Second Opinion – Second Visit

Today I have been back to The Rivers which is a private hospital for a consultation with the spinal specialist I saw on the 3rd of January.

Whole Spine

He was very good and had got hold of a copy of the MRI I had back in November and he showed us the MRI and explained what was going on, he went up and down my spine and we looked at the different vertebrae and talked about them. Overall when you look at the pictures the dark patches are not good and they show signs of cancer and the lighter ones are good and are stronger bones.

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I told him that I had the Vertebroplasty procedure last week and he thought that was a good idea and a good way forward, he thought there were lots of benefits to be had from that procedure and wholeheartedly agreed with it.

He did reiterate that going forward I will need to be very careful with what I’m doing and while the Vertebroplasty procedure will help the T12 vertebrae to some extent, other vertebrae are still at high risk.

When I see my Oncologist next week I need to ask about what can be done to strengthen the bones.  Zoledronic Acid is an option as are calcium supplements.

Three Years On

I can’t believe it has been over three years since I was first diagnosed with Advanced Prostate Cancer, it has been a fairly tough time with lots of up’s and down’s. I think the main thing that has kept me going is a positive attitude and the support of my wife and family and to them I say a big thank you.

The diagnosis I was initially given was.

  • Carcinoma of the Prostate T3b N1 M1 PSA 226 Gleason 9

Since then my PSA has been as low as 1.6 and as high as 1585.

In summary here is a list of the main cancer treatments I have been through. Alongside these there have been a number of other treatments to treat the side effects of the main treatment, Steroids for example.  Side effects have been tough at times and diverse, from minor to visits to A&E.

  • Hormone Therapy – Prostap Ongoing
  • Chemotherapy – Docetaxel
  • Radiotherapy – On Spine and Shoulder 3 times
  • Enzalutimide
  • Immunotherapy – Nivolumab and Ipilimumab
  • Chemotherapy – Cabazitaxel
  • Dexamethasone
  • Lutetium 177 – Current Treatment

Below is a list of the different scans and tests I have had over the past 3 years. For the blood tests I have written 42 at least, this is how many blood tests I have had at UCLH, on top of this I have had loads at PAH and with the GP, I would estimate that this figure is closer to 70 blood tests.

I believe to rest to be more accurate.

  • Blood Test 42 at least
  • Bone Scan 10
  • CT Scan 7
  • MRI 1
  • Ultrasound 1
  • Radiotherapy 12/3
  • Prostap Injection 10
  • PET Scan 1

And of course on top of this there have been the regular outpatients appointments and other trips to the hospital.  At times I have been to the hospital everyday for a week and at other times just a monthly visit.

Perhaps the worst trip was when I was hospitalised earlier this year with concerns around spinal cord compression.

I am really appreciative of the hospital staff and the service and support they provide, there have been hiccups but for the most part the service has been excellent and I feel lucky to be able to have this kind of service.

I am hopeful that the Lutetium is working as it should and I look forward to the future.

Late Night Phone Call

Out for a curry on Friday evening and I got a phone call from UCLH, the duty Oncology Doctor.

They said my XRAY and MRI had been reviewed by the neurosurgery team and that I would not need surgery but I would need a brace to support my spine.

So good news that surgery is not needed but so many other questions.

They said I would get another call on Monday to discuss things further.

They also mentioned a place in Stanmore, after a quick Google I discovered that the Royal National Orthopaedic Hospital is based here, so I might be looking at a quick trip here to have the brace fitted?  I suspect I have a lot to learn yet about this aspect of medicine!

Another Day Another Outpatients Appointment

Back on the train again and while the title may sound a bit glib I feel this is an important appointment with a few things to catch up on.

Mainly the results from the MRI scan and what my PSA is?

So not surprisingly I am feeling a little nervous but hopeful at the same time.

Well we arrived just on time and were called forward straight away which is a first, barely time to get my thoughts together!

Today I met a new doctor, new to me that is. She spent a lot of time asking me questions and getting a feel of how I was. She also gave me an examination.

What the MRI showed was that I had a compression fracture in my T12 vertebra which would explain the pain. And while no single event may have caused it, it is likely that my bones are not as strong as they could be and subject to wear and tear.

