Just diagnosed with grade 3 bladder cancer - scared.

Hello Jessie15 and a warm welcome to this friendly and supportive group. We know how worrying a cancer diagnosis can be but bladder cancer can have a good outcome. Although G3 is considered high risk, many here have been treated successfully with BCG. You will be monitored regularly and in the event of any recurrence, it should be caught early and dealt with. If it is any reassurance, I had muscle invasive G3 and so far clear after many years. CT and various other tests are standard and are usually precautionary to rule things out rather than in. I am sure others will be along to share experiences. Feel free to ask anything as lots of experience here. Best wishes.

 Jessie15 Jessie try to stay off Dr Google, you will only scare yourself half witless. Listen to your medical team only, and people with experience on here. The Gold standard for NMIC HG cancer is BCG treatment. I had this diagnosis myself, and was on BCG which worked until confounded by other complications down to my peculiar anatomy. I have now had a RC.

informed choice: the choice of treatment is ultimately down to the patient, however your recommended treatment would have been throughly reviewed by your MDT, a group of experts.

The way you are feeling is exactly as I felt at the start, but trust me you will in time feel better when you have a treatment plan to focus on.

All the best,

Leo

Thank you so much for your reply Rily. I feel better already knowing I can speak to others who have/are going through similar.  

Many thanks for your reply. My consultant was unable to say what the success rate was for BCG but I will move forward with it in the hope it is successful.  I am trying to come to terms with the diagnosis as very recent, but am grateful for your helpful reply. Does the RC eliminate the possibility of the cancer returning do you know ? 

 Jessie15 Jessie if you want to discuss RC options, you should do so with your clinical team. Every case is different. It’s major surgery not to be undertaken lightly. Leo

Hi Jessie, 

Welcome to this group and sorry to hear about your diagnosis.

Grade 3 diagnosis here also, Non muscle evasive like yourself. Mine was a little larger (3cm) with carpeting.

Had my first TURBT on 21st December 2022 and have done 15 BCG instillations. I have biopsies every three month's and so far (touch wood) no reoccurrence. Although I'm fully aware it could come back.

The BCG isn't a walk in the park, but I can't complain really although I do as I'm a grumpy git...

It's very worrying for sure, but I trust the process, but I'm really looking forward to completing my BCG course but that won't be until 2026.

I wish you all the best and keep us all posted, this forum is amazing and helped me early days and still does.

Trevor 

Hi Jessie15 . The trick is to take things one step at a time and not to look too far ahead, but regards RC, It can be successful in most cases but nothing is guaranteed. Best wishes.

Hi Jessie15,Welcome to this friendly group.There are a few people on here with G3 non muscle invasive cancer.Some have had BCG or are having it and  they will be along to support you.It is scary at the start but you will probably feel better once you begin treatment.Scans etc are usual so try not to worry about that.The first advice I got here was to stay off google.It can make you feel far more anxious than you need to be.Post here anytime we are a friendly bunch.Try to take one step at a time as if you think too far ahead it can get overwhelming.Best wishes Jane x

Jessie15,

So sorry you have got this news, all of us on here know how and your family feel. The prognosis should be good and there are people on here who have been treated years ago who will I am sure reassure you. In fact I met a woman socially not long ago who told me that her husband had lived for 20 years after being diagnosed and treated and then had died of old age.

The first thing we all say is forget googling. The only sites I trust are the NHS one and Macmillan which has a very good booklet explaining all about bladder cancer - you may have been given a copy or if not you can look at it online and download. Try and remember that this cancer is very treatable these days 

Your positives are that it was small and they got it out in the TURBT. Please try and forget grades and numbers. We all stress about them at first but they are really only to tell the medics what to do next. The chest X ray is not a big thing - they are making sure everything is OK and the BCG is to make sure it stays away. There are many people on here who are having or have had BCG and they will explain it. 

I think you should trust what your nurse said - she will have seen many people with all types of cancer and treatments. Try not to worry about possible recurrence either. We all know that it might, but there's no guarantee that it will. If it comes back your doctors will have something they can offer you. Most of us have learnt to take each day as it comes and to enjoy life. 

Meanwhile I can tell you a little about bladder removal in case that helps. 

I had muscle-invasive cancer removed nearly 2 years ago, which meant they had to take out my bladder. It is a very long operation - mine took 5 hours while others may take longer - and you have to be very fit before they will do it. I also had 4 cycles of chemo before the op and some immunotherapy afterwards, though had to stop that early. It is quite tough but my husband and I feel as though we are back to normal life now.

I was lucky that they seem to have got it all and my quarterly scans have been clear so far.  I have a stoma and use bags to collect the urine, It is all very manageable but not something to have done if not necessary. As for recurrence after bladder removal. Well it won't come back in the same place because the bladder is out. All the treatment and later reviews are to try and make sure any cells floating about have gone. I shall worry about that if it happens

Good luck with your treatment and once this all sinks in you will find it bearable

Latestart

The short answer is yes, non muscle invasive G3 BC (NMIBC) is definitely curable. Even if becomes muscle invasive it can still be curable, but treatment is more aggressive, and cure not guaranteed.

I know that many consider bladder removal overkill for NMIBC, but NICE guidelines do say that it should be offered. It is major surgery, with some form of alternative plumbing to be installed, and not to be undertaken lightly. I have to admit that I had the choice of BCG or surgery & did choose surgery - I am still here 13 years later. 

BCG is proven to delay recurrence and deter progression, but not in every case. Unfortunately no-one can predict your personal outcome. The additional tests are standard to ensure that they have a full picture before starting treatment. None of us can advise what treatment you should choose, it is a very personal decision. But worth asking questions about pros & cons, risks and benefits of each option, so that you make an informed choice. You are entitled to ask for a second opinion if unsure. Best wishes.