Hi I have just had laser treatment and am waiting to see if I need chemo. All very sudden and moved very quickly which is good although the speed and as I really never expected this mentally it’s hard. They also said it is very likely that it may come back as it’s a characteristic of this type of cancer! What happened with you?
So I had a similar experience, I had rigid cystoscopies where they lasered / burnt the tumour away, my tumour was 5cm long, but it was a low grade cancer.
Mine has come back multiple times, but it doesn’t mean yours will, I know a friend of the family who had it reoccur twice and she has been free from reoccurrence for over 10 years.
The frequency of the reoccurrence varies from person to person and there are alot of contributing factors, such as your age, grade of cancer. I have gone 4 years without it coming back.
I do appreciate it is mentally hard, and everyone looks and this type of news differently, but I always view it as a mild inconvenience that saves my life, and I am not too bothered about it, and I get a full medical once a year, so I personally can’t complain. Saying this I have seemed counselling about the amount of times I have been in hospital which at one point got to me.
They will probably give you Mitomycin as the chemo directly into your bladder, it is painless, they may also give you the BCG vaccine into your bladder as well.
The best advice I can give you is never google your condition, always speak with your consultant and or your Clinical Nurse Specialist, and they are better placed than anyone to advise you and to answer any questions.
But I am happy to answer any questions you have, but my answers are just based on my experiences.
Thank you that’s super helpful. I don’t know anyone else who has had this so it’s reassuring to hear. Just waiting for pathology and go from there, they think it’s low grade but I don’t want to depend on that until I know. I suppose I was just thinking if low grade you have a better chance of it never coming back which may not be the case. I haven’t reached out to my clinical nurse as couldn’t gave it but maybe it’s a good idea. If it’s low grade they seemed to think I wouldn’t have chemo but to be honest I would rather have it as a safe guard, so you think it’s something you can ask for even just to help mentally?
What you should ask is whether they administered Mitomycin at the time the tumour was removed.
Some hospitals do this routinely, while others do not, often depending on their clinical approach or experience.
You are always entitled to ask about treatment options, and they should explain their reasoning if they decide not to offer a particular treatment.
If the cancer is low grade, they may choose active surveillance instead of immediate treatment.
For example, I have cystoscopies once a year now, but initially the checks were more frequent at 3, 6, and 9 months and then moved to annual monitoring once everything was clear.
It is also important to remember that not every growth in the bladder is cancerous. There is a common misconception that all bladder growths are cancer, which is not strictly accurate. In my case, I have had two growths classified as UPUMP (Urothelial Proliferation of Uncertain Malignant Potential).
This essentially means they are potentially precancerous and could develop into cancer if left untreated.
Yes that was the same as mine, mine came back as a grade 2 cancer, but all the reoccurrences have been grade 1, I have had a course of Mitomycin and the BCG. So when do you go back for your results, or have you already received them?
