29th March 2016

I hadn't posted any updates here for 10 days (or 12 days after I first contacted University College Hospital, London) because I was hoping to have some good news to add.

Sadly, I have made zero progress with UCHL in the last 12 days. I have phoned and e-mailed numerous people, and have been passed on to many other people, but no-one has been able to help me in any way. I fail to see what is so difficult .... I simply want an appointment with a specialist surgeon for the second TURBT examination followed by the radical cystectomy (if that is deemed necessary).

No wonder the NHS has such a bad reputation .... although I naively thought that coming in as a private patient would bring a more positive response than I have experienced so far, rather than having two of the people that I contacted openly lying to me.

I now have to wait until Thursday 31st May when the PA / Secretary to one of the surgeons is back from her holidays to find out if that surgeon wants to take on my case .... or find another specialist centre that is more interested than UCHL.

Ninth hospital visit (Saturday 19th March 2016)

The call back at 8:30 pm on Thursday evening from Dr. Hossam at Saudi German Hospital wasn't to tell me that the second TURBT operation had been arranged, but because he wanted to introduce me to Dr. Ahmed Hassan, the Consultant Urologist at Saudi German.

We arrived at 9:50 am for a 10:00 am appointment this morning, and then waited until 12:45 pm before Dr. Ahmed could see us. Whilst he was reading through the CT Scans and Pathologists reports (which he had not seen before), his colleague changed my catheter and colostomy bag.

Dr.  Ahmed then said that he feels my bladder can be saved with an aggressive TURBT resectoscopy (to remove as much of the tumour and cancer as possible, and to get the biopsy samples from specific locations as requested by the Pathologist for more accurate staging of the cancer) followed by 6 weeks of chemotherapy. Only if that fails to stop the spread of the cancer, and the Pathologist upgrades the cancer from minimum pT1 G3 to pT2G3, should a radical cystectomy be performed.

He was not concerned by the CT scan report of suggested tumour invasion into the perivesical fat on the outside of the bladder wall, because apparently this may have been caused by the TURBT operation. He needs to see a CT scan done before the TURBT resectoscopy, which was never done.

THOUGHTS

Do I push to get the second TURBT (and then the radical cystectomy, if required) done at a specialist cancer centre such as University College Hospital London as soon as possible, or do I let Dr. Ahmed try to save my bladder and loose valuable time in the process if this isn't successful (before then arranging to have the radical cystectomy done in England) ?

Just a quick rant (Thursday 17th March 2016)

The one thing that I didn't expect is all the running around - effectively Project Management tasks - which I have to do, to get the treatment that I urgently need. I naively thought that the hospital would take over and sort everything out for me, since that is what I and my health insurance are paying them for !!!

Despite the issues with the CT scan authorisation last week, I had to chase Saudi German Hospital again today for an update on the authorisation from my health insurance company, this time for the required second TURBT operation, which they applied for last Sunday. The hospital told me that they are still waiting for NextCare to authorise this operation .... when I phoned NextCare, they told me that they passed the authorisation on to Saudi German hospital last Monday. Another phone call back to the hospital, who suddenly confirmed that they have received the authorisation after all, so they will call me back later today with the date for this operation !!! (hopefully this Saturday)

Second Opinion (Wednesday 16th March 2016)

I was recommended to take all the reports and results to Dr. Moamen Mohammed Amin Abdelrahim at Zulekha Hospital, Dubai for a meeting this morning at 7:00 am for a second opinion.

It didn't start well .... firstly, the Zuleka Hospital does not offer any parking for any of its patients or their visitors, so I had to find a metered parking space outside the hospital grounds, then walk in. How do they expect elderly or less mobile patients / visitors to manage this ??

The next surprise was that in addition to the usual 20% of the consultancy fee not covered by my health insurance, I also had to pay an additional registration fee of Dhs. 60 (GBP 11,50 / US $ 16,30), since this was my first visit to this hospital.

