Getting jittery

Hi Inanna,  I waited about 4 weeks after my first TURBT for the appointment with a consultant, but the surgeon who performed the TURBT had already told me he was sure it was cancer and he thought he had removed it all. I don't think it dawned on me there would be a grade and stage so I loped along without worrying. At that first appointment I was given the grade and stage and introduced to my CNS. Since then she's been my first point of contact for information and she always gets back to me within 24 hours. I hope you get a good one, it really helps. After the TURBTs for my two subsequent recurrences my CNS has phoned me at home with my biopsy results which seem to take about a week to ten days and I am always slightly on edge to hear them.  I find when I get close to any next step is when the jitters start. You've done so well to stay laid back, it saves your energy for healing. They will have your results by now. If you don't get a return call today, phone again tomorrow. Sending love Hx

Thank you so much, you have reassured me.  I just wanted to get a rough idea of how long I have to wait. I remember the surgeon saying I could not have chemo wash as one of the wee monsters were in a difficult position.

I think we will all get the jitters at the next step.

I have been a medical sec in my time and I know from experience that not a lot happens quick unless it is really urgent.  I am going to unwind myself again. In a funny kind of way, I am glad so far to have heard nothing x i have not had an emergency call and for that I am grateful

Thank you so much H

Love Inanna

You are so right I think...if the NHS doesn't rush its generally a good sign. x

Sometimes you get conflicting info too. When I had TURBT, the surgeon said he'd see me after the op (he didn't, but it might have been I was asleep or in the loo), & also that they'd write with results. It was nearly 3 weeks later they called with an appt date the following week.

They have to wait until they've had a Multi-Disciplinary Team Meeting to discuss the results & advise on best course of action. Appts etc are often arranged at fairly short notice to fit patients in as needed, bearing in mind they will have patients at all different stages of their cancer journey - new, follow ups after different types of treatment etc.

The waiting is always the worst time & we all worry, even knowing that won't change the results. Try to keep busy to distract yourself.

Thank you so much Teasswill.  Of course the MDT, I forgot about them duh.  I have felt fine these last few weeks, then today I felt a bit agitated.

I am certainly going to stop thinking about it and do my lunches and have fun.  Now I have read the responses regarding the waiting game, I will wait patiently, go out, read good books and let them get on with things without me pestering.  You are right, worrying solves nothing

Thank heavens for this forum

Love Inanna xx

Hi Inanna,My urologist said things looked sinister after a turbt on the 10th June and I was diagnosed on the 3rd July.I think the longest I have ever waited for results is 6 weeks,in general its usually 2-3 weeks.I hope you get your results soon,the waiting is never easy.Love Jane XX

Hello Jane

Thank you so much, always good to hear from you. Going to get my laid back head back on

Love Inanna xx

Hello Inanna I think we all know what your'e going though at this time of waiting, A roller coaster of emotions. I see by reading posts about this not much I can add to it apart from sending my very best wishes to you harry x 

Hi Harry

Thank you so much for your best wishes.

I know I am not alone in waiting, that helps.

I am not going to worry, no point, just live in the Now

Love Inanna xx

Started with an ultra scan then TURBT after further 6 weeks. I waited 5 weeks for the TURBT results. The surgeon told me on the day of the TURBT that something else was going on. Had CT scan 10 days after the results. Told 17 days later that the cancer had spread to other organs. Chemotherapy started 12 days later but attended a talk by the chemotherapy nurse 3 days before that. Seemed endless at the time. Both if us were naturally upset on diagnosis day 2 November 2018. Decidesd to remain positive and have been so ever since.

So keep up your laid back approach. Worry can only make things worse.

Chemo worked for me. All tumours shrunk. No cure in my case because the cancer spread. However, they can keep things stable. Talking with other patients I have got off lightly as far as side effects are concerned.

Hoping things go well for you.