topic Re: Bladder cancer in I've just been diagnosed

Bladder cancer

Tracey2 — Tue, 22 Oct 2019 06:08:58 GMT

I have just been diagnosed with aggressive bladder cancer I see the oncologists tomorrow and am scared it has taken 6 months to get this far I'm going some clinical trial but won't know anything till I get there does an6know anything about it

Re: Bladder cancer

Katekat — Wed, 06 Nov 2019 01:07:48 GMT

Hi @Tracey2,

Just wanted to welcome you to the Community and check in with you.

Have you had any further news about your cancer staging and treatment plan?

-Kate

Cancer Council Online Community Manager

Re: Bladder cancer

Tracey2 — Wed, 06 Nov 2019 20:25:53 GMT

I've had tests and now waiting to see if I get on the trial

Re: Bladder cancer

AprilMay — Thu, 07 Nov 2019 14:08:01 GMT

Hi Tracey,

I hope you can and it helps. It’s scary and frustrating having to “wait and see”

Re: Bladder cancer

Anihcup — Thu, 07 Nov 2019 17:17:30 GMT

I have an appointment with the oncologist tomorrow, too. I don’t know whether I’ll start with chemo, radio or wait a bit longer, I just want to know, as well as you. Patience my friend, God is good and He will keep an eye on us.

Re: Bladder cancer

Jubbly — Sun, 10 Nov 2019 20:47:24 GMT

Hey Tracey2,

the waiting and unknown is terrilbe isn't it? I'm not coping with my situation at the moment, but I wish you peace and love

Re: Bladder cancer

Tracey2 — Mon, 11 Nov 2019 00:38:20 GMT

Chemo next week tests should be back any day now to give the go ahead

Re: Bladder cancer

Anihcup — Mon, 11 Nov 2019 02:33:12 GMT

Tracey,

It’s true it is hard to wait. Having faith will help you. I haven’t had to wait that much long since I found that I have pancreatic cancer. Still waiting. But the oncologist wants to start my chemo this coming week. I keep praying, which is giving me patience, and being calm, hesitating is not good, you will be in my prayers, too.
God is good. And going through what we are going through, we need Him to be taking care of us.

God bless you! Don’t lose hope.

❤️🙏🙏❤️

Re: Bladder cancer

Reece — Fri, 20 Dec 2019 13:15:39 GMT

Tracey, I’ve just been diagnosed with bladder cancer. May I ask how you’re doing this month?

Re: Bladder cancer

Tracey2 — Sun, 22 Dec 2019 09:07:10 GMT

I'm doing alright still in shock done 2 rounds of chemo and that knocks me around pretty bad

Re: Bladder cancer

Reece — Mon, 23 Dec 2019 02:31:22 GMT

I can imagine being in shock and denial and alllllll of the emotions will be a roller coaster... just when you think you’re done and another loop hits you!

Do you have much support around you? Any recommendations? And suggestions when dealing with friends/family?

Re: Bladder cancer

Jubbly — Mon, 23 Dec 2019 06:50:23 GMT

Not much support, family are impatient for bona fide diagnosis and treatment, impatient with me and that I can't answer their questions. I have found 2 Facebook groups that are focused on my alleged tumour type and they are terrific! The members know more about the condition than my gp and really understand what I'm going through.
Dealing with family and friends is almost harder than coping with the disease. I made the mistake of telling too soon, I would hold it closer and not tell thr extended family as quickly

Re: Bladder cancer

Kiwibaglady — Wed, 25 Mar 2020 14:57:02 GMT

Hi Tracey -I do hope you have had some answers and also treatment and you at least know which path you are on. I think the worst part of waiting is the "in limbo" effect and not being able to make any plans for your immediate future. I am a Kiwi in Sweden and was diagnosed with bladder cancer T1G3 on my granddaughters 5th birthday - 12 September 2019 (will never forget that date!!). I have had 3 TURBT where they have found tumours (7in total, I think) that have regrown each time. Was booked to have a radical cystectomy on 19th March but 3 hours before I was due to be admitted, I received a phone call to say all operations have been postponed for the forseeable future due to Covid19, lack of ICU places, too many staff being off sick, lack of medical supplies and also the fear of much needed staff possibly being infected by travelling here. I should have had my operation around the end of January but due to Stockholm hospital's total lack of communication with my hospital nothing happened. They then decided they wanted new CT scans (I had had my last one in January) and an MRI. Again they didn't communicate with my local surgeon, their "democratic decision" after a conference call between their own staff and things were further delayed which has now put me in my current situation. The robot equipment and surgeons to operate the equipment were supposed to come from a University Hospital in Stockholm but it is one of the worst hit areas of Sweden with Covid19. Instead they instructed that I should begin BCG immunotherapy as soon as possible as an interim measure. Had my first BCG on Monday 23rd and have 5 to go, but still have no idea when I can have my surgery. The unfortunate thing with BCG is it only is effective on cancer within the bladder and I have a tumour in the urethra as well, which it won't touch. I really do understand what you meant about the waiting torture. I swear at my cancer every day, usually when I am out on my daily walk! Would love any feedback from anybody re any side-effects to look out for with BCG and any positive suggestions for helping me stay positive after this 7 month wait. Stay as healthy as you can with this wretched virus that has turned the world on its head!

Re: Bladder cancer

Budgie — Wed, 25 Mar 2020 23:08:25 GMT

Hi Kiwibaglady,
I'm so sorry your surgery has been put on hold. I really hate it when WE have to suffer due to some 'God's' decision to do something differently.
I wish you well with your coming treatment.

Budgie