Thank you very much for this – especially for the link to BAUS.  This is all very new to me – a couple of months ago I had thought that my risk of cancer was minimal and not worth worrying about (!).The algorithm is especially useful and seems to offer a clear way forward (except that I don't know yet how extensive the ureteral cancer is – that will become clear in due course, of course, maybe in the path lab report; the surgeon must have noticed when she took the samples in the operation last week, but she didn't way anything about it to me after the surgery). 
I do hope your husband's CT scan went well. 

Thanks ct scan was OK He is drinking lots of water as directed to help wash out the contrast We see consultant on 7th Feb until then I have what lots if us here call.scanziety Good luck Keep us posted 

I hope all is going well with your husband: I'd be glad of news. 

My own news is that I had misunderstood the result of the CT scan: they don't actually know whether there is cancer in the ureter or not.  But they're having huge difficulty answering this question.  They have now taken biopsies in January and again in April and still cannot decide. They then decided to put me on BCG treatment to make sure they have done all that could be done against the bladder cancer they removed in November, and they are planning to go back to the ureteral cancer issue after that. But it all seems so slow. I tried to get a second opinion, and have been offered one but not until October. I'm not showing any symptoms, other than the after effects of the BCG...

The patch of cancer in his ureter had grown so there was more laser treatment when the stent was changed This cancer is now on the back burner as what we thought was a small cyst on his scalp turned out to be a Merkel cell carcinoma which is aggressive It has been removed a traumatic experience for my husband as do to health issues he could only have a local anaesthetic It's healing well as is the donor site on his thigh from where the skin for the graft was taken A pet scan showed cancer in the neck lymph nodes and after discussions with our consultant and a consultant radiotherapist it was decided best option is immunotherapy We have a meeting with the original consultant to discuss the results if a second pet scan done to check for any more distant spread Then we will be seeing a 3rd  consultant to discuss immunotherapy I asked our urologist about immunotherapy but he said husband's kidney function was too low I raised this with the new consultant and he said it's not a problem Two of the immunotherapy drugs mentioned Avelumab and Keytruda also act against ureter cancer as well as Merkel cell Like bcg they help the immune system attack and kill the cancer cells So we are hoping for a 2 for 1 effect 

The urology consultant said at the outset the cancer had probably in the ureter for a couple of years before symptom appeared The symptom being blood in his pee and it's been just over 2 years since that happened There is also mitomycin and mitomycin gel the later can be put directly into the ureter 

It must be frustrating and stressful not being able to get an answer as to whether there is cancer there or not Would it be possible to see someone privately and perhaps ask for a ureterscope to see if this gives any answers

Best wishes 

Wilbert 

I'm so sorry to hear there have been new cancers, including ones outside the urinary system.  It must be dominating your lives.  At least there are promising treatments available; and it's good that you have a number of consultants involved, which must help to make sure that the best decisions are being taken on treatment.  Keep me in touch. 

Thank you will do and let me know how things go for you We are staying positive and balancing hospital appts with treats lunch or dinner out or a night away 

Take care x

Thank you.  The additional problems must be very stressful, and I'm very glad you're staying positive.  Keep it that way, and stay in touch. 

Will do thanks x

Very odd pet scan results Spot on  scapula and more lymp node involved However postate "lit up "Husband doesn't have any postate symptoms other than occasionally getting up the night depending on the amount of fluid he has drunk Nothing reported in ureter So blood test to check psa Consultant did say postate scan can be misleading We should have asked if ureter cancer should have shown up on pet scan I know certain cancers react to sugar in the radioactive element but it was a surprise If psa is high our consultant will refer us to urologist at the hospital So we can discuss the ureter issue with him Basically we want an appt with the Professor to discuss and begin immunotherapy the nurse who always sits in and has been monitoring John's scalp and skin graft site said she will be seeing him this evening She is going to see if he will see us at his clinic Thursday What a roller coaster fingers the nurse is successful My husband just wants to get the Immunotherapy started asap Best wishes 

Wilbert