The Beginning Of A Metastatic Prostate Cancer Journey - Part 1 of 2
If you were new to this Advanced Prostate Cancer forum, then either you or a loved one has likely been diagnosed with metastatic prostate cancer. This is my own situation; I'm now almost 3 years in and doing pretty well!
During the first year after my diagnosis, I made some notes about useful things to know. I made these notes as a supplement to the things my doctors tell me and what you can usually get from various support groups and brochures.
These notes are not meant to be comprehensive for your entire metastatic prostate cancer journey; rather they are what I would have liked to have known at the beginning of my own journey.
Just FYI, I'm in Canada so insurance is probably a lot easier to work with. My diagnosis was in early 2022 as Stage IVb high-volume prostate cancer, metastasized esp. to my spine. I have three severely compromised vertebrae (all discovered via a backache!). I've learned a lot over the last almost three years about prostate cancer and its therapies. That's the topic of these two posts; the emotional and practical shock of the diagnosis for my family and me is separate.
So far I've had no surgery or radiation but my PSA is now zero and I have no disabilities. Aside from fatigue and inconvenience periodically for injections, and acknowledging that my life is probably foreshortened, life goes on. One thing I did learn through all this: "PCa" is crazy complicated. (Not everybody embraces complication.)
So here are the notes:
1) READ - If you're the type of person that likes to study, start reading.
2) COMPLICATED - prostate cancer is a very complicated process. There are no silver bullets.
3) DIFFERENT - the world of metastasized prostate cancer is very very different from the world of people with "just prostate cancer", where the cancer is still only found in the prostate. But because there are many more of the latter than the former, much of what you read will be about non-metastasized prostate cancer. I didn't realize that in beginning. One can waste a lot of time learning about things that are irrelevant for someone with metastatic prostate cancer. Also you will meet a lot of friends who say things like "oh my uncle lived for 20 years with prostate cancer". And you explain about metastasis. They will forget. They will not appreciate what you might be going through. Don't forget, this is the "Advanced Prostate Cancer" Forum.
4) THIS FORUM RESOURCE - there are people on this forum where it's worth reading all their older posts.
5) UNEVEN STANDARDS - it seems clear that standards of care for metastatic prostate cancer are very uneven across North America - there's even a well-known medical oncologist that laments that the adoption of the latest therapies is taking too long. This might affect you - if you have a physician that is a little out-of-date versus a physician that is right up-to-date! How will you know?
6) THE MOST IMPORTANT SPECIALIST - learning about the different medical care specialties relevant for prostate cancer care is very important. In particular you must have a medical oncologist. This is because of the nature of prostate cancer and where you can get the biggest leverage from therapy.
7) NATURAL CURES - every now and then we learn about somebody who lost a lot of time and rejected science and medicine in favor of herbal treatments or natural treatments or something. There may be some value in supplements for example in addition to standard of care, but time is of the essence and it would be a mistake to delay engaging with medicine.
8) POWERFUL NEW THERAPIES - look up "triplet therapy". Some practitioners will not suggest it to you. Triplet therapy (of one kind or another) means you add everything together to hammer the cancer all at once - the chemo, the "ADT" injection, and another class of "ARPI" drug or something else. You would need to be covered by insurance are special access for this. But also "doublet" therapy (two of the above) is an important consideration too.
9) SUGGESTIONS ONLY - these notes are all generic suggestions and not intended to be a recommendation of any kind specific to you.
10) YOUR OWN STYLE - a big question is whether you want to be involved in decision-making. You can just go with the recommendations of your physicians. Lots of people do. But consider becoming more informed - then you may be better able to decide if you have good doctors. And, when presented with a choice, you'll be more informed about the implications. The world of metastatic prostate cancer therapy is quite complex and doctors are making choices all the time.
11) EXERCISE - many participants in this forum highlight exercise. This is non-trivial - it's very important. But like everything, you have to understand timing and doing it correctly. I have cancer-driven severe spinal fracture risk and so there are exercises I can't do. I was shocked at how quickly one doctor explained to me that I had already started physical "deconditioning". It's hard to exercise but it's more important than I knew. And lurking in the background of course is sarcopenia, or loss of muscle mass. (And there is even evidence that exercise produces substances in the body that fight against prostate cancer!) Exercise!
12) SIDE EFFECTS - some people have lots of debilitating side effects from prostate cancer therapy and some have fewer side effects. This might seem like a trivial distinction. But for the men who have hot flashes every day, this side effect of ADT can become all-consuming. And it seems that such a situation that decision-making around therapy can become very much focused on quality of life (QoL) issues, very understandably, but which is separate from the primary question. (I'm fortunate not to have hot flashes.) Side effects from radiation are another example that can be very serious. The question of side effects is a huge and even complex issue, and can be confusing and even distracting. This can be a challenge from just getting through the day to engaging for major decisions.
13) "WHATEVER" - some things I don't worry about: "ED". I'd rather live longer. (Probably easier to say at my age 🙄)
14) THE INITIAL ROLLER COASTER - as it was explained to me, the objective when I first showed up was to stabilize the situation and tackle the immediate pain and the risk to my spinal cord. The ADT drug plus a strong steroid started to work almost immediately. This was supervised by an oncologist. I was given hydromorphone for pain. After not too long a period of time my PSA went down and my pain subsided and I could walk in a straight line again and life kind of sort of return to normalish. End of the short "phase 1". (~ 8 weeks for me, inc. all sorts of tests.) Then add additional therapies like chemo etc. I call that "ll)ww". (This was ~ 8 months for me.) Now you have your long-term therapy plan and you monitor things. I call this "phase 3" and we hope it goes on a long time. It's almost like prostate cancer has become chronic. (Your therapy will follow its own path.)
15) UNDERSTAND THE DIFFERENCE - some locales have a greater or a lesser emphasis on palliative care and quality of life. There may be also other kinds of care that are oriented towards improving health, such as an exercise program. These two philosophies are different. I'm not ready to "wind things down" yet!
18) LOTS OF WORK - all this cancer management takes a lot of time, even aside from questions of side effects, fatigue & disabilities.
19) TESTS & UNCERTAINTY - there will be lots of them. If you have to travel appointments, they take time. People on forums spend a lot of time discussing tests. Tests support decisions. But there's a lot of uncertainty in test data, the selection of tests that are done, and the decisions that are made on the basis of data and judgment. Sometimes people are surprised: everything is not cut and dried. There's also the cost factor - some tests are very expensive.
20) CLINICAL TRIALS - sometimes it's worth learning about various clinical trials which become the justifications for your doctors' recommendations. One well-known trial is STAMPEDE. Another is ARASENS. It's an open question as to whether trial participation is ultimately worthwhile for any given individual. There's a lot of what one might call "magical thinking" around trial participation.
21) INCONTINENCE & UROLOGY - a key aspect of quality of life! But my focus here is on medical oncology - with a focus on life expectancy, not specific organ functional problems.
SEE PART 2
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