Terror. Ecstasy. Fight. Denial. Flight. Failure. Forgiveness. Reconciliation. Hope. Love. Peace
The scan had produced the goods. I felt vindicated for my stubborn refusal to concede the scan. A scan I had been promised. Reality. Truth is if I had not been promised it I would have not even been aware of it? Therefore not missed it if it had never came. Always keep your promises kids.
The scan was a success but was also a kick in the bollocks. Confirming cancer spread. It became (suddenly) real again. I had a cancerous growth. Terror. One fight over. Another to come. The fight for focused and not systemic radiotherapy. The fight to extend my life. I had a good case. Evidence.
The Christie, Manchester.
I was impressed by their positive action. They had come thru for me. I contacted them to cancel the scan (there are guidelines about how much nuclear medicine (isotope) can be administered within a body within a certain amount of time). I didn’t want to deprive another of a vital procedure. I did ask for a consultation to discus further treatment. They agreed.
The Christie. A work colleague had prostate cancer treatment via the Christie. A non surgical route. Radiotherapy, 66 Gy in 33 infractions. At the time he was working in Manchester, his daughter is a radiologist at the Christie. He made a choice based upon convenience and reputation, both of the Christie centre and a particular consultant, Dr Lauge.
At the time we had these conversations his treatment had been successful. He was (is) cancer free. He recommended Dr Lauge, at the Christie Centre to me.
The latest addition to my cancer team, Dr Eswar made the original referral, for a PSMA-PET scan. He had written to another colleague who turned out to be Dr Lauge. All good.
There were now two things now in play. A new line of ‘consultation’ had opened, a second opinion? Alongside my existing cancer team. I received a further appointment with Dr Eswar, I already had an appointment with Dr Lauge. I decided to accept both. I would explore the pros and cons of focused proton beam (SABR) radiotherapy compared with systemic prostrate bed radiotherapy on two fronts.
The Christie appointment was first with an Australian junior doctor via Dr Lauges clinic. I had already pre-delivered my ‘Ozzy‘ scans, report and results to Broadgreen, Royal Liverpool NHS trust who uploaded all onto the NHS database. Any relevant clinician could now access them from anywhere in the world. The Christie consultant had already examined the scans, along with Dr Lauge prior to my appointment.
The consultant was Australian. She was very curious as to how and why I had ended up with Australian scans? Understandable. Her (their) recommendation was standard prostate radiotherapy. They would not be prepared to perform SABR. She explained the logic behind their decisions. I did not get to meet Dr Lauge.
My next Liverpool consultation, Dr Eswars Clinic, Clatterbridge Cancer Centre. I met with a junior doctor. She discussed my scan findings and potential radiotherapy options. The difficulty with SABR radiotherapy was the tumor location. Lymph nodes are like bunches of grapes hanging from vines. They move. As such to zap a single node is difficult. This type of radiotherapy is that intense that if the beam missed, and hit something else, bowel, bladder etc. then the result consequences might be worse than the objective.
A final decision would be made by the SABR team. I left feeling that is that (for all the right reasons) no SABR. Two weeks later I was contacted. The team had met and they had decided to go ahead. Surprised. Hope. Next steps consultation with SABR team.
I did not think it would happen. Christie had refused, why would Clatterbridge differ?
Why did they? This is a relatively new treatment within prostate cancer. I think they fancied the practice? It was a challenge. A chance to see how ‘far’ they could take this procedure. They had a willing patient. Win. Win.
The SABR consultation was essentially a form filling exercise. My indemnifying them against litigation if things did not go as (hoped) planned. The rest of the day was spent making a mould of my lower torso. For me to lay in when performing the proton beam procedure. Several additional scans (not PSMA). Three tattoos (target marks) onto my pelvic area. 60 years of age and having my first (three) tatoos.
My whole demeanor changed. Something was actually happening. I had spent the previous 18 months watching and waiting. Watching my cancer grow and spread, waiting to die? I know I know I know it is not actually THAT but, mentally, that’s what it feels like? Helplessness. Punctuated by terror and scanxiety.
The worse times (for me) are the waiting times
The SABR radiotherapy took place over three days. Three x 45 minute sessions most of which is taken up by the aligning of your arse, (in the mould), cross referenced with your new tattoos, synchronizing with the proton beam and the latest MRI scans. The Zap itself takes 5, 10 minutes at most. All done and dusted mid december 2019 and in time to go ahead with a trip to Nante, France, the home of the Giants, Royal Deluxe.
Side effects. I was told to expect some. Individual. Unpredictable. Results. I was told to expect an eventual not instant improvement as indicated by a PSA test. The desired outcome was a reduced PSA followed by further reductions for ,potentially, as long as twelve months, the expected potency duration for proton beam radiotherapy.
