Recently diagnosed invasive, RC

I'm in Stockport. Send me a pm with your telephone number if you want to talk on the phone.

Betsy Mae

Hi Betsy Mae

We're in Dorset, she's being treated at the Royal Bournemouth Hospital. Where in the UK are you?

Best,
Moglie

Hi!
Things are certainly different over in The USA than they are here in the UK. Not sure Indiana Pouches are offered routinely here either. Where is your Mum based?
Betsy Mae

Thank you both for your replies.

I did ask mum if they had the pathology back and she said yes, but couldn't remember the type of cancer she has! She did say it wasn't small cell carcinoma, as I was worried about that one.

She will have her RC in less than 3 weeks time (in the UK the NHS must perform all cancer related ops within a 3 week time frame). I understand today she has started on her chemotherapy and might have radiotherapy too.

My husband and brother have all agreed that following the op, they'll come back to our house and we will all take responsibilty for looking afer her post-operatively. My dad will be there but has a heart condition, so he can't take all the responsibility for her wellbeing.

I'm scared, not so much about the cancer now, as we know what that is, but how she will be post-operatively, how it will effect her mentally and how quickly she will recover.

My biggest worry is that she will go through all this surgery and this horrble disease will come back anyway. Do you ever get over that fear, I mean the prognosis for people with RC is quite good, isn't it?

As Pat suggested, I also need to find out how good this surgeon is and how many RC's they have done.

Best wishes
Moglie

Hello Moglie,

I haven't been on the forum for awhile. I, like Pat, have an Indiana Pouch. Pat helped me a lot when I was going through the decision making process of what diversion to use. From all the women I have spoken to over the past few years, it seems that the most success comes with the Indiana pouch. Its a continence issue primarily. The 'Indy' requires catherization but it is easy and practical.

The surgery is not a walk in the park but if you have an excellent surgeon, good hospital and after care then your mom will do fine. In looking back I remember being overwhelmed most of the time. A huge help was when my daughter would get information for me on the internet(often skipping some of the not-so-happy parts when relaying it to me). My husband helped me the most by being there, doing what needed to be done and holding me when the demons came to scare me. He did it all. The cooking, the cleaning and still managed to tell me often that he loved me and that it was all going to be fine. He never left my side and for a mild mannered man learned to be my advocate particularly in the hospital.

I cannot impress enough the importance of having an excellent surgeon - experienced in the diversion your mom has selected. Also be sure to ask about pain management. I had my surgery @ UCSF and had an epidural for 4 or 5 days after. It made a world of difference. Some people hear epidurals and they think of giving birth and not being able to move their legs. That is not true. I was up and about the day after my surgery, epidural and all.

Every day your mom will have questions, new things to learn and adjustments to make. Some days will be good, some not so great. Take it one step at a time. I can tell that you love your mom very much. She is very lucky. There are many people here who will help you and your mom with her journey.

Gracie

Moglie.....i'd still wait for that pathology report. This surgeon must be a seer. I went to the top cancer hospital in the US and had one of the top uro/surgeons in the world and even he waited until pathology came in. He may have had his suspicions but certainly did not convey them. I was also invasive T2a into the first muscle. CT scans and bone scans and blood work all indicated no lymph node involvement. It was not recommended that i do chemo first as it is with someone with nodal involvement. My Radical Cystectomy was scheduled which includes a complete hysterectomy. 33 nodes were taken out and all were clean so no chemo advised. Number of nodes taken out very important.
One of the things to realize is that she does have choices on diversions if the surgeon is capable of doing them. Some can only do the ileal conduit...some can only do the neobladder...the Indiana Pouch the most difficult to do but probably the most successful in a female. According to your mothers age she should be able to decide which she could live with. Because females have a shorter urethra the neobladder just doesn't cut it for most..it sure seems like a good idea but i can guarantee she will eventually have to catherize herself in an area you need mirrors to see not to mention dirty restrooms and trying to maintain sanitary conditions. If she is older i think she would do better with the outside bag...older meaning 70's or such.....
I have an Indiana pouch with a navel stoma...my stomach is flat and its easy to get to and catherize. Once it is trained you only have to cath about every 4 to 5 hrs or so and eventually can sleep through the night ..i go actually 8 plus hours now at night.
So read up on the diversions.
Its a tough surgery and will require about 6 to 8 weeks to get energy back. She will be training her diversion so sleep deprivation sets in at first. She'll have a lot of tubes when she goes home that need maintenance but not difficult. A good stoma nurse will teach her before she leaves.
Just a question...were there a lot of tumors? Large or small or both?
In the US its pretty mandatory to do a second TURB from 2 to 6 weeks after the first and unless the entire bladder was covered with tumors i rarely see a top rate surgeon not get them all.
How many Radical Cystectomies and reconstructions does this surgeon do in a year? Important to ask that question.
pat