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

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

Hi Judith , thank you for your kind words . Sorry for the delay , the site seems to have been down ! Thank you so much xx Hope you get some answers x

Hello again

Well I did get to see the new consultant who will be performing the bladder removal as well as a full hysterectomy and pelvic lymph nodes removal as well.  The surgery is still penciled in for the 8^th Nov so it is just a case of waiting.

 The consultant regraded the tumour as T1 G3 and does think that it is muscle invasive and aggressive.  In fact, he said it is probably a T2, although he wont know for certain until he removes the bladder along with everything else.  I don’t know whether I am more scared now than I have ever been.  He has written of the suggestion of Chemo before the surgery all together and says that he will use immunotherapy after is the cancer has spread.  I don’t know what to think anymore and the cure rate if it is muscle invasive is only 50 to 60%. 

 I know the chances of this coming back are above normal and I am more than prepared to keep fighting.

LCR – When we last spoke you were waiting for your surgery and for your results.  I hope that all went well for you x

Love Judith

Hi Judith , I’m so sorry that you are facing such major surgery ! It’s such a rollercoaster ride . I would just try not to look too far into the future or you’ll drive yourself mad ! Take it a day at a time . How nice if you to ask after me . 
My good news is that the cancer did not spread . I have just come out of hospital after having major surgery . I had to go to theatre three times and I’m absolutely exhausted but home and recovering slowly xx 

LCR 

how amazing you have had your operation so happy no spread how you feeling ? 

Judith 

wishing you all the best lovely xx 

I’m ok thanks , just very sore and tired

xx

I’m ok thanks , just very sore and tired

xx

LCR 

make sure you rest ypj have waited so long I Bt you are happy it’s all over now xx 

Yes I am x thank you x