Recently diagnosed

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Hi my partner was advised last year that he had a shadow on his bladder and not to worry as it wasn't cancer, prior to this information he had been in and out of hospital for a year prior to this and told he had a kidney stone, he then seen another doctor and was told he had 3 kidney stones then further told he had passed them which he hadn't. He then got a scan and they found the shadows on the bladder. His pain continued for months and I made him contact the doctor which he was then referred for a flexiscope where he was advised they had seen cancer in the bladder.

He received a letter for the flexiscope and 30 minutes before the appointment they cancelled it and gave it to some one else, was told to call the number on the letter, I left over 100 voicemails for the person who arranges appointments to call back with an alternative date. This never happened.

He was in the hospital last week for a TURBT and kept in 24 hours which we were under the impression he was to get a dose of chemo directly into his bladder through the catheter, this never happened and was not given a reason as to why not. Discharged from hospital he was advised to wait for an appointment to go back to urology for results from pathology.

With not a lot of information given I called urology today and was advised that he had 3 tumours in his bladder and that they had booked an appointment  for the 29th so we have to wait another 2 weeks on the pathology results.

We know these things take time but sitting in limbo is actually having a detrimental affect on our metal health.

Does or has anyone never had the chemo after the TURBT? If not was there a reason given why no or can anyone help answer this question please.

Thanks

Flo

  • Hi  and a warm welcome to the group. We know how anxious the constant waiting can be, and something we all find hard to deal with. Treatment is a step by step procedure and best to just take it one step at a time. The Mitomycin wash after a TURBT is not always used and not uncommon not to have it. Sometimes it is deemed not necessary and other times it may do more harm than good. Once the results are in then a plan will be put in place and it makes things easier having something positive to focus on. Many of us have been through this with various treatments so always someone here to answer questions. Best wishes.

    Best wishes to All,   rily.

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  • Thanks for getting back to be Rily, I was really worried about him not getting chemo you have put my mind at ease.

    I actually didn't know where to turn or what to do then I remembered macmillan do support.

    We have had a rough night it finally sank in to my partner what's happening and he cannot think about anything positive at the moment and I am trying to stay strong but it is hard and I know we aren't the only people going through this.

    He doesn't really want to stress family out so I am his shoulder to cry in, thankfully we are really close and talk about everything.

    Knowing I can pop a post on here and someone reaches out with some encouraging words.

    Many thanks Blush 

  • Hi Flo

    I had a 3cm tumour removed February last year and didnt have chemo because the surgeon said she removed it all

    So hopefully they decided it was not necessary

    The waiting for results is the hardest thing, but hopefully it will be good news

    Much love Tina x

  • Thanks for replying to my post, it gives us hope that it may not be as bad as we are anticipating.

    Flo x

  • Hi Flo77,Welcome to the group.I hope you find it helpful.I didn’t have chemo either but had a type of cancer that doesn’t respond to it.This early stage of tests and results is never easy but you should get plenty of support here.Jane x

  • Thank you for replying I appreciate any advice or help x

  • I didn’t have Chemo either. Not suitable for my problem. Grinning

  • Hi Flo77

    I too am recently diagnosed. I am also new to the group. I had my TURBT last week and had 2 tumours removed. I had to stay in hospital overnight but I'm now back home and recovering.

    I agree that waiting for Pathology results is very bad for our mental health and at the moment I don't  have any results or an appointment to discuss any follow up treatment but I am taking comfort in the fact that the tumours are no longer inside me but are sitting in pots in the Histology Laboratory! I'm trying to just take one day at a time to regain my strength and be ready for whatever comes next and to also come to terms with this diagnosis and that it is actually me that it is happening to.

    I hope that you and your partner get the answers that you are waiting for quickly.  I'm sure that the 29th will come round fast. The good people on this forum are full of great advice and have been a brilliant source of information for me. 

    Take care of each other and let's hope the results bring good news.

    Best wishes to you both

    Ade x