Hi Dolly54 and thanks for posting,

I can appreciate this is confusing for you.

Unfortunately, as cancer information nurses who are not involved in your care, we cannot give a medical opinion. As they they know your situation the best person to discuss this with would be your specialist, you could contact the specialist secretary to see if there is a way of contacting them. Or, I wondered if there is a nurse specialist you can speak with.

It is the biopsy that will confirm whether or not the cells are cancer, as the cells are looked at closely under a microscope. It might be that although during the op the doctors were concerned it was cancer in that particular area in the tube, the biopsy has confirmed that it isn't and that it is just inflammation. However, it is best to clarify things and get an explanation from your team at the hospital.

I hope you can get more information from your team soon. Please feel free to get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

Take care, all the best,

Jemma

To give a back ground just over two years ago after a TURB i was given the diagnosis of bladder cancer as result of several biopsi's of growths in my bladder there was also one tumour in my ureta between my bladder and my right kidney. Following keyhole which was abandoned a quarter of the way that one was found to be in operable. Prognosis wasn't good at that stage . Following another TURB it was found to be possible to at least de bulk this tumour though not remove. Every flexi i have had has found recurring tumours in the bladder as well all low grade stage 2 cancers. Every time these have been removed plus the debulking of the what I call the stubborn one. At my last TURB because of a delay I was found to have several more growths than at the flexi and some had grown quite a bit, including the stubborn one which had grown quite a bit. The ones in my bladder were removed but because the stubborn one had grown so much the surgeon could not debulk without risking making a hole so he left alone. After him and his boss had talked it was decided that i would probably need either chemo or radio therapy to shrink the stubborn one ,as it is in danger of blocking tube. I was then told this would be discussed at a meeting with the whole team of doctors. On discharge I went away to convalesce my surgeon agreed to let me travel down to devon on the understanding i was to have complete rest. On coming back 6 weeks later i have found an appointment for last week of October. I rang the department to ask if a clinical letter was also due with the decision of coarse going forward. Next day had a text with link for clinical letter. Which states it from a junior doctor on behalf of a colleague to say result of biopsi was no cancer found at all just  a inflamed bladder.  But would keep an eye in future by a flexi. No mention of other biopsy's which as there was 11 plus the stubborn tumour to choose from. Didn't say if biopsy was from stubborn one or one in bladder nothing no mention of result of CT scan on my bladder and kidneys nothing all organised as urgent by my team. Ive had no chemo or other treatment which could have resulted in this miracle good news. Tried to get clarification but just getting fobbed off with doctor hasn't picked up message. So logically I am wondering one of two things was the original diagnosis correct or was there no cancer in first place and all this about one in the tube a figment and lie too. Or is this clinical letter a fob off. Rather than being open and telling me they are not going to treat my cancer but let it become terminal so shortening my life. Because they don't think im worth it. 

Hello Doll54 and thank you for getting back to us.

I can appreciate this must be a worrying time. The clinical letter you saw looks like it gave information you were not expecting.

I am afraid that we cannot throw any more light on your situation. You do need more information, this will be from the outcome of the multidisciplinary team meeting and an explanation of the letter you have seen. This will be best discussed with your doctor at your next appointment. 

You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

Take care

Caroline

Hello Dolly54 thank you for your posts.

I don't think your reply has been edited, I could see all of your post. I may be wrong but I think you may just need to press the button ( it will say - click here for more) underneath it to see all of your post.

Take care,

Caroline

It was not a case of not expecting more a case of at first elation that a miracle had happened. Then reality a case of logic set in. The logic that says if  there was no cancer now was there in the first place? as nothing had changed , same procedure Flexi finding five tumours TURB booked pre opp postponed operation as I was still recovering 8 weeks after pneumonia. So went on short break came back passed pre op. Had TURB  surgeon came in said that original five tumours had grown but had additional six smaller ones as well. All successfully removed as usual samples plural  taken . One blot on operation he could not debulk stubborn one as it had grown a lot he would ask his head of team surgeon to have word with me following morning head and team came round said it was likely next step would be chemo or /and radio therapy but whole multi team would discuss. This TURB except for the stubborn one was no different to the others removal of recurring tumours samples taken not one No after treatment except rest and wait for next flexi at which point all tests would be in including the urgent CT scan on my bladder and both kidney as the other kidney had signs of stones shown at earlier CT scan. I know cancer is either removed completely surgically or treated by other means. .  Usually I don't know if all has been removed till another flexi it is then it is seen whether any recurrence has happened. But there has been no flexi since the TURB  yet so how can this result be reached. So far nobody has come back explained at all. All the letter states is the one biopsy  from bladder shows no cancer the bladder has no signs of cancer disease at all just signs of previous inflamed tissue. No mention of TURB RESULT. so dont know .  On this letters result Im beginning to wonder why have I got to have another flexi as it states all is ok. If it is just inflamed tissue the rest of previous diagnosis was a lie. It can't be both. Then why did i need all those TURBS and the attempted resection just over a year ago. Why is it a junior college intern writing on behalf of a colleague with this result not a member of team.     

thanks it wasn't all on show. xx

Hi there Dolly54 

I'm afraid as we aren't directly involved in your care it is difficult for us to know what has happened in your situation. We would encourage you to speak with your doctor so they can explain things in greater detail with you. This hopefully will give you a better understanding of the results so far and why you need to have further check ups.

If you are struggling to speak with the hospital team or you are unhappy with this situation you could contact the hospitals Patient Advice Liaison Service PALS to look into this for you.

Wishing you all the best moving forward

Best wishes

Naomi

Have managed at last to get clarification from the doctor in question thanks to the intervention of Mc Millan nurse. It seems the biopsy was of a  very small section of the bladder wall not in the area of my cancer which looked suspicious and it is that section they could clarify as clear at the moment. So good news but not as good as hoped no miracle as such. He did apologise for not making the situation clear. So its back to the drawing board with more flexis hoping my situation stays stable. AS to the stubborn one going forward a plan is being drawn up. Thanks for your help. To others on similar journey this proves how vital and helpful the Mc Millan nurses are in getting your back for you.