O M G !

Hi all,

Well, first off, great site, reading everyone's posts I have decided to join in! Not something I would ever dream of doing to be honest. 

But maybe I can help someone or they can help me. 

I had a bleed , saw doc , sent for a look at the hospital, had a tumour found, had it removed, and now I am going to see consultants on the 19th to talk about treatment options and to tell me what type of cancer it is. 

What I found unusual was the fact that no one likes to say the "C " word!  In the end it was me who asked " is this cancer"  to be told yes.  Then like many of you, I suspect, I googled bladder cancer. The facts are all on line, but it's not the facts that are upsetting me it the effect it is having on my children.  So should I tell them the facts as they relate to me or should I sugar coat it to stop them having it effect their lives? 

Also, does diet need to change? Do I have to stop enjoying alcohol? 

I have stopped smoking ( bit late I know)' but have been told that's the best thing I can do .  Also drinking so much water and checking the colour of my urine is getting to be an obsession , and  I would like  to know if that is normal in these circumstances.

Can I carry on as normal or do I need to change my lifestyle? 

19 Replies

  • I heard turmeric tablets were helpful for prevention of cancer...also ginger tablets. Homemade broccoli soup is apparently good too. Anything is worth a try. Good Luck.

  • Thanks...I will try and purchase some ta lets 

  • Best advice is to speak to your care team about alternative therapies. Some of them have been proven to have an adverse impact on regular cancer treatments. Health professionals will help you avoid the snake oil, saying that bear in mind that most over 50s will normally benefit from a good multivitamin supplement containing B, C & D vitamins.

  • Hi, I was also surprised that the medical staff didn't mention the C word, and it was only when I saw that the final T of TURBT refers to tumour that I realised I had one, and that it would probably be cancer.

    I was also more upset about the effect on my children than anything else.  Mine were in their late teens, with important exams coming up.  I left it until just before the medical treatment would make it obvious something was wrong.  I tried to play down the dangers as much as possible, but I did say that it was bladder cancer.  The boys reacted differently, but my oldest son, who was in his first year at University, went to pieces for a couple of weeks, very upset and not attending lectures etc.  I didn't realise this until afterwards, and wish I had done more to help him deal with the initial shock. 

    Fortunately, the BCG treatment has been effective in keeping me cancer free for the last two years, although I did have one biopsy result with a very small amount of CIS in it.  That was worrying at the time, but I didn't tell the boys about it, and would only have done so if it had resulted in me having to have surgery.  I think it depends very much on the age of your children as to how much you tell them, but if you mention cancer they will inevitably worry that you're going to die from it.

    Giving up smoking, drinking lots of water, eating a healthy diet and exercising are the most important things you can do.  Good luck with your treatment.


  • Chris yor story is so similar to mine. I was diagnosed about 5 weeks ago have had TURBT removal but surgeon said it was not looking good and mass had been there a very long time. Having CT scan tomorrow to see where/if it has spread. My main concern is the children my daughter is in her first year at uni and my son is about to take his A levels. We have tried to water everything down but neither child will speak about it and my son when not in school is never away from my side, this is a boy who normally plays rugby, lives in the gym and is the life and soul of any party. When I say diagnosed no one has actually mentioned cancer. I am female, 52, non smoker, not overweight and love any kind of sport, so this can affect anyone, I'm trying hard to keep positive but finding it hard.

  • Hi  don't panic

     I'm sure things will be OK

     I'm am female  age 61 and to be td you have a cancer is very scary.  However from what I have read it's something that can be controlled.    I go for my treatment options on Tuesday . I had no idea that I had cancer it's a shock however I intend to carry on as normal. 

    I feel for you  . 


  • Thanks Saviie, I'm hoping to hear my options next week after they've analysed the scan. Keep in touch I have my fingers crossed for you.

  • Carry on carrying on is my motto. When diagnosed type 2 diabetes 20 odd years ago I vowed to live long enough to let something else kill me!

    Then along came CDM so that was added to the equation. Heart attack and 2 stokes made me realise that it would probably be wise to moderate what I wish for! Now Bladder cancer added to the list.

     I intend to live for ever......So far, so good, even though everything seems to be trying to kill me. Must remember to avoid walking in front of that bus!!

    Best wishes, keep the faith


  • Hi

    Yes, my two children were in exactly the same years.  I think I would all I could to project a confidence in future treatment and play down the seriousness, as you are trying to do, for at least the next couple of months, while your children deal with exams. My eldest ended up talking to a University counsellor and getting dispensation on a missed deadline. It's worth letting the school know the situation, which I also did.

    The best of luck for your scan, and stay in touch.


  • Thank you Chris... What is CIS?  

  • Hi CIS stands for carcinoma in situ.  It is a flat tumour on the surface, which can be hard to detect and difficult to remove completely by surgery.  It is aggressive and can spread to the urethra & ureters, but it can't metasticise, so it's important to stop it spreading and developing into solid tumours that can grow into the bladder wall.  BCG is really the only treatment for CIS, other than a cystectomy.