I was excited by the prospects of my first, post treatment PSA Test. Scanxiety? Yes but, for the first time, optimistic scanxiety. March, 2020 almost the anniversary of my surgery in 2017. I have a system for PSA results. Scanxiety. My very first ‘results day’ I got that anxious when hearing the results that I did not handle the precious consultation very well. I did not fully understand, remember much of what was said. I did not ask many of the questions I had about my own research, treatment. Vital questions that fell by the wayside. Strongly recommended that you have somebody with you during every ‘meeting’ even the seemingly less important ones.
Having somebody with you is not always possible. Work. Life. Time.
My system to manage this is this. All appointments are proceeded by PSA blood tests. The forms are sent along with the appointments. If not you can get them (or alternative/additional blood forms) from your GP. If they come from your GP they will automatically include them with the results. They will be ‘copied’ in along with your cancer consultant. Regardless, they all end up on your medical record on an NHS database. All relevant clinicians (including your GP) can access these.
I have the test. three days later I call my GP and request an appointment to discuss PSA test results. Currently this is via telephone. Prior to Covid, I would visit my GP he would break the news to me. Any disappointment, anxiety, frustration was dealt with over the following few days. This way, when I have any specialists consultations I already know my results. No shockers. I am able to compose myself and get exactly what I need from my consultations even when I am alone.
I was present for the results of my first PSA post radiotherapy that I had fought a war to receive already knowing what they were. I had been disappointed. There was no change. No decrease and no increase from the previous. They were disappointed (I could tell). Everybody had taken a gamble with this. A leap of faith. The hope of further establishing an alternative treatment thus far unproven. A chance to help. To improve.
It is not over until the fat lady sings? The radiotherapy (now inside my body) would still be active and continue ‘working’ for, potentially, another 8-9 months. The next PSA could reveal a drop. Scanxiety. Sadly not, nor the next or the next. 12 months on, an MRI reveals the tumor has reduced. The proton beam therapy had done (some) of what was intended. Not all. My PSA has returned to the post radiotherapy profile.
Then COVID happens. A game changer (for everyone).
Next steps. Next Fight.
There has been no hint of additional (of any type) radiotherapy. I guess there is only so much the body can take. The good news is there are no catastrophic side effects from the last. The growth has reduced (confirmed). Consultant (appointments) are telephone only and few and far between. The plan was to continue to watch and wait and then once a trigger point is reached to proceed with the next systemic treatment. Hormone Therapy.
One of the big three. Surgery. Radiotherapy. Hormone (& Chemo) therapy. Is often adopted as the first choice, front line first option, preferable by some to surgery and radiotherapy. Essentially, hormone therapy controls the amount of testosterone in the body. Cancer likes testosterone. Reduce this and delay the spread. It is not a cure option. It is a delay option. The two main strategies are go early, blitz it early on, get on the front foot straight away? Or wait. Wait until it reaches a certain level then go all in.
Both strategies are informed by previous (cases). Which suggest that the end outcome is (on average) the same. Life expectancy (on average) is the same either way. The main rationale for the choice, early or late, is quality of life. Side effects of hormone therapy are completely individual. Everybody reacts differently.
Quality of life. I have general poor health, Multiple conditions with multiple treatments. Each condition (treatment) has its own side effects. Do I really need to add another set of debilitating, potentially, life changing side effects. Quality of life.
If all roads lead to Rome anyway? Why ‘go early’? Why not go late(r)?
Unfortunately there is another price to pay. Late(r) means more inactivity. I am not good with inactivity. Alternatives? Research.
Since lockdown I have had no face to face consultations. For the past eleven months I have been watching and waiting. An agreed trigger point for commencement of further ‘active’ systemic treatment (hormone therapy) passed six months ago. Two scheduled consultations were cancelled, one (from two), re-arranged as a telephone appointment with a specialist cancer nurse (not Dr Eswar).
Specialist Nurse. I was brushing my teeth and my back went. Completely out of the blue. That simple. Pain like never before. Instant collapse to my knees. I could hardly breath nevermind scream for help. Straight to A&E. X-rays. Examination. Pain killers.
Released. GP referral to a back specialist. MRI. Consultation. The consultant was with a specialist nurse. I was disappointed. Angry. I pay my taxes. Where is the expert in the room? He sensed my disappointment. He has probably done this dance on several occasions. Having to justify himself.
I learn’t a lot over the course of the following 12 months of attending the back clinic. For many things the specialist nurse is more effective than the consultant? They are consonantly training, studying, researching (to further themselves), they do all of the practical work of a consultant and much f the administrative ‘donkey work’. They have all of the first hand contacts and access to all of the important networks. They know exactly who to speak to and when. They can (and do) unlock pathways (for you). They are also bang up-to-date with the most effective (ne w), treatments available. Make friends with your specialist nurse. Friends will help you. You will never be a friend of your consultant, especially if he’s a mister.
