I was on the kidney cancer forum, but have now joined the Prostate Cancer Forum. Hello to everyone.
In 2017 I was diagnosed with rare UTUC. I was Stage 4 and given a prognosis of 6 to 9 months. I had my last CT scan 2 weeks ago and my final oncology consultation last Thursday. It was one of very good news and bad news. I had survived UTUC and was being discharged. However, there had been a mistake with my recent pre-CT scan blood test. Instead of a kidney function test the lab had performed a psa test. My psa was 13.1.
Due to BPH and quite severe urinary problems, I had HOLEP in 2012. Following HOLEP my psa had gone down and stayed down. UTUC became my focus from 2017. My last psa in 2018 was 1.4. I was getting 6 monthly and then yearly ct scans with contrast from pelvis to neck, along with a 6-monthly then annual cystoscopy. I therefore did not worry too much about my prostate. Regrettably, we never discussed it, despite my history.
Due to the mistaken psa test of 13.1 they obviously looked more closely at my prostate on the recent ct scan. They said there is an area of 'heterogeneity' that requires further investigation. They did say that on the ct scan there 'appeared' to be no evidence of lymph node or tissue involvement, but that a ct scan is not ideal for PCa diagnosis. The oncologist said she was hopeful they may have caught it early. I am, however, disconcerted by a psa of 13.1 after HOLEP, albeit 11 years ago, and wonder what might show on a PET scan.
During my last 3 or 4 cystoscopies I did ask about the visualisation of my prostate because my urination had been slowly declining. They always said they could see regrowth and I probably needed a redo. My bladder cystoscopy about a month ago was clear.
I am fit, healthy, and young for my age, 77 approaching 78 year old. I can nip comfortably up 5 flights of stairs and frequently do. I have a good bmi, don't smoke or drink etc. However, I now only have one kidney and am classified as Stage 3b CKD due to my reduced kidney function, post-nephrectomy.
I feel great, am not on any medication, and go about my life like someone at least 10 years younger. I don't want this to change. I accept that I am at the beginning of the diagnostic process and PCa has not been confirmed yet. However, I like to 'get my ducks in a row' and due to my age which is getting close to the UK average lifespan, should I be prepared to consider Active Surveillance rather than potentially quite debilitating treatment? WDYT?
The oncologist said that If I had PCa, due to my age I would not be offered surgery. I think she said V Mat IMRT with some possible HT. I am not at all keen to take the latter, and would probably refuse it.
I have a concern that RT may not be possible due to my less-than-optimum urination. I only rise once after about 6 hours of sleep. I don't have urgency. I do have a slower and more hesitant stream if my bladder is not quite full. I have to wait and do a short double void after each urination. Can a TURP/HOLEP take place after RT? WDYT?
In the last few days, I have trawled through all the different treatments. If I do need treatment, and I decided against AS, at the moment I would opt solely for RT. WDYT?
I could just about stretch to financing robotic prostatectomy, HIFU, or Cyberknife etc, if necessary.
The major consideration I have is being around for my wife. We have a tiny family circle and have been quite self-sufficient as a couple. I fear this is, and could be even more harder for her than for me.
What now to do? I welcome advice and input.
Hello D
Yes 10 months of a nice warm leg!! The 12 weeks is the date for the next catheter change. In the entire period I never got a UTI. The secret, everyday pull back the foreskin if you have one and clean around the area where the catheter enters the penis with warm water which has been previously boiled. Everyday and give it some welly!! There will be "bits" there trust me, however often you shower.
At the 12 weekly changes there was no pain and it was a simple old one out - new one in!!
* I would advise your brother to contact the urology department (try and get their e-mail address so there is a paper trail) and ask what the plan for the future is.
* As you were unimpressed with the service at the hospital - contact their PALS service - Patient Advice and Liaison Service there - tell them what's gone on and ask the same as the point above.
* If your brother lives in England download the NHS app and ask his GP for FULL access to his medical records, you will then be aware of his GP test
Your PSA of 13.372 needs some action sooner than later - I know it's slow growing, but it's growing.
best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Hi D
The answer to your question is a biopsy is a simple operation whereas a TURP is longer, needs a full pre-op and a full set of standby bloods in case of any problems - hence the blood match the day prior to the operation.
My biopsy took 20 minuets start to finish - the TURP probably 2 hours from leaving the ward to being returned. There was then another 4/6 hours for full feeling to return after the anesthetic.
The accurate Gleason score came from the "chips" taken when the TURP was done.
And
Unfortunately there are not enough MRI machines in the UK at the moment to cope nor the number of technicians to analyse the results.
there's another bit to anwser the question.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
No. The Greek public health system suffers from the same problems as the UK in that it is underfunded and understaffed. The difference here is that we have access to a consultant usually the next day at a cost of between 40 and 100 Euro depending on the speciality, and if we have a problem we have their mobile number. All the consultants pick up the phone to other consultants whilst we are in the office to discuss and arrange treatment there and then. We have all our own records including the result of each consultation which are handed to us as we walk out of the door by the consultants assistant come receptionist so administration cost and time is negligible. The private hospitals are given a contribution towards treatment by the public health system equivalent to it's cost at a public hospital and we pay the balance e.g. 33 sessions of RT cost 3200 Euro which included the oncologist, physicist, technicians, scans and of course the machine. The biopsy under general anaesthetic was MRI led and cost 250 Euro including pathology cost and professorial review. All drugs classified as life saving are free to us e.g. cancer, kidney, heart medication but things like statins, antibiotics... cost us 25% of the list price which is negligible at about 2 to 5 euros a time. We can dictate which hospital we want to go to for treatment so for medical oncology the hospital we chose is classified as the 5th best in Europe- we opted for chemotherapy on the Thursday and the first session was the following Tuesday. For radio oncology a different hospital has the best machines and the oncologist is at the forefront of things like cyber knife and SBRT -again phonecall to the consultant was on the Monday and planning scans on the Thursday, with treatment starting on the following Monday. MRI and CT scans, blood tests etc are all carried out at private diagnostic centres locally and are subsidised to the tune of 90% so MRI is 35 Euros, CT scans 10 Euros, CBC +biochems +PSA +testosterone 12 Euro, and we either walk away with a copy of the results or they are emailed to us the same day. I then send these to the consultant and usually get a response the same day or next morning. The Greeks are known as a nation of hypochondriacs so there is a vast number of doctors, diagnostic centres and hospitals. The trick is finding the best one, but because there is such choice then they have to be competitive. I think that as problems are dealt with and treatment given so quickly then the system does not get bogged down by the waiting times and administrative delays that you experience in the UK. Also because the cost of subsidised private healthcare is comparatively cheap most use it, which takes the pressure off the public system and this has led to it being underfunded and understaffed which provides a poorer system for those who cannot afford to go private. When we moved to Greece we made provision for the cost of private healthcare as, owing to the health of my husband insurance cost was prohibitive. Luckily we still haven't had to dip into it. As the saying goes - there are no pockets in shrouds and you can't take it with you so we feel we have good value for money for the treatment we have. Certainly the quick action by the doctors have given us a lot more quality time together than I think we would have had if we had stayed in the UK because of the nature of the form of PCa that my husband has. For emergency care in the UK I think it provides an excellent service on the whole, it's just a shame that people are forced down that route because of limitations in other parts of the system. The major disadvantage to the Greek system is that we do not have such places as Maggie's centres, hospices or organisations like Macmillan's so it puts a lot of pressure on the family.
Now that I have bored you I will try and get back to sleep. Insomnia has been a problem since my husband's diagnosis as I think it is with many wives and partners. We just don't seem to be able to switch off 
