In Feb 2009, a friend of mine's Mom was dx'd with invasive bladder cancer. What happened in her case is most relevent to all especially those newly dx'd. I am sharing it in hopes all will be better equipped to avoid a similar tradgedy. Again I remind, most major facility drs are great, however this can and has happened.
She was dx'd at 79 by a local uro in Feb 2009 having had gross hematuria since starting on blood thinners just the month before. She did alert her drs to the hematuria, however they felt it was insignificant. Only when she needed blood transfusions did they persue locating the source of the blood loss. On the 12th she had a TURB locally which came back "T2, likely T3, definate lymph invasion with squamous cells present". The path report noted 3 areas of the bladder were heavily involved and that the margins were not clean. At this point, they sought me out as they knew I have personally dealt with invasive bladder cancer.
I armed them with literature, answered questions and was adamant they needed a major center with top notch drs. I recommended a few, one which they followed up with immeadiately. They understood they were facing a life threatening cancer and trusted a highly recommend urologist to guide them through it. They asked the right questions, they followed thruogh with his surgical recommendations, and through literature they were realistic and knowledgable about likely outcomes. Although the surgeon did great surgery, he dropped the ball in communication.
She had RC and illeal conduit done March 12th. The surgery seemed to go well and she felt incredibly recovered at just 1 week out. They asked for the final path report numerous times, each time being put off. At her one month check up, they demanded to know details. The dr said she was "stage 4 kind of" when they asked him to be specific. He told them he was reffering them to an oncologist.
Within a week she is having major bone pain in her hip, leg and sternum. She is weak and losing weight having lost her appatite. I went with them to the oncology appointment as they wanted help in getting the answers to their questions. That day is one I will never forget.
They finally got the final pathology report and the abdominal MRI report from before the RC. The MRI report was a shocker - it identified liver involvement and clearly noted the cancer had gone through the bladder wall into another organ, and also addressed lymph involvement. This was the only imaging completed prior to RC and it was OBVIOUSLY a stage 4. Some drs would refuse RC and some may have done the RC palliatively as one tumor had cut off a kidney causing hydronephrosis. But I would have thought ALL drs would have informed the patient of their status and choices prior to surgery. This did NOT happen.
The final path report came back PT4,N2,MX. 6 of 32 nodes positive and they did not get the margins on one ureter. They had this report completed the day before the patient left the hospital from the RC, but no one shared it with the patient. They asked for it in emails and it did not come. It was finally emailed to them last week the day before the oncology appointment.
At the oncology appointment, labs were drawn and the patient was obviously ill and in great pain. She was admitted with incredibly high calcium and alk phosphatase levels. She had infection, jaundice and bruising. They FINALLY did a bone scan...cancer had spread to her leg, hip, sternum and a rib. (As there was no bone scan done prior to the RC they had no idea if it had been so prior to the RC.) This dr finally shared that the liver involvement had been known all along. Other imaging revealed the cancer had spread to her lungs. She passed away 3 days later.
I have shared this in hopes others can avoid being ill informed even with a top notch dr.
As a survivor and a patient, I pray I NEVER have a Dr who feels he has no ethical obligation to inform me of his professional opinion. When I see a dr, go thru tests and he has diagnosed me....he damn well better NOT contemplate IF he has to tell me the findings. He does not have the luxury to pick and choose if he will be truthful - all patients deserve integrity.
All he had to do was tell them it was stage 4, to live well and know there is not yet a cure. If he is uncomfy saying that to an obvious stage 4 - he better hire someone who is able to or get out. There is NO excuse for his lack of communication.
Had this woman been told the truth, she likely would have spent her last chunk of time getting her affairs in order and saying her good byes. The family is sure the dr did a great surgery for their Mom, but they cannot understand how he could leave them so completely in the dark from the start when they had been so forward and realistic. That he couldn't cure her was not as distressing as the way he didn't communicate honestly with them.
Be very firm in asking questions and getting answers. If you are not getting answers and copies of reports, consider another dr seriously. Knowledge is power to make choices in how to live and fight. No dr should treat a patient like a mushroom unless they have asked to be treated that way.
God Bless, Holly
I cannot believe what this lady and her family have been through its barely human.I know sometimes our doctors think they know best.Aarghhh why do I always try and give people a get out ?This is truely awful why did they put this poor lady through such dreadful surgery when they knew the prognosis.
I feel so much respect for my doctors and their honesty and feel so sorry this has happened and feel sad that you recommended people to the family you trusted and respected and they let you down.
Take care and send the ladies family my love and best wishes too
Hi Holly, The first uro I saw told me I had a polyp and he needed to take it out. He never told me that there was a very good chance that it was cancer. when he did the turb he took out five tumors stage ta grade two. He told me I had cancer when I was in the process of waking up. He also gave me mytominicin whith out my consent or knowledge.
When I ask him why, when he first scoped me he didn,t tell me that I more than likely had bladder cancer, he said people tend to get upset to hear they might have cancer and if the turb is neg. they get upset that he worried them. I said "as opposed to how upset I am upon waking up from the turb and hearing that I do !"
I told him he took away my choices, I would have gone straight to John Hopkins if I even thought I had cancer !! He said that he took out five tumors and some of the wall to make sure that he got it all. The path report said he didn't get any of the wall of the bladder. I also told him someday he is going to have a lawsuit on his hands if he keeps giving out chemo without a patients knowledge. Long story short I went straight to John Hopkins and now see Dr. Schoengberg.
What a shame this family lost that time with their Mom. The Drs. didn't tell my brother or his wife that time was short for them also. Rocky
It is difficult enough to know our lives are forever changed by a bladder cancer dx, let alone have to suddenly know how to get quality medical care to survive it. Personally I have learned a few things from bad experiences and I try to be wiser. Many here have shared their "learning" experiences which have also helped me to see the writing on the wall at times. I am grateful for the lessons and my hope is that we can readily recognize and avoid similar pitfalls in our care. Be assertive and and trust your gut feelings in being your own advocate - it will serve you well.
God Bless, Holly