I have a specialist nurse consultation next week. I will call my GP and have my PSA results a few days before. I am not expecting any surprises (fingers crossed). I expect my PSA profile to be as usual (30% increase within 3 months). I am currently catching up on, re-reading my own research into the different types of hormone therapies, side effects etc. Possible, new alternatives (that I wasn’t already aware of) and complimentary co-insideal therapies, treatments for example chemo therapy.
There is now comprehensive research that suggests that hormone therapy in conjunction with chemo therapy administered ‘early’ can extend life expectancy for an additional 12-17 months. Historically, Chemo therapy comes after (all) Hormone therapy has ceased to work (hormone resistant advanced prostate cancer)? Chemo is only introduced when patients became hormone-resistant, a last chance saloon life extending finale. I am, as I write this, preparing my list of questions for my ‘Advanced Nurse Practitioner’ follow up (telephone) appointment next week (17/2/21).
New research shows that the drug enzalutamide can extend survival for men newly diagnosed with advanced prostate cancer compared to taking hormone therapy alone.
Currently in the UK, men diagnosed with advanced prostate cancer are given hormone therapy together with docetaxel chemotherapy. A second therapy, Abiraterone, also similarly benefits these men, however it is still being appraised for this use on the NHS.
Enzalutamide, which is already licenced and available on the NHS for men who are resistant to hormone therapy, could be another treatment option for this group of men.
Results released at the ESMO 2019 conference in Barcelona showed targeted breast and ovarian cancer drug olaparib can in some cases slow the progression of advanced prostate cancer.
NHS England has announced that men newly diagnosed with advanced prostate cancer will now get immediate access to docetaxel chemotherapy, which could extend their lives by an average of 15-17 months.
Telephone Appointments. Good. Bad?
I have several illnesses. I have quite a few appointments. I find Telephone Appointments to be more effective. They are more relaxed due to familiarity of surroundings and there is no nervousness that happens, involuntarily, the second you enter a hospital. The conversations are ‘conversations’ not just one way, two-way. Control is also (more) two-way. I have a ‘good’ telephone manner, I am comfortable talking on the phone. Some Doctors are not good at communication (generally). More so the older the doctor. Younger doctors are better communicators. Good. Telephone communication is a great equaliser.
I have spent this past week, prior to my next appointment, brushing up on prostate cancer research with a focus on treatment, new treatments, improvement in treatment, prostate cancer trials, results of previous trials, new trails, availability and eligibility of trails.
I used to research this type of thing more often. Too often. I learn’t to stop myself. It had become counter productive. Desperate. Frustrating (when I found something for example in the US, that I could never access). I have learn’t to hold back. Quality over quantity – time is precious and it is important to make the absolute most of it. Priorities.
I have found many positive things thru (my own) research. There are many first-hand contacts available. Advice from experts in the field (often specialist nurses) who are extremely helpful. Current. Up-to-date.Nice people ‘human’. Trained to help. Happy to help. All of the household name cancer charities and trusts operate such services. I have never been disappointed when I have used any such service.
An important thing I stumbled upon soon after surgery, McMillan offer a cancer buddy service. They hook you up with somebody with an as similar as available cancer profile as yourself. You get to talk with someone in the exact same place as yourself. No matter how much somebody loves, cares for you, no matter how intentioned they are, unless they have or are walking in your shoes, they ‘don’t really know how you feel? How could they? This can be problematic, negative and destructive within important relationships? An opportunity to talk, discuss with a cancer buddy could be invaluable. Priceless.
Treatment Strategy. Research
I will be asking if there might be an opportunity for an additional PSMA scan (and/or other scans), to inform treatment going forward?
Treatment choices – is there an option for further Radiotherapy? What are the options for Hormone therapies (there are so many to choose from administered in many ways including, injection, tablet, patches, daily, weekly, monthly, 3 monthly). I want to understand the pros and cons and also the side effects. Chemo therapies (multiple options, as above, but also including infusion (a drip feed), Hormone in-conjunction with Chemo, the STAMPEDE Research Study Research, pros, cons, whys or why nots?
Until recently, docetaxel chemotherapy had only been offered to men with advanced prostate cancer after hormone treatment has stopped working. But the results of the STAMPEDE trial demonstrated the remarkable benefits of introducing the treatment alongside hormone therapy. NHS England would only review the evidence. This finally happened in December 2019 in the Lancet. Then thanks to mounting pressure from us, clinicians, and many men who shared their stories, NHS England made sure docetaxel chemotherapy was reviewed in the quickest timeframe possible.
“The general availability of this treatment in England for advanced prostate cancer sufferers is fantastic news,” said Toby, from Devon, who discovered he had prostate cancer that had spread to his lymph nodes and local bones last year (this could easily be myself)? “When on average people in my situation can expect to die from the cancer within a handful of years, being given the chance to extend our active lives by another 15 months or so is a really big deal.
