Shocked by the speed of it all

Hi Baldyboffin and welcome to this friendly and supportive group. Your story will be familiar to many of us. The early days of uncertainty and not knowing can be the worst, but be aware BC can be treated successfully. Waiting for results is hard for everyone and never gets any easier. When you do get an appointment, it is best to take someone with you as you can be overwhelmed with information you soon forget. You should be told a stage and grade and treatment plan, but you will probably have a follow up TURBT and some scans which is standard. A second TURBT is usually a lot easier than the first and gives them a more accurate diagnosis. It takes up to six weeks for the wound to heal and any strenuous activity is not recommended in that time as it can aggravate things. In the meantime it is recommended to drink plenty of water regularly to flush out any debris and prevent blockages. Feel free to ask anything as many of us have been there. Best wishes.

Hi Baldyboffin,

as Rily says, we all have intimate knowledge of what you have experienced so far. And we can remember the shock of being there. In my case the only difference was that they let me out after the TURBT on the same day and it was during the face to face 3 weeks later (when I had convinced myself there was nothing much wrong with me) that they said I had cancer and would need my bladder removed as it was muscle invasive. Up to then I had kept my usual exercise routine though lifting lighter weights because a 1 hour operation does need one to 'take a little care afterwards'. I was 69 by the way, very active, gym, and fast walking and pilates daily. 

Though retired for nearly 20 years on diagnosis I was a busy professional behind a desk for my career and had been writing since so, once I got over the shock of diagnosis and treatment plan, I worked hard to understand the cancer type, treatment regime and most importantly how to support my husband, daughter and son-in-law who would have to face all of this with me.  

We winged it for the face to face as we weren't prepared, but my advice is to read anything they gave you pre- TURBT carefully and look up the Macmillain bladder cancer leaflet - it's downloadable from this site. What you want to knowduring the meeting is:

• Type of cancer and where situated
• Proposed treatments and likely timescale 
• Any alternatives (and why these aren't preferred)
• How the treatment works and what the general effect will be on you eg loss of appetite, tiredness (both common but people are affected differently), hairloss etc
• Prognosis - my husband, an engineer, asked that one, being more concerned with percentage likelihoods. 
• How experienced your surgeon is (if having surgery) - you may want a second opinion. I chose my hospital to be referred to by my GP because of its Urology reputation, rather than a more local general hospital.

Think hard about yourself and work out whether eg, if told you have cancer you want it all out asap or could bear a treatment plan that preserved the bladder but took a long time. I knew I am the former. Others I have met here are more comfortable with the latter.

When I was told I would have my bladder removed I chose stoma and bags, there are newer treatments, but again I  backed up my instinctive decision with research and self-knowledge. 

On that topic, Google is not your friend. Choose sites such as Macmillain, NHS, Cancer Research, Action on Bladder Cancer. People start searching elsewhere and frighten themselves even further on sites that are poorly written or from horror stories from 'patients'.

Personally I don't get hung up on stages and grades of cancer. As my oncologist says those are there as medical shorthand to help medics choose suitable treatments. Of course, many patients do find it helpful or comforting to use them. 

The good news is that bladder cancer is treatable, Urologists and oncologists know a lot about it and see many cases. There are people here who can answer your questions from a position of personal knowledge.

I'm now 73, still quite fit for my age and am 3 years into my project to live 5 healthy years (at least) after cancer.

But cancer does change your life, you have learnt things about yourself and life that you can't unknow. Your family is changed too. In my case having faced some hard times together we are a strong team. And each one of us has since had serious operations through which we have supported each other with what we all learned from my case.

Take care of those around you. Family may need more support than you realise. We patients, once we've chosen our way forward, really just put one foot in front of the other to get to the other end. Others can be made ill through a feeling of powerlessness, without us noticing. 

I hope this is helpful.

All the best,

Latestart

Hi Latestart (and Rily), 

Thank you so much for yuor detailed reply!  It is very helpful.

My background is a career as a scientist / lab manager, so I'm very familiar with evidence-based decisions that  balance what the data suggests against resources available for next steps.

