Was diagnosed with bladder cancer couple of weeks ago and going for TURBT next week. It’s a T3 N1 tumour. How soon after do you know what type of cancer it is and treatment plan? Wondering how quick things move along, don’t want it spreading, thinking about removal of bladder surgery as it probably will happen with this stage from what I’ve read. Feel in limbo at the moment as I’m still under urology and not oncology so no one to talk to, all info appreciated TIA
Hi Blondy and a very warm welcome to the Macmillan Community but sorry to hear about your diagnoses.
Navigating the cancer journey can be such a stressful and challenging time but getting support from people who have walked the ‘exact same' cancer type journey can help a lot. (I have a completely different cancer).
As you have found out they Community is divided into dedicated Cancer Specific Support Groups (Discussion Rooms) and I can see that you have already put up a post in our dedicated Bladder Cancer support group. This is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
To connect in more efficiently with the group click on this link> Bladder cancer then once the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using) as this will allow you to get email notifications when there is any activity in the group.
The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.
We also have our Ask an Expert section but do allow a few working days for a reply.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and give support to all the family.
Do get back to me if you need further help navigating the community.
Hi Blondy, afraid I've no info for you as am only a month into this myself and different cancer, but very familiar with that 'in limbo' feeling already and can empathise with you on that. I heard only today about results from various meetings between doctors and specialist nurses etc so there will be the same going on behind the scenes for you. It's just so frustrating not knowing isn't it? I've found a lot of comfort, reassurance and information here from the community already, so you're in the right place. Hugs Maggie
Thanks for replying Maggie, it’s enough to drive you mad all this waiting. It’s just nice to chat with someone who feels as shit scared as yourself. You try to be brave for your family, but it’s the early hours of the morning when your mind won’t switch off I’m really struggling with, hugs back hun
Hi Blondy and welcome i also have bladder cancer and have discussed having a TURBT with oncologist, but as it is a secondary cancer for me it is on hold until my first round of treatment is over, i understand the procedure is really safe and important in understanding your cancer and how to treat it, you should get results in weeks which may seem long i know and it is all new and worrying but a lot goes on behind the scenes with your cancer team as they ready your treatment after going through all your test results, As my primary cancer is prostate i move between oncology and urology it is not unusual. I know the waiting is difficult but it does not mean nothing is happening, good luck on your journey and take care.
I'm sorry to hear about your recent diagnosis. Facing bladder cancer can indeed be overwhelming. The speed at which things progress can vary, and it's natural to have concerns about its spread.
While you're still under urology, it might be worth considering a holistic approach like Functional Medicine to complement your treatment plan. It takes a comprehensive approach to health, considering various factors that contribute to your overall well-being.
As you move forward with your diagnosis and treatment, having a supportive healthcare team is essential. You can discuss your concerns and questions with them, and they can guide you through the process.
Thanks for replying, sorry to hear your having a rough time at the moment. I’m one of those people that likes a plan and gets on with it. This diagnosis has shook my world. It’s something no one wants to hear. I feel a bit less stressed now I’ve been talking to a few on this group. You can’t understand till you’ve been through it, your mind is a mess especially at 2am in the morning. I wish you well
Hi again Blondy, i am actually doing good now, "emotionally" thank you. like you and almost everyone else i went through an emotional time initially especially as my diagnosis was poor, but once treatment started things seemed better. you should have a clinical nurse specialist at urology who is the lead nurse regarding your care .you should be able to call her during the day, i talk to mine regularly. The things you think about at 2am, i am trying to forget. if you click on my name you can read my story, maybe you should think about one, it would help others with a similar diagnosis to get in touch, take care.