Transitional Cell Carcinoma - spread and treatment advice needed.

Sorry I can't really help with any advice for your mum's situation, but just wanted to so so sorry you are all having to deal with this after the first treatments. 

Just to say I wish you all the best coping with decisions etc down the road. 

Sorry you feel the doctors have almost dismissed your concerns and questions as well. You could always ask to see another consultant if your not happy with the way things have been dealt with. 

Hello A_R and welcome to the group although sorry to hear about Mum. It must be difficult if you cannot get all the information you need to move forward. Mum should be able for a second opinion and her GP may refer her to another hospital. Some doctors, however, do not like taking over where others have left off and prefer to start from scratch which can lead to delays.  Does your Mum have a CNS you can talk to in order to get more detailed information ? Some people on here have has immunotherapy treatment and hopefully will be along to share experiences. I hope your Mum can get some suitable treatment going forward, Best wishes.

Hey Rily 

Yes the CNS is calling Mum in a few days to see what her thoughts are with regards to next steps, so she will ask some of those questions to the nurse. Appreciate the feedback re delays on second opinions too. I think Mum is of the mindset that she just wants to have a nice family Christmas before potentially starting anything in the new year, but it would be good to have any new information pre Christmas so that we can try and find some peace with whatever decision she wants to make. 

Thank you for the reply.

Thank you Simon for reaching out, it is like being in a bad dream to be honest and I am trying desperately hard not to crumble. Imagining life without my Mum just fills me with panic, and my heart aches for my Dad, my Sister and my two little girls. It is a lot to process.

Yes I'm sure most of us understand and have experience of differing jounreys not to mention the shock and uncertainty lots of us face when given bad news. 

Obviously you have had some really horrible news for the second time so my heart does go out to you all. 

Hello A_R,

I think your mother seems to be at a turning point with her cancer and the Oncologist is not willing to tell you what to do next. 

At such a point, there is a lot of weighing up to be done and maybe you might get some of that from a second opinion, privately if necessary. It's only money and can give you a clearer view. I had one before deciding on the cystectomy etc and it confirmed my own view that I trusted the hospital and would go ahead.

As we age, we come nearer to a point where we need to decide which more or less unpleasant option to take. In my case, at 73, I know that in your mother's position I would put quality of life above quantity. (At least that is the theory on which I am currently working.)

All of us who have had cancer know we have faced a very serious illness and there are no guarantees on what happens next. For my part I choose to try and live now. In fact, while on the ward before going home after my operation, doctors and nurses all said 'if there is something you've always wanted to do, now is the time to do it. I forget that sometimes as time goes on, but then I get back to it - it was very good advice.

I had 3 months of immunotherapy - Nivolumab -  (out of a planned 12) before the oncologist stopped it because I was having peripheral neuropathy - pins and needles in finger and toes and at that time it was looked on (for me) as a sort of belt and braces treatment after chemo and bladder removal and creation of a stoma.

There are different types of immunotherapy though and your mother might be offered a different type or be affected differently. You don't say if the oncologist was specific in what he thought her side effects might be, nor the outcome he would expect from having it.

1. They gave me  steroids to reverse the symptoms as far as possible, though the nerves in my extremities have been damaged, leaving some options for later if treatment becomes more necessary. And so far my scans are OK and probably the treatment has been helpful in getting me to this point.

I can't advise what your mother should do. However, if my oncologist said what hers said I would hope that I would ask for his views on timescale so I and my family could make an informed decision on next steps. (Always bearing in mind that the answer would be his best guess, as nobody every knows for certain.)

I do hope that I have helped a bit. We're all different on how we deal with things, and at the moment my ideas are still theoretical.

All the best,

Latestart

Thank you for reaching out Latestart, this is all very helpful information.

I think we were all a bit floored in the meeting and have since gone back to the CNS with some further questions to help make a more informed decision, and we are also seeking a second opinion. 

Mum wants to enjoy a lovely family Christmas before potentially starting treatment in Jan (so long as she has enough information to confidently make this decision). 

I am pleased to hear that your scans are clear, and that the treatment has helped you so far!

We all dread the prospect of losing our parents. I have little to add to what others have said, except that in some ways the proposal to rescan in 3 months is not simply saying nothing we can do, go away. Everything is open to review. I do hope you can enjoy the festive season, just take each day as it comes and be prepared to change any decisions made in the light of any new information. Best wishes to you all.