Below is an image I have borrowed from the web which shows a compression fracture.

Image result for compression fracture spine

I do have a copy of the MRI report and it goes into some detail and will take me a little time to understand it fully.  The good news is that the reports says there is “no new foci of metastatic disease” which I am taking to mean that there is no new cancer in the spine since the last MRI, good news methinks!

Bottom line is I need to take care what I am doing and even things like over stretching may cause damage.

In the meantime I am being referred to a neurosurgeon for review and to see what can be done.

I hope this does not take too long to come through.

There was also talk about starting treatment with something called Zoledronic Acid which can help to strengthen the bones and reduce pain.  This is normally given via a drip on a monthly basis.

There are a few hurdles to go through before starting on this, including the neurosurgeon but also a visit to the dentist is needed so they can check my teeth and jaw is OK before starting on the Zoledronic Acid.

In regard to my PSA it has come down to 961 from 1167 and a high of 1585.

It also looks like my Alkaline Phosphatase has been tracking my PSA, it was up at 733 and is now 282, (normal range is 40-129IU/L).  I think this is an indication of cancer activity in the bones (among other things) and so again the fact it has come down is good.  I hope, I didn’t get a chance to discuss this during the appointment but noticed it on the blood work print out.

So this is good news and hopefully a sign that the Lutetium is working, although we won’t really know until I have a PET Scan in December.

So I need to contact the team at The London Clinic and find out when the PET Scan is and also next treatment.

I need to go back to the pain management team and talk about my pain meds with a view to increasing the MST.

And I need to watch what I am doing so I don’t damage my back any further.

Is it Christmas yet, looks like it is in London 😉.

Blood Test Time Again

Heading up to UCLH this morning for s blood test prior to my Outpatients appointment tomorrow. It’s a pain having to go up today but at least I should have a full set of results for tomorrow.

It will be interesting to see what my PSA will be and to get the results from the MRI scan to see if anything can be done about the back pain I have been experiencing.

Well that was quick and painless, literally 😁.

Only 11 people in front of me and the plebotemist was very good, hence no pain.

I also learnt that this is my 43rd blood test at UCLH, there must be at least another 30 at other hospitals, they soon add up!

Back on the train now, homeward bound.

Fingers crossed for the results tomorrow 🤞.

Full Spine MRI

Back on the train to London and UCLH where I am going for a Full Spine MRI.

I have been suffering with a lot of back pain over the last couple of weeks and I hope that the MRI will identify a problem that can be treated, maybe by radiotherapy which has helped in the past.

And then my phone goes…..

It’s the imaging department at UCLH and they ask if I have already left for the appointment!

It would seem that the machine has gone down! If I wasn’t on the train then the recommendation would be to reschedule but as I am on the train it seems best to go in and hope that it is fixed by then.

So feeling a bit annoyed now. I have already waited quite a long time for the scan and am also in a lot of pain made worse by travelling.

But feel I have no option but to go on and hope it is working.

Well I arrived at the hospital and went to the new building next to Macmillan Cancer Centre. It’s only been open a few weeks I think and everything is very new and clean.

I am being told the scanner is now working and that my scan should happen on schedule.

Fingers crossed 🤞.

I didn’t have too long to wait before I was called in.  I got changed into the gown and was soon in the room with the scanner.

I was asked to lie down on the scanner bed and did so, it caused a lot of pain lying flat on the hard surface and I was wincing with pain.  I think the radiographers could tell.

Headphones were placed on my head to reduce the noise and I was moved into the scanner.

If you have never had a MRI, it is an experience, it is very noisy with all sorts of different noises, bangs and sounds of things spinning.

I tried to relax as best I could and closed my eyes.

It is also a little claustrophobic as you lie in the tube without much room to move.

I let my mind drift with all sorts of thoughts going through my mind.

Every now and then they would speak to me through the headphones, I didn’t catch everything and normally grunted a response of some kind!

After an hour or so it was over and I was slid out of the tube.

I couldn’t sit up by myself and needed help from the staff, I was in a lot of pain in my back after lying still for so long.  I managed to get to my feet but could hardly walk. It took me a while to get going.

I was in pain, the kind of pain that takes your breath away, it left me panting as I gathered myself.