I then had to wait for Dr. Moamen Mohammed Amin Abdelrahim .... my appointment with him was from 7:00 to 7:20 am, but he finally entered the hospital at 7:40 am.

Luckily, things began to improve after this rocky start to the day. Dr. Moamen confirmed that I must have a radical cystectomy, but this must be done in a specialist centre in England (not here, because no surgeon in the UAE has enough experience and the hospitals here don't have the required equipment). The second TURBT operation is also required, not only for the Pathologist to assess the tumour more accurately, but mainly to establish whether my urethra and sphincter is cancer-free (so can be retained for use with a neo-bladder), or if they must also be removed, I will require an external bag to collect the urine from the kidneys.

Dr. Moamen was concerned that the abdomen CT scan was only performed after the first TURBT operation, because he wanted to see (in more detail than an ultrasound scan can show) what the tumour looked like when first diagnosed.

THOUGHTS

I have to keep waiting until my health insurance finally approve the second TURBT operation, and once we have the Pathologist's report from this, I can start making arrangements for the radical cystectomy to be done in England - hopefully before the aggressive cancer tumour cells, which have already invaded into the perivesical fat on the outside of the bladder wall, break through the fat and spread further through my body, making treatment much more difficult, more expensive and with a significantly reduced chance of success.

Eighth hospital visit (Sunday 13th March 2016)

This visit was just to collect the Radiologist's report on the CT scans last Thursday, which luckily confirms that there is no evidence that the cancer has spread from the bladder into any other organs.

The next step is for a second resectoscopy, required by the Pathologist with samples from specific areas (rather than random biopsy material as last time) so that he can stage the cancer more accurately. Once properly staged, the Oncologist will decide if a radical cystectomy or only partial bladder removal is necessary.

My Urologist wants to take the opportunity of this second resectoscopy to remove as much of the remaining tumour as possible, which will be difficult, since it is mostly located on the front bladder wall and hence fairly inaccessible from a resectoscope that can't turn through 180 degrees.

THOUGHTS

The Urologist terminated the first resectoscopy after he almost perforated the bladder wall whilst cutting away as much of the tumour as possible. I would prefer if he only took the few specifically targetted biopsy samples for the Pathologist, and left the remaining tumour to be dealt with by the radical or partial cystectomy later.

Seventh hospital visit (Thursday 10th March 2016)

I got a phone call from the Saudi German Hospital yesterday, confirming that my health insurance had authorised both the abdominal and thorax CT scans, so an appointment was made for midday today. I was not allowed to eat or drink anything for at least 6 hours beforehand, and needed another blood test at 10:00 am (so that the results of this would be known just before the CT scans were performed).

Hence we left home at 8:00 am, and arrived at the hospital at 9:15 am - no traffic en route, because the schools were closed today after the massive thunderstorms and flooding yesterday.
The blood samples were taken at 9:45 am in the Laboratory, and all was well (the Creatinine level was at 92 μmol/L).
The CT scans were started at 11:45 am in the Radiology Department - once without contrast, then again after the contrast chemical had been injected into my arm.

We then went back to the Urology Department, where Dr. Hossam tried to analyse the results .... but unfortunately my bladder was completely empty (thanks to the catheter and 6 hours of no intake), so he couldn't determine anything. Hence he came with me back to Radiology, pumped a saline solution into my bladder until it was full, and the CT scans were redone.

The GOOD news (still to be officially confirmed by the Radiologist's report on Sunday) is that Dr. Hossam could see no indication of cancer present in my throat, lungs, chest or stomach. It seems that the cancer is still retained within my bladder and has not spread any further !!!

So the next stage (after seeing the Radiologist's report) is to have a meeting with the Consultant Uro-Oncologist. If he agrees with Dr, Hossan that I am a good candidate for radical cystectomy, an application for authorisation for this operation will be made to my health insurance company. If this is not approved quickly, they will proceed with chemotherapy next Tuesday, followed by an aggressive resectoscopy to remove as much of the tumor from the bladder as possible, as a stopgap until the radical cystectomy operation is authorised.

