With many people being diagnosed in their early 40’s dont you think the medical community needs to change the narrative? Moreover it should be accorded the same treatment as breast cancer in terms of treatment s & screenings.
Just read about the 6 time Olympic medallist Sir Chris Hoy’s devastating terminal diagnosis of prostate cancer at 48. On the reddit sub there are many such stories of people being diagnosed in their 40s. The treatments we seem to have currently hormone therapy etc have been around for decades & if they result in castrate resistance soon are they really suitable for younger men? Yes Pluvicto is now available but is it really effective ? There is a support group for this treatment on Facebook & many of the accounts are heartbreaking . When is this widow maker disease going to get the attention it needs. Monday rant over. Good luck & good health to all
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I agree, many younger men are diagnosed with prostate cancer every year. Screening has to start earlier and I hope we find new therapies, too. On the other hand, when detected early, cure is possible. So screening remains key.
Malecare pioneered the concept that men diagnosed under the age of 50 benefit from their own support groups. Malecare has helped younger men since 1999. You are encouraged to participate in one of our online communities on this platform
Thank you Darryl & Malecare for all you do. This support group is amazing but much more needs to be done . When my husband was diagnosed I was in shock but most people were don’t worry its a slow growing cancer and most men die with it not of it. Thanks to this group I have learned so much and can ask the oncologist about various therapies.
I completely agree with everything you have written. I have read The Sunday Times article on Sir Chris. Both his father and grandfather had prostate cancer. It doesn't say if they passed from it but surely testing has to be mandatory from age 40 onwards. Particularly if family history.
I go to a very dark place when I consider my son's who are both in their 20s. Unfortunately I have no family history as I am adopted, so pc was a complete shock to me. There has to be a change worldwide in practice regarding testing.
I also agree on the development of new treatments with the chance to go for a cure rather than just ADT. I read the same Facebook pages for Pluvicto and it is no magic bullet alas. Indeed it seems to only work for approximately a third of patients.
I try not to rant and rage but early testing is the difference between life and death.
Couldn’t agree more - I’m one of those men and had to persuade my GP to give me a PSA test… it should be standard from before 50. And there really should be much more joined up thinking about treatments and an acknowledgement that APC is a different animal to PC. It’s needs a huge amount more focus and a huge amount more research… additionally, there is next to no reliable information on how to fight this disease using diet, exercise and supplements… we’re on our own in so many ways. Having said that, the NHS has been amazing, and for me, everything has happened quickly, but there are very clear limits to what they do.
Were very much on our own. That's what the number one thing this forum has taught me, advocate for yourself. The NHS has been amazing for me as well with regards to standard of care. Unfortunately they know that there is collateral by not testing, that is those of us diagnosed with Advanced Prostate Cancer straight off. I watched a lecture on utube by Chris Whitty, Chief Medical Advisor to a group of students in Cambridge and he basically admitted that the issue with not testing is that 10000 men a year in the UK are diagnosed 'too late'.
I would do something deeper honestly, something I am sure on the long run would also make any health system save money: a complete genetic panel! Of all genes also the ones that are (currently) of unknown significance. My father did not have any cancer, my mother had a small size breast cancer like 35 years ago (she is 95 and perfectly fine now), at that time they did not know that breast cancer could be related to prostate cancer as well. Not only, I do have an ATM mutation, my sisters and my brother don't. With the current knowledge, having that data available, any geneticist would tell you to check your PSA yearly from 40 if not 35 of age, instead of the standard 50.
I have checked it at 50...stage 4, metastatic, bummer...
There is a bill coming before the U.S.A.'s legislature (when they come back in session this year) about getting the insurance companies to provide for no co-pay for prostate cancer screening (for only demonstrably high-risk men; for women and breast cancer there already is no co-pay for screening tests.)
But it is a start. Co-pay seems to be a major barrier for men to get screened.
We are in Australia. We paid for MRI and PSMA PET scan in 2017, even though both cost two weeks wages. Worth the investment, to us. The U.S. system appears to be complicated.🥲
Pluvicto is available but it's not available on the NHS. Or am I mistaken?
