photo of tyler seibert taken from providers.ucsd.edu
Aug 28, 2024, 19:19
Tyler Seibert: Patient perspective on Prostate Cancer
Tyler Seibert, Assistant Professor in the Division of Radiation Oncology, shared a post by Tony Collier, Prostate cancer survivor and Patient advocate on X:
“Patient perspective on Prostate Cancer from an inspirational man affected by this horrible disease.
We can do better. We have the tools to prevent metastatic disease.
And we need a better alternative to Androgen deprivation therapy.”
Quoting for post Tony Collier’s post :
“I’ve been told ‘at least you got the good cancer to get’ so I thought I’d do a about
what a stage 4 incurable cancer is really like and the impact on life.
Let’s start with the treatment for it which the mainstay of is removal of male hormone .
As men we need testosterone to drive everything we do in life.
Removal of it is chemical castration which has a profound effect on men.
Let’s think about impact/side effects.
Impact on mental health is huge. Suicide rates in men with PCa are higher than for all men.
No testosterone means you also get horrendous mood swings.
Fine one minute and depths of despair the next. Just imagine the impact on that for those around you.
Chemical castration also means you can kiss goodbye to erections. You also lose libido so never think about sex.
Just imagine the impact of that on the partners of men living with PCa.
Many relationships don’t survive because the partner can’t cope!
You also lose all your muscle mass, gain weight and develop often painful man boobs so your body image is in tatters as well as sexuality.
Bone density also reduces so you can very quickly end up with osteoporosis thanks to long term hormone therapy (chemical castration).
I have to have an infusion of Zoledronic acid every 12 weeks to try and stave this off. You lose body hair which acts as an insulator so .
You feel the cold a lot more but eh, you get hot sweats, hot flushes and night sweats which actually don’t help!
Not great compensation being like a menopausal woman but definitely more sympathetic to women going through menopause!
Fatigue is also awful.
One minute your battery is full, the next completely empty.
The financial impact is huge.
I estimate that it’s cost c. £300,000 to keep me alive for 7.25 years and there’s been a huge economic impact on my wife and I with my income dropping 80% .
Ultimately you face the prospect of a premature and painful death.
Please never tell a man living with advanced prostate cancer that “it’s the good cancer to get”.
The point of this thread is to get a strong message across about the horror of late diagnosis .
Prostate cancer caught early is entirely curable but caught late like mine and you’ve read the consequences.
If you’re in the higher risk groups please get a PSA blood test at your GP’s.
Know you risk with Prostate Cancer UK’s risk checker.”
Source: Tyler Seibert/X and Tony Collier/X