ROB’S PROSTATE CANCER JOURNEY SO FAR…
I thought I would do a shortish write up of my Prostate Cancer (PCa) journey, principally to help inform others. I would add that getting informed is very time consuming and can be overwhelming. The upside is that you are better placed to make objective decisions and be able to put things into context, in particular, what are termed “side effects”, namely the likelihood of erectile dysfunction and incontinence (both front and back). These can be hugely life changing in a bad way and can diminish if not ruin your quality of life; they are also mainly irreversible. The other aspect, for me at least, was to have an awareness of how to minimise the chances of recurrence.
From my late 40s I always had an annual PSA test and the occasional finger test. Everything was always perfect; really low PSA of about 0.7 and no hard, irregular shaped bumps detected by the finger test nor an enlarged prostate. This was the case into my 60s. I got a bit blasé and thought of it as a formality. My PSA was at about the 2.9 level and with selling our house I didn’t have a PSA for about 3 years. Tara, my wife, chivvied me a and I went for a test in March 2021 (aged 67). Not good news. PSA was above the magic 4.0 at 5.96 and worse, my Free PSA, a key marker, was at well below the 25% limit at 7.5%. This is another indicator of possible cancer. Also, the MRI I had in April showed I had a PIRAD 4 tumour in my prostate.
My doctor recommended a urologist and Tara and I went along. The long and the short was that he recommended I should have a biopsy, as it was likely that I had cancer for which he also recommended radioactive seeding. When I raised the issue of what could go wrong, he was vague and sidestepped the questions: on second thoughts my feeling was that it was more than sidestepping and more like active concealment. I had to look for myself (no one else was going to) and see what other treatments there were and how the likelihood of their side effects compared to the standard treatments (prostatectomy and radioactive seeding).
Having done a lot of reading and seen the horrible adverse effects and how many suffered from them, I knew that there was no way that with a PSA of 5.96 and a PIRAD of 4 that I was going for either a prostate removal (cleverly, I think, called da Vinci robotic surgery – between that famous name and that it is robotic,the subliminal implication could well be to make us feel that it is really safe) or radiotherapy.
VALUES AND INFORMATION
Assessing the risk of something is key, especially when it can have a significant adverse effect, regardless of the likelihood. I can say that in my professional capacity, as a member of the Institute of Risk Management (yes, really). This is even more important if the decision is irreversible (e.g. prostate removal or radioactive seeding). Some key criteria need to be met.
1. That there is transparency (full disclosure of all relevant information)
2. The risks are put in context. (In this case, the likelihood of “side effects”, their severity and the possible effect on your quality of life)
3. Those advising are independent. (Surgeons are dependent on their speciality for their livelihood and are therefore always conflicted to a certain extent, especially if there are alternative treatments including “active monitoring”).
TRANSPARENCY AND DEPENDENCY
Prostate Cancer is not good, but it is not usually as aggressive or as quick as other cancers. The problem
is that the side effects (far too mild a term in my view) can ruin your quality of life and are pretty much irreversible. What can go wrong? It is important to know both what the “side effects” can really mean for your quality of life (how serious they can be) and the likelihood of you getting them. From my experience, what a urologist tells you about prostatectomies and radiation treatment (such as seeding) sidesteps the hard truths of the figures. They can also try and get you to make a quick decision (48 hours) when you are still in shock about the fact you have cancer.
Firstly, and possibly best known is erectile dysfunction (not being able to have an erection easily or at all). Well, (I was told) we have a special department here (more business?) and of course you can use a pump; then there is Viagra and much more…That is normally because the NVBs (Neurovascular Bundles) that control erections (one on each side of the prostate) can be easily damaged. I understand you only need one for it to work properly. I believe I now only have one and am happy to say everything works perfectly.
Let’s then move on to incontinence. Well, it can range from a bit of leakage all the way to real incontinence (no control). It doesn’t stop there though. You can have it with your pooping as well. It can be so bad that you need to have a colostomy bag, while your bowels heal; that is if they can. Of course, if you look at where your prostate is, you will see it sits under your bladder and backs onto your rectum (hence the effectiveness of the finger test). Not a lot needs to go wrong for the effects to be horrendous and irreversible.
Erectile disfunction and urinary incontinence can also happen, even if only for a few weeks/months after a biopsy, where they stick a needle into your prostate 12 times or even more. So, as many do, back to nappies. Yes, really!! As with all biopsies there is also the risk of the cancer cells being spread.
