Newbie

Hi Paula, I'm not the best person to comment, as it's my husband who has had bc not me, and his didn't start like you're describing. But I just didn't want you to see people had viewed your inquiry and get no answer at all. No 1 welcome to this very friendly and supportive group where you'll likely get some sensible answers as people happen to log on. No 2, in the words of Dad's Army, "Don't panic" as the majority of bladder cancers, even if that is the cause of your dramatic and painful experiences, can be treated successfully one way and another. 

You'll find out more as you go along, so I'll leave it at that for now. Hope you don't have too long to wait for the ultrasound.

best wishes, Denby

Hi Denby, thank you for your reply - 

Im sorry to hear your husband had this diagnosis & hope all is well now.

I am trying not panic, was just a shock hearing the big C word. I am hoping this was just a stone but I have had stones before with immense flank pain but never blood.

Hopefully the ultrasound will be soon providing answers.

thanks again,

Paula 

x

Hopefully the ultrasound will provide some info indeed. Around 4 in 10 of us do get some form of cancer and it's time we all took it more in our stride. Should have said, yes Mr. D has had, like many on here a whole string of procedures/treatments, and now reached the stage of flexis [flexible cystoscopies] every 3-6 months, depending what it looks like each time. He is far older than you and has been on a cocktail of heavy meds for epilepsy since childhood - there is thinking that the cancer might perhaps have been triggered by the unholy mix of drug breakdown products in his bladder all the time on their way out. Who knows, for him it's not been a big deal [silver lining of Asperger's Syndrome in his case]. And the epilepsy has calmed down with the latest meds.

Glad to note you don't smoke anymore, now could be a good time to be sure you are getting plenty of sleep [guilty as charged!] eating well, getting fresh air etc, it will maintain the best mood and ready you for whatever is up with your waterworks to be dealt with. 

Thanks for asking, Denby

I know what you mean about the cocktail of meds. I am a Mental Health nurse & have seen first hand what a combination of drugs can do to the body and our mental health.

You are right about Cancer being common nowadays, We all know someone who has been affected.. I lost my Mum in 2017 to Gastric Cancer. My Dad had 1 kidney removed due to cancer & my best friend just last year passed away with Breast cancer. She was only 42 years old.. when my GP mentioned the C to me I froze. Makes you realise in a way we just don’t know what’s around the corner.

Paula xx

Hi paula sorry to hear you are suffering the way you are but you must ask for a flexi cystoscope asap its the only way of knowing i had my bladder removed in november after ten months of massive bleeding that would start and stop nobody listened to me i like you took photos of the blood and blood clots i was different to you as i had supra pubic catheter but was told it was normal for someone with this in situ but im talking a lot of blood anyways i had three ultrasound that gave me the all clear but the flexi was done and within the week it was decided to remove my bladder but remember that was eleven months of bleeding to reach that stage i would keep on at doc no matter what dont forget you can bleed for many reasons it doesn’t have to be cancer but best to be safe i wish you well linda 

Hi Paula, I had a big bleed in 2017, was given an ultrasound which clearly showed up the tumour. Prior to that I had small amounts of blood showing in urine occasionally over three years. My GP did not refer me to urology but decided it had a gynae cause. Sadly many docs fail to diagnose  and refer women quickly. So well done to your GP. Within a month of the big bleed I had a general anaesthetic and the tumour was removed. A biopsy confirmed bladder cancer. I had also been a smoker for many years, but lots of folk who get BC have never smoked. No point in blaming ourselves. It is what it is and no one deserves cancer. My cancer was not muscle invasive and though I was given the option to have my bladder removed I decided instead to have BCG treatment. I am 30 years older than you and still trucking along and living a full life, apart from lockdown , despite the cancer diagnosis, so try not to panic (we all know how hard this is) because all is not lost, there are many different BC treatments. Sending you best wishes and a warm welcome to the group nobody wanted to join. xxx

Although the 2 week pathway is standard for suspect cancer, provided the ultrasound is fairly soon, that should be OK. Looking back, my BC had been there at least 3 months before my diagnosis & was picked up after ultrasound for suspect gynae issue. US will show up if there is a problem, but a cytsoscopy would be needed to have a better look, with possible biopsy. Bleeding can be all sorts of reasons, so important to have it fully investigated. 

My friend moved house after losing her husband and her dog to cancer and narrowly surviving an aggressive form of breast cancer herself. The garden, which they loved and spent much time in, adjoined fields which used to be sprayed with all sorts. Statistics? opinion?... it was enough to persuade her to uproot.

Denby

Hello Paula.

I, too, had heavy bleeding in my urine in June last year.  Mrs G was so concerned that we went to A&E and I was put on the cancer pathway and diagnosed with BC in 4 days! Like you, the bleeding faded as time went on and disappeared. It has only returned briefly after interventions. My advice would be that if heavy bleeding occurs again, and if you are prepared to risk it, go to A&E. They will fast track a referral, if required. I had a flexible cystoscopy and a CT scan to check it hadn't spread further (which it hadn't).

Do take control of your situation; chase the GP if necessary. There's loads of information on the Macmillan website https://be.macmillan.org.uk/be/opt-144-booklets.aspx Click on downloadable pdf files.

The only other advice is to drink plenty of water; 2 litres a day, they say. You can make it more palatable with Robinson's Lemon Barley Water. This will wash out all the bits. And keep walking (if you have time from work!)

It is a hell of a shock but seven months on, despite having an aggressive type of cancer, I am all clear. 

I hope you get an appointment soon; keep in touch with us all.

Best wishes,

Gandulf.

Hi Paula

I am sorry that you are where you are. Apart from the blood clots, I had the same symptoms as you. It started as just painful weeing and then one day I saw the blood and went into denial for a few weeks. A good friend told me off and I went to my GP

Like you, there was nothing to show and the blood in my urine went away. I felt the odd stinging sensation when weeing but no pain

The blood came back, I was referred to Hospital and after tests I was told I have bladder cancer.

I had radical surgery, I chose to have my bladder taken out. Today I have a stoma and life is good.

I hope all goes well with you, please keep in touch

Inanna x