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  • Forum Post: RE: How long do most people wait after a recurrence is discovered during cystospcopy?

    Thanks Marcom, I appreciate you getting in touch. I took a brief look at your situation and am glad to see that you are still holding on to your bladder. I was surprised that you started at pTa Grade 1 and progressed to where you are. Usually low grade at outset sets the standard for further episodes...
  • Forum Post: RE: How long do most people wait after a recurrence is discovered during cystospcopy?

    Thanks everyone for all your support. To cut a long story short "PALS" were not able to help me and as it had reached a situation where my GP couldn't make any headway and I was feeling very unwell, passing blood and had constant feelings of cystitis, I went to the complaints department...
  • Forum Post: RE: How long do most people wait after a recurrence is discovered during cystospcopy?

    Thanks everyone - I will take everything you've said on board. Right now I'm distraught about this whole scenario and can't believe it's happening. Neither can my family. I'm also having frequent urinary tract infections - just over another lot of antibiotics. I have read that UTI's...
  • Forum Post: Dad going into Hospice

    Hi, Dad was diagnosed with bladder cancer a few months ago, he had surgery but they couldn't get it all so recently had 4 weeks of radiotherapy. He seemed to get through that OK, but then approx. a week after completing course started getting severe pain when going to toilet. His pain became so extreme...
  • Forum Post: Should I tell my adult children I MAY have cancer?

    I am due for a cystoscopy shortly to find out whether I have bladder cancer. My big dilemma is whether to tell my three adult children (son of 30 and 28 year old twin daughters) that I may have cancer or to wait until the diagnosis is confirmed. As a mother my instinct is to protect them from unnecessary...
  • Forum Post: RE: How long do most people wait after a recurrence is discovered during cystospcopy?

    Hi WCG, re. the pathology report - all they did back in early May was a cystoscopy. The malignancy which was seen by the urologist was not analysed or dealt with at that time and no sample taken. I was just put on a 'red flag' fast-tracked (wouldn't like to see 'slow tracked!') list...
  • Forum Post: RE: How long do most people wait after a recurrence is discovered during cystospcopy?

    Thanks Sue & Blanket & everybody out there for your support and comments which have given me the courage to get in touch with PALS. Unfortunately I've tried ringing them several times and it just goes on to telephone answering machine - but I'm not giving up and have drafted a letter...
  • Forum Post: Bladder removal - Is there another choice?

    I'm posting on behalf of a very good friend who was diagnosed with a grade 3 tumour in the bladder approx. 18 months ago. They have been receiving the BCG treatment and everything seemed to be going very well until they had their last cystoscopy, and they were advised they had a CIS tumour. They...
  • Forum Post: RE: How long do most people wait after a recurrence is discovered during cystospcopy?

    Hi Blanket, (Your username sounds very comforting by the way!) thanks so much for that info in your case. You're very kind... Yes, from what I can see, it may be as late as November before I'm taken which would make it 6 months waiting, that's if I get seen to in November at all. I think...
  • Forum Post: Chemo advice

    Hi, My Dad has terminal bladder cancer (he was told he has around a year to live, maximum, in March this year) and is currently about half way through his first course of chemo. He is worse than he has ever been, hardly eating, sleeping most of the time and so weak that he can't get out bed with...
  • Forum Post: RE: How long do most people wait after a recurrence is discovered during cystospcopy?

    Dear Travelling On, What an odd situation for a recurrence of cancer not to be immediately followed by a treatment plan. You certainly should take the matter up with the hospital authorities. Over a 4 year period I had 2 cystoscopy apps. that were a couple of months or more late due to some mix up...
  • Forum Post: RE: How long do most people wait after a recurrence is discovered during cystospcopy?

    Hello WGC, Thank you so much. I went to see my GP yesterday again and he phoned the hospital in my presence. GP's rarely reveal what they think but he assured me that he thought it was ridiculous. They are to let him know what is going on - hopefully soon. He knew the consultant's office number...
  • Forum Post: RE: How long do most people wait after a recurrence is discovered during cystospcopy?