If your dentist is overly money centric, you might have a few more fillings, crowns and the like you didn’t really need and be a bit poorer, but your quality of life is unlikely to be affected. If on the other hand, your urologist persuades you to have your prostate out when there are less radical and equally or more effective alternatives, you can end up with a lot of problems you can do nothing about. But do the urologists talk to you about the risks and show you their own results? The two I saw didn’t. Both urologists I saw said that whilst side effects were possible, they were unlikely to be severe (not what I have read or heard). There was no information as to the outcome of the procedures they had performed, or at least that they were willing to share. It is hard to think that the information was not in their files if they really wanted to look. So, no information was forthcoming on how many of their patients suffered various “adverse effects” (better than ‘side-effects’, I think).
There are different therapies/treatment for most cancers with new ones coming along all the time. The conundrum for the practioners who make a living from a particular one or even two, such as prostatectomy or radiation therapy, is that if something better comes along, even though it might be better for the patient, it could mean that they could have significantly reduced earnings, or even none at all, if their speciality is completely superseded.
So, the key information I think one needs to make an informed decision is:
- What treatments are available (even if you, Mr Urologist, don’t do them)
- What is the likelihood of the various adverse effects from the treatment they are suggesting
- What are their own statistics
- Try and understand how bad the side effects really are by speaking to someone who has the misfortune of having one or more and for instance, has to wear nappies
- What are the chances of recurrence
- What lifestyle changes can you make that will help. One urologist ridiculed me for suggesting lifestyle changes could make any difference! To find out more, read Dr Geo Espinosa’s excellent book “Thrive, don’t only Survive” and listen to his podcasts.
What is also helpful, is to know the follow up procedures to make sure the cancer has indeed gone and has not returned. Most will talk about quarterly PSAs, but nothing else. Free PSA, PSA density, important though they are, were never mentioned to me. There are also new tests coming on to the market all the time. If the post operation testing/monitoring is not adequate, you will not know how successful your treatment/procedure was or wasn’t or how you are doing. Recurrence, even after a successful treatment, is I think about 30% or more within 5 years, depending on the treatment (prostatectomy, HIFU or radiation therapy). Of course, that does not allow for age, the aggressiveness of the cancer or differentiating between those who made lifestyle changes and those who did not.
THE JOURNEY STARTS
Anyhow I came across Photodynamic Laser Therapy followed by External Hyperthermia at the St Georg Klinik at Bad Aibling in Germany. The concept is that the photodynamic infusion weakens the cancer cells and then the laser kills them off. They told me that they had a good success rate (I should have asked for information to support this statement, but did not) and that equally importantly the instances of incontinence and erectile dysfunction were super low. I did speak to someone who had had the treatment and was cancer free for which he was very thankful. He was, though, very concerned about the six months of androgen therapy he had afterwards to reduce his testosterone, as it had really reduced his muscle mass. They had put him on androgen therapy because he had had a biopsy beforehand. As an aside, I am not a fan of androgen therapy, as it can result in significant muscle and bone loss. Sarcopenia, which is loss of muscle, is a key cause of death as we get older. See my links in “Helpful Information” at the end. Fall, break/twist something; bed ridden for 2 weeks plus and loss of more muscle and maybe not being able to walk at all after that.
For some the insertion of a catheter with the laser inside it was a mere inconvenience. Sadly, for me it was like someone sticking a knitting needle up there…. say no more. Anyhow, the treatment seemed to go well. I was not put on Androgen Therapy as I had not had a biopsy.
My follow-up MRI in January 2022 came as a shock, as it still had me with a PIRAD 4 (the same as in March 2021). Regarding the MRI still showing me having cancer St Georg’s comment was, “your PSMA-PET-CT showed an activity of the tumor cells in the prostate, no metastasis”. Of course, the point is that you want to get rid of the tumour before it metastasizes! The reason given for the treatment failing was “The laser therapy was not strong enough”, which I still don’t understand. Machineguns kill. If you shoot someone with a machinegun they die. If they are still alive, you missed them. So, I am left wondering if the laser was misplaced, either because the measurements were wrong, a fault with the equipment or something else. I don’t know. I did know that I needed to find another solution. I was never told that the laser in some cases was not strong enough, whatever that means, as my tumour was not large (yet).
THE JOURNEY CONTINUES
After much research (Tara and I put our lives on hold to read everything we could on the subject). I came across IRE (Irreversible Electroporation). The Trade name is NanoKnife. A number of electrodes (4 to 7 depending on the size and location of the cancer) are inserted into your perineum (between your testicles and anus) and positioned around the tumour in your prostate. For a full and accurate description go to www.vitusprostate.com/en/ An electric current is then passed through the electrodes killing off the cancer cells in between, but leaving the other structures intact. According to the Vitus site, the tumour proteins released during NanoKnife treatment also help one’s immune system fight any other tumours.
