I know it’s easy saying try not to worry but until you have all the answers try and put it out of you mind until you have all the results ,

In 2021 I was taken into hospital where a  6 cm mass was found in bladder ,I was sent home and operation was booked for 2 weeks later ,when they removed the mass it came back as cancerous

I was sent for a couple of scans and booked in for a second biopsy’s to check if they got it all and they had and it hadn’t spread anywhere,I have been having BCG treatment over 3 years and cystoscopy everything is going in right direction,I now have 3 treatments left…and so far I’m still all clear 

Hi Bivvytramp

Many thanks for replying and I am glad everything is going in the right direction for you.  It’s terrible when they tell you they have found a mass and then just send you home and say don’t worry!

may I ask what BCG treatment and cystoscopy

so glad you are still all clear.  It’s terribly scary it’s so large so I think that’s what is making me worry more x

Thank you x

Hi.  Wondering if you can help again.  Had a turbt to get a biopsy of the tumour and not getting the results until the 5/10.  The consultant was quite abrupt in telling me that because of the strikes, my treatment will be delayed.  He also told me that he was not going to remove the tumour, as I was just there for a biopsy.  He told me that he thinks it is muscle invasive and aggressive but because of the strikes in the NHS there isn’t a lot he could do.  Although he would see me sooner if I had medical insurance (I don’t).  So, I’m now back at work with this tumour growing inside me and terrified that it’s going to spread.  What on earth do I do now?

Hello, wondering if you could help me again. I had a turbt last week but the consultant saw me before the surgery and abruptly told me that he had no intention of removing the tumour and he was only going to do a biopsy.  He also told me that because of the strikes my treatment will be delayed.  He went on to say that he thought from looking at the bladder scans, the tumour was muscle invasive and the cancer is aggressive. Because I got upset he did agree to see me on the 5 Oct to give me the results of the biopsy but I was to understand that this was a favour.  I have had 2 CT scans and they have shown that nothing has spread beyond the bladder.  The consultant then said that if I had private medical insurance then he would see me sooner.  (I don’t) So, now I am back at work with no further treatment wondering if the tumour is spreading and there is absolutely nothing I can do.  This is awful and I’m crying every day.  Only the boss at work knows.

Oh my goodness this sounds horrific and like you're being treated wrongly ,I doubt a Doctor should speak to you in those terms it just sounds wrong ,maybe you could get in touch with PALS at the hospital who may try and sort this out for you ,it doesn't sound right to me ,I hope someone else comes on and gives you some more advice x

I’m so sorry that your consultant has been so crass and insensitive . Cancer services will go ahead as soon as possible ,On a positive note , it is good that it hasn’t spread beyond the bladder.Please ring the consultants nurse practitioner and voice your concerns . He / she may be able to clarify things a bit more. I just wish that some consultants were a bit more sensitive . Sending a big cwtch ( Welsh for a cuddle ) xx

That is appalling behaviour by the consultant  He needs lessons on how to talk to patients.

Hello all

Thanks for your replies.  Totally understand that we don’t pay NHS staff anywhere near what they are worth, especially Nursing.  I understand the strikes and support the staff, and like all, we are struggling with the cost of living, but I was surprised when he said that he would see me if I paid, it made me feel somehow worse for being poor if that makes sense as it’s not something I can resolve quickly.

To my shame I cried in front of the consultant and that’s when he relented and offered to see me on the 5th October at 5pm.  Then, he got a little bit cross again as I didn’t immediately understand that it was a favour as it was out of hours.  Once he explained, of course I thanked him which seemed to calm us both a little.  It was a bit of a blur to be honest.  I wonder if it is because he is Romanian, and the accent can come across as abrupt?  I’m not excusing him, it has just crossed my mind.

I had the turbt on the 20 September so the 5th October will be two weeks later.  I’m extremely grateful as he said 5 to 6 weeks when he first walked in.  Will the results of the biopsy be back by the 5th or is that something that’s impossible to answer?  

Re spreading ~ I found out that it hadn’t spread after 2 scans, one on the 12th August when the mass was discovered and another full CT scan with blue dye on the 22 August, by asking my GP to look at the notes on my file.  I don’t know about now though.  

Sorry, this has turned into a novel, but it does calm my mind when I get this all down here.  The surgery has taken away some of the pain as the Consultant told me that the tumour was starting to grow into my urethra.  

I was back at work today as it’s a newish job so haven’t much in the way of sick pay and I am using holidays at the moment.  I live alone, my husband died 12 years ago when the boys were teenagers, there is my fear, I’m all they have.  Yes they are in their early twenties but like all kids, especially in this climate, ….. well, you all know…

Thank you for reading.  It is cathartic to get it down in writing.

LCR - I appreciate the hug x

Judith x

I'm surprised you even want to go back to the same consultant after that ,I certainly wouldn't it sounds like he was belittling you ,I'm shocked he thought it was ok to suggest if you were paying he would see you sooner but if not then I'm not available ,that's terrible ,anyway Judith one way or another I hope you get sorted x

Hi Judith,

I just wanted to send you love and strength for whatever lies ahead. 

Regarding the consultant being rather insensitive, I think you may well be right about it possibly being due to him not being British. I don’t mean that in an unpleasant way- it’s just that we Brits have ways of saying things that are different to other cultures, particularly if there is bad news involved. It doesn’t seem right him commenting about seeing you earlier if you were paying though. 

