Help for my lovely Mum - Papillary urothelial carcinoma (sorry it's a long first post)

Hello A_R.  Apologies for a long answer. A cancer diagnosis is always a shock to the system and you of course want your mother to have the best possible chance of removing the cancer or at the very least resisting its progress for as long as possible. It is also true that the NHS is under immense pressure. This can cause the service to vary considerably from one area to another. I therefore understand your frustration/desperation. I know that many of us have experienced pauses in treatment schedules for numerous reasons, me included. My cancer diagnosis could have been made a year or two before mid 2017 but the main symptom, blood in urine, was also consistent with the movement and ejection of kidney stones which I'd had since 2010. Eventually a wider search for the cause was made after a shadow on my bladder was found during a routine u/s of my kidneys which was extended to cover organs above and below. The timeline then went: CT scan and flexible cystoscopy 3 weeks after the u/s; TURBT scheduled for 2 weeks after that. Pre-op found a heart murmur which required an echocardiogram, the appointment for which was the day before the scheduled TURBT! During admission for the TURBT the echo results arrived together with those from the CT scan. The TURBT was called off until the anaesthetist and surgeon had had time to take further advice from cardiology. I was sent home until they'd thought of a plan B. I've mentioned this as a fairly typical example of the way cancer treatment has twists and turns as the specialists receive new information which may alter the path originally envisaged. These changes take time and naturally increase our feelings of tension and anxiety. My plan B was to transfer me from Urology to Oncology where radiotherapy would be carried out in November 2017, so the path had already taken from July to November. Cardiology advised against follow-up chemo, meaning that my radiotherapy dose was preventative rather than curative. A TURBT 1  was eventually carried out in April the following year after an emergency admission to hospital. TURBT 2 was performed in October of that year. I'm still here in 2024, much to my surprise.

What I'm trying to say is that cancer treatment often has delays whilst results of tests are awaited, specialist departments consult, their facilities and staff are lined up etc whilst the poor patient anxiously waits for something to happen. The delays you are observing may just be normal for a very busy hospital juggling with the complexities of cancer treatment whilst weighing the various risk factors presented by each individual patient. I hope that you manage to gain some reassurance and confidence in the system very soon. If you can contact a Macmillan nurse at your hospital, they can very often liaise between you and the very busy medical staff who are notoriously difficult to contact. My very best wishes to you and your mother.     

Hi,Welcome to the group.I’m so sorry that your mum is feeling like she is being blamed.If you are in England you could try PALS the patient liaison service and see whether they could help.It is a sad fact that depending on where you are there will be delays/pauses as Ray has mentioned in his reply.You really need someone to speak to and answer your questions,it’s not good enough to not know the full picture.You could always e mail the oncologist with your questions or may be get a second opinion ? Your mum will have to have someone she can trust.I hope these issues can be resolved.There is advice and support here so I hope you will stay with us as we are all here to help.Best wishes Jane x