My husband just diagnosed

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My husband was diagnosed yesterday after a cystoscopy (tube into the bladder). We are all in shock. He incredibly has been brilliant, where as I’ve fallen to pieces.  

Following a week of blood in his urine, he had a CT scan 2 weeks ago which came back clear, then had the cystoscopy yesterday .  He has a flat cancer in the lining of his stomach wall. We have asked how big etc.  He needs to isolate for 14 days now with the hope of getting a TURBT ASAP.  Will they take a biopsy at the same time?  He obviously needs to have another CT scan focused on that particular area in the bladder. Did the consultant not see it first time because it is flat?  

I’m not sure how we will get through this waiting period. We are not going to tell our children or parents until we know exactly what we are dealing with the stage etc. 

Any advice, words of wisdom or just hand holding would be gratefully received. Kissing heart

  • Hello  (great name) and welcome to the group, although sorry to see you here after your husband's diagnosis, but a place where you will get lots of support and advice. Firstly, be aware that bladder cancer can be treated successfully and is not the end of the world. Many of us here have been through this. I assume you mean bladder wall rather than stomach wall in your post. A CT scan does not always pick thing s up in the bladder. A cystoscopy is the best test. You seem to be aware of the TURBT, usually a straightforward procedure done in day surgery or an overnight stay. Biopsies will be analysed and there will be a further few weeks wait for results. The results will give a stage and grading and will determine the next step. The waiting and uncertainty is always an anxious time and something we never get used to. Another CT is standard, just to check nothing else is going on elsewhere. Lots of experience here, so always someone with an answer to any questions you may have. Just again, many of us have been there. Best wishes.

    Best wishes to All,   rily.

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  • Hi,
    I was in your husbands shoes 10 months ago so fully understand the emotions you are going through. Waiting is the worst part because your mind goes all over the place, normally thinking the worst; I certainly did.

    Once he has the rigid cystoscopy to remove tumours and take biopsy there will be more waiting I’m afraid. But then you will get the stage and grade so will know what you are both dealing with. And then a plan can be put in place.

    Try not to worry too much and if you had any questions (and no question is silly or off limits) this forum will certainly answer and give you support.

    all the best 

    Chasam 

  • Thank you so much, Rily and Chasam.

    It’s so reassuring to have this group. My husband doesn’t want to tell anyone until we know more so knowing you are all here is a great comfort. Thank you for your generosity.  He is in his late 40’s. The consultant said he is young for bladder cancer. 

  • Hope all goes well for you both Pray I had cysectomy Dec 14th and was told straight away I needed a turbt operation..I was in shock but my husband took it much worse ..I had my turbt on Feb 1st stayed in hospital 1night and I have beeSparkling heartokay bit sore when peeing for about 2-3days and rested when I felt tired ...I have to wait 3weeks for biopsy results and I think this is the worse part you seem to be always waiting and worrying aboSparkling heart something ..it is easier said than done but try to take one day at a time and not let this take over your life ...worrying today will not change tomorrow's outcome Sparkling heart this is a true quote i heard recently xx we never told my family either until i went into hospital i couldn't avoid it then..try to keep happy go for a walk together or watch a film i will be thinking about you so many of us are dealing with this but keep strong Muscle you have each other take care xx

  • Good luck Hou.  Wishing you all the best. 

    I have a few questions for those here on the forum:

    My husband has had a blood test. What are they looking for in this? That the cancer has spread? He has a call with the consultant tomorrow  when hopefully they’ll discuss the results  

    How long would he have had  BC before the blood / blood clots started to show in his wee? What is the blood anyway - where does it come from? 

    I’m really worried as I remember last summer he was complaining of feeling really tired.  He thought he had covid but he had an antibodies test and he hadn’t. I’m quite sure he would have had a blood test then, but they wouldn’t have been looking for cancer at that stage  I’ve read that extreme tiredness is a sign of cancer ?

    Panicking  

    Thanks 

  • In May 2016 I was in your shoes Fast forward to today after tests scans turbt's 24 treatments with bcg and multiple cystoscopies over the last almost 5 years my husband remains bladder cancer free after his first all clear in July 2016 Only cloud on the horizon is his next cystoscopy is in 2 week Always an anxious time 

    This site has been  an amazing help Once you know what the treatment plan is going be people will pop up with their experiences 

    As Rily says bladder cancer is curable I appreciate you are in shock it's a horrible scary diagnosis but I just wanted to let you know there can be a positive outcome 

    Best wishes 

    Wilbert  xx

  • In May 2016 I was in your shoes Fast forward to today after tests scans turbt's 24 treatments with bcg and multiple cystoscopies over the last almost 5 years my husband remains bladder cancer free after his first all clear in July 2016 Only cloud on the horizon is his next cystoscopy is in 2 week Always an anxious time 

    This site has been  an amazing help Once you know what the treatment plan is going be people will pop up with their experiences 

    As Rily says bladder cancer is curable I appreciate you are in shock it's a horrible scary diagnosis but I just wanted to let you know there can be a positive outcome 

    Best wishes 

    Wilbert  xx

  • Thank you Wlibert!

    I’ve just asked my husband about the blood test last summer. And he says his bloods had come back “fine”. He doesn’t know I’m on here asking this 

    Rily, Chasam ? 

  • Hi . Bladder cancer can be present for a long time, sometimes years before displaying any obvious symptoms. Tiredness is a symptom, but on its own, cancer is not usually considered as it can be caused by many things. Tumours are made up of clusters of abnormal cells which after a while start to weep and the blood becomes noticeable. Blood tests can sometime show the presence of cancer in the body, but usually used to give the docs a picture of overall health and how well organs are working. Just part of the jigsaw to give them a bigger picture. Before the consultation tomorrow, write down your questions and record the conversation if possible as it is so easy to forget things, especially with phone consultations. Best wishes.

    Best wishes to All,   rily.

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