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What would you do differently?
My biopsy pathology results showed Gleason 8 to 10 in 80% of the samples. Tomorrow, I go for a PET scan and meet with the radiologist and urologist. They had previously discussed prostecomy , radiation/chemo, Lupron and some other things. I also have battled neuroendocrine cancer for many years and through that journey would definitely do a few things differently if I had known then what I know now. So if you have gone through this PC journey, what would you do differently if you could go through this journey again? I am 67 and a Mayo Jacksonville patient. Not really sexually active due to my wifes health issues. Thanks for any advice!
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Maybe I would have insisted on a saturation biopsy sooner, but that’s about it, I guess. It may not have changed where I’m at now (RALP recipient), but who knows?
Oh…I’d also have started my kegels well ahead of surgery instead of waiting until a week before.
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1 ReactionSince not getting cancer in the first place isn't an option...
When my PSA was 6.9, I would have insisted on another PSA test in three months, not the six months (ultimately nine months) that my urologist recommended, a biopsy two months later, an Xray one month later, & finally a RALRP two months after all that.
Six months after the RALRP, my PSA began to rise again, & hormone therapy was quickly scheduled.
Other than the delays prior to surgery (complicated by COVID scheduling), I have zero regrets.
Completely depends on the PET results.
If you have one Gleason 10, you are a Gleason 10 the other numbers are irrelevant. That is very aggressive.
You really do need that PET scan to make any decisions about what To do. If you have metastasis outside the prostate, then the treatment is very different than if you have none. They would more likely lean toward radiation in that situation and if you had more than five metastasis, they would usually want you on triplet therapy with ADT an ARPI and chemo or Pluvicto.
You should make sure to get an hereditary, genetic test. I’m sure your doctors would agree that you need to have one since you are relatively young and have such a severe case. It can give you some ideas about what’s going on in the future, It may not change your treatment plan right away, but it can change it in the future.
I wish you would have included your PSA as part of this question because that is a real important piece of information.
As you may know, Neuroendocrine cancer can be very aggressive. I know a couple of guys that had it with prostate cancer and they aren’t around anymore because there just aren’t great treatments for it. Usually, you go on chemo with the addition of carboplatin. There are some clinical trials testing new DLL3 drugs and some look promising. It’s a big problem with breast cancer as well.
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4 ReactionsWhat would I do differently? I would have gotten a 2nd opinion earlier. My urologist never once mentioned getting an MRI, never mentioned a 2nd biopsy, only wanted PSA and f/u visits. Do kegels and strengthen core & pelvic floor, early on. I wish I would have found this discussion board earlier. Accept that our health care system is broken, you must be your own advocate because nobody is likely to help you, be persistent.