I'm really grateful for the NHS but also anxious about little oversights and mistakes made along the way, which I suppose is inevitable with oncology teams working at full pelt.  e.g. I received a call after my CT urogram to reschedule my cytosopy for an earlier date, but when I went in for that was told at the appt it was actually to inform me of the scan results (becuase it was very likely cancer), and that the cytoscopy wasn't going to happen but a TURBT in the next week instead.  I was really unprepared for that! After the TURBT, I had 3 different sets of drs see me (prpobaly due to extended stay when it should have been a day case), but in one case they were asking me how I was feeling about my "prostate shave" and when I said I hadn't had that done they insisted I must have becuase I signed the consent form and then it dawned on them they were going through another patien't notes with me.  Finally when I got my discarge note, it had some wrong info on it (dates and some body measurements), but they did ensure me that these would be correctred and I would get a corrected version in the post (evenually). 

I know these are minor things but they make me more anxious that I hope they have the right info and will give me the best options going forward.  I've spent years advocating for my disabaled son (now an adult, whom I still ahve caring responsibilities for) through various agencies for them to get the support they need, and it's taught me if you just go passively through the health and social system follwing advice yuo don't always get teh best outcomes.  Sorry if I sound a bit jaded!

My main worry is potential underdiagnosis and maybe the NHS leaning towards a "wait and see" approach, especially as this might be lower risk and more cost efective for them.  I would rather go down the route of assuming the worst and e.g. gettign a cystectomy with 6 months of recovery and then that's it rather than monitoring and more TURBTS over years, which I think will be more disruptive, especially for the prople I care for.  But I don't know if I will be given any options to push for this. 

In my experience the medics like to talk with someone who wants facts and who stands up against assumptions. And fortunately I haven't had any experience of people assuming an old woman with cancer won't want to know things or be prepared for tough treatment (or they don't persist with it once we meet).

Yes, you do have to watch for admin mistakes - people are overworked and can get the wrong end of the stick. For the several serious things I now have wrong with me besides having survived cancer - some caused by or found during cancer treatment others pre-existing - I have made myself a sort of 'expert patient' and I talk to the various teams as equals. It works well. 

Plus, cancer is the sort of illness that trumps most others so you might get different treatment by the medics than when advocating for your son. I expect that has taught you what to look out for, at least. And it isn't fair that it happens of course.

They shouldn't be pushing options at you anyway. You should be able to ask them what options are available and choose what you want. Yes you may have to then keep your eyes open to ensure things are going along as expected, but it beats lying back and hoping. If your hospital doesn't want what you want look elsewhere at least for second opinion.

On 'wait and see' - I know that's often offered in prostate cancer treatment but not something I have experienced with bladder cancer. As I said, I would always choose get it out or start treatment over waiting. if that's what you want just say so. It might be worth  listening if they say why they prefer another option of course, see if they convince you.

When one is the patient and everything is scary it is tempting to lie back and be tended. However, taking control is better for one's morale and more fun too.

All the best,

Latestart

All good advice so far. I was also 56 when diagnosed - initially fast track referral for potential gynaecological cancer but got promptly sent on to urology instead. Hospital do vary in their approach, but mine certainly gave me all the options. In fact, with bladder cancer, there’s possibly not a lot to choose cost wise eg surgery now vs years of immunotherapy and repeat checks. 

I often went armed with questions but my consultant would come out with some information that completely changed things. Quite likely they will schedule more tests before advising on treatment options. 

When I couldn’t sleep, I listened to speech podcasts which helped me relax, if not sleep. I also kept paper and pencil handy to jot down thoughts and questions. Maybe try some light jogging and see how it goes? I used to do Keep Fit classes and singing for my relaxation and distraction. With my diagnosis I chose surgery and did lots of abdominal exercises beforehand. By a couple of years post op I was probably fitter than pre op, having started weight training as well. Your fitness level will stand you in good stead for whatever treatment you need. Best wishes. 

Hi BaldyBoffin

Sorry to hear you’ve joined our club that nobody wants to join. I wouldn’t be overly concerned about ‘under-treatment’ / monitoring - that doesn’t seem to be an issue from mine & other’s experiences here.

I was only 52 when my bladder cancer was found - personally I coped by telling everyone & not keeping feelings locked in.

The most important thing to remember is that bladder cancer is eminently treatable as these forums attest to.

Make sure you have a list of questions to bring with you (tailored to a great pathology result / mid case scenario & a poor pathology result). Definitely bring someone with you to the results appointment; lots of information will be given & it may be stressful - that way you’ve got 2 people remembering information. In my experience you won’t be rushed or pressured to choose which treatment route, if any, to go down, and there was no pressure to make a decision on the day.

Best of luck.

Gareth