    Hi All, Well I had my break - for longer than I expected and enjoyed it, but for the fact that I kept wakening up during the night wanting to run to the toilet - nocturia they call it. It was good to get away but I couldn't go abroad, given that I may have been called and so there was more than one...
  • Blog Post: 2-5 months Not nearly enough time!

    A brief background. I am 37 and live with my husband and two sons aged 4 and half and eight, My parents have lived for many years in the middle east due to dads work. my sister also with two boys lives in New Zealand, despite this we are still a close family and are in regular contact, the wonders of...
  • Blog Post: Bladder cancer webchat transcript

    Specialist nurses John and Hilary recently joined us in the chatroom for a live webchat all about bladder cancer. They answered questions on things like causes and risk factors, symptoms and testing, treatment and bladder removal. Here are all the questions and answers from the chat. You speak...
  • Blog Post: Bladder cancer webchat – Wednesday 17 July

    Next week, we’ll be holding a live webchat about bladder cancer with two specialist nurses from our Macmillan Support Line. John Newlands and Hilary Weaver will be live in our chatroom answering your questions on Wednesday 17 July from 12-1pm. John and Hilary will be answering questions...
  • Blog Post: thoughts from the front line - 113

    Well hello everyone! It has been a year since I last posted anything on here which means that we are just a few days away from the 2 year anniversary of my operation and, yep, I'm still here! Live and kicking! :-) Sending big hugs to all of you on here wether a sufferer of cancer or a family...
  • Blog Post: Trying to be strong...

    I've just completed my first full week of work after my dad's diagnosis and feeling really shattered. I'm so lost as to what I should be feeling right now. I want to be with my dad all of the time but know that this just isn't possible as I need to keep a cetain degree of "normality"...
  • Blog Post: Not good news

    I know it's been a while since I wrote on this blog but things seemed to have moved at quite a pace and time has gone by so fast. Mum had her op with an epidural as they said she was too frail for a general anaesethtic and she made a good recovery after a couple of days in hospital. Today we had...
  • Blog Post: Introducing myself

    Hi, I am Paraig, a 59yr old male who was diagnosed with bladder cancer in Vov 2010. Since then, I have had three TURBTs with the hope that the growths would not return. Alas they did and because the orginal growth had created a diverticulum this area is still creating problems. The consultant informed...
  • Blog Post: A Sisters View - The start of our journey 04/04/11

    The basics, Me - 35yr old mum of 2 and manager of a pre school playgroup, son 15yrs and daughter 4yrs who has high functioning autism, Husband who i've been with 8 yrs who has genitifemeral neuralgia ( Chronic Pain in pelvic area and finds walking hard - works from home. My Parents - love us to...
  • Blog Post: TSA Humiliates Bladder Cancer Survivor

    Tom Sawyer A bladder cancer survivor from Michigan who wears a bag that collects his urine says he was patted down roughly by a security agent at Detroit Metropolitan Airport, causing the lid on the bag to spill its contents on his clothing. Sawyer is one of the members of the Bladder Cancer Advocacy...
  • Blog Post: Bladder Cancer

    Although there are several types of bladder cancer, we usually think every time we hear or read this term transitional cell carcinomas. Are cancers that form inside the cells that form the lining of the bladder. One other cancers that come under this heading are squamous cell carcinoma and adenocarcinoma...
  • Blog Post: Less of a worry now......

    As you all have read over the last few months following my diagnosis of Bladder Cancer, I have been worried that i had something sinister going on in my rectum, as all the symptoms were there similar as with the bladder problems, so ones mind conjours up all sorts of configorations as to what must be...
  • Blog Post: He's Gone

    It's been a long time since my last blog and sadly, this is my last blog. My lovely, uncomplaining husband passed away on 25th Oct. 2010. He fought so strongly for eighteen months, way past the anticipated time that the Drs. had given. Now, I'm totally lost. I can't think straight...
  • Blog Post: uncomfortable week.........

    Hello everyone, Thanks to my friends on here for keeping in touch and shareing your experiences with me, they are all private matters that we all seem to be happy to discuss with each other, which i find reasuring in as much as you all seem to have come to terms with what is a terrible situation to...
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