The Vitus site has information on the side effects based on tumour size and Gleason score which makes interesting reading https://vitusprostate.com/en/media/downloads/
I found the articles below helpful:
- “2019 Prostate Cancer Treatment with Irreversible Electroporation Safety Efficacy and
clinical experience in 471 treatments”
- VITUS Summary of 429 patient data
- NanoKnife IRE for Prostate Cancer RSNA presentation 2016
So, I went to the Vitus clinic in Frankfurt in March ahead of the procedure scheduled for April, so they could do a rectal MRI scan and assess the size and location(s) of the tumour(s). My cancer had now become a PIRAD 5 (had got worse) despite the soothing words from St Georg. I also had a small PIRAD 3 which I had not known about. I agreed to go ahead with the NanoKnife procedure. I was lucky that nothing had spread to my lymphs or seminal ducts. As an aside the NanoKnife procedure can be repeated as often as necessary in case of recurrence. They carried out the procedure as planned in April. I had a catheter for 2
weeks, but on taking it out I had a blockage because of an infection and had a new one inserted for another week. I won’t talk about catheters here. Just to say they impinge on your life, especially if you are active. Since being catheter free, everything has gone really well. The blood in the urine and all that cleared up and very very very thankfully I am as good as, if not better than before. In July (3 months later), I had a PSA test that was down to 0.86 (my prostate, though, had been reduced to 12cc from about 30cc before, so a reduction in PSA was to be expected) and the July rectal MRI showed that all was good. The radiologist did say I had been very lucky though and only just caught it in time. Over half of my prostate has been zapped, but that was normal as they build in a safety zone round the cancer when they electroporate it. As of writing (October 2022, 6 months after the procedure) my PSA is down to 0.27 and my free PSA to 0.10. (37%). The MRI was good too: all clear. There is what they think is a small scar now that wasn’t there before the procedure and have labelled a PIRAD 2. So all really good so far. I have made changes to all aspects of my life from eating, drinking, movement, exercise and stress management (still in progress). There is no way I want a recurrence. For me the odd extra effort to live healthily significantly outweighs what it would be like to live with incontinence, erectile dysfunction, wearing nappies and the rest. Well, I guess it can be the difference between living and existing. But we all have that choice. Which is why annual prostate testing is key, as in most cases, if caught early, it can be zapped with no adverse effects.
HELPFUL INFORMATION – CANCER
- I hope what I have listed below might be of help. I think the first thing is to understand what treatment options are available, which most medical professionals won’t tell you about because of their vested interest in their own speciality. Then apart from the initial treatment options and their possible “adverse effects”, you can explore the lifestyle options that can help minimise recurrence and keep you active in your later years.
- The book by Jane McClelland is both moving and informative. It shows the orthodoxy of many doctors and their unwillingness to look at alternatives. Her site is https://www.howtostarvecancer.com Her story is inspirational. She also has a reasonably priced course.
- “Prostate Cancer. Why we get it and What to do about it!” by Peter Starr.
https://survivingprostatecancer.org/shop/ Very informative. I got the DVD as well.
- Dr Li’s book “Eat to Beat Disease” is excellent. https://www.amazon.co.uk/Eat-Beat-Diseasescienceitself/dp/1785042157/ref=sr 1 1?crid=2DN332FMO3E6R&keywords=dr+li&qid=1658573540&sprefix=dr+li%2Caps%2C69&sr=8-1
- Whilst Dr Geo’s focus is prostate cancer, his suggestions as to lifestyle are, I believe, really applicable to keeping all cancers away. The book “Thrive, don’t only Survive” is short and a very worthwhile read. https://www.amazon.co.uk/ThriveDont-Only-Survive-Prostateebook/dp/B01BMZSMNS/ref=sr 1 2?crid=1Y5ZE4SCCMLHK&keywords=dr+geo&qid=1661246513&sprefix=dr+geo%2Caps%2C77&sr=8-2
- Dr Jockers has a Cancer Cleanse course https://drjockers.com/cancer-cleanse-program/
- Androgen Therapy:
a. This links takes you to a summary of a study on the beneficial effects of Citrus Pectin and the issues with Androgen therapy, especially if you are older.https://www.dreliaz.org/wp-content/uploads/2022/11/EMUC-Poster-2022 FINAL-1.pdf?utm source=Klaviyo&utm medium=campaign&utm campaign=cs nov22 prostate study announce&kx=HfoE0yBtDpXbbt3ovFiLmjcaNWchhqQbmWvutChjKk%3D.RZF75C
b. If you are interested in Citrus Pectin and similar go to:
- A couple of vg YouTubes from Dr Berg
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© TARA ALEX ZENKER • CREATED BY KERI WILLIAMS
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