New Caregiver – Aggressive Metastatic High Grade Invasive Urothelial Carcinoma

[pjk]

Hi,

My dad (67) was diagnosed about two months ago with metastatic high grade invasive urothelial carcinoma. It has already spread to his lymph nodes. It all began with a trip to the emergency because he was urinating blood. He was in hospital for 5 weeks to control the bleeding from his tumour – 1 nephrostomy bag (to help the kidney drain as the tumour was blocking the ureter from the kidney), 3 TURBTs and one dose of radiation later, the bleeding stopped. Those first five weeks were awful – he was in so much pain, catheterized the whole time, and passing clots regularly. On top of that, the care he was getting was sub-standard. He was practically ignored by his busy urologist, his pain was not being controlled, and he developed an infection. The communication in respect of his cancer was also poor – nobody explained anything about it to my parents until we finally made it to the oncologist.

My dad was discharged after the bleeding stopped, and his oncologist had intended to start chemo right away to try and stop the spread, but my dad’s other kidney became blocked because the tumour spread so fast, and he developed another infection. They had to put in another nephrostomy bag on his other kidney and get his creatinine back to normal. He was in the hospital another week to manage this, but again his pain was not properly managed, nor was the growing distension in his bowel.

He was discharged again, and was on track for chemo (bloodwork was good), except that his pain was so bad he could barely move. The oncologist said she could not give him chemo when he was in so much pain and could not move, so he was again admitted to a different hospital for pain management. Long story short, they have finally moved him to a new pain drug (fentanyl) after our persistence (with a number of different doctors who come and go from the paliative unit) that the other drugs were not working. The goal was to have my dad up and moving with less pain so he could have his first chemo on Wednesday, but they have now found an obstruction in his bowel, which may be the cancer. We are currently waiting for the results of a CT to tell us.

It is now one more thing that could delay or prevent chemo. My dad is so devastated – he simply wants to be able to try the one thing that could potentially extend his life, and he just cannot seem to get there. On top of that, the communication from and between the physicians has been so poor and has contributed to delays – it seems like no one is steering the ship, and they are not communicating properly. We feel lost and helpless in the healthcare system, and some doctors have said really awful and insensitive things to my parents – while some are encouraging and are trying to help my parents move towards the goal of chemo – others treat them like it is a lost cause.

These last two months have been a nightmare. I live away from my parents. I am in Toronto, and they are in Calgary. I have been to Calgary twice in the last two months to help them manage and visit, and I have witnessed so much pain and heartache and tears from both of them.

I have now taken on communication with the physicians, as I am attempting to lift the burden off of my mom (it has just become too much for her), and my goal is to try and get clarity on my dad’s care, his prognosis, and also to try and get some consistency of care and communication from his medical team. However, I am feeling worn out and discouraged – I don’t want the end of my dad’s life to be so miserable and uncomfortable. I would appreciate anyone sharing whether they have had similar challenges or experiences, and any words of advice.

Thank you

[marysue]

Hi PJK:

Welcome to Bladder Cancer Canada but sorry that you and your parents have need of us. I’m also sorry to learn of the challenging journey that your father has faced.

Not being a doctor, I can’t directly comment on what went on about your father’s care or the standard of it, but I can suggest that if you are not satisfied with the type/quality of care and/or have issues with any physicians/specialists you are dealing with, you or your parents can contact the Patient Advocate Department of the hospital you are dealing with. I’m assuming because they are in Calgary, it is the Rockyview. An advocate may be able to find out things and go to bat for your parents to get issues resolved.

I had issues with my first urologist when diagnosed back in 2008 and had to go this route. As a result of having an advocate, I was transferred to a different urologist and my care was much improved. Communication was my main issue as it sounds like it is with your parents.

Because of what I went through with lack of communication, I can emphasize with your folks. When you can’t get answers to what, where and when – the unknown creates a lot of unnecessary stress to an already very stressful situation.

I will PM you the main line number for the Rockyview and the Patient Advocate contact info that I have. The turn around time for contact is usually about 48 hours. Hope that this helps. ((((HUGS)))))

[pjk]

Thank you, Mary Sue. I sincerely appreciate your response!

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