  • Hi Saviie everybody on this site will be able to relate what your going through and your thoughts.How old are your children?I have 5 in total,3 grown up and 2 aged 9 and 8 on Friday.Told the eldest and they were amazing so supportive and with me all the way.After discussing with my ex we decided not to tell the youngest,even now not sure it was the right thing to do,passed it off as a old medical problem but to be honest I suspect they know more than they let on.I have never smoked up to knee replacements was always very fit and my diet was ok and still got bladder cancer!!!Do what your happy with involve your good friends and family mine were great.This site is helpful as you can talk and relate to people going through the same thing.I really hope your results on the 19th are clear and you can get on with your life.Worse scenario trust the medical people and Macmillan nurses they will make sure you get the right treatment and support.Fingers crossed for you take care and let me know the outcome.ALL THE VERY BEST

  • Thank you.... I will  take care yourself 

  • Good for you on posting Savlie. I suppose each of us deals with this differently, and likely our loved ones are similar, in that the each internalize it differently. I have been very open from the get go, but my kids are college/university age. The only thing that my wife and I held back on was when we didn't know. When I was diagnosed via CT scan that there was something in the bladder, we never said anything until we knew what it was - after the cystoscopy where the doctor said it was cancer. If you don't have facts to convey - I think that leads to people making up their own anxiety. I also found that before I had bladder cancer I "hoped and worried" for others. When you have it, it is all about "the fight" - but that's hard to understand for those that don't have it. I'm not saying we as patients don't "worry", but I think our mindset shifts to take on the battle. There seems to be a fair amount of naturopathic literature on PH levels, drinking glasses of lemon water, limiting sugars...  I have not stopped consuming alcohol beverages...which flies in the face of "no sugars". I guess vodka would satisfy that requirement. Moderation, like always, best regardless. Cheers.

  • Ha.....so Vodka.... hey...sounds good to me..... What will be will be.....I stopped smoking ...no one can believe I've managed that.....!   I shall wait and see what they tell me on the 19th I suppose..... Take care 

  • Hi I like you am waiting for treatment I found it best to be upfront with the children then if I'm having an off day they know why otherwise they can take you for granted as most children do they are all 30 something and have their families and life pretty much goes on as normal I get more calls and visits but that's a bonus .

    I too have given up smoking but I do have a drink when I socialise as for diet no one has mentioned that I change anything but I do keep slim as I've always done .

    Yes the drinking water and checking urine has become an obsession but I think it quite normal and if like me you have the BCG treatment wiping the toilet seat with detox wipes and putting bleach down every time you go will become an obsession as well.

    I wish you well with your treatment and would love to hear how you get on.


  • Many thanks  yes I will keep  touch .does the treatment of big make you I'll?  

  • I got told this morning I have a cancer Timor and they are going to operate next Thursday....I quit smoking 2 years ago better late than never I guess

  • Getting or giving a cancer diagnosis can be traumatic. The consultant who performed my diagnostic Cystoscopy told me that there was some abnormal tissue in my bladder. I'd seen it on the monitor so I wasn't too surprised to hear it.

    As I left the consulting room I was approached by a very worried looking nurse. She asked if she could discuss my diagnosis with me. Of course I agreed.

    She sat me down and explained that I had abnormal tissue and that they would need to take a biopsy to determine whether the tissue was cancerous or not.

    I'm probably best described as pragmatic so I had a factual discussion about what the next stage of treatment would be. During this discussion, the worried look left the nurses face and she became more informative about the disease and the treatments available and pointed me in the direction of the macmillan and cancerresearch websites for more info.

    On the way home, I realised that the nurse looked so worried because she was a genuinely caring person who doesn't like giving people bad news and who can blame her. Some people go to pieces when they can't process what they're being told and there's no way of knowing how a person will react until you tell them.

    From reading your post you're now stuck in that horrible limbo land of not knowing what you've got or what treatment you'll be offered. The truth of the matter is, there's not a lot you can do until the pathology results come back.

    When you get you're pathology results back, you'll be told the grade and stage of your cancer. You need to listen to the results carefully as this determines your next course of treatment.

    You will almost certainly be offered a fully body CT scan to determine whether the cancer has metastised and you will likely be booked in for another TURBT.

    I prepared for the results by reading the NICE guidelines, I found them easily via Google. It's worth pointing out that the NHS offers standardised treatment and publishes the treatment guidelines, so you can read up on what to expect.

    My first TURBT told me I had pT1G2 cancer, my CT was clear, and the second TURBT told me that I had CIS. Which means that I get a 6 week course of BCG (I'm approaching week 4) and another TURBT to see if the BCG worked (I believe it works for 70% of patients). If it works I'll get another 3 week course and regular Cystoscopies. (Possibly TURBTs) Not sure as I'm not there yet. I also believe that CIS is the more aggressive form of Bladder cancer and has a 63% chance of progressing into something more serious. So make sure and ask your consultant if you have papilliary cancer or CIS. theyre are other types, but they're extremely rare.

    As for telling the kids, I have 10 and 8 year old, I've told them that I have cancer, and that at this stage it's not life threatening as I didn't wan't them to worry, I'll tell them what they need to know if the disease progresses otherwise I'll wait on them asking questions and answer them truthfully and factually when they do.

    I hope this helps, please note this information and advice is based on my own experience and outlook on life and I am not a health professional. If in doubt speak to your cate team.


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