Bladder cancer newly diagnosed

Hi and welcome to the community, although sorry you find yourself here. Unfortunately, it is not the first time we have had ladies in particular being diagnosed late, but that is bye the bye for now. Any cancer diagnosis can be very scary and many of us will know the feeling. A CT scan is standard and usually just precautionary to rule anything else out. It also gives them a better picture of what they are dealing with. Bladder removal is not the end of the world and hopefully someone will be along to share their experiences of this. Mine was invasive, but I went the radiotherapy route to preserve my bladder. Something you may like to look in to. Get as much information you can on the alternatives before committing to a decision. Feel free to ask any questions here, or just let out your thoughts. We understand. Best wishes.

Hi Blackcat800,I feel for you,I'm experiencing similar emotions.I'm newly diagnosed and also facing bladder removal.It all feels so strange and such a shock.I can relate to the lack of concentration.I'm usually so busy but just can't be bothered with anything at the moment.All these feelings must be due to the reality of receiving a cancer diagnosis and I'm confident that they will pass.I'm sure you will find lots of advice and support here.Thinking of you and sending love & best wishes.Jane X

Hi Jane thank you for your response I was so pleased to receive a response which understands how I feel.  I am sorry that you are in the same situation.  But I am sure that we will both be ok.  Sue

Thank you for your response and insight into your experience.  

Best wishes

Hi Sue,I hope we can support each other.Do you have supportive family and friends ? Love Jane

Hello Blackcat800, as Rily says welcome and do use us all out here any way you need to let out your feelings, need for information and support from folk who have at least some and often a very exact experience of what you're going through. As Rily says do think it over carefully before you take a decision. Stay in control is my suggestion, you do not have to do what is suggested to you unquestioningly.

i have posted a lot in other 'discussions' on here before you joined us, about dreadfully lacking communication from our poor heroic struggling NHS. You say about all that 'positive' this, that and now the other. It does leave you feeling disempowered when they U-turn. They are not living this, you are and we are. Rily has had the radiation treatment and kept his bladder, so have others, please think about the comparison between that and what your hospital are saying to you. Macmillan have a downloadable, or they will post it out, free booklet on 'invasive and advanced bladder cancer'. Have you read that yet? If not I personally do recommend it. My husband's bladder cancer was not even invasive though classed as G3 ie high risk of recurrence and yet we had bladder removal suggested to him as being " an equal option to chemotherapy." (I quote the surgeon). Just 4 months and 7 once a week  chemo treatments later he has an all-clear-for-3-months [which is what you get in his situation for a few years due to the recurrence risk]. But what's 4 outpatient visits a year compared to dealing day and night for the rest of your life with no bladder IF [I certainly wouldn't deny it's a big " if"] you can get away without that? These are the things only you can weigh up, of course that's personal.

Please try to have a be-kind-to-yourself weekend while you wait for the CT scan, and don't let yourself rush the decision fences until you get that result, or let anyone else rush them for you. You mention 'the inevitable' but perhaps it's not 'inevitable'.

A big electronic hug to you wherever you are,

Denby

Hi Jane my main support has been my eldest son which in many ways does not feel right.  As there are certain intimate conversations which he doesn't want to be involved in.  Also he struggles with the thought that this might kill me.  He is not ready to face the thought of life without his mum.  Even though I keep reassuring him that I'm too strong to let it defeat me.  But there are times when I think he should be reassuring me not the otheway round!! Do you have a supportive family.  Sue

Hi Guys. Hope you don't mind me adding my personal experience of dealing with family. In the early days, I kept my dark thoughts to myself hoping not to worry others. Then one day, I caught my wife crying and realised I was not the only one affected by this. From then on, I found it was better to keep everyone in the loop. Wife, children, family and friends. In my case this worked. I would tell anyone every detail of what I was going through. I even sometimes put a humorous slant on things regarding the silly indignities they put us through. This helped people talk openly about it without the usual elephant in the room scenario. This worked for our family, but obviously may not be for everyone. Best wishes.

Yes yes yes Rily. After discovering the criminal mismatch between the common-ness of bladder cancer and the lack of investment in sorting it, presumably because people are coy about discussing "down there" issues, I have decided to make it acceptable to discuss by breaking the wall of silence wherever I go. Hopefully this will help others 'come out' and help people get diagnosed earlier too.

Maybe we should get some T-shirts printed, " Bladder cancer isn't a certain death sentence. But not knowing you've got it could be," how about that? And when is someone going to run the 'Be clear on cancer, blood in your wee, see your GP" campaign again??

Denby

Hi Denby You may not know it, but the T shirts are already in circulation. You may like to look at ActionBladderCancer UK, and FightBladderCancerUk. Both charities promoting awareness. Both have been campaigning for years, but we still get GPs treating ladies with blood in urine as UTIs with repeated antibiotics. Best wishes.