I staggered to the dressing and slowly got dressed.

There was no way I was going to go home on the tube in rush hour so I got an UBER home and relaxed in the back of the car.

I was pleased to get home and finally get to relax, it had been exhausting.

Just need the results now!

Hospital Dinners!

Well today has been a bit of a day with me being admitted into UCLH Hospital!

Not what I expected when I set off this morning for my Oncology Outpatients Appointment. I was expecting a review and an update on all the scans I had had and to find out about the Vision Trial.

I did find out about the Vision Trial and while I was accepted onto the trial, I had the right levels of PSMA, I had been randomised into the Control Group, not what I wanted to hear.

Being in the control group means I would get normal ‘Standard of Care’, which I would get treatment that is already in use and not something cutting edge.

For me this would mean Steroids, Dexamethasone most likely.

I know I am no expert on this but my gut feeling was that the Vision trial and Lutetium 177 was the way forward for me.

But for now there were other things to worry about.

As soon as we started talking about my leg pain and Polymyalgia then the concern was raised that it might be caused by Spinal Cord Compression, this is where cancer in the spine presses on the nerves running through the spine causes pain and weakness.

So the immediate thing to do was to get a MRI of the spine so it could be better reviewed.

I was also surprised to hear that thry were going to admit me into the hospital do they could keep a close eye on me.

I would also be immobilised and would have to stay flat on my back!

This meant I was lifted by 6 people from bed to bed and moved around the hospital by porters.

This was all a very big shock as I had travelled to the hospital and had been walking around. I also had expected to go home.

What was I going to wear!

There was some confusion……

I was moved to the 10th floor where the cancer ward is and moved onto another bed, where I spent the next few hours.

It turns out I should have been taken straight to Imaging for the MRI.

So it was about 7.30 when I finally went in for my MRI having been lifted another 2 times!In the meantime I had my first hospital dinner which was too bad 😁.

The MRI was 45 minutes of discomfort and loud noises, I was glad when it was over.

Barbara had been with me all through the day and had got me a small hospital survival kit.

I was sad when it was time for her to go and look forward to seeing her tomorrow.

Since returning to the ward I have been hooked up to a drip and given some Dexamethasone and some pain killers.

I lie here now in my hospital bed listening to the noises of the ward.

We I sleep I don’t know, the Dexamethasone might have other ideas and my mind is spinning but I need to give it a try.

Apologies for any typos, it’s been a bit of a day!

MRI of my Head

Before anyone asks they were not looking for my brain 😉.

But they were looking to see if there was any sign of a tumour around my brain as I had mentioned that I been having minor headaches and they ‘didn’t want to miss anything’ as they put it.

So it’s back to UCLH for a MRI.

On arrival I checked in and had to fill in a questionnaire and then I was seen almost straight away.

And then it was time to have another cannula as the MRI was with Gadolinium contrast.

The radiographer did a good job getting into the vein but it took a bit of wiggling around to get it fully in the vein. This had me squiming in the seat in pain and gritting my teeth.

Then it was time to empty my pockets and remove all the metal from my person.

I was lead into the room where the scanner was and asked to lie on the bed. A frame was fitted around my head to keep it still, I felt a little like Hannibal Lechter!

Then the bed moved and my head was in the scanner.

As the scanner started the noise increased rapidly and it’s not just the volume of the noise it’s the different types of noise from clanking sounds to beeps and whistles. All the time you can hear the scanner spinning.

I can’t imagine what this would be like if you were claustrophobic, fortunately I am not and I just closed my eyes and let my mind drift.

After about 20 minutes the noise stopped but only while they injected the Gadolinium.

Another 5 minutes to go.

And then it was over.

I asked why it was so noisy and the answer was Physics!

Then it was time to pick up my belongings and head home.

Hopefully all is ok.

And as I am about to post Dr Flanagan phoned and said the MRI showed no problems so nothing to worry about there.

Good news 😁.

She also gave me some homework and suggested I read up on Cabazitaxel and Radium 223 as possible future treatment options.

She also mentioned a trial called Lutetium which is going live in a few months, the downside is that it is a randomised trial and I feel I need more than a placebo!

Some more thinking to be done!