Bladder Cancer Diagnosis

Hi JT64 and welcome to this friendly and supportive group, although sorry to hear your husband has bladder cancer. Your story will be familiar to many of us. Second TURBTs are very common and will give a more accurate diagnosis once the results are in. These results will determine the next step. Not unusual to not see the same doctor each time as they all have their own specialities and availability.  Most people are allocated a designated CNS (Cancer/clinical nurse specialist). The CNS is the best person to call for information and advice. As regard the lung nodule, these can be common and in many cases just need monitoring. My nodule has not changed in many years. Lots of experience here, so always someone with an answer to most questions. Best wishes.

Hello JT64, welcome to this friendly forum , I hope we can help. I can hear the shock in your posting and it sounds to me like communication to you both could be better. I was diagnosed with T1G3 2 years ago. You can read my experience if you click on my name. I remember having a 2nd turbt around 6-7 weeks after the first and was told that was normal protocol at my hospital. The one difference I have noted with your situation, is that after the 1st turbt, I had an outpatient face to face consultation. My husband and myself, consultant and cancer nurse specialist attended and the results of 1st turbt discussed, the 2nd turbt and treatment options going forward. This involved giving me information of risks and % success of each treatment. we had the opportunity to ask so many questions. I dont understand why you havent had this, i thought it was the norm tbh. It may be useful to ring the urology nurse specialist numbers you have been given. Ask them who is your husbands named nurse ,and ask her when you will be getting an appointment to speak to the consultant. 

It is a very stressful and anxious time for you both right now. I found that once I had a treatment plan in place, I began to feel calmer and more optimistic. Stay with the forum, there is a wide range of experience here. All very kind people to steady you through. Take care 

Hi Rily, thank you for responding, Interesting to hear about your nodule. Something promising. Unfortunately we don't have a designated person allocated to us. I'm not sure how we'd try and get one either. The non communication is debilitating. I'm so glad I found this forum and people going through the same situation

Oh Angela thank you so much. I will do that on Monday. We have been beside ourselves with worry and unanswered questions. My husband's mostly been online getting the information which I don't think is the best thing.

I will check out your story.

Take care x

Hi JT64

Honestly I wouldn't go online , Dr Google is very often outdated information , worst case scenario , click bait . It will unnecessarily frighten you. Take care x

Hi JT64,Welcome to our friendly group.I’m sorry to hear about your husband’s diagnosis.We all know how scary it is at the start when it’s all new and you are looking for support and guidance.Hospitals do vary a bit.I had a first TURBT and a second a few weeks later.I didn’t see anyone between the two and got the diagnosis a few weeks after the second TURBT.Please stay off Google if possible.This group is on hand to offer support and answer any questions you may have.There is a lot of experience on here so there is usually someone who can answer.Things tend to feel better once all the results are in and a treatment plan is in place.I hope you get an allocated nurse who can help.Love Jane xx

Dear JT64,

You have had a lot to take in and as others have said it all sounds quite familiar to us here. 

Communication can be poor, mainly I think because the medics see a lot of patients and don't stop and think what they would like to know if they were the other side of the table. 

It took me a long time to work out who was who in the hospital, how the Oncologists fit in and the Urology department as well as the robotic team who do the bladder removals. In my hospital the TURBTs are done by one team and the removals by a different one. 

So you will have a CNS for the TURBT team, another for oncology if offered chemotherapy and or immunotherapy and another for the robotic team (or surgical if they don't use robots in your hospital).

Every hospital/Trust has its own way of doing things  so, for example, I only had 1 TURBT, the cancer was muscle-invasive so we moved straight to chemo and then bladder removal (over several months).   

One thing you said struck a chord - I have never been as fit as the day they told me I had cancer and several friends told me 'but you don't look ill!'

All very confusing.

Results from Pathology, CT and other scans can take longer than you'd hope - not enough radiologists to read the scan etc. My hospital outsources them then has to check because the in-house staff are more used to seeing things eg after the removal and know better whether it's something to worry about or not.

You may not have yet heard of the Multidisciplinary Team (MDT) meetings where staff from all specialisms get together to decide how to treat us. 

So it may seem chaotic but actually things mainly work out well because the staff know what they are doing. You will soon learn how they fit together. If you need to understand something ring the CNS working with the specialist you've just seen and they'll sort you out.

Finally, I had no choice about bladder removal but in the nearly 3 years since I was diagnosed I have learnt a lot - about bladder cancer, myself and my family and don't regret losing it and gaining a stoma. Ask us anything, someone will know the answer or can point you in the right direction.

All the best,

Latestart

Hi, Re Lung Nodule. I had one before I had bladder cancer. Urology found it via a CT, and it changed my tratment for a short while. Was soon back to normal  and I am checked annually for the nodule, I have had it sinse 2020 and no change. 6mm   apart from  aneurysm  (fixed) you will have a lot in common with most.

Hi just read your  post i got diagnosed last year its a scary time for you and your husband but you will get through it , the people on this forum are a big help with advice and support wishing you all the best  Phil. 

Thank you everyone for your kind words and advice. It's so good to know we are not in this alone xx