11 anniversaries since diagnosis of stage 4 prostate cancer

Sharing info on who has the latest and best practices, or what works is indeed a great benefit on site like this. Does not mean what is good for the goose is good for the gander. But at least it is one place to start.

Excellent point. Having been a physician for about 45 years, I have witnessed first hand the disparity in skills and knowledge among physicians. As quickly as the treatment of prostate cancer has changed over the last 5-10 years, it is imperative to have a team that is up to date on the latest treatment regimens. It is very difficult for a general oncologist to keep up with treatment of all cancer types. A medical/radiation oncologist and urologist that specializes in GU cancer treatment at a major medical center is likely most qualified, but, of course, there are always exceptions.
I would hope that some less informed men on this forum do not take the information and/or recommendations as gospel and try to apply that to their own situation. Each is different. As you say, this forum does provide some excellent information to jump start conversations with treatment teams or maybe question if some need a new team with more specialized care.

Good luck in your journey.

Yes, agreed. I'm not a physician, but since there's no one-size-fits-all solution in my area of expertise (IT), it's implausible that there would be one for any given medical condition.

I think good ways for us laypeople to share information include "here's what I'm doing (and why)," "here's a new development (with source)," or "ask your medical team about X."

Harmful ways include "you have to do Y," "follow my amateur (mis)interpretation of this the results of thos isolated study," or "ignore medical advice and rely on 'herbal' remedies/fad diets."

Thank you for your kind words! Best hopes to you and every one of us!

Thank you rick137! You've raised a great point. I try my best to stick to a healthy diet and maintain an active lifestyle, as we've been repeatedly advised. I've always enjoyed exercise in my life. As I'm getting old, going out for a walk and gardening have become part of my daily routine. I also enjoy traveling and playing with my grandchildren. Remember moderate exercise is beneficial for our bone health. In terms of diet, I follow the general principles of a heart-healthy diet. ADT and older age increase the risk of heart disease and stroke, which may partially explain my suboptimal cholesterol and glucose level. Management of prostate cancer is continual learning process. I'm also interested in learning what others are doing.
Personally I like being involved in deciding my treatment plan. It's a learning process. For prostate cancer and many other diseases, you're best managed by a multidisciplinary team. It's helpful to know the underlying reasoning and data about choosing a treatment.

While the advances in science and technology are more than welcome, as one of our friends ( radiologist?) puts it, the world has become rather complicated. Let us start with the basic definition of what is undetectable. Johns defined it as PSA 0.5 to 0.1. Now it is < 0.1, but some ultra sensitive test defines it as < 0.003. Most doctors in the field seem to agree there is not a lot of difference in term of wellbeing between the two. Same with the definition of cure.
Hope that helps.

My understanding is that medically - metastases will not grow when your PSA is 0.6 or less. Therefore, what seems to have been medically accepted answer is < 0.100 for those with a prostate. However, if you someone who has had a proctectomy, my understanding is a PSA < 0.01 is undetectable. But, most studies/trials such as ARSENS and some other use < 0.2 This all seems very subjective to me, so I have accepted anything < 0.100 for myself since I still have a prostate. I also look at Alkaline Phosphates since the cancer went to my bone only. When I get my 3 month checkup as soon as I see my Alkaline Phosphates with very low values such as 37, 38, 39, or 40 I know everything is good.

I also watch my ALP closely, but — in case anyone's nervous — as a layperson I understand that it's a non-specific indicator, so rising ALP doesn't necessarily mean your cancer's spreading

My ALP was initially borderline-high after spinal surgery (and the drilling and insertion of rods to keep my spine from collapsing), then came down to lowish normal as the bones healed. ALP can also spike with normal bone stresses and fractures, celiac disease, liver disease, or even pregnancy (not too relevant here 🙂).

You are correct. It s elevated also after something like removing a Gall bladder. In my case, the cancer in my bone was growing and substantially raised my ALP way outside of normal. May I ask why you had spine surgery? Was it due to treatment of prostate cancer.

Yes. I discovered the (aggressive type of) prostate cancer at age 56 only because it had metastasised to my thoracic spine and was rapidly compressing my spinal cord. I had more and more trouble balancing, and then suddenly became paraplegic after 5 days in hospital, so they rushed me onto the table for emergency debulking surgery (followed later by radiation, ADT, and ARSI).

I'm coming up on 32 months now with PSA still undetectable (< 0.01), and my onco team is very optimistic. I can also walk again, after a lot of physio.