation is different. I can only say we are very glad we switched…and that it has saved my life.

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These are the type questions you need to ask medical professionals. But not one get several opinions. Then research the topics with known professional medical providers, hospitals and doctors.

It really depends on the type, grade, group, level of risk metasising, etc. One diagnosis is not the same as other diagnoses. It is not one is same for all. If you catch early and is inside prostrate there is one level of treatment and risk versus aggressive and outside of prostrate. So don't let a diagnoses of prostrate cancer mean what anohter outcome might be.

The wait and see is common if low risk, low grade, inside prostrate, and Decipher test confirms. But a Decipher test requires a biopsie sample so it beyond "wait and see." I was told the same thing that I would most likely die from something else other than prostrate cancer. But I chose treatment to cure it (highly curable at my stage and type) . But you can't use my personal case to decide yours. Good luck!

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Well said! Every patient’s case is different depending on how much cancer you have and where it is. If diagnosed early and it’s limited to the Prostate you have more options versus a metastasized case. There are no correct or best solutions. The available therapies are a personal choice along with the recommendations of your physicians. Best recommendation is to do a lot of research so you can be well informed which is always a good idea no matter what type of illness or cancer you are diagnosed with.

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