Hello , I'm new

  • 5 replies
  • 67 subscribers
  • 511 views

Hi all , I'm new and recovering from what feels like I have been hit by a speeding train ! 

Information overload for you all sorry just need to get it out 

I'm 47 and have been told that it's rare for somebody my age to have grade 3 bladder cancer with secondary bone cancer . I have 2 girls 14 and 10 and an amazing husband  

So my story starts not bladder related really .

I have had terrible pain in my right hip since November which seem to start as sciatica so took anti inflammatory and saw a oestopath in december as pain was getting worse who thought it was the piriformous muscle advice to do some treatment . Treatment didn't seem to be helping if anything asking it more painful , they advised to see GP and ask for MRI.

My Gp have not been helpfull at all and not wanting to do this placed me on numerous pills .

Im under the urologist so had some routine scans in december then I had blood in my urine late December early Jan which Gp though was a UTI prescribed antibiotics and dismissed blood . 

I then had follow up appointment with urologist in March informed him of the blood and he sent me for a Ct and cystoscopy .

Jump to April and a TURBT preformed and here we are now !!

Met my consultant yesterday who was lovely and talked about my treatment, but just hoping we can control the hip pain before treatment . Any tips help advice all greatfully recieved as feel very lost. 

 . 

Thanks Blush 

  • Hi and welcome to the group, although sorry you find yourself here. We know what a diagnosis feels like and understand the emotions you are going through at the moment. Many of us have been there. Be aware that bladder cancer can be treated successfully. You mention you are young for this, but it is not uncommon. We are seeing more younger people here all the time. We also know that many GPs are not great at dealing wit bladder cancer. Ladies in particular are always diagnosed a bit later and we see it often here. Were you given a stage as well as the grade and have you had a treatment plan in place? Can't advise on the hip pain, sorry, but hopefully someone will be along with some ideas. Best wishes.

    Best wishes to All,   rily.

    Community Champion Badge

    What is a Community Champion ?

  • Hi rily ,

    was given high grade and stage 3  just said incurable and hip pain is because of the cancer spreading to the bone !?!? 

  • Hi BC47Fizz and welcome to this group though you never wanted to be here, people are very very supportive. Certainly a monster shock for you your husband, girls and wider family. Do grab all the support and advice you can from the MacMillan helpline. There's also a carers' forum which might suit your husband and a non Macmillan group called Fight Bladder Cancer. Your husband and girls will be entitled to join your local Carers' association for free, many do a lot for young carers. Also speak soon to their school/s. Having worked as a secondary teaching assistant I can tell you that staff will usually be incredibly and discreetly supportive to your girls. Students in their kind of situation were always welcome and cared for in the support base even though they didn't have special educational needs, we provided a bolthole whenever needed.

    If you would consider applying for Personal Independence Payment [PIP] you will find immensely useful guidance on a website called benefitsandwork.co.uk  which only costs £19.95 per year to subscribe. The homepage is free and includes free self tests to get an idea of eligibility. 

    If you or a friend can do it, why not go back to the GP and confront them with what has happened? At least you would have the satisfaction that doctor will never ignore another lady with your symptoms again the way they did you.

    Thinking of you, Denby

  • Thank you very much , lots of information there for me to fo over . X

  • Welcome from me too.I hope you find the group helpful and supportive.Best wishes Jane