Bladder Cancer

Hi Christy,Welcome to the group,I hope you will find it helpful and supportive.I’m sorry to hear that the BCG didn’t work.I can’t help as I only had bladder removal.I’m sure the others will be along with their suggestions soon.Best wishes Jane

Obviously this is a question for your consultant as we are not medics - only they have all the relevant info & experience. However, we can offer suggestions to ask about. If the cancer has become muscle invasive, then radio/chemo therapy might be an option. If still only T1, some consultants would be willing for you to try a course of mitomycin. What you need to realise is that further recurrences could be muscle invasive (needing chemo) & could metastasise (be incurable, though not untreatable). 

None of us are keen on bladder removal, but can assure you that it isn't as bad as you might fear. Happy to answer any questions about that (although being female, it's a slightly different experience.)

I'm potentially in the same boat Chris. Wondering why radio/chemo is usually only suggested for muscle invasive, rather than non-muscle invasive. For people who want to keep their bladder if possible, you'd think it would be preferable option?  

I believe radiotherapy is rarely used for non muscle invasive is that with early stage the scans cannot pick up things clearly enough and can miss things completely. They need a good clear target to aim at. Best wishes.

I find it all very confusing! I was told 6 montha ago that if I didn't get my Bladder etc removed, that Id be dead within 18 months. My Oncologist told me this. I said let's do this then. But i had to go through a number of Consultants to get the go ahead. I've an extensive Cardiac history! So much so that the Anaesthetist that I met recently, said to me, first thing, that I'm a high risk to die during the operation, or have stroke, or have a leg, or legs amputated! So, hence my wondering if there are alternatives to look at! My operation has been cancelled twice due to Covid! I'm at my wits end..... Don't knot which way to turn! It's on my mind day and night! At times I think that I won't have the operation! Just live the rest of my life as best I can! Even if I habe the operation, my oncologist said that there's a 50%chance that the cancer will come back! Forgot to mention that I also have Lung Cancer, not advanced. I think!!!!!

Confused

Chris

Hi Christy- did you say you have stage 1 grade 3? This is what I have been dealing with and have never been told unless I have removal I will be dead in 18months! I believe if bladder cancer is not treated at all then you can die with in 2 years...I have had 2 bcg courses , which failed and now , cos I have said no to removal , I am completing a mitomycin course. My recent PET CT scan suggests no bladder disease..which if true will be bloody great, but I have what they think is a cancerous lesion just below bladder which I think will be treated by radiation. There are alternatives to removal , such as 'watchful waiting'...You probably need to talk thru possible alternatives with urology/oncology. Good luck.

Hi- I have been resisting removal for some time now. After 2 bcg rounds I am nearing finishing a mitomycin course. I also have what they think is a cancerous lesion 1.2 com lesion just below the bladder. My last convo with surgeon was that they will likely use radiation for the lesion and at the same time use it on my bladder too. He said It was rarely done, prob. because of what Rily said...but I guess he is willing to give it a go. I am stage 1 grade 3.

Dear Christy, wanted to reply earlier but glad now I can and having seen your further post. True my husband was G3 pTa not 1 as you've got. But if quantity counts, he said the entire inside of his bladder looked like inside out cauliflower to begin with. We also are pretty sure he had had it for years, as the hosp where we used to live did what I now recognise as a pretty drastic TURBT, without ever even mentioning cancer [nor any follow up], years ago, like ?10+? years. His symptom then was simply too much getting up in the night.

When this crept up again after we moved 120 miles, the new GP got him into the cancer pathway tho a private hosp caused months of further delay. All that was 2017. So then a TURBT, 6 BCG, the usual 6 week wait to settle, and a flexi. Because he'd got strictures they did a Gen anaesthetic for it, so he woke up to find it had been another, single papillary tumour recurrence TURBT. When we saw the consultant he put it to us as "3 equal options, more BCG, RC or Mitomycin". Now everybody is different but we were both shocked and appalled at the suggestion of Radical Cystectomy as a] by his own admission he would not be great at looking after a stoma b] (perhaps should be a big A!) it's very important to him and me to maintain the ability to make love, which many men lose with RC.

At that time we had no idea that many people get recurrences with BCG and just go on to have years of BCG if it doesn't upset their bladder too much, with a recurrence here and there quite common. We just thought the swift recurrence meant the BCG was a failure. So went for the Mitomycin, and he has had no recurrences since, just the odd red patch requiring bring forward the next flexi. To be blunt we are still very happy in bed and btw he will be 78 next birthday. I've gleaned on here that for mystery reasons some hospitals fail to even mention Mitomycin.

No one ever said to him any threats about 'you will be dead' which I think could border on the unethical unless they explain a very good reason eg lab work on type of cells being super dangerous, why. And my husband is not a really bad anaesthetic risk like you either, so why they should push you towards a 9-14 hour op is beyond me.

I hope this gives you more strength to make your own wise choice about this. I will risk criticism by offering my thought that surgeons like doing surgery therefore may lean that way, when it is not really what the patient wants before all other possibilities have been tried. Don't be bullied is my encouragement. And as well as us lot on here, you could chat with one of the MacMillan nurse line people perhaps?

Very best wishes, 

Denby