I found it interesting that the PM and Wes Streeting gave their full support to Chris Hoy yet simultaneously they're in charge of a health system that won't pay for Pluvicto. Anyone else find that a strange position?
I'm not surprised at all. They are politicians. However, the pink v blue cancer care in the UK at least, is massively different. Can you imagine the outrage if ladies were not tested like men aren't. There is no anger, no movement. Us men just accept this as OK and normal. From what I read, in Europe, testing will soon be rolled out again. For now, the ladies in the UK are tested, the men are not.
Over the past 4 years some of the most outraged people I have seen write are the wives, girl friends, sisters and mothers who suddenly faced with a loved one with advanced prostate cancer cannot believe testing is not offered. It is what it is.
I understand the problem with testing is that it would produce hundreds of positive results and overwhelm the healthcare system. Testing men with a genetic background of prostate cancer skins looked a good idea though. It's complex stuff and I wouldn't attempt to say I know the answer.
But there is a sort of testing regime in place at the moment. You can book an appointment with your GP. That's what I did. Sadly, it was too late for any curative treatment but it's a start.
Its not only the testing , yes new therapies are in the works but the current ones ADT & the second line hormone therapy have been around for decades.PC which is thought to be an old mans disease was kind of neglected as researchers focused on other cancers. I have been on the reddit sub for more than 5 years ever since my SO was dxed at that time it had only a few members now it has grown exponentially and many of the guys are in their 40s thats not old by any means . If we lay people can realise that how come the medical fraternity has not realised this demographic change ?
So true, my husband was diagnosed at 51 however 11 of 12 cores gleason 8. It is clear he had it since his 40's but no testing!! His 2 uncles had it, now his nephew age 48 having surgery was caught 2 years ago!!! They must test earlier especially when in the family. judym
The medical community (including researchers) should make an all-out effort to find the root of the cause for PC or autoimmune disease as opposed to discovering new therapies/drugs. But guess which one is vastly more profitable - and thus which one will be done.
Not only the cause of PC also the cause of its reoccurrence. Prostate cancer is like Breast cancer they say . Well i have many friends & relatives who had breast cancer & have been treated successfully . On the other hand so many people on this forum & others seem to be battling constantly with reoccurrences & progression. Its no way the highly curable cancer instead its a terrible disease that hides & raises its ugly head ever so often . A friends father has just had a relapse 12 years after his surgery and now this 90 year old is back on treatment.
This is a subject close to my heart because I should’ve caught my disease way before it presented the type of treatments necessary and the challenges I faced today. There’s really no excuse for doctors not finding this disease early enough to treat it at any age with excellent results. Unfortunately, many times it is men that find all the excuses not to educate themselves and participate in the process of finding and curing this disease, if and when it presents.
For me the continuing use of PSA at 4.0 and reliance on digital rectal exams is part of the problem. This stone-age combination is invasive to most men, causing them to avoid examination, but also useless because it will not catch this disease in time and in all patients. In fact, waiting for PSA to rise too high is the number one cause of lawsuits for urologist today. But it gets worse.
There’s an entire movement today to pretend this disease doesn’t exist. There is a philosophy that says we’re putting men under stress by testing them for the presence of prostate cancer. There’s an ostrich like behavior that is developing in urology which says if we just stick our head in the sand, maybe this whole thing would just go away. If you think I’m kidding these are some posts that I made some time ago to this effect.
When I saw these articles, it made my head explode. It’s astonishing. That doctors would not actively participate with their patients in nudging and cajoling them to be more active in detecting this disease as early as possible borders on malpractice. For those men that have gone through this process, it’s important that we reach out to our siblings, our neighbors and friends, and tell them not to fall for this trap. This is a cancer, which is totally beatable and if caught early, can be walk away from with excellent results. So are there any recommendations?