“That’s an extra year to be able to be with my family, enjoying my new grandchildren growing up and finishing off my life’s work. This is a huge victory for all of us who’ve been campaigning to get the NHS to fund this important and affordable new treatment.”
A vital question for me is – What is the prognosis for doing nothing. No active treatment. Just stop and let things take their course. The ‘all roads lead to Rome’ strategy. How long?
Latest (other) Developments – new combinations of life extending drugs have and are becoming widely available via NHS. There is research taking place examining DNA, geno treatments. It is unlikely (unless your name is Bill Turnbull or Stephen Fry) that you can gain access. However, it is worth asking the questions? Fight. Hope. Life.
The revolutionary ADRRAD trial turns conventional thinking about advanced prostate cancer on its head, attempting to overcome a disease that’s considered terminal.
There is substantial research surrounding hereditary, genno disposition, a person being (naturally more) hereditarily, disposed to contracting certain types of cancers. At this point it is not confirmed that if you have certain gene defects that you will definitely contract, an associated, cancer in the future, however, it is confirmed that you definitely have more chance of contracting such cancers. Definitely more chance. Forewarned is forearmed.
How can I be tested for BRCA 1 and 2 mutations?
Men with a strong family history of breast, ovarian or prostate cancer, or who have a family member with a BRCA mutation can be referred for genetic testing on the NHS, but this isn’t available everywhere in the UK. There are also private clinics that don’t require a GP referral. Private options are readily available, simple and can be relatively inexpensive – I have just signed up for ‘Valentines Day’ Special offer – two tests, myself and the wife for just over £200. This test also includes ancestry profiling.
The IMPACT clinical trial is happening at the moment, and is investigating whether using the PSA test to screen for prostate cancer would be good for men with a BRCA1 or 2 mutation. It’s also testing how BRCA mutations affect the predicted outcome of a man’s prostate cancer. Early results suggest that regular PSA testing may be beneficial for men with BRCA. This is of particular significance for myself, to potentially help protect my son and grandson. Forewarned is forearmed.
Prostvac-VF is a type of immunotherapy. This time, the treatment works by tricking the immune system into thinking it’s a virus, which immune cells are programmed to respond to. The scientists who invented it also inserted the PSA gene into the virus. So when it’s injected into the patient, the virus starts to produce PSA. This tricks the immune system into killing anything producing PSA. Because prostate cancer cells produce so much PSA, the immune cells attack them.
Prostvac-VF has so far been tested in phase two clinical trials, where it had some promising results. Although it didn’t make a difference to the length of time it took for men’s prostate cancer to start growing again, overall, men given Prostvac-VF lived longer than men who didn’t have the treatment.
GVAX is different again. It’s a whole-cell vaccine. This means it’s made from cancer cells which have been exposed to high levels of radiation so that they’re not dangerous anymore. The cells have also been modified to express high levels of a protein we mentioned above called GM-CSF, which stimulates the immune system to attack.
The reason cancer cells are used is because they produce the same proteins as the original prostate cancer. So the GM-CSF in the vaccine stimulates the immune cells to specifically attack cancer cells expressing these proteins. Hence they will begin to attack prostate cancer cells as well.
Unfortunately, GVAX didn’t do well in two phase three clinical trials, which were stopped early. It may still be useful in combination with other treatments though, but we won’t be sure about this until some more tests have been done.
Too much information?
So much to consider? For me the genno research is the future, not just for prostate cancer but for many cancers and other diseases. As technology advances we are heading for a future where we will be able to test for and eradicate ‘cancer genes’ in embryos. No cancer. Currently, my priorities are to do everything possible to protect my son and now grandson. I was told I was young at 56 to contract advanced prostate cancer. Truth is men, some much younger than 56 are dying from prostate cancer every day.
There are things we CAN do Now
A typical hereditary breast cancer or prostate cancer test looks at 15 genes variants associated with breast, ovarian and prostate cancers, this includes BRCA1, BRCA2 and PALB2 (a gene associated with BRCA 2) and currently costs £330+vat.
Another hereditary cancer test I found, looks at 98 different gene variants associated with 25 hereditary cancers such as breast, ovarian, prostate, bowel, skin and pancreatic cancers (this includes BRCA1/2 and PALB2 also) and currently costs £415+vat.
The results are always given by a doctor, either your own doctor, or the test provider can refer you to a doctor who uses that test. The doctor and geneticist will charge an additional fee (unknown) for a phone consultation to go through your results.
Both these tests are simple saliva based sent to you directly. You send the sample back and the results take up to 4 weeks www.myogenes.com
I also found a compatible, positively reviewed service for much less, approximately £149 per person. They offer intensives for additional, multiple tests and seasonal offers.
I have ordered this test. I will review it in due course
Thanks for reading.