My husband just diagnosed

  • 74 replies
  • 90 subscribers
  • 11741 views

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

  • Hi . These scans are standard procedure and good to know things are moving for your husband. The CT scan is a full upper body scan to check there is no spread to other parts. This is usually just precautionary. The MRI scan is focused on the the pelvic area, especially the bladder. This scan is far more detailed than a CT and gives them a picture of what they are dealing with prior to TURBT. You don't get any details on the day as the images go off to be analysed and this takes several days or weeks. Scans are kept and any future scans are compared to check for any changes. Best wishes.

    Best wishes to All,   rily.

    Community Champion Badge

    What is a Community Champion ?

  • Thank you, Hou.  Feeling a bit more like I can cope getting through the day. Focusing on my husband and the children. Need to be strong for them. The children are showing signs of stress, even though we are not telling them anything, in a small house and in lockdown they must be sensing something is wrong. That sounds like a long wait for your scan results. You must have been very worried not hearing anything. Glad the results were good - it must have been a huge relief 

    Thank you, Rily.  That is so good to know. I don’t want to bug my husband too much (not that he would know this information). I’m hoping the scan results will be back by the time he speaks to the consultant at the end of the week, but if not then when he has the TURBT. It will be a worrying wait until then...

    Thank you again  

    X

  • FormerMember
    FormerMember

    Hi

    Our journeys through this are all unique but  have so much in common.  Experiences from people in this group have helped me a lot over the past 8 months.

    I can only echo many of the things other members have posted already :-

    • the first part where tests are being performed and waiting for results is naturally a very anxious time
    • try not to worry (easier said than done)
    • bladder cancer can be treated successfully

    After my first flexi in Jun-2020 where it was confirmed there were tumors in my bladder, a series of CT Scans, MRI Scans and the TURBT procedure were arranged - I was worried. All sorts of thoughts went through my head, sometimes were worse than others. 

    We started going for walks as a way to take my thoughts away from it all.  For me they really worked, the combination of a bit of physical exercise, being outside and a little chat as we walked took the edge of things on many occasions.  Personally i found it easier to talk to my wife about some of how i was feeling when we were walking as it didn't seem as ominous as sitting down at the table and talking.  Being able to share it was helpful.

    The walking, which simply started out as a way to divert thoughts, then actually gave me a goal.  I started loosing weight and getting a bit fitter.  When I had that goal it was good as it was then something I often thought of, so even when not out walking I was thinking about going out for walks.

    My diagnosis was Stage 1 Grade 3 which is very treatable and 8 months on I've had 2 TURBTs, the induction course of BCG and 2 further flexis which have shown no tumors.  I live as normally as everyone else.

    I know in the grand scheme of things it is still early on in my journey to say it is all over and done with, but each 3 months now I have a flexi, my next will be due in a month or so and I feel positive about them - to get the re-assurance there is nothing there.

    Wish you and your husband all the best as things progress.

  • Thank you 5amsung.  You are so generous sharing your story.  So pleased to hear things are positive.  Wishing you all the best.

    The forum is a godsend. thank you everyone. X

  • Hi thesunalwaysshine, after a cancer diagnosis the NHS protocol for everyone is MRI, CT scans and bloods. It is to check there are no other tumours which have spread to other areas. My tests all came back clear but it took a couple of weeks to get my results. After two years of treatment  I was called in for another CT scan, also clear. The waiting time is always hard. I try to focus on the fact that worrying will make no difference to the result, it will just depress and exhaust me. However the closer I get to hearing a result the more anxious I feel. Cant be helped. At the TURBT operation the bladder tumour will be removed (hooray) and any extra biopsies they think helpful will be taken. It generally takes two more weeks to hear about the grade and stage and what treatment the multidisciplinary team recommend. Hopefully you will be allocated a Clinical Nurse Specialist who can become your best friend through this journey. I'm afraid it is a one step at a time experience but there are many amazing treatments. Fingers are crossed for you. xxx

  • I was in the middle of writing much the same thing H ! I’ve always found it helpful to make a note on hospital letters of what was discussed/who I saw as you don’t always see the same person.It helps to keep track of what tests you had and when.I hope you are finding this group helpful.We are all here to support you and your husband.Love Jane xx

  • Thanks so much Herothedog and winkers60.  Sharing your stories means so much. Heart

  • Thank you for sharing your story ... our families are also going through this journey with us and are worried and stressed in fact I think it maybe worse for them Confused I also find walking helps a lot I use to attend a mindfulness and meditation class weekly but covid put a stop to it and at the moment it would really help ...  I do the breathing techniques I was taught when I walk and just take in all my lovely surroundings.. hope you keep  doing well take care

  • Hou,  We just went for out for a walk.  Yes, it helps. I have a meditation app, too. Trying to be strong for my husband. I have periods of overwhelming sadness and worry, but keeping busy helps.  It’s been 4 days since diagnosis. Feels like the next week and a half until the TURBT is an eternity, but we’ve done 4 days, so it can be done..

    Lots of love to everyone going through this. X

  • Thank you xx hope you are OK Ok hand xx