Recently diagnosed invasive, RC

I'm completely confused.

After I caused a bit of a stir in the hospital tody, the senior registrar visited mum tonight and these are the facts.

1. Histology takes another 2 weeks
2. Confirmed that the operation last Wednesday removed all tumours
3. Experts to meet in 2 weeks time to discuss case, when histology results are available (I've been invited to attend meeting along with my mother)
4. The surgeon who removed the tumours last week thinks "maybe" there might be something on the cervix/vagina
5. Mum referred an oncology nurse who said it might be stage 3 (doctor didn't say that though)

The registrar said to mum that if it has spread, then the surgeons would only remove everything (i.e. womb, bladder, cervix) if they knew they could get everything. Mum agreed and said she wouldn't want such big surgery if it wasn't a complete cure.

I'm gutted, devastated, confused.... I still don't know if my mum has a chance of whether she is going to die.

This just goes from bad to worse.

Moglie
x

Moglie,

Not sure about the rules there, but in the U.S. if your mum does not give the explicit permission to share information with you, they cannot.

Check with the nurse when you call. Your mum may need to sign a form for them to speak with you.

Mike

Hi Pat

Plan of action, I'm ringing the surgeons secretary tomorrow to get an appointment to see him in person, or on the phone, so I can ask all the relevant questions.

Betsy Mae called me this morning too and we had a lovely long chat, she was so helpful, calm and supportive. She has suggested mum calls her and I think its a great idea - to hear it from someone who has been through it, not just someone reading lots of stuff of the internet, i.e. me!!

Best wishes
Moglie

Moglie....not unusual to be in denial at first..not unusual to cry.......we've all done it.....but have her allow you to be her advocate. Its a simple thing for her to give permission for you to have knowledge of the pathology report ..you don't have to tell her more than she wants to know...but you must be informed even if she doesn't want to be. You need to know why he wants to do the chemo and radiation and not just the cystectomy with diversion. Is it a large tumor, many tumors, are they into the first or second muscle? If no lymph nodes involved which they would know by a CT scan i would wonder why not just go for the radical cystectomy?
Truly i'm not trying to be pushy here. Someone should be informed and mum is not up to it right now...and we can truly help you with what you find out.
Pat

Pat, I don't know how the UK and US differ, perhaps I can speak to Betsy later and she might be able to help.

The surgeon said the cancer is contained, its not gone through the bladder wall. He wants to "maybe" give mum radiotherapy as well as chemo, to help shrink the tumour before he removes it.

Mum asked him to be brutally honest with her, and he said if you don't have the surgery it will spread, if you do have the bladder out you have a good chance and he said he would get the cancer out for her. He did not mention anything about it spreading to nodes as well, just that he would get it all out. He is a very experienced surgeon with 20 years as a Consultant Urologist.

Mum is 66 yrs old.

I know I haven't got all the facts, grades, stages etc, but I can't push her, mum is in bits at the moment and last night I saw her on my own and she just sat and cried. Its incredibly hard and I can't start demanding reports etc. I'm sorry, but sometimes denial is the only way for individuals to get through something. I personally want to know everything, my mum doesn't, she just wants it out.

I do appreciate all the help and advice.

Best wishes
Moglie

Moglie...get ahold of that pathology report..tell your Mum to tell the nurses you can have access to it. If they are starting her on chemo its important to know if they found it also in the nodes as well. I'm a bit confused over the radiotherapy though...i mean its either chemo and then RC...any radiation will make a mess of the intestines. I would really question that whether they like it or not.
How old is Mum?
pat