Feeling a little overwhelmed

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Hi all, In the past few days I've been diagnosed with UTUC which seems to be pretty rare. When the daignosis was confirmed the surgeon opened with, 'This is treatable and I am confident I can cure you' and booked the surgery. The next day she phoned to tell me that someone else had noticed my lymph nodes were enlarged, that I needed a biopsy, the surgery was cancelled, I would probably need to be treated with chemo and if that didn't work it would be terminal. This was done over a very quick phone call and she said she wouldn't tell me anything else at all until the biopsy was done. It felt quite brutal but I accept there is no easy way to deliver news like this. The biopsy has now been booked for later this week but no one has told me what to expect and the results won't be back for a further two weeks. I just wondered if anyone else had been in a similar situation and could offer any words of advice. I'm feeling pretty overwhelmed and alone right now. Thank you in advance. 

  • Hi  and a warm welcome to this friendly and supportive group. It is understandable the way you feel and many of us will know the feeling of uncertainty and not knowing. Early days yet and they don't seem to have all the information to plan the way forward. You have a biopsy coming up and probably some scans. When they have all the information and full diagnosis they will come up with a plan for you. Once you know which way you are going it makes things slightly less stressful as you have something to focus on. Best wishes.

    Best wishes to All,   rily.

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  • Thanks for taking the time to reply and much appreciated. 

  • Hi Leeas, and welcome from me. Of course you are feeling overwhelmed and fearful. Your phonecall does sound quite brutal . I echo what Rily says, they havent got a complete picture yet to give you a treatment plan going forward. The wait inbetween is really tough and the uncertainty is easily filled with ‘what ifs’ . One day at a time, one step at a time and if you have been given a cancer nurse specialist, talk to her as often as you need to . We are all here to help and steady you through this , vent , rant and ask as much as you need to. There are lovely folk on here who have so much experience. sending you love and a hug to give you strength x

    Much love Angela x

  • I can't really add anything to rily's response. The initial stages are indeed overwhelming as I recall from my own experience in July 2017. This forum can reduce the feeling of being alone. You are now with fellow travellers, all taking different paths according to the detailed differences in diagnosis and treatment options offered by doctors and consultants who will always be looking for the best outcome for each patient.  Sometimes their bluntness can be a shock but this can be a blessing. A long, gentle, diplomatic version may feel kinder until you struggle to remember all that was said! Keep posting and we will help you as best we can.

    Best wishes, Ray  

  • Thank you Angela. I think the doctor made it all sound so final and inevitable on the call that it spooked me. I don't have a nurse specialist yet but hopefully one will be allocated soon. A x

  • Hi Leeas,Welcome to the group.I hope you will find it supportive and helpful.Love Jane xx