Bladder cancer G3T1 diagnosed may 2021

Hi, im struggling to get answers from my hospital urology dept and CNS regarding BCG appts and why im not being given any appts. What i need to know is..at what point is the bladder considered as clear. I was clesr on july 5th no recurrances and urine clear.6x1 bcg appts requested but not forthcoming. No reason given CNS didnt know either.since then sept 8th showed tiny recurrence ehich was burned off during cystoscopy.at this point, would the bladdet be considered clear?  NO one seems to be able to tell me.

Plus om sick to death of going round in circles and in sll this tim, concerned that the cancer will get worse without treatment anytime soon.

  • Hi DME54,

    Thank you for getting in touch with Macmillan Cancer Support. My name is Anne, and I am one of the Cancer Information Nurses on the Support Line. I see you have already joined our bladder cancer forum. I hope you have found it supportive so far.

    I understand you have had some difficulty in obtaining information about your cancer diagnosis and treatment plan. Your Consultant and CNS are best placed to advise you on this. You mentioned your CNS was unable to answer your question regarding BCG treatment. You may wish to arrange an appointment with your Consultant as it is important you have the opportunity to ask these questions. It may be worthwhile jotting down all your questions ahead of your appointment. Action Bladder Cancer UK have examples of questions you may wish to consider asking. If you continue to struggle to get the information you require, you may wish to contact PALS at your local Hospital.

    Treatment options and follow-up monitoring depend on various factors, such as grade and stage. The NICE guidelines have information on management of bladder cancer and what level of monitoring is recommended.

    It sounds like a worrying and frustrating time for you. If you feel it may help to speak to one of my colleagues on the Support Line, please do get in touch for more support.

     Take care for now,

     Anne - Cancer Information Nurse Specialist

     You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email.

    Ref/**  SMJ

  • Hello Anne,

    Thank you for your reply. I am very frustrated and stressed out. Feel im fighting a battle with no weapon and very little help from the urology team. 

    I asked my CNS why there was no appts set up for bcg bit she didnt know and there was no offer to try snd find out. Ive since heard theres a waiting list, but at no time has this been mentioned.

    Anyway Many thanks

  • Hi  

    Thanks for getting in touch with our online community. My name’s Louise and I’m one of the Cancer Information Nurse Specialists here. 

     

    It sounds like you have been having a difficult time trying to find out information about your diagnosis and treatment plan. It’s important to have the information you need so you can make the right decisions about your care. It must be very frustrating and stressful. 

     

    I can see my colleague, Anne, mentioned arranging to speak with the consultant. If you haven’t managed to get the information you need from your CNS, you can arrange to speak with your urologist. You can contact the consultant via the medical secretaries and ask them to pass a message on. If you don’t have the medical secretary’s number, you can get in touch with them through the main hospital number.  

    If you are still struggling to speak with your hospital team, you can contact the Patient Advice and Liaison Service (PALS) who can find out information from your healthcare team on your behalf as well as feedback experiences.    

    It’s normal to feel stressed out and frustrated when you aren’t getting the help you need and are reaching out for, on top of having a cancer diagnosis which brings its own stresses. 

    People with cancer can feel a range of emotions and there are different ways to get the support you need. I can see you have joined our bladder cancer forum. These forums can be invaluable places to share experiences with others in a similar situation. You can also find different types of support in your area 

     

    You can also call us. One of our nurses would be happy to talk things through. 

    Kind regards  

     

    Louise, Cancer Information Nurse Specialist  

    You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email.  

    Our Ref:  KH