New and looking for info

I love chatgpt for this, it is really helpful!
Hope it helps you

I posted this:
I want to recommend chatgpt to a person who posted this (I included your post) and include caveats. what do you suggest.

It responded (this is after me telling it to include creating a free account with memory turned on)
I can post examples of explanations of my diagnosis if you'd like. I find it pretty remarkable (I work in IT)

"Hi [Name],

First, I’m sorry to hear about your husband’s diagnosis. I admire your proactive approach to learning and advocating for him. It’s wonderful that a forum helped you during your cancer journey, and I hope this one offers similar support.

I’d like to recommend a tool called ChatGPT. It’s an AI that can explain medical terms, help clarify complex topics, and even suggest questions to ask the medical team. It’s not a replacement for professional advice, but it can be incredibly helpful for making sense of technical information or preparing for consultations.

How it can help:

You can upload documents, like medical reports or lab results, and ask it to explain unfamiliar terms or summarize key points.
It can suggest questions to ask your doctor based on the information you share, helping you prepare for appointments.
With a free account (memory enabled), it can remember key details from your conversations, so you don’t need to repeat the background every time. This makes follow-up questions or exploring new topics easier and more efficient.
Caveats to keep in mind:

Accuracy: While it’s well-trained, it may occasionally give incomplete or imprecise answers. Always verify important medical details with your doctor or trusted sources.
Context: It doesn’t know your husband’s full medical history, so the information it provides is general and not tailored to his specific case.
Human Interaction: It can’t replace the empathy, nuance, or expertise of healthcare professionals or a support group like this one.
If you try it, I’d suggest asking it to:

Explain terms like PSA, Gleason score, and high-risk prostate cancer.
Outline typical treatment options for similar cases (e.g., surgery, radiation, hormone therapy) to discuss with your doctor.
Help you understand questions to ask your doctor at Tuesday’s meeting.
It’s a tool, not a guide, but it can help you feel more confident and prepared during this challenging time. Best wishes to you and your husband on this journey."

-- not part of the answer:
This version highlights both the practical features (e.g., uploading documents) and the advantage of memory on a free account, while maintaining a supportive tone.

Give it all the information you have and ask it what your options are, and what are the pros and cons of each (include where you live) and what questions you should ask at the upcoming appointment.

This is an example of a conversation I had with it about my abiraterone/prednisolone treatment (for prostate cancer).
It is very technical (it knows I like that) but you can ask to explain it as you need, just say you are new to PCa and it will adapt explanations accordingly.
https://chatgpt.com/share/675c4153-09e4-8013-9f84-0936860d819d

I find ChatGPT helpful to get pointers on what to look for elsewhere, but use with extreme caution.

1. If you upload personal health information to ChatGPT, you're sending it somewhere not governed by HIPAA rules around protecting patient data. There's nothing but their vague promises to keep it out of the hands of (say) an employer, insurance adjuster, foreign government, or identity-theft hacker.

2. ChatGPT gives accurate answers the majority of the time, but wildly -inaccurate ones maybe one time out of 3 or 4 (depending on the field). Changing the phrasing of your question slightly can result in a diametrically-opposite answer.

Here are a couple of places to start getting reliable information safely:
https://www.amazon.com/Patrick-Walshs-Surviving-Prostate-Cancer/dp/1538726866
https://www.scientificamerican.com/article/treating-prostate-cancer-at-any-stage/
Best wishes to both of you!

@northoftheborder has a good point about (very occasional) bad answers which is covered a bit in the caveats above.

I'm super privacy conscious, I use privacy enabled browsers and opt out wherever I can, and you won't find any photo of me on the internet anywhere (that I know about), but I don't have an issue with the Open AI (chatgpt) privacy policy which I have read.
And a lot of personal data is stored here as well.

Breaches do happen (I work in cyber security) and hospitals have been targeted but I feel my data is probably safe at OpenAI.

It's all about risks vs benefits. If you look at the cookies or the sites that may be called from most pages (including this forum) it's a bit scary.

Chatgpt can give bad answers (especially if you tell it that it is wrong, it will correct itself wrongly!) but the recent models are very good and for most medical subjects it is excellent (training data sources are good).

p.s. this is chatgpt's analysis of the content security policy (what the website is allowed to do, not what it necessarily does) of this forum 😉
https://chatgpt.com/share/675c47cb-e078-8013-8964-52422495f4c5
This site is actually supplied by a well respected company (I checked before joining) so I have absolutely no problem with it at all.

Thank you for your reply re: chatgpt. I am a retired library director and would prefer to avoid ai resources.

I use ChatGPT only to translate medical "mumbo jumbo" that I don't understand. I find something like "Explain this in two paragraphs at an 8th grade level: " and then pasting a huge amount of technical medical data is really useful.

The first thing you should do is request that he get a decipher test. That will tell if his cancer is likely to spread and have metastasis soon, or later if not treated. A Gleason eight is an aggressive cancer, But I have seen people with Gleason eight that have had treatment and 25 years later they are still alive.

If you’re going to a urologist, they will almost definitely recommend surgery, Because they are surgeons. You want to also see a radiation oncologist to get their opinion about what to do? There are other treatments as well, HIFU, cryotherapy, TULSA-PRO or more (others here will recommend).

Is your husband being treated at a center of excellence? That is very important for somebody that has advanced cancer like he has. The fact that he doesn’t feel anything is not unusual, Some people get prostate cancer Metastasis all over their body and have no idea until they’re tested.

Has the cancer gotten out of the prostate? Ask the doctor. You may need an MRI.

Your husband should get a PSMA pet test as soon as possible. That will tell whether or not the cancer has spread outside the prostate. Because Seven out of eight cores Are cancerous you definitely want to get more information right away.

Did the doctor say he has cribriform or intraductal? That can make the cancer much more aggressive, Find out.

With the proper treatment, your husband could live for decades.

As you are living proof of, you can hope for 13+ years together given the state of the art treatments that are available to you. Negative comments seem to add to one’s fear of the future.
Warm wishes you and your husband in this season of Hope.

Very true, and the field is changing so fast that this year's information will be out of date by the end of next year.

I fully expect that in a few years stage-4 prostate cancer will become a chronic disease that (in most cases) can be managed for the rest of your natural life, like HIV or Parkinson's. The Scientific American article I shared earlier in this thread suggests that we're on the verge of that already.

So any treatment that gives you an extra year or two longer might really be giving you an extra 20+, if it helps you survive to the next big advance.

Don't give up — keep on keeping on, folks!