Size of Tumor

Hi 2ndDaughter44 and a warm welcome to the group, although sorry to hear about your dad. The size of the tumour is not as important as to how far it has gone in to the bladder wall. If contained in the bladder, then there is a good chance it can be treated successfully. The next step would be a follow up TURBT to mop up and get a more accurate diagnosis, although this depends on individual cases. There are treatments for muscle invasive bladder cancer which would depend on further investigation. I was diagnosed with muscle invasive many years ago, so do not despair. The more information you get, the more we can help. Lots of experience here, so feel free to ask anything. Best wishes.

Hi 2ndDaughter44,Welcome to our friendly group,I hope you find it helpful and supportive.Best wishes Jane x

Thank you for your reply.

His first TURBT is not until the end of October, they have tried to get him in earlier but no luck due to staff shortages. 

I️t's comforting to know you experienced something similar years ago, my dad is single and lives alone, my sister and I have a very close relationship with him, but I worry about him being on his own, as he is suffering a fair bit with UTI's and is allergic to antibiotics.

The waiting for the grading and treatment plan is a real struggle. 

Can I ask, will we not get a full grading result from the first TURBT? Is it very common to have to wait for another one to get a true grading?

Thank you x

Thank you for your kind welcome, I have visited the community page a few times over the past weeks and already found the comments really helpful. X

Hi and Welcome

Yes your Dad should get a grading after the first TURBT but they may also want to do a 2nd to confirm the findings 

Ste 

We're all familiar with anxious waiting. Once you know what you're dealing with and have a treatment plan, it gets a bit easier. 

There will be a stage & grade after first TURBT, but they will possibly do other tests, depending on that result. You mentioned that they think it is muscle invasive from MRI, so they may well go straight to treatment recommendations. Do bear in mind that there can be another wait of a few weeks after TURBT before you get the results & consultation. Hope all goes well.

Hello 2ndDaughter44, welcome to this friendly group.  I have a son and a daughter whose support was a tremendous help during my hospital phases in 2017/18, together with the marvellous medical and nursing personnel within the NHS, not forgetting the Macmillan nurses of course. On here, you will find much experience and see a good range of paths, symptoms and patient responses as they steer through bladder cancer.

As rily says, the size of the tumour is not necessarily the most significant factor. Mine was 70mm x ? from CT scan results and I've had two TURBT procedures, neither of which yielded enough material for staging analysis. Despite being cared for on a palliative basis since 2019, I live independently, drive, go shopping and suffer the ups and downs in 'mood,' discomfort and occasional pain which members on here are familiar with from their own experiences. This is where Macmillan and this forum are invaluable as they enable us to keep on a more even keel. Best wishes to you and your dad.

Ray (74M) 

Dear 2nd daughter,

Another muscle invasive one here. It's over 2 years since my treatment started but I suggest you get hold of the booklets from the Bladder Cancer charity and also from Macmillan if you haven't yet. My doctors gave out the first after my Turbt and the pictures and explanations helped a lot. 

I can't properly recall what my tumour size or grading scores were. They're for the doctors to decide how to treat the patient. I think I was a grade 2 but after chemo and the the op to remove it they bumped it up to a 3 because of the type of cells in the tumour, which by that stage was gone and I'm now under quarterly review and about to face the 7th CT and review. I'm feeling fine but let's see.

My daughter and son-in-law helped me and my husband enormously throughout the treatment so I'm glad your father will have your and your sister's support.

All I would say is that at  each stage of the process something else pops up to concern us for a bit but I think it isn't worth being too stressed by any individual thing or trying to second guess what may happen next. What really matters is how the patient responds to treatment. As you will see from others, cancer teaches us to live now and hope to carry on as long as possible. 

I hope your father responds well and is set for a long and happy life. And that's what I want for myself and those on here. 

Good luck 

Hi2ndDaughter44, may I just offer the suggestion of Robinson's Lemon barley Water for your Dad? It was recommended to me by my old GP about 1979 when I had a twinge of cystitis. Many here will back up that it is very helpful to keep the bladder well flushed through. Dilute it properly.

If you live in an area where the water is dosed with toxic fluoride as part of the controversial supposed dental benefits, you might want to try getting bottled water that is zero fluoride for Dad, see if that makes a difference too.

Cranberries also contain some element that helps stop bugs sticking to the bladder lining. However the juice is very acidic which may cause irritation making life miserable. So worth getting capsules of cranberry if you want Dad to try that too.

Best wishes, 

Denby

Thank you