Dp just diagnosed bladder cancer - handhold please?

[endoftetherpassed]

Hi all.

My partner has just been diagnosed with bladder cancer last week.
Totally unexpected and a shock.
He regularly has tests for his prostrate as levels have been high for 2 years. A bit of raised readings led to scan which showed something in bladder. Doctors reassured that likely to be nothing so neither of us were that concerned.
He went for tests with camera in bladder and biopsy taken last week
Doctor told him then and there its cancer.

He didn't tell me results t the tjme but later that day at dinner with kids, just said "I've bladder cancer".

I was not prepared at all and of course complete news to kids (age 11 and 19) as they know nothing about ongoing prostrate levels.
I was and still am in total shock. DP has adpergers and in his usual coping, head is buried in sand and won't talk about it at all. I dont even know egat the next steps are or what stage his cancer is at.
I know he has to go into hospital on the 20th July but I dont know what for. He has said no to me going.

A holiday for younger dd and I was already booked and we are away now. DP wanted us to go to keep things normal.

I am struggling and thank god for large sunglasses as i find myself crying alot. I am trying to keep it light and fun for dd (who doesn't want to talk about it but I know she us struggling). Her mood swings on holiday have been something else. Pure rage at times directed at ne but I know it's not really personal.

I dont want to make it almost about me but this already has been such a tough year and now this.
I've told 2 friends. One acknowledged the news once but has since just wanted to talk about her upcoming holiday. Another said "thats shite news" and has now ghosted me.
I can't tell my mum as she isn't in great health and I dont want to burden her.

I feel alone and frankly terrified.

How scary for you all. Sending you a virtual hug and all good wishes.

I'm so sorry to hear this. Such a huge shock.

Your DD will be terrified, don't take any of her anger personally and give her a big hug.

Soon all the treatment plans will kick in, then you'll be on a path at least. You can call the cancer charity lines to ask general questions and to talk it all through.

Unfortunately some friends are not good, it freaks people out. Doesn't make it ok, but it's no reflection you.

Take your time . It is a lot to cope with unexpectedly. Your DP probably needs time to process this news in his own way . His consultant may have made this upcoming appointment to discuss options and treatment. Ask him to please let you attend so that you are both aware of what you are dealing with . I'm surprised they told him by himself . Everyone in the family and friends will deal with this differently . Your friend was probably not knowing what to say or thought she should change the subject . People will say the strangest things , try not to get angry or upset .
I am sorry your family is having to deal with this . It's a cruel disease .

I'm so sorry you've had this shock. It's terrifying news to receive. I know that because my husband was given the same news when our kids were very young and he was in his 30s.

The early weeks of waiting to find out the stage etc were awful! I was a wreck and presuming the worst. Whilst I don't know your husband's situation, I can tell you that bladder cancer is highly treatable in many many cases. My husband is 7 years all clear now. And that's not unusual.

It's impossible not to worry, but as soon as you have more information it will feel more manageable. I highly recommend Action Bladder Cancer UK for lots of advice. I hope you get positive news soon.

My sister has bladder cancer . She goes for a scan once a year (it used to be more frequent ie every 3 months ) if there are any small sites of cancer they are removed . She's been told that bladder cancer is not life threatening unless it's very advanced so hence the regular scans . She was also told that B C reoccures so it's important to always go for her check ups . Apart from the scans and occasional removal of small tumours under local anaesthetic she lives a perfectly normal life and is very well and active . I'm telling you this because it's very frightening to have this diagnosis but the treatment is very successful if you keep on top of it. It takes a while to get your head rouund it and once he sees the consultant you will both be more reassured when his treatmentstarts . Sending you a hug x

@endoftetherpassed sending big hugs x if they catch it early it has a good recovery rate. My dad had it and is still clear 10 years later x again, biggest of hugs x

Goodness, your friends are being a bit shite, OP; you sound as though you’re feeling very alone, and that’s not surprising at all.

May I suggest that you talk to your daughter about what’s happening? Not in the way you’d seek support from friends but because she, too, is frightened about her father and she’s also aware that you are distressed. If you can acknowledge this and talk to her about how your DP wishes to handle the situation and make sure that she feels able to come back to you to discuss this whenever she wants to. She’s as frightened and alone as you are, and she doesn’t have MN.

Hi, OP. I just saw your post.

DH is now a nine year survivor of an aggressive BC. He’s had no recurrences. His bladder was removed, but the surgeon made him a new one from a piece of intestine. It’s called a neobladder. It’s been brilliant. He will continue to have annual camera exams for life.

It isn’t clear to me if your DP’s biopsy was the usual small biopsy but that’s my guess. The next step is usually a procedure called TURBT. Most BCs are like cauliflowers on stalks, and the TURBT cuts/scrapes them out. It is minor with at most an overnight hospital stay.

If the BC is not invasive, you can revert to camera exams possibly with local or systemic chemo or other therapy.

DH had TURBT and we learnt that his tumour had invaded the bladder wall so the bladder had to go. The standard is pre-op chemo (at least for his type of cancer). Sounds scary because the cancer is still there, but improves survival greatly. He found it much easier than expected. Surgery was keyhole and not bad either.

Not an experience you want by any means, but nine years later we feel very lucky.

The main thing you need to know is whether DP is going for TURBT on 20 July, or whether he has had this. My guess is that he is probably going for TURBT.

Hopefully he will move to monitoring after that. If he does need surgery, it is major and as his partner you need to be involved.

Good luck to your family

I had a friend who was diagnosed with bladder cancer over 20 years ago

He had a neobladder and lived for around 20 years before dying of a different problem 2 years ago. I hope this gives you hope

Best wishes to your partner

Best wishes to you and your partner.

My aunt was diagnosed with bladder cancer in the summer, she was told she wouldn’t see Christmas…..that was 25 years ago and she’s still going strong, 93 in October. Don’t give up hope.

My dad had bladder cancer at 73, I was absolutely in bits when I found out. He got told all the worst bits that it could have spread to the muscle & there was a chance he could lose his bladder, he had to wait a month from finding out to the surgery. He had the op via a rigid cystoscopy & had the growth removed then 1 BCG instillation on the evening of surgery day, he was in hospital 3 nights with a catheter which was removed on the morning he came home. He went back for the results a month later to find out the cancer had been stage 1a with clear margins, no further treatment just cystoscopies every 3 months for a year then annually up to 5 years, it never came back.

My top tips are get him shorts pyjamas for hospital as it makes it easier to manage the catheter, some incontinence pants for the first few days at home as it takes that time to get full bladder control back & for him to drink as much as possible to flush out the remnants of the BCG instillation & the small amount of blood from the surgical site.