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NEWLY DIAGNOSED
Take a big breath, if you are like most people that are newly diagnosed panic and fear are at least part of what you are experiencing. This website was built for and by bladder cancer survivors and the people that care about them. No matter what path your bladder cancer journey takes, know that there are others here that will share their journey with you.
And to add even more complexity to this emotional storm is the fact that you have to learn enough about your diagnosis to make informed decisions. While knowledge is power, it needs to be the right information that fits your situation and is reliable. No matter what your approach to learning, while using the internet please keep in mind the following.
A diagnosis of bladder cancer can mean many things and is as individual as you are.
While called one disease it has many subcategories such as invasive, non invasive, stage, grade and types.
Doing blanket research before you understand your personal diagnosis may not only leave you with information overload but could cause unneeded worry and stress.
Start with the basics and once you have your exact diagnosis, which is stage and grade, use that to give direction to your research.Ensure you get a get a copy of your pathology report which will give you the information required to understand your stage, grade, and type of bladder cancer.
Post your questions on this forum, many here will share their experiences, or you can call Bladder Cancer Canada and they will have you speak to a survivor who had a similar diagnosis to you or your loved one.
All the best,
JackJack has made awsome points. I would like to add, getting a book/journal to put doctors names, phone numbers , appointments , medications and questions that will come up. Don’t be afraid to ask for help or tell family/friends how they may help
Have someone at all appointments as some info can be overwhelming. Having someone taking notes helps to keep info clear, and can be looked at later. Also find ways to CELEBRATE LIFE, going for a coffee or a meal before or after appointments was a huge benefit for my spirit, and a chance to absorb what was going on.Great addition Millize to Jack’s points. After each of Malcolm’s appointments (surgeon, oncologist, chemo), we go to a favourite restaurant to debrief and celebrate. At his 6 month appt (we are now approaching year 4), we booked a weekend away. We were both scared of what might be…if it was good news, we would be away to celebrate; if it was bad news, we would be away to create more special memories.
I continue to keep notes of each appointment and I request copies of all reports: xrays, CTscans, ultrasounds, surgical notes, pathology reports, lab work. I compare each report with previous reports.
The GP noted that that Malcolm’s B12 was slightly lower (B12 is a building block for many systems) and he now is on a regime of self injecting B12. The junction of the small intestine where B12 is absorbed can be affected by the surgery to create a new diversion.
Ieva
Thanks for this Ieva. Malcolm is so lucky to have you in his corner. The info posted here is good guidance for those new to this journey. It is one of the most frequent questions that comes up with new people at our support group meetings – What do I do and how to keep track of it all and what do I ask the doctor? Keep the ideas coming everyone.
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