My sister has just been told she has bladder cancer

[flibertygibet]

Does anyone have any experience with this?

She is waiting for pathology results but the doc has recommended full hysterectomy and removal of the bladder. Means she will have a bag for the rest of her life.

She's very upset as you can imagine. Says her salsa dancing days are over and she might as well throw herself off a bridge.

She's 56.

I don't know anything about your sister's particular cancer Fliberty, but didn't want you to go unanswered.

I've got breast cancer, and would say at the moment she will be very much in shock, with a mixture of all sorts of feelings, anger, fear etc. She will obviously feel very down and say things she doesn't necessarily mean.

How much help is she getting from the oncology team with regard to counselling, explaining things properly to her and answering her questions about how her body will change?

MacMillan cancer care is a very good organization for supporting people with cancer and their families. If you have a big 'c' centre at your hospital, they too can be very helpful.

Once she comes to terms with her diagnoses, and begins her treatment she will start to see there can be light at the end of the tunnel. I wish her the very best, also if she's feeling terribly down and struggling to cope, she could talk to her GP, who might be able to give her something to get her through the early days.

Your sister could ask to be referred to a radiation oncologist to talk about radiotherapy as this is a common treatment for bladder cancer that is invasive.

Also, if she does opt for surgery, then she could ask about having a bladder reconstruction or continent urinary diversion (see the Macmillan website here for more information)) that would mean she didn't need a bag.

But lots of people have urostomy bags and live perfectly normal lives, including salsa dancing and swimming - they really are very discreet

If you look at this help site, there are contact details for people who have had bladder removal- you can call their offices and they can put you in touch.

This is not a cancer site, but it helps people with bladder problems and some have had bladder removal.
www.cobfoundation.org

www.ostomyland.org/ostomyboardipb/

So sorry to hear your sister's news.

Here is more general information on bladder cancer

Hope she gets to grips with her diagnosis and treatment very soon. Very best of luck.

Thank you all. She hasn't yet met with the oncologist, only the surgeon.

Unfortunately she lives overseas and it seems that while the standard of care is good, there is not as much support as we have in the UK. She has been very enthusiastic about the Macmillan site, which has good information.

Thanks Kurri for your insight. I am just feeling so helpless. She lives a long way away and yes, I think she's in shock.

I'm not sure about the reconstruction. They've told her there are complications with that and a bag would be better.

It's all so depressing.

Fliberty - I remembered reading an interview with Dennis Waterman's partner who had her bladder removed and googled it for you.

www.dailymail.co.uk/health/article-397494/Dennis-Waterman-cancer-operation-saved-darling-Pams-life.h tml

It's tough reading but the ending is uplifting.

really sory to hear this fliberty. I'm not 'up' on bladder cancer but i do know that what she is feeling now is a rollercoaster of emotions, the way she sees things will change many times over the next week, months or years. Anger, fear, helplesness and many others will gradually show themselves. This can be really hard for family and friends to deal with but it is part of the 'acceptance' iyswim.

If it helps i have had pelvic surgery to remove tumors and cysts and although my surgery was not as radical i have recovered well and now 2years after dx and about 6 months since recieving a 'life limiting' dx i treat cancer as a minor inconvenience- we all know its there but i'll be damned if i'm going to let it bother me

I hope your sister gets the very best care, don't be afraid of contacting Macmillan yourself- they are there to support family as well (BTW if you want to come and 'vent' find us on the tamoxifen thread- cryptic name for those not in the know but is a fab place for support for patients and families- and we sometimes have cake )

Thanks everyone for the suggestions.

Update is that the dx is small cell carcinoma. Very very aggressive.

My sis, and all the family, are in a state of shock.

I don't know what else to say.

Is there a specific forum on here for cancer?

I'm so sorry Fliberty, you will all need time to take everything in.

You may find it helpful yourself to contact MacMillan, to deal with your own feelings and talk about coping strategies, and how best to support your sister.

I don't think there is a specific cancer forum on here, but if you wanted to start a thread on health I'm sure there would be many people who could offer support.

I'm can't think of anything especially useful to add, but wanted you to know your post had been read, and that my thoughts and best wishes go to your family.

thanks Kurri....