Low grade

Morning Poppy24

I was diagnosed in August ‘23 and had Turbt in Sept ‘23.  All cystoscopies clear until this March checkup and I have a small reoccurrence / booked in for TULA in two weeks time.  I too worry it’s come back if I’m doing anything ‘wrong’ in terms of diet etc / I don’t drink or smoke and have a pretty healthy lifestyle just turned 56 ‍♀️

Hi Poppy,

Welcome to this friendly group.

Sorry to hear about your reoccurrence. 

To be honest I'm not 100% sure about the treatment of low Grade BC, so hopefully someone will be able to offer some better advice soonest.

Wishing you all the best.

Trevor 

Hi, my brother had a similar path. Over several visits, recurrences G1, sometimes G2, which made them consider BCG, but decided not when next one was G1. After a few years he was clear long enough to be discharged. Probably most people in this situation have less need of a support forum like this, so tend not to be around here much.

Unfortunately it is the nature of BC, nothing to do with your current diet etc, although general advice is to aim for a Mediterranean diet for optimum health.

Hi Poppy24, It seems that each hospital has its own protocols for Bladder cancer treatment, but try speaking to your Consultant or CNS if you are worried. 

Sending you a hug. Love Ade xx

Hi Teaforme, 

Thank you for your message.

Sorry you have a reoccurrence, great you’re having a TULA, nice and quick without going under with GA, I’ve never been given the option even though the tumours have only been small. 

I wish I could have a good chat with a specialist to bash out all my fears, but never get anything further than being told it’s low grade and they will remove them as and when they come.

once asked what I could do to help myself and was told drink more water, on that lifted a large bottle up, honestly thought I was wasting their time and I should accept the fact it’s a nuisance rather than a threat. 

i was a mess the first year but now get on with life, just really disappointed each time it comes back, but no long fear the actual progress. 

thank you again wishing all the best with you TULA, and you’ll be free of it. X

Thank you Trevor 

Thank you for your message, hope you’re doing well

Think the treatment is based on each individual case, it’s just strange how similar cases to mine are treated, where I’m not.
I know treatments come with their own problems, and maybe the wait and see is how it will be for me x

Thank you Teasswill,

thank you for your message, great your brother was discharged, hope he’s still doing well. I 
changed a lot of things when diagnosed as with diet, but the handling of stress seems to be my problem, had counselling which helped, I know what to do, just fall back into the overthinking. 

thank you again Take care 

x

Hi 

Thank you for your message, hope you’re doing well. 

It does seem that way, I’ve tried on many occasions to talk to the CNS nurses, from diagnosis to the most recent reoccurrence they are never available. 
Getting my last results phone call which was 7 weeks after TURBT, they didn’t listen. X

I think I am very fortunate in Guildford as the Royal Surrey has a newish building - Stokes centre for urology gets great reviews.

Definitely upped my water intake too and yes my first year was also difficult to get my head round - surgery, family bereavement and a house move all at the same time!  The clinical nurses always say feel free to contact us at any time if you have questions so maybe you should try that approach and I don’t think we should be thinking that it’s wasting their time as each individual should be able to get support required. 

I wish you all the best for any ongoing treatments - pretty sure I spend the best part of any given day in denial really but that’s how I cope with the worry of it all.  

take care and good luck with it all

Hi again Poppy,

I agree I do also find it strange how different Trusts treat the same diagnosis.

As an example, I'm on BCG and scheduled to have 27 instillations, but elsewhere some  only give 18..

With regards to diet etc, mine hsd changed. Most notably giving up Pepsi and coke etc. Also switching tea and coffee for herbal alternatives.

I drink 2 to three litres of water, lemon barley water a day... I'm on the loo a lot which can be tiring lol.

I'm certainly eating a lot healthier also. Given up processed and red meats etc, to name a few.

Not sure if it's helping but I don't really miss the things I've quit.

My only treat these day's is a pint or two a week of real ale or Guinness, I do like a pint in a pub.

I do need to be more active.. I WFH full time so need to get out and about more.. I used to love the gym, but over the last few years found it difficult due to the treatments etc, but that is just an excuse lol.

Wishing you all the best.

Trevor