Early on the journey, information needed.

Hello demijo80, welcome to our friendly, supportive group.

I don't believe that you are overreacting by being concerned about your Mums health and I do think that Mum's Urology team should give you straight answers when asked. You could try speaking to your Mums Clinical Nurse Specialist if she has one and ask for clarification of the results so far.  Once Mum has had the MRI scan and the second TURBT biopsies results are available,  it will go to an MDT meeting and then they will be able to tell you the Grade and Stage of the Bladder Cancer and the likely treatment plan.

As for the UTI, I believe that she would need to have finished the course of antibiotics before the TURBT is done.

Hope you get some answers for your Mum soon.

Love to you both, Ade xx

Hi demijo80,Welcome to our friendly group.I’m sorry to hear about your mum.Hopefully we can answer some of your questions and support you and your mum.Once your mum has finished her antibiotics drop in another urine sample just to ensure the infection has gone.I expect she will be ok to have the next TURBT.Scans are all part of the process when first diagnosed.During the 2nd TURBT they will take more biopsies and remove any remaining tumour.Once all the results are back the specialists will have the full picture and can put a treatment plan in place.There will be more waiting which is horrible..Things become easier once the results are back and you have less uncertainty.It’s natural to be concerned especially after losing your dad recently.We are all here to help.Love Jane 

Thanks for your reply.

I understand the need for tests, it's hard waiting around, I'm so grateful for this space to talk- I've been learning lots over the last month or so- lurking and reading people's experiences before posting myself, everyone seems so supportive.

My mum does have a mcmillan nurse- would she be the best contact?

I asked about staging, the consultant deflected my question by telling me the grade only and saying he's hopeful it's not muscle invasive but they need to check with a second turbt. I do believe this is also being done to stage the cancer, I asked to see the MDT report, which they declined, only to see it had been added to her NHS app prior to the appointment! That's the reason I asked about MRI earlier this week as I had seen it in the report!

Thank you for your reply.

The hospital made a lot of mistakes with my dad (long story- we are pursuing a negligence claim as they diagnosed Sepsis 2 days before treating him for it- sadly only 2 hours before he died and far too late!)  so I'm very wary of how nonchalant they can be, I guess I'm terrified history will repeat itself.

Thankyou for your kind words, I will no doubt be asking lots of questions as I've already learned so much from reading people's posts and all the lovely responses on here 

I’m so sorry about your dad.It must still feel very raw and it’s so upsetting that the hospital were negligent.Let us know how your mum gets on and post anytime as you can tell some of us don’t sleep much.Love Jane x

Ho demijo80

I'm so sorry to hear about the bad experience you had with your Dad. It's clear to see how much you care for your Mum and you are quite right to expect the best of care for her. Speaking to her Macmillan Nurse is a very good idea as she/he may be able to act as a go-between for you and the Consultant. Some Doctors (like all people) do not have a very good bedside manner but I am sure that they are doing all the correct tests and gathering all the necessary data before giving you a full report of your Mums diagnosis. The Consultant may not want to worry you further or give false hope before all the test results are in. The waiting is very hard, we all understand that, but I think you have to sit tight with Mum until she has had the MRI and the second TURBT. At that point the medics will have all the information they need to get your Mum on the correct treatment plan. Everybody is individual in this journey and what is right for one is not right for someone else. On a side note, when I had my first cystoscopy and found the tumour the Doctor who performed it told me not to worry, that it would be taken away during surgery and then I would just be monitored for life. I thought I would be "fixed in a fortnight" When my Pathology results came back I was found to have 2 very aggressive G3pT1 tumours with a micropapillary variant. So my treatment plan changed drastically. I was so shocked and very scared! If I hadn't been told that I would just need monitoring it might not have come as such a shock. My point is that sometimes it is best to gather all the information rather than give incomplete diagnosis.

Whew that was a bit of a rant!! I'm sure that you will both feel a bit better once a treatment plan is in place.

Take care of each other and keep posting. I'll look out for any updates you post.

Love Ade xx

Hello demijo80, can I just say you do not have to say sorry for anything, asking alot of questions is not rambling it's learning. Everyone here is here to help with whatever advice they can. I know the waiting is very hard but try to stay positive and I hope your mum keeps well. 

Brian. 

So right, Ade. Partly because my brother had had low grade BC& someone else had spoken about having 'regular scrapes', I was assuming I'd be the same. So it was an immense shock to be told I had G3, needed second TURBT & so on. 

Demijo80, your concern is absolutely understandable. If it's any reassurance, I had symptoms at least 4 months before first cysto which detected BC, which turned out to be G3. With cancer, we all want to move as fast as possible, but as others have said, it is important that they gain as much info as possible to ascertain the most appropriate treatment options.

I had to have antibiotics for uti prior to a cysto once, I think timing was such that I just had to take them for a week beforehand. Not sure why they want to do the MRI first - I had CT prior to second TURBT.  

The hosp PALS dept can be helpful if your Mum feels she is not getting timely and adequate information. Hope all goes well.

Hi Teasswill

I still don't think I've got over the shock of it all yet. It just seems to be a downhill slide. Dreaded Red patches seen on my cystoscopy after BCG induction, now I've got another surgery booked for mid August. It's very difficult to stop my mind from going round in circles regarding my treatment choice. . But I'm trying to keep the faith and hope that the red patches are just inflammation. 

Hope you are well. 

Sending love, Ade xx