Please keep in touch with us all here- you will find there’s lots of support xx

Hi Judith , sorry for the delay in replying , I had surgery myself yesterday , I am truly appalled at how this consultant has made you feel ! Yes it does seem as though he is seeing you at the start of his private list “ as a favour”

Patronising twit ! No patient should be made to feel like that and talks of strikes etc should not be dragged up when a patient is facing cancer! This is made worse by the fact that you are more or less dealing with this on your own! 
Biopsy results can take 2-3 weeks , so hopefully they will be back in time . Please don’t feel ashamed for crying in front of him the insensitive @@@@ ! I truly hope that his attitude changes next time you see him!  If not you can report him to Pals or have a chat with his nurse practitioner ( you should have been given contact numbers for her). I wish you all the best and let us know how you get on xx Sending a hug xx

Hi Judith , sorry for the delay in replying , I had surgery myself yesterday , I am truly appalled at how this consultant has made you feel ! Yes it does seem as though he is seeing you at the start of his private list “ as a favour”

Patronising twit ! No patient should be made to feel like that and talks of strikes etc should not be dragged up when a patient is facing cancer! This is made worse by the fact that you are more or less dealing with this on your own! 
Biopsy results can take 2-3 weeks , so hopefully they will be back in time . Please don’t feel ashamed for crying in front of him the insensitive @@@@ ! I truly hope that his attitude changes next time you see him!  If not you can report him to Pals or have a chat with his nurse practitioner ( you should have been given contact numbers for her). I wish you all the best and let us know how you get on xx Sending a hug xx

Hello all again

thank you for getting back to me, it’s a huge help to know that people do care.  Work have been great but only 4 people know and that’s because legally I have to tell them, but I did ask them to try and make sure that it doesn’t spill out into the rest of the office.  I suspect that last week whilst I was off for the surgery and rest, it has ‘got out’.  Mainly because a lot of the staff are extra chatty, whereas before it was a lot quieter.  They are not horrible in any way, it’s just a very busy office.  

I asked management to keep it private as the very word ‘tumour’ can have an awful effect on people, and often people don’t know what to do or say.  It’s almost worse for them I think, as they can’t ‘fix it’.  My senior manager had a lovely chat with me today and said that before the surgery, he and another manager felt helpless as they could see I was in a lot of pain and there was nothing they could do.  This is why I wanted it to remain private.  I can’t bear them feeling helpless.

back to the consultant.  I don’t have a great deal of choice regarding Consultants.  I live in quite a rural county so basically it’s ‘get what you are given’.  There really isn’t a choice.  If his attitude still hasn’t changed the next time I see him then I will ask for help.  He is seeing me at 5pm on the 5th in what is called a ‘hot clinic’ then it has the letters ’DONA HOPA MDT urology with histology regional ? cystectomy’ so hopefully that means something will happen.

LCR, to have surgery and then take the time to reply to me the following day is amazing.  I am so grateful for your level of kindness, thank you.  I hope that you are feeling better after the surgery and that it went well.

Thank you to everyone who has taken the time to reply, it means a lot.

Judith

I wish I could find the right words to help. I don't know what they should be, but I am thinking of you. I have burst into tears each time I have been seen by a consultant. I have been told it is understandable and better to let it out than keep it in, I think was said. It is just stressful enough just being in a hospital.

LCR 

how are you doing after your surgery? 
hope it all went well xx 

Judy 

sebding you a warm hug 

I hope consultant will behave better next time xxx 

Hi ladies, thank you for your concern and kind words . The surgery went well , but despite it being minor surgery to take lymph nodes out I’m shattered! Must be my age lol ! Makes me wonder how I’m going to cope with the big op next month ! Oh and Judy , we’ll all come to you and give your consultant some pointers on bedside manner ! Lol Let us know how you get on x

LCR 

glad to hear you are ok xxx 

Thank you x

Hello all

LCR – It’s good to hear that the surgery went well and I hope that you are continuing to recover well.

Well I saw the consultant again yesterday and it was good and bad news.  The bad news is, it is cancer, the good news is that it hasn’t spread and that they are going to remove the bladder completely.  This will mean a bag to the exterior of my body for the rest of my life but I can live with that. 

The consultant said that this will also mean that there is no need for Chemo or radiotherapy as the are going to remove all the cancer with the bladder removal.

He has referred me to a hospital in Newcastle for the surgery and he was going to do this when I left yesterday.  But, what has scared me is that he told me that this is just to put me on the hospital’s waiting list and if I hadn’t heard anything in 2 months then I was to contact his department and they will try somewhere else.  2 months?!! That seems a huge amount of time to be banking on the fact that the tumour wont spread by then.  At the moment it is contained in the bladder but no one can tell me how long it will stay there.  I did ask if the tumour had invaded the muscle and his answer was a little strange because he replied that although there was no evidence of it as far as he could tell it had.  He has also told me that he is treating it as muscle invasive.

The consultant also said that if it did spread then they will scrap the bladder removal and the only option left is Chemo.

So, my question is, how long on average does it take to get surgery to remove cancer when the referral comes from one Hospital Consultant to another.  He has marked it as urgent as it is quite advanced he says.

Thanks again for taking the time to read all this

Judith x

Hi Judith , I’m so sorry to hear that you have cancer . They will refer you as urgent to the other hospital so you should hear soon . I would suggest that you call the nurse practitioner and ask for the number of the new consultants nurse practitioner , otherwise ring the hospital switchboard direct and ask to be put through to the Urology specialist nurse , they can then chase up your referral and help you with any questions you have x Sending a big hug . I’m waiting to hear if my cancer has spread . I have my main surgery next Monday x

Hi LCR

Oh I hope that it all goes well with you, it is tough enough dealing with cancer yourself never mind spending time helping others (and you do, really well)

I will definitely take your advice and call the hospital on Monday morning, if it is only just to chat with them

it is the waiting that’s the worst I think.  I always think it’s much better if there is a definite plan in place.  I am keeping everything crossed for you and hugs xx

Judith