Recently diagnosed invasive, RC

14 years 2 days ago #31103 by Moglie
Replied by Moglie on topic Recently diagnosed invasive, RC
Thanks Pat, sorry to see you are again having to go through some tough times. One thing you can say for sure with BC, its not bloody fair!

We're a lot more with it now, I think we've got over the shock bit and now have our tough heads on.

Goes without sayng, we're hoping the lymph node is enlarged due to infection rather than cancer. Certainly the oncologist said it wasn't easy to determine from MRI or CT scan whether a lymph node is cancerous or not.

Moglie

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14 years 2 days ago #31097 by Patricia
Replied by Patricia on topic Recently diagnosed invasive, RC
Good for you Moglie...a 2 hr drive is nothing when you're seeking the best.
With T2 into the muscle and Grade 3 with one lymph node possibly involved (it might just be enlarged fighting the cancer??) the protocol here is to do the Cisplatin/Gemzar first prior to a radical cystectomy.
I was T2 and Grade 2 but no lymph node involvement so they decided to go ahead first with the RC and my luck held out and no nodes were involved..they took 33 of them.
I would definately have the surgery at the Royal Marsden. They can also give you the protocol for the chemo and it could be done closer to home. Just make sure you know everything, drugs and dosages and be her advocate to make sure she's getting what she's supposed to be getting.
So far i'm doing ok...2 l/2 weeks to go with radiation. Just such a bummer!!
Pat

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14 years 3 days ago - 14 years 3 days ago #31092 by Moglie
Replied by Moglie on topic Recently diagnosed invasive, RC
Hi Pat, hope you are doing ok.

I've got an update for everyone.

After I was told there could be a 4 week wait for mum to see the oncologist, I went completely mad! I went to her GP with mum and demanded a private appointment to the top man in the country at the top cancer hospital, Royal Marsden.

So we're off to see him on Monday. Even though it is some 2 hours away from where we live, mum could have her chemo treatment there and the Royal Marsden is one of the top cancer hospitals.

After I got the private appointment on Tuesday, the NHS oncologist personally rang mum on Wednesday morning and said come in and see me at 12 noon (no waiting 4 weeks anymore!).

Mum went and saw him yesterday and he wanted to start her on Gem/Cis chemo today! Mum said she wanted to see the top man at the Royal Marsden first on Monday and the Oncologist agreed and said he would wait for the opinion of Robert Huddart and would see what he had to say. He said mum could either have her treatment at Royal Marsden or more locally in our own area. He said he could start her straight away following her Royal Marsden appointment.

Mum is staged at G3,T2,N1,M0 (TCC) though the oncologist said we wouldn't know if the 1 node has cancer until we see how it reponds to chemo. He also said he hoped to get mum to a stage where she should be operable, i.e. lymph node disection and RC. He is the first person who has not been so negative. I know she has a huge battle, but you must have hope.

Best wishes
Moglie

PS. MRI showed nothing on the cervix or uterus

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14 years 3 days ago #31090 by Patricia
Replied by Patricia on topic Recently diagnosed invasive, RC
Moglie...if the surgeon said its contained in the bladder then its maybe Grade 3 not Stage 3 which would be outside the bladder. He may have 20 yrs experience but with what...?? Prostate or bladder cancer....male or female?
And whats he doing looking at the cervex? Thats a new one on me. Maybe when they knocked me out they took a look at everything and didn't tell me?? Anybody else have that gals?
At any rate as Gracie said...with the female if she can have the Indiana Pouch (has to know how to do it) they take just about everything they can find in there...complete hysterectomy, cervix, vaginal wall, appendix (some do ,some don't) and the urethra (just with the Indiana) Don't let them talk her into a neobladder at her age. And hey she might just prefer the ileal conduit.
I don't know why it takes so much time over there for pathology.......i'm hoping with our Health Reform Bill here that we don't start experiencing those kind of waits.
At any rate, i wish for the best.........Pat

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14 years 1 week ago #30925 by Moglie
Replied by Moglie on topic Recently diagnosed invasive, RC
Thanks Gracie, I appreciate your reply and it makes perfect sense. It is too easy to get so paranoid that all you expect is bad news and just spend the days and weeks worrying.

I'd like to think they wouldn't have removed all the tumours if they couldn't do so safely, i.e. too close to the bladder wall.

Deep breaths are a good idea, I need to remember to breath at the moment!

Moglie
x

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14 years 1 week ago #30906 by Gracie
Replied by Gracie on topic Recently diagnosed invasive, RC
Hello Moglie,

I'm so sorry that you and your mom are so overwhelmed. I think we all can relate to hearing inconsistencies, thinking one has a grasp of the situation only to have to face more questions and not being able to predict the future.

As far as I know, it is standard to have a hysterectomy at the same time as the RC. I certainly had one and every woman I know in the same situation has had one. (they also took my appendix for good measure)

Try not to worry about something that is not confirmed. If it is - then you deal with it. I had to have chemotherapy after the surgery (I'm 60) and did not think I could do it. But you do. And I'm not brave. I just want to live. Please try to take it one step at a time.

Deep breaths. You will both get through this.

Gracie

Deep breaths for now.

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