Bladder cancer

A place for people affected by bladder cancer to support one another, ask questions, and share their experiences.

How long after TURBT can treatment begin?

Plantaholic1
Posted by

How long after TURBT can any necessary treatment begin? Waiting for results but wondering when any treatment might take place? Want to get away for a short holiday if possible. 

rily
Posted by

HI . Everything really depends on the biopsy results and what sort of treatment is needed. It takes about 6 weeks for the wound to fully heal, but some treatments can be started earlier. As I say, until you know your results, we can only speculate. Best wishes.

Best wishes to All,   rily.  What is a Community Champion ?

Denby
Posted by

Try calling your CNS about your desired holiday plans, ours was helpful about this. And if you get a don't know or an answer you're unsure about, try your consultant's secretary as she/he can ask him/her for their opinion about you going away.

If you get put on either BCG or mitomycin [chemo] both into the bladder, you may have somewhat unpredictable waves of fatigue if my husband is anything to go by. The treatments are done weekly and he found with each course he felt quite perky after the first, less so after the second, quite knocked out but only for a day-and-a-half, then two days, then three days etc. So it would certainly be good to get away before the course started, at the peak of wellness [especially if you'll have to drive far] between after-the- TURBT and start of those if that's what you're to get. 

Had we known more back then, eg from on here, I think I'd also have tried to deal with any of those need-to-just-get -the plumber/electricianin  to fix whatever/self to cut the grass/hedge etc job-y things in that time window too, so as to reduce no-energy-to-do-it frustrations during the course. Trouble is if you're an ignorant newbie not getting much info/support from your hospital, like us, you don't realise that you can't just ignore it, but need to plan your life a bit to take account of the predictable ups and downs.

Anyone [Rily?] for compiling the useful tips from us all into a guidance booklet MacMillan could publish to be given to newbies at their first hospital appt? How I would have loved that!

Best to all and remember your hydration when travelling/ away, have a good time and send us a postcard!

Denby

rily
Posted by

I would hold back on booking anything until you know what is going on. We had to cancel a holiday at short notice because of treatment and lost a lot of money because of a late cancellation. Insurance companies are hard to deal with and even my GP charged £65 to complete the insurance claim. Said they can only do these things privately. Best wishes.

Best wishes to All,   rily.  What is a Community Champion ?

Plantaholic1
Posted by

Hi Denby. Called CNS on Monday who said that my results had just come up on her PC. She said tumour was fairly low grade but didn't elaborate. I take it that this is good but not the whole story? She thinks I have missed this week's list for MDT meeting but will be discussed next week. Is it possible to be low grade but invasive? Surgeon said they had to go deeper than expected. 

Denby
Posted by

Hi, I don't honestly know the answer about whether a tumour can be low grade but invasive. Hopefully others more knowledgeable will pick this up and I would try the "ask an expert" forum on Macmillan for more on it. I agree it doesn't sound like the whole story, the trouble is she has committed the dodgy act of giving you partial info. The reason they have MDT meetings is for each person to contibute their specialised aspect to planning your care in your exact case -she is part of that but not all of it.

All of us clutch at 'straws' of info in the human desire to piece together whether to expect good news or prepare yourself for less good news- no-one likes surprises when it comes to ill health. The problem is here that you have also got the surgeon's somewhat troubling comment to add to your piecing together, but not everybody else's twopence-worth. Personally I think that when you read of folk on here who have had a really big invasive tumour at diagnosis and soldiered thru' chemo and radio/chemo-therapy and even kept their bladder, it's best to try and distract yourself until your team have had their MDT and see what they do say when they have put the whole jigsaw together. Look at it this way, 'deeper than expected' still means they have removed a lot of nasty cancer cells which can only be good-whether they have been able to get them all out or not there are a lot less remaining to be dealt with by whatever means.

What does follow logically in my mind is 'deeper than expected' does mean you have a significant internal wound with no dressing over it like you would have anywhere on the surface-and other folk on here have testified you should go easy on lifting and straining for several weeks, I would also suggest take care to eat and drink as healthily as possible, to help your body heal up this invisible wound.

Where I will sympathize with a little moan is that 'our' hospital only MDTs once a week and depending when your lab results come back that can add days to the wait to get your follow-up news appt. I do not know if you have any comeback over 'missing the list for this week' you can only try and call the consultant's sec to see if they will discuss you so you can sooner take your life off hold and perhaps plan a budget [in case of cancellation as Rily warned] break.

With every supportive and sympathetic thought as this is exactly where we are right now too.....

Denby

rily
Posted by

In the great scheme of things, a few extra weeks wait will not make much difference, but it does not take away the anxiety of extra waiting. On a positive note, it does give your bladder more time to heal in order to prepare for what might come. Once you get your consultation, you will be presented with a recommended plan of action. This then changes your attitude, because you then know something positive is happening, and it gives you something to focus on , rather than being in the dark. Best wishes.

Best wishes to All,   rily.  What is a Community Champion ?

Teasswill
Posted by

I know it's frustrating, but it's really best not to make any plans until you get the full report & see the consultant to discuss future path. When I was first diagnosed, we cancelled a holiday in expectation of treatment. As things turned out we could have gone but I don't think I'd really have felt like it. 

Treatment can be anything from simply regular checks to major surgery etc. Depending on stage & grade. Planning holidays can be difficult at this point for getting insurance. So perhaps content yourself with a few pleasant days out or local weekend break until you can plan better. Hope you get appt soon. 

Plantaholic1
Posted by

Hi Denby. Thanks for helping me get things in perspective. Not thinking straight and not helped by not sleeping. Used to working hard physically and not working at all at the moment. Too much time on my hands and not tired enough to get off to sleep or wake up. Self employed too so trying to make best use of down time. Feeling physically fine so frustrated at slow pace. Will try to put things out of my mind and stay as occupied as I can. Can't seem to concentrate on anything for long. Hey ho.... We are all in the same boat and I am luckier than many. Thanks so much to everyone. 

Denby
Posted by

Hi Plantaholic1, we find the best thing to make you sleep easily, sound and long is an evening swim. Some places have £1 swim with some lanes last thing, there can be a lovely sense of community with few if any words, mindlessly chugging up and down at your pace with others, if you go often you'll soon be getting nods and smiles from them. Obviously concentration is affected by not sleeping, but there's all sorts of good sleep advice eg cutting down/out caffeine, light exclusion etc out there. Personally, regular tea at 11am and 4pm only, decaff the rest.

Also if you haven't already, get into food label reading while you can; cutting out chemical-y and over-refined stuff can only do you good and if you up your vitamin & mineral intake to sensibly good levels it can only help you feel and concentrate better and help your mind and body deal with all this. B group vitamins are good for digestion, nerves, alertness etc etc and found in spades in Marmite and Bovril and stores' own equivalents [yeast extract] for instance.

Best,

Denby