Where do I go from here?

Morning Nigel, I’m sorry you are anxious and tired and upset and frightened by a post from TeasswilI. I am 100 per cent positive she was only trying to be helpful and informative. Over the last seven years on this forum she has helped me and others with her posts, experience and insight. I know it is stressful at times, this awful disease but try and get your mind at rest and look at the people BCG has been a success. Garviv

Hi Nigel, I'm a year into diagnosis and BCG treatment like you.When I got my diagnosis RC was mentioned but I've had long conversations with my surgeon who supports my decision to go down the BCG route. He told me that in most European countries BCG is not offered as it is such an expensive therapy and treatment regime. If the NHS did not believe BCG was an effective therapy it would not be offered. Trust your medics and your own decision making. I'm trying to keep my bladder for as long as I can even if the therapy is stressful. If I need an RC in the future then so be it but for now I'm happy to carry on with BCG.

Hope you can have a relaxing weekend and good luck with your flexi in a couple of weeks.

Love Ade xx

Many apologies Nigel, I'm really sorry to have upset you. My intention was to give you more recent information, although sadly not a lot has changed in14 years. Unfortunately I get the impression that some consultants don't always give patients enough facts for them to make a fully informed decision about their treatment. 

What is important is that you trust your team, especially as you have two different issues to consider. I hope they will collaborate to offer you best advice. Best wishes.

FFS! This will teach me to use a forum.

I thought I'd post in solidarity with someone having a tough time post TURBT/Rigid Cystoscopy.

I forgot the first rule of discussing cancer diagnoses, everyone's cancer is different.

Discussions here seem to have required me to have done a lot more reading and know more than I've been told about what type of bladder cancer I have, the grade, how invasive, staging etc etc.

Similarly, treatments, effectiveness, likelyhood of recurrance and prognosis all depend on the type (3 forms of CIS) but there are others, the grade, if it is muscle invading or not, and staging at diagnosis.

The one thing I am not going to do is be reading research papers. Medics write papers (on the whole) about stuff that is novel or interesting, to them. The patient groups they write about are usually the outliers, the unusual, different, mostly not doing very well. They do not write papers about the boring "we found a tumour, we cut it out, he's fine 5 years later" patients. It's of no interest to a medic! Treatments get written about in papers when they are new, or when tried on a whole new patient group. Once established treatment they are old news! No one cares, as least as far as the medics are concerned. Plus, established treatments have tweaks over time to their protocols which are not in the original papers. So what was true when the paper was written may not be the whole story years later.

It seems that in general 75% of patients with bladder cancer will survive a year, 50% to five years, and 45% to 10 years.

But that is ALL bladder cancers, of ALL grades, of ALL stages at diagnosis.

What your specific and personal prognosis is will be specific to you, and not true for anyone else.

Yes learn the cytology of your cancer, which can inform about the grade, what your stage is, and your treatment options, and their downsides, but the effectiveness of surgery, or any treatment option very much depends at what point the tumour is at in it's development etc in you, not some group of patients included in a paper of whom you know nothing in detail!

Just sayin' don't scare the crap out of yourself, and if you really want to read that stuff, be extremely careful about sharing as it probably won't be applicable to your audience.

Have a good weekend.

Hi Ade,

That's interesting regarding Europe not doing BCG,. I know how much an instillation costs at my hospital as I'm using my companies corporate Insurance and I can see what they've been billed for each procedure. It's quite interesting and I couldn't afford this for sure.

Although I still thought it would have been more than it is and possibly a lot less than other options.

I went the BCG route (number 16 next Tuesday) and wasn't offered RC at all, but it was discussed.

Although I'm not going to join in the to RC or not to RC conversation's. I'm just happy that people seem happy with their decisions (hopefully).

When I found out about survival rates etc, someone kindly pointed out that BC used to be an "old person cancer", so could have simply died from something else, but still counted as dying so many years after diagnosis... I've now stopped looking at things like this... Take each biopsy at a time...lol.

Take care everyone, we're all in this together.

Trevor 

Hi Steve,

Sounds like you've been going through quite a bit, but I welcome you to the forum and wish you all the best.

Trevor 

Thanks Trevor. I had a letter from the hospital today. I thought, ooh!, that's quick. Only had the biopsies on Monday. On closer inspection it turned out to be a copy of a letter to my GP relating to a telephone consultation in November, typed up on Monday and posted yesterday.  Fortunately I  haven't yet had the sense-of-humour-ectomy, so I can see the funny side...

Thanks for the info  

Funny how things work. Whilst waiting for my TURBT, I got another letter regarding a 2nd referral to Urology.

Seems the plumbing is really falling apart.

Even though I was being seen in rapid access Heamaturia Clinic, because I seem to also have 5 x kidney stones. 3 x on right, and 2 x on left, another referral has been generated to be seen in the general Urology clinic.

Then, as the icing on the cake, it seems I have an Adenoma on my Lt Adrenal gland. We've no idea if it is producing any hormones, but these have been put on back burner until Bladder is sorted!

I'm not sure, but I think I'm starting to fall apart.

The list of things I'm dealing with is getting longer and longer:-

So apart from Badder Cancer, the Kidney stones, and Adenoma, I'm Type II Diabetic, with High Blood pressure, a Lipoma, ADHD, a long ago partially dislocated toe now fixed in that position.

I'm thinking that I should cash in my pension pots and buy an annuity now! With that lot I'm sure I'd get a very good rate, though not good trying to buy travel insurance.

You have a lot to deal with shoeless Joe, I hope you will stay on the forum . I hope you get a good treatment plan and things start to feel better for you.  Best wishes man