Mega #prostatecancer thread ahead. Please read if this is about you and re-tweet as wide as you can to help men who may be just starting out on this frightening and unsettling journey.
I’ve lived with #prostatecancer for a little under 6 months and now, 3 weeks post-surgery, I want to share some insights that might help you if / when you embark on your own journey.
The first thing I want to say is this will not happen to every, single man - it may never happen to you. But #prostatecancer is a statistically significant killer of men so you need to take the threat seriously.
Straight up, you need to live well to reduce your risk of #prostatecancer, and, very importantly, to reduce the vascular risk factors that will have a major effect on you post-surgery – if it comes to that.
So give up the smokes, cut back on the booze, stay fit, lose weight, get in touch with your pelvic floor … more on all this later
Have your PSA (Prostate Specific Antigen) checked at least annually, starting from age 50 - possibly earlier if you have a family history of #prostatecancer. Early detection is key - get it early and this thing is beatable.
There is some degree of controversy over the accuracy of the PSA test – low readings have occurred in men later diagnosed with #prostatecancer and high readings found in men clear of any cancer. It is, however, the best early diagnostic tool currently available so do it.
If your PSA reaches abnormal levels (and there is debate on what constitutes normal and abnormal levels) it doesn’t mean you have #prostatecancer but it does mean it needs to be investigated and there is, potentially, a long road ahead.
Find a specialist and find the best you can. #prostatecancer is dealt with by a Urologist but a major lesson I learned is shop around until you find a specialist you trust and are comfortable with.
Do your research on this person – have they had per-reviewed papers published? What are their treatment (including surgery) success rates? Are they known and highly regarded nationally and internationally?
This brings up another lesson: get at least a 2nd opinion. Seek out 3rd and even 4th opinions if you feel the need.
In my case, the next step was doing a more detailed blood test to investigate the PSA readings on a deeper level. Once this came back confirming a high PSA which, taking my family history into account, started to raise the significant chance of cancer, it was time for an MRI
Get the MRI done by a team who have specialist training in imaging & interpreting prostate cancer.
In my case, the first MRI & report cleared me of cancer, my specialist at the time didn’t trust it so sent me to another imaging clinic for a 2nd MRI which came back with clear evidence of cancer
Even that MRI was dubious and, when I finally settled for a prostate cancer specialist in Australia (more on this later) he ordered another MRI that, finally, clearly pin-pointed the cancer and its extent
Up to now all of this is useful in detecting the likelihood of #prostatecancer but to do that definitively you’ll undergo a biopsy – generally a simple procedure in day surgery. The resulting pathology will confirm the presence or otherwise of cancer.
If present, pathology will rate the cancer on the Gleason’s Scale. Understand what this is, how it is calculated and what it means for you My cancer was a Gleason’s 7, comprised of a 3 + 4 (which is ‘better’ than a 4+3)
I can now only comment on lessons learned as result of preparing for and having surgery – which, in my case, was the only viable treatment option. So #prostatecancer surgery lessons below...
Don’t settle for a general urologist. Seek out and engage a urologist who specializes in prostate cancer and nothing else. After seeing two urologists in Hong Kong – one of whom is highly regarded – I opted for a third in Australia who does nothing but prostate cancer and...
in particular, is known internationally for his expertise in Robotic Assisted Laparoscopic Prostatectomy (RALP). It was also hugely comforting that this person lectures in analysis of #prostatecancer MRI – the last of three MRIs I had finally nailed it.
Quick layman’s explanation needed at this point: The prostate is surrounded by a kind of a cobweb of nerves that control erectile function and continence. It’s critical there is as little intra-surgical damage to these nerves as possible – for obvious reasons.
I consider I really dodged a bullet on this and this is why: surgery requiring radical prostatectomy comes with two major risks that are down to the accuracy & delicacy of the surgery and surgeon and can, potentially, have significant effects on the rest of your cancer-free life
They are incontinence and impotence – neither of which I was prepared to live with
While I’m not certain, I believe my Hong Kong specialist was not going to use RALP - at least he never mentioned it to me - and I formed the opinion he was going to remove my prostate with the old-school knife....
This would have caused significant damage to those critical neurovascular bundles and possibly accounts for why he kept advising me I’d have significant loss of function both in continence and potency
It was this, more than anything, that drove me home to Australia to seek out yet another opinion and I thank the Gods I did.
From the outset my new surgeon – the RALP expert (it is literally all he does) - reassured me he would do minimal harm to these all-important nerve bundles and that I would suffer little, if any impairment. And so it has proven to be – this, literally, is life saving for me
I can’t stress this enough. If its surgery for you, get it done by the very best RALP specialist you can find. They will not only accurately remove the cancerous prostate, they will cause minimal harm to those nerves & your post-surgery life will be all the better for it
At the beginning of this mega #prostatecancer thread I spoke about reducing your vascular risk factors and getting in touch with your pelvic floor. This is critical in maintaining good bladder control and erectile function.
The prostate specialist urologist should refer you to two important people once the decision for surgery has been taken...
The first is a physio who specializes in pre & post #prostatecancer surgery rehab. Do the exercises they set & do them religiously. This will greatly increase the chance you’ll be leak-free from Day 1 post removal of the catheter -which is usually in place for a week post-surgery
The second is a men’s sexual health physician who will discuss possible side effects of surgery and the treatment options.
It’s important to understand there will be an unavoidable side-effect of the removal of the prostate that you need to get your head around quickly and move on from – it took me longer to do that than I would have liked and, perhaps, I’m still not quite there...
However, seek the advice and adopt a penile rehab program under the guidance of this particular specialist
I’m in the happy position of being under doc’s orders that I have to work up a boner at least 3 times a week in order to maintain healthy blood flow to my guy and give him the best change of returning to his usual one-eyed dominance - that program starts tomorrow!
So, in short: stay / get fit, discuss all this with your GP, do your regular PSA tests, if diagnosed do your research, understand what is happening, get the best specialist you can find, go through the process and do it faithfully.
I consider the following to be two exceptional resources for you if you’re about to step into the ring against this brutal opponent: pcfa.org.au via @PCFA, and drmichaelgillman.com/page/fact-shee…
@PCFA I hope my journey and this huge, but important, thread, will be of some help to you and other men (and their partners) out there…. #prostatecancer END
