Trying for the best outcome..............

Maria,

Is there any way to back up to your diagnosing physician? Surely, surely, surely he can give you a competent referral

This is crazy.

Your Bud,
Rosemary

Dear Maria,

First of all, my sympathy for the way you have been treated, I'm so sorry!

I don't know for sure but suspect that an oncologist would not prefer to treat someone with bladder cancer who doesn't have a surgeon on board. Unless it is a uro-oncologist. I hope for your sake that this doctor is just that.

There are oncologists who do take over the main treatment plans of blc patients but usually - and ideally- they are part of a team. Especially if the blc is invasive.

It might turn out that the oncologist would agree to treat with chemo, but is this the best thing to do...? that's a good question. Maybe...it has been becoming more and more common to get pre-op chemo for invasive blc (actually it is more commonly published in guidelines while in actual practice it's way less common, I just read an article complaining about this).

You have been waiting for a treatment plan for how long now? 4 months? I can imagine it would be tempting to agree to chemo just to get something going. In any case please let us know what he says ASAP.

I also wondered if you can travel, or even go back to the UK for treatment (though that will also have a wait list, I guess...unless you can get an urgent referral).

Perhaps this new doctor can get you connected, I'm hoping so.

I have enormous respect for the way you are handling all these disappointments and mis-treatment. Good for you, save your energy for yourself. Anger is justified, but the negativity might scare off potential doctors at this point. So...save it for later and then write a letter or two!
Wendy
Wendy

Maria,

Is it possible to re-locate temporarily? There are so many places that can help, just not in Florida...We also lived in Florida..My husband was in North Carolina for a new job when he was diagnosed. We check facilities in Florida, and were very discouraged. We moved the whole family to North Carolina. Yes a bit drastic...but you could stay at a Ronald McDonald type facility while getting treatment out of state. Just a thought.

Karen

I don’t know what to do for the best outcome for me.
I am trying to find another surgeon and this process has been delayed due to the holidays.

I have an Oncology appointment next week.
The first Caner center I called advised they would not accept my international insurance, despite the fact they ‘welcome international clients’

My appointment is Thursday and if this new hospital rejects my insurance on Wednesday I will have to cancel the appointment and start another search.
This issue concerns me as I am seeing the same doctor but at a different location.

I have done my own research regarding chemo as it seems I am the director of my own health needs with no assistance from the ‘health system’ Trying to get some form of help is just getting harder and harder every day.

What if I did start the chemo and the next surgeon I seen preferred to do chemo after RC?

I wondered if the Oncologist would want to start any treatment because I do not have a surgeon.

Any advice? I feel I am unable to make an objective decision as I am extremely stressed and I really can’t allow any further treatment delays.

It just seems no matter which way I turn I am faced with obstacles.
I feel that I am in an impossible situation and am facing the biggest challenges of my life!

I am determined no matter what to get through this with a positive outcome.