Radical cystectomy Vs BCG treatment choice with aggressive non-muscle invasive bladder cancer

Hi Teasswill

The hospital didn’t refuse to perform the cystectomy. However, with there being some previously unknown heart issue which would significantly increase the operative mortality risk, the consultant suggested (and I agree) that BCG is the more sensible option for the time being. Radical cystectomy was my preferred treatment choice given it appeared to give me the best chance of a longer life (that would not be the case with the increased mortality risk of the RC now), albeit having to go through an enormous operation.

If, once the bladder resection is completed we find that the cancer is muscle invasive I may well decide to have the RC irrespective of the increased operative risk (either that or try radiotherapy).

In an ideal scenario (albeit none of this is ideal) we would find no cancer in the muscle, we would go for BCG treatment, and that would hopefully buy me some time to hopefully deal with whatever heart issues I have and have the RC if / when BCG isn’t working. Very fortunate that I have an ‘almost as good option to a longer life’ in BCG as RC. On the positive side of things I get to keep my bladder for a bit longer than expected.  

Thanks for your support 

Gareth

P.S. Apologies that my previous message was unclear - I was typing / copying & pasting from a hospital bench, with poor results.  

My oncologist said a RC was like killing a fly with a bazooka. Sounds good to me. Early RC locks in the odds of a 90% survival. As you can see from my low grade to high grade progression, even 90% odds aren't good enough for me

Noted - thank you.

Was your oncologist saying the bakooka approach is therefore best? Cheers, Leo

The problem in choosing treatment (where there is an option) is the uncertainty about progression of the disease, and efficacy of different options, as well as the different rigour of treatment options. 

I looked on my RC as prophylactic treatment (albeit pretty drastic), to give me best chance of cure and avoid the risk of needing more aggressive treatment (or at worst, becoming incurable).

We all have different priorities and reasons for the choices we make. 

My 2nd TURBT was complicated with a blocked left ureter with blood clot for which I had to have an emergency procedure last weekend and had left ureteric stent fitted. I’ve recovered well and feel fine now. The histology from my 2nd TURBT has shown no tumour recurrence but tiny CIS. It is not considered anything too significant and the diagnosis is still T1G2 (high grade). This has put doubt in mind. My other problem is my mental health with uncertainty if I take the BCG option, which will have a significant impact in my line of work. I’ve discussed this with my urology colleague, and though they still think that I’m trying to ‘crack a nut with a sledgehammer’, I’ve asked for a RC. I’m terrified but the other option seems more difficult for me personally.

The best, but overtreatment in his view. It's my life we are gambling with in my view.

This is my thinking as well. Multiple members of my family including my mother died from cancers that were treated conservatively. The odds were very much in their favor but ended in death anyway. The only one who made it to old age was my aunt who had a double mastectomy early. 

Hi MtBeers

With my risk factors (large tumour removed via TURBT, deep into connective tissue, Carcinoma In Situ also present), cystectomy rather than BCG made sense to me.

However, the disadvantage & risk factors of Radical Custectomy should not be underestimated;

The operation may not be curative and depending on the final pathology additional treatments may be recommended e.g. chemotherapy and subsequent removal of the urethra. There is a very high risk of impotence and it will not be possible to father any children. There are also anaesthetic or cardiovascular problems including chest infection, pulmonary embolus, stroke, deep vein thrombosis, heart attack and death. There are also risks related to wound including infection and herniation and to the stoma including scarring, narrowing or hernia formation requiring revision. There are complications resulting from the reconstruction including abdominal infection, diarrhoea, vitamin deficiency due to shortened bowel and urine leakage from the anastomosis requiring re-operation; scarring of the bowel or ureters requiring further surgery and long term affects on kidney function. During the procedure there are risks of injury to surrounding structures for example intra-operative rectal injury which may require a colostomy and damage to the obturator nerve which may. affect some aspects of lower limb motor function.

I don’t want to put anyone off any procedure unduly, but feel everyone should enter into a decision process with a rounded knowledge of pros and cons of any treatment option.

Best

Gareth

Hi Gareth

Your post reads like the standard list of potential side effects or potential complications from surgery which everyone should be provided with prior to a surgery like this, yet doesn't include any statistics on how likely or unlikely any of them might be. 

You may indeed be in danger of putting people off, especially when you actually don’t have experience of the surgery, and have not quantified the percentages of risk, so I’d encourage anyone who reads your post to bear that in mind, and know that the surgeons involved should state all the risk factors clearly as part of their discussion before you sign consent-all of my surgeons did this (I had 3 in my operation).

I should add that I am talking from the point of view of having had my bladder removed in 2020, along with my rectum and many other body parts, so I have a urostomy and colostomy, so I do speak from my own personal experience.

I have not had one single complication from your list following my surgery, had my cancer removed with very good margins and have never once had to go back to hospital to have any issues dealt with, because I haven’t had any in the past 4.5 years. 

I just wanted to balance your post with a positive actual and real experience, as it’s preferable in the community to be able to share real relevant experiences.

Sarah xx