Here are some closing thoughts and some ideas on how to proceed.Again from where I stand, there is absolutely no excuse to be caught with an advanced stage of prostate cancer in today’s medical environment. Barring lack of financial resources, which is a subject of another discussion, anyone with reasonable access to healthcare should be able to catch this disease before it wrecks your life. And yes, I know that the medical industry is expensive, but we have to place more emphasis on spending money wisely and testing for prostate cancer should be the most important thing for young men This is especially true if you have a family history. Here are some closing thoughts. Sorry for the long post and errors (phone). Rick.
Development of so many ways to test for various diseases including cancer. As in any diagnosis, the earlier the better. Why testing is such a discussion is beyond me. In my case my paternal grandmother passed when my father was 12 of ovarian cancer, my father and his oldest brother both had prostate cancer (both lived to 90). Fortunately insurance paid for full genetic testing and I have no mutations. My diagnosis was early (I was 59 with highest core Gleason 9). I have met men as young as 42 diagnosed with advanced prostate cancer and we all agree on one thing - be your own best advocate! Demand testing if you have a history within the family. As well, it is imperative to learn about your family history of disease and inform doctors of it. I took time when I was younger to track down as much medical information on both sides of my family and make it a point to inform my doctors. It includes diabetes on my mother's side that claimed my mother. I found when I turned 50 and had the full physical (my father was living with me) and doctors were amazed how I mirrored my father medically. I have no markers for diabetes, although my siblings both deal with it along with countless cousins and aunts and uncles. My father kept journals all his life and I have had every condition my father had within 3-5 years of my father. Know your family history - be your strongest advocate - stay informed!
@caltexman Terminal? Was that what you were told? My urologist broke the news to me using the word "incurable", which is far from "terminal". Always ask your doctor what a word that concerns you actually means. For instance I asked about "advanced" (means aggressive treatment is needed) and "high risk" (means high risk of spreading if not treated.) GL
"Just read about the 6 time Olympic medallist Sir Chris Hoy’s devastating terminal diagnosis of prostate cancer at 48." I responded to "terminal diagnosis". It may be a British doctor's opinion. I was not referring to my treatment which was never referred to as "terminal" or "incurable". "We are all dead in the long run" -John Maynard Keynes.
Every time I meet a man (including strangers) I mention that they should have their Psa tested if they are 45 or older. Based upon their quizzical look in their face I then have to explain why they should.
I'm still a goody two shoes even if I must say so myself.
Yes awareness has to increase massively. Its pink October - breast cancer month we all know this. How many of us know that September is Prostate cancer month?
My primary care Dr told me this week that most insurance companies are no longer covering a PSA test without some kind of secondary justification. My previous Dr that I left didn't order one for 5 years unbeknownst to me until I finally realized it wasn't on my results ( they always said we'll contact you if there's a problem with your bloodwork results) When I finally pushed for a test at 66 years old my PSA was 54 Stage 4 Gleason 8 and spread to my lymph nodes. I am so ANGRY that this wasn't caught sooner. It should have been part of my standard annual tests.
I agree. Remember the best selling author Vince Flynn was diagnosed with prostate cancer at 45 and died at 48?Younger getting diagnosed has the worst survival rate it seems.
PCa is probably going to appear in younger and younger men as time goes on. I'm particularly frustrated as mine might have been caught earlier, but the health providers attributed my symptoms to side effects from anxiety drugs. It was a spiked PSA that got us all on the right track. I felt too young for this malady (55), but reasoned it might "be the price" for particularly good health in most other areas. My primary concern is in getting some things done in the next five years that most men have already accomplished much earlier in their lives. At any rate, I'm wishing all the men here the best in their treatment and lives!
Thats exactly my point . If younger & younger men get diagnosed shouldn't newer therapies be researched to preserve life longer ? Do we want to lose a generation of young men? Right now we have surgery , radiation , salvage radiation & hormone manipulation followed by rounds of chemotherapy. Not including Pluvicto as i am not really convinced of it being effective. This disease has evolved a lot but therapies have not kept pace unfortunately
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help - prostate cancer with bone metastasis in bones - patient 70 years old - PERU
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