3 months 4 weeks ago - 3 months 4 weeks ago#58987by Alan
Don't beat yourself up too much on this issue. 2nd opinions are often good to simply confirm a diagnosis. As you are probably aware micro papillary is an unusual and very serious type of bladder cancer. Moffitt has a great reputation and should be in good hands. Feel free to post anytime the good, bad, ugly or simply a rant. We all learn from every post.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
After over a year of lurking on this forum, today I finally signed up to ask a question about neo-bladder.
In hind sight I should have signed up back in April about 2nd opinions.
My husband had symptons in September 2018, starting with blood in urine.
The next month the urologist looked at his "angry" bladder and November did a biopsy.
The lab said agressive cancer cells, but they could not determine if in muscle as biopsy not deep enough.
Early December 2018, 2nd biopsy showed no cells in muscle, so stage 1.
Started the week before Christmas with BCG treatments x 6.
April biopsy showed BCG had not really worked, still agressive cells, urolgist was to find out what was next step.
This is when we should have got a 2nd opinion, and gone to Moffitt cancer center in Tampa or MD Anderson in Houston. My husband did not want to upset the doctor and relied on his diagnosis.
He came back with 6 more weeks of BCG, which by then was in short supply.
It took til July before that was started, and mid September for the next biopsy.
That's when we got the news. Muscle invasive, and heard the words micro-papillary.
Same day records transferred to Moffitt and we were booking appointment with surgeon for end Sept.
He said no hope now of saving bladder, and before surgery had to do chemo.
Saw the Oncologist, 3 days later who mentioned clinical trial about to begin, waiting on paperwork.
Well, that took 4 weeks to get into their system, signed up for clinical trial for better care on Friday 1st Nov.
Monday 4th was told did not qualify now as scan showed cells invading left ureter to kidney.
Started immediately on 4 cycles chemo of 2 weeks, with 1 week off.
1st treatment, cisplatin/gemzar and 2nd treatment gemzar only.
After 1st treatment did not feel good, did 2nd treatment felt lousy, and sodium low.
Rushed to ER next day, scan showed pancreatitis.
Managed to get over that ready for next round of chemo.
He handled the chemo pretty well, no sickness, but magnesium got very low.
Twice he had 1 hour infusions, and last treatment 23rd Jan was an extra 2 hour magnesium IV.
Now it's time to get ready for surgery, and build up his strength and walking.
My point in all this is to say, please don't be afraid to ask your doctor about getting a 2nd opinion.
Even now my husband keeps asking me do I think his urologist is upset about it.
Doctors hear it all the time.