Recently diagnosed newbie

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Hi all, new to the group and wanted to introduce myself. I'm a 47 yr old male recently diagnosed with muscle invasive bladder cancer , . Had cystoscope on 26/8 after 3 weeks of being treated as uti , where they discovered a tumour in my bladder was told I'd be taken in to have it removed and sent to lab for biopsy , on 28/8 I received a call from urology with a surgery date (cancellation) for the following week 4/9  inbetween these dates I had pre op ,consent clinic and ct scan . Operation went well but was informed by surgeon he was 99%sure tumour was cancerous but would have to wait for results clinic , I asked what ct showed and he said he'd not seen the results yet . 3 weeks after op received call to meet specialist nurse who confirmed it was cancer , and advised that  radical cystectomy would be her recommendation as radiotherapy in her opinion wasn't as successful,  however again would have to wait until mdt meet up to discuss my condition when they had all results to hand , as ct results were still not reported yet , now into week 4 post op and still in limbo as no one has seen ct results , I just wish they'd hurry up and have all results,  to allow me to move forward with treatment etc. As you can all imagine it has been a very stressful few weeks for my family and I, lots of tears and why me?  I'm also not overly keen on the radical cystectomy route as im terrified of potential risks and after effects of surgery ,though my family are encouraging me to have it  , currently signed off work from GP,  though trying to have him allow me to return as need to work or mortgage and bills go unpaid and can't/won't put my wife and daughter through any more. Anyway that's my long winded introduction to the group ,and probably the first of many .

  • Hi Cloelanber

    Firstly Welcome to the Group nobody wants to be a part of but we are all grateful it’s here and sorry to read of your diagnosis  im a male of similar age to yourself infact just a couple of years younger at 45 and received a my diagnosis in March this year I can’t offer any advise on MIBC unfortunately as I was NMIBC but what I will say there is people on here who have had MIBC and will be able to answer any questions you may have regarding your diagnosis and possibly arm you with questions you may not of thought about asking and I’m sure they will be along in due course 

    Ste 

  • Hi, 

    Welcome to this group, but sorry to hear about your diagnosis.

    It's difficult to get your head around for sure, especially at the beginning when you're waiting for the results. 

    Hopefully they will get back to you soonest, the waiting really is hard.

    Is your work physical? I was advised not to do anything strenuous for at least 4 weeks after my TURBTs. Fortunately I work from home, so didn't miss much work, but must be an added concern. MacMillan can offer some advice regarding finances etc and they have a forum specific for financial advice if that helps.

    Keep us posted.

    Trevor 

  • Hi Chloelanber,

    I'm a female invasive bladder cancer survivor. Just over 2 years ago I was in your position though only joined this group a few weeks ago. Everyone here has gone through something like your experience and I am sure they'll give you their stories and advice soon. My path was Turbt, diagnosis, chemotherapy, robotic full bladder removal, stoma. And a little immunotherapy though that was stopped as I didn't tolerate it well. 

    I have realised that each hospital has its own protocol and each seems to do things differently. So if your pathway turns out slightly different to mine don't worry.

    CT scan results, however seem to take around 4 weeks everywhere. There is a shortage of consultant radiographers and they are the ones who have to interpret the scans. It can be frustrating but better to get a good review I think so that the multidisciplinary meeting has something clear to work with.

    You are at the start of this but at least you have met the nurse specialist who will usually be a great help and will be able to guide you through this new world that you have landed in. Once they've decided the way forward, if you agree, things will speed up and you will be inundated with meetings, treatments, phone calls and surrounded by kind medical staff.

    I can appreciate your worries about work etc as these are obviously important and practical. I think the Macmillan phone line may help there. 

    I'm retired so that wasn't one of my problems. On the other hand at nearly 70 when diagnosed, the thought of a big operation was daunting. And my family found everything very stressful, much more than I did. Like I say, we all deal with things differently. 

    I managed the chemo and the bladder removal ok and have had no problem coping with a stoma once I got the hang of it - there are very helpful nurses that teach you all about it in hospital and afterwards. I chose that option as it seemed easier to manage than the newer alternatives. And not having to wake several times each night has vindicated my choice. 

    And the best thing, apart from still being alive, is how quickly life afterwards returned to normal. That was something my husband most worried about, and he was relieved to get back to life (as we had been living it) without an invalid for a wife. Me too of course.

    Good luck with it all, to you and your family. 

    Latestart

  • Hi  and a welcome from me. Early days for you yet and there should be some more tests and scans in the pipeline, with probably a follow up TURBT to double check. When all results are in they will come up with the most appropriate plan. My oncologist would disagree with your nurse by saying there is no evidence to show that neither RC or RT is better than the other in cases of MIBC. It all depends on individual circumstances. There is experience of both routes here and always someone able to answer any questions. In my case of MIBC, I went the chemoradiotherapy route ten years ago and can help if you go that way. Waiting for results and appointments are always anxious times, but we get there in the end. Lots of support here, so stay with us going forward. Best wishes.

    Best wishes to All,   rily.

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  • Hi Cloelanber,Welcome to the group.There is plenty of support and advice here to get you through.These early days are hard waiting for tests and results and adjusting to a diagnosis.I hope you will find it helpful here.Best wishes Jane