Hello I am new here...

PS Please don't think I completely forgot about the margins issue.... I had a scope on 12/14 they saw nothing. On 1/29 they saw 2.5 cm already in the muscularis propria. Naturally I feel the 1st Dr  missed it...But what if he didn't? That means it grew like that in 46 days. The 1st TUR was on 1/31 and he resected deeply. It was resected again on 2/14 and he did frozen sections to get good margins. He has no doubt the cancer will be found on the next TUR as well ( which he will do just prior to the removal). It has been explained to me that this is a very aggressive cancer and leaving one cell behind is bad. Either I have to believe all 3 Drs are inept or it has indeed grown fast and aggressively. If I bet they are all inept, find yet another surgeon in yet another reputable hospital and take the same route to neobladder I will only have given it more time to keep growing. What other action should I take than what is already planned?  Also the urine test showed only few bacteria on quickie test but cultered nothing. I am told the pain and the blood in my urine is from the deep resections...and I believe it. I gave birth without even taking a tylenol....now I shake in pain trying to pee. My bladder holds just over 100 ml after the TURs.  I believe I have a very competent surgeon lined up in an excellant facilty. And I am in too much pain to do anything else. If it isn't infection, and if deep TURs don't hurt like this, then it must be the cancer itself hurting me?

Hello  ;D

  Had my appt today with the surgeon - what a freaking relief...
1. There was still cancer at the tumor site, but the rest of the biopsies were good. He says he will resect it again to clean margins before removing the bladder to get all the cancer cells. And the neo bladder is a go ....He feels 95% sure of neo, 4% possiblity indiana pouch, and only 1% chance the ostomy. I go preop tests on Monday and then Surgery set for March 13th - a Tues NOT Friday the 13th.

2. He gave me vicodin as the peridium isn't helping the pain much. I literally shake from the pain trying to pee, the rest of the time is stabbing pains -likely the re resection.

3. We talked about the nurses/communication problems....He gave me his direct line and is dealing with them.He was not given messages etc and I am sure he was not happy to learn what I have been thru with them. I believe we have reached and understanding on expectations of timeliness and sensitivity.

4. The spot on my right lung is very small - we are proceeding with the bladder removal and diversion and lymphnodes coming out. The other bone issue in my left shoulder isn't going to alter this either.

 I think I will sleep better tonight. Somehow I have some peace of mind that this shall be effectively handled. Hubby is very sure of this surgeon as well. Saying prayers for all of us - GodBless

Joe that is the Thoracic cavity......anything above the diaphram is in the thoracic cavity including the lungs, bronchi, heart, pericardium, inferior, superior vena cava....and so on. Why is it on MZ's site? Pat

Although thoratic appears in the link addy that is an actual image of a chest scan what I call the windpipe and the lungs on either side and also my main concern here was that the tumor stayed contained in my bladder and did not spread to the lymphnodes or anyother oragans that they could see a real blessing.

Hi Holly
I totally agree with Patricia and Rosemary.
Your diagnosis was almost exactley the same as my initial one T2B high grade three.I had biopsies taken at the initial exam and it was apparent there was no way my bladder could stay.My urologist didnt mess about any longer just the CT scans and pre op tests then got me in ASAP.It makes no sense to do further surgery if you are having a cystectomy if he is going to try and preserve your bladder and use chemotherapy then maybe but I would be asking loads of questions at your appointment.
How they are dealing with you sounds messy and unprofessional to say the very least.I would be writing down all the procedures I had undergone during this diagnosis phase and asking for clarification of results and asking about the rational of any further testing.I am aware that every persons cancer diagnosis and treatment schedule is different but this is your body and your health .You really need to take back ownership and make sure you are happy putting your future wellbeing in the hands of this clinician and his team.For me that would be the only way of stopping myself going mad.Its no wonder you are nervous and getting in a state he has done nothing to give you any confidence or reassurance.
Like the others said make sure you are on antibiotics aswell as pain meds theres no point in treating the symptoms without sorting out the cause and be your own champion.
Take care and keep in touch
Love Claire x

Holly....does he have you also on an antibiotic for the infection? Please say yes! OK as you know i'm pretty straight out with this stuff......excuse me...why didn't he get the margins in the first place? This is exactly why i put myself on a plane to Memorial Sloan to one of the top bladder surgeons in the country....he got the margins the local uro missed......no pain.....no catheter for l0 friggen days...only l5 minutes...no infection....and cancer free until my cystectomy......(i had high grade so we knew it would be back).......What about the bone scan and x-rays of the shoulder? How many neo-bladders has he done on WOMEN? ASK! Holly you're a smart girl.......you have options.......stop with the basket case and get the BEST doctor.........this guy sounds like an idiot to me....3 TURBS...leaves you with an infection and doesn't return your phone calls and leaves you in pain...didn't get the margins.......how many signs do you need?
Pat