THOUGHTS

Obviously incredibly happy that the cancer has not spread any further than my bladder, but also worried about the severity of the operation required shortly.

Sixth hospital visit (Tuesday 8th March 2016)

I arrived at the Saudi German Hospital at 9:00 am, very late for my 8:20 am appointment (thanks to a huge car crash involving at least three vehicles that all but closed the E611 Emirates Road for an hour), but two of the Receptionists and several other staff were sitting in the same traffic jam and were just as late for work, so no-one was bothered.

I then had to collect the Mitomycin chemo from the hospital pharmacy, and was told that because I was booked in as an out-patient (instead of day care), my health insurance would only cover 80% of the cost, so I had to pay Dhs. 330 .... also, because my Urologist had signed the prescription, this was not acceptable, it must be issued by an Oncologist. After a 20 minute discussion, the Pharmacy eventually let me pay and take the drugs to my Urologist.

40mg of Mitomycin was mixed with about 3/4 litre of water, then pumped into my bladder through the catheter, which was then closed off (at 10:00 am). I was taken to another area of the hospital, and instructed to lie for 15 minutes on my back, then 15 minutes on my right side, then 15 minutes on my stomach, then 15 minutes on my left side, then my right side and back again. The nurse would return after 30 minutes to check on me, then again after 90 minutes to release the clamp on the catheter and let the spent chemo drugs drain away into my colostomy bag, which the Urologist would then examine.

Unfortunately, the nurse forgot to return after 30 minutes (and 90 minutes). After 2,5 hours, I found another nurse in this area, and asked if she could get a message to the Urology department nurse, to remind her about me. At 1:30 pm (after 3,5 hours in total), I decided to find my own way back to the Urology department, where the nurse unblocked the catheter.

My health insurance still hadn't authorised the required CT scans that were scheduled for today, so the Urologist asked me to chase them up directly. When I phoned them, they gave me the reference number for the authorisation of the abdominal CT scan (applied for by the hospital last Thursday and authorised on Friday), but claimed that the hospital never requested a CT scan of the thorax area, so they should file that request immediately.
Since this would take a couple of days for approval, the Urologist suggested that instead of doing the abdominal CT scan today (which was to see if the cancer tumor had breached the bladder wall and spread into my bloodstream) and the thorax CT scan later (to see if the cancer had spread to my lungs, chest or throat) and sending the insurance company two separate invoices, it would be much cheaper to wait and do both CT scans at the same time, as originally planned for today.

I then collected the images of the chest x-rays and ultrasonic scan of my bladder, plus the DVD of the resectoscopy operation on my bladder, before heading back home at 3:30 pm.


The current plan of the hospital is ....

1) bladder chemotherapy session today (completed)

2) abdominal and thorax CT scans to determine if the cancer has spread outside of the bladder (as soon as the health insurance authorises this)

3) another resectoscopy operation, but this time collecting biopsy samples from very specific locations of the bladder tumour as determined by the Pathologist (because he can't grade the tumour from the previous biopsy samples, he can only see an invasive tumour with aggressive cancer cells and harmless tumour cells, but doesn't know which were located where) 

4) if the cancer is restricted to the bladder, arrange for a radical cystectomy to remove the bladder, prostate, lymph nodes, etc.

5) if the cancer is not restricted to the bladder, continue with bladder chemotherapy plus normal chemotherapy, to try and eliminate the cancer from wherever it is (if the radical cystectomy is performed, I will be too weak to have chemotherapy, which will allow the cancer to spread elsewhere)

THOUGHTS

I am very grateful that the side effects from the Mitomycin chemotherapy are minimal - I only have a slight discomfort in my stomach, and I think that is left over from the resectoscopy last week rather than the bladder chemo session.
I am worried that the delay before further action - removing the bladder and the cancer with it - will allow the aggressive cancer to breach the bladder walls and spread into the rest of my body, but Dr. Hossan assures me that a few weeks delay will not make any difference, since the tumour has been growing inside my bladder unnoticed for between 2 and 3 years already.