To ask for medical advice regarding my DH?

[Tadghthepup]

I know asking this is a bit BU but I am so worried about him and I know he is in bits but is trying to be stoic and manly... anyway...

Just before Christmas, DH noticed blood in his urine. He went to the GP, was referred to the hospital, had a cystoscopy, diagnosed with 3 non invasive bladder cancer tumours.

He had them removed (TURBT) on Feb 19th and his follow up visit revealed he had grade2 stage 2 bladder cancer. He was told he would have a further biopsy and providing that was ok they would give him BCG treatment.

He was scheduled to have this in early April but this was cancelled due to Covid 19. So Friday he had another cystoscopy and they said they could see more tumours. They wouldn’t let me be with him so he didn’t ask any questions, mainly because he was dealing with the discomfort of the procedure and was a little knocked back by this news.

We will have to wait for at least 2 weeks to hear what will happen next. We presume a further TURBT to remove these tumours.

My question is does this mean his cancer has changed grade or stage? And if so, will his treatment still be BCG? And what statistically is his 5 year survival chance?

I think it unlikely that I will be allowed to accompany him to any appointments or treatments so I will need to write down any questions for him to ask. He is very quiet and reserved so likes me to go with him to ask these questions and finds it difficult to pose any himself. What should I ask that will give us the best information regarding his future? We both like to know so we can plan. Not knowing is frightening us both, because we stupidly think the worst and agonise over what may or may not happen. Knowing and planning gives us structure.

Thanks everyone.

[Tadghthepup]

Oh heck, I didn’t realise that the voting option was on.

[Londonalf]

I'm sorry I can't help but I just wanted to bump your post up in case anybody else can. I really wish you all the best, health worries are awful.

[Sapphire387]

I have no advice. Just wanted to offer a hand hold. 💐

[FeelingTheBurn]

I am sorry I can't help with anything medical.
But, my local hospital is allowing patients to FaceTime or call and put on speakerphone a relative while they are in an appointment. You could ask if that's an option?

[StrawberrySquash]

Sorry, can't advise on your specific questions, but would you be able to be on the phone for his appointments? I agree it's so helpful to have another person there for questions/note taking etc. It's so easy to come away from an appointment and think 'Why didn't I ask...? What did you they say?' etc.

[Clancey]

OP, they never actually tell you much at the hospital as bladder cancer is unfortunately a Cinderella cancer. But there’s plenty of people who’ll be happy to speak to you over on the Macmillan forum.

[Veterinari]

You should definitely be able to email or phone and ask questions.
Most cancer services have dedicated nurse specialists who can answer much of your questions or put you in touch with the consultant directly.

[Ireolu]

Ask for a telephone appointment with his urologist and ask all your questions about treatment and prognosis. All cancer patients are discussed at an MDT (multidisciplinary team) where the decisions as to how to proceed are discussed on basis of scopes, histology and scans. Chances are despite what they have seen he will need to be discussed first before a decision is agreed and fed back. Those discussions happen weekly. Call his consultants secretary and schedule something in as covid means that face to face appointments are not happening. No one here can give you the plan unfortunately. Hope everything works out ok.

[Tadghthepup]

Thanks guys.

There is a meeting on Tuesday, I think that must be a MTD meeting.

I never thought of FaceTime or speakerphone when DH is with his Oncology Nurse. Thanks for this brilliant idea! DH gets a little overwhelmed when he is with the doctor or nurse and is just so bloody grateful for their help he forgets to ask about his future treatment.