Confusing Messaging about Prostate Cancer

Yes, that's a serious problem. My oncology team told me that while the majority of prostate cancer is very slow-developing and hits people in old age, about 5% of cases are completely different: they're more likely to hit you young (late 40s to early 60s) and spread fast.

The fast-moving kind hits Black people disproportionately, but I'm not Black and was still diagnosed with it at age 56 with a spinal metastasis.

Some examples of well-known people who died young from the aggressive kinds of prostate cancer include the musicians Frank Zappa (age 52) and Johnny Ramone (age 55), the actors Bill Bixby (age 59) and James Michael Tyler ("Gunther" on Friends, age 59), and the Canadian politician Jack Layton (age 61) — I find that listing them as examples helps shift the conversation.

Fortunately, there are much-better treatments in the past few years (the reason I'm still here posting this), and I have a shot at making old age, but there's nothing "insignificant" about my cancer. It moved so fast that I went from a slight limp to paralyzed from the ribs down over 5 days in hospital as the metastasis compressed my spine, and it took me two years to get back to walking almost normally again.

We really need to educate the public about this.

I appreciate the question and understand your feelings. Personally, I reconcile the apparent disconnect by viewing everyone's case of prostate cancer as being unique. Out of the approx 30K men in America that die every year, there are some less than 50 years old and only living a few years after diagnosis. And there are others that have lived more than 15 years after diagnosis with varying degrees of life quality.

This topic is discussed often in many prostate cancer forums. One of the recurring themes that I read is how a person talks about their cancer to others and in many cases, patients only refer to their cancer as being "Stage 4 Cancer," because the population generally understands Stage 4 Cancer as being serious, with more knowledgable people understanding that it means metastatic and, in most cases, incurable.

No one but a PC patient and perhaps their immediate family can really understand what it means to live with incurable metastatic cancer. Often our relationships with some family members and friends grow stronger and often they grow more distant. We can only choose how to live the years we have remaining.

I take actions every day to fight the disease, especially in terms of my health (diet, exercise, etc), so that I have more years of life. But the disease does not define me. I am defined by the actions I take every day in all of my life roles as a husband, father, sibling, friend, etc.

Best wishes in your journey.

It is fair to say there is competing research in all areas of PC and filtering the noise in the pursuit of your best outcome is what most of us in this camp have struggled with at times. That said, I am a proponent of consulting with a competing surgeon and an oncologist who is truly up to speed on the latest protocols while also diving hard into the associated research. I've watched a number of our peers go the route of enjoying their current health as long as possible versus the route of treatment with mixed results. I'm a firm believer in doing what it takes to extend my time on earth...especially now that it is football season!

I would guess that certain stage 4 PCa s are treated differently depending on what part of the country you live in. All protocols are not the same= MO/RO s are making their best guess/ approaches in their minds: how to treat an individual patient. This is based on what I ve read on this forum over the past few months.

I try not to bring my diagnosis up in conversation, but sometimes it does. I mention I have prostate cancer and a couple have commented, well it could get worse, then I mention it's stage 4. I don't want to make people feel uncomfortable around me so I just go about my business. I don't understand how some can think of any type of cancer as not being too bad. Best to all.

The "good" part (?!?) about stage 4 prostate cancer is that it can sometimes be managed effectively without chemo, unlike many (most?) other cancers at stage 4.

But that's a pretty-small compensation, and as others have mentioned, in many cases chemo still is the best approach for their personal PCa.

You are a Gleason nine, that is very aggressive. With intraductal and cribriform it is even more aggressive.

I’m a Gleason seven 4+3 with almost 15 years since diagnosis. I did not have the problems you have but had surgery then radiation after a relapse and it has relapsed two more times since then. The latest drugs are keeping it down, but they only last so long before the cancer gets around it.

Your doctor is correct. You need to treat this aggressively or you are not gonna make it to five years.

If you want to speak to some people that really are experts in this area go to Ancan.org and attend one of their weekly meetings with the advanced prostate cancer group. They have doctors and other experts that have worked with people for almost 15 years and can tell you how you need to be aggressive and they will talk about it and why. They will also give you recommendations from people that have worked with similar cancer problems for many years.

PCa Provides a before and after chapter to my life story. The first 6.8 chapters (68 years) featured a fun loving, caring, family guy. This chapter, the last 3.9 years, features a caring, and being cared for, loving and being loved, guy whose family care for him, worries about him. My PCa bumper sticker would read "Advanced Prostate Cancer , Somedays are better than others, keep trying the best you can."

Yes, the uniqueness of each person and what/who you allow to define who you are seem important perspectives on the journey.
Thanks for sharing your story with us.

I was diagnosed Feb 2024. Had surgery March 2024. Will start 25 sessions radiation next week
My PCa song is Yesterday- "Yesterday. All my troubles seemed so far away. Now it looks as if they're here to stay..." My wife says I'm being a little dramatic. Lol