So,who gave you the news,,,and HOW!! WHERE!!!

I decided to write this discussion because Cheyenne has brought back some times where I was
in his shoes...so this discussion is his fault!!!
In the beginning,,,our internist saw signs of the dreaded b/c,,,sent us to a local urologist...after urine tests,,,a turbt,,,the turbt was on a friday,,,I was given the news after the procedure,on the phone,,at the hospital,,,my husband came home Saturday,,,I knew the news,he didn't........I kept calling,trying to reach the urologist,,what.I have to tell him...NOT HAPPENING....I called Monday,,,when can we come in for a ,heres the news,,,appt....answer,,,,he would call us on speaker phone,its not protocol to have a formal meeting.....THAT WAS ENOUGH FOR ME.... so we sat in our backyard,cell phone in hand and listened,,I kept the secret all weekend,,,it was horrible!!! How could I tell him his bladder had to come out, and he was stage 3.....
Well,,,,I then had the drive to make sure things went differently from then on...how insulting....like its just another day.....
I couldn't get him to the Cleveland Clinic fast enough.........Don't let the medical world treat you unfairly!!!!
To all of us!!!
HERE HERE!!!
Ginger

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53 replies. Join the discussion

My local uro told me on the phone about 4 or 5 days after the turb. He said it was the most common kind of bladder cancer(no name) and that the pathologist thought it was a grade 2, but he disagreed and thought it was a grade 1(he thought it looked almost like normal bladder cells and it was very small). He said he wanted to rescope me in about 3 weeks. I answered that I wanted to be referred to MDA and went to his office THAT day to sign the medical release forms. I contacted MDA on its self refer line and we contacted Dan's BMT Doc and he contacted Doc Dinney who said he would see me at his next clinic day. The local uro still had not seen to sending the slides when I saw Dinney. It didn't matter though because he restaged me the next day. When BCG was the recommended treatment, I could have gotten my treatment closer to home with the local uro. I travel to MDA to get them.

Lynda

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My Uro advised me while I was still in the hospital, 2 days after my Turbt of the path results.
He gave me the report, and told me I would see him in his office the following week to set up treatments.
He kept saying it was actually good news.
On the path report he highlighted the results, and wrote at the bottom of the report, the webcafe website.
Told me to read up on the grades and stages, and also read up on BCG. He said he would answer all my questions at the next appointment. He wasn't gone from my room in 2 min. and me, my IV pole, and bag headed for the patient Internet room.
I spent 2 hours or so reading and reading.
Jack

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My diagnosis was in late Nov '03. Urologist was doing a cysto to discover why antibiotics were ineffective for relieving (UTI). He said, I'm looking at cancer here. Blew me away. never heard of bladder cancer.
Since I had to leave the next day to tend to ill parents in MO, I felt I couldn't tell my husband what the Dr had just told me. So........For the next week, I mulled the idea over (surely not, still just an infection, those thoughts, my mind in turmoil) until I could return home and have a TURBT to know what the stage was and the treatment. My searches on the internet then were futile. Nothing for us in 2003 like we have now. BCAN came about in 2005. Bladder Cancer WebCafe, I didn't know about until much later.
I was muscle invasive and surgery was done within a month after positive diagnosis. Indiana Pouch. You all know the rest. Cancer free now for 5 years.
Karego

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I think this discussion lets all of us and the newbies know how it happend for most of us...and what is the standard procedure,,,maybe some insight for some,,,
to make sure things go how it should,,,
Thanks for the feed back!!!!

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This discussion comes as somewhat of a coincidence. I just received my records yesterday when I went in for #11 BCG. ( a tough one I might add) Tried to go into work today but had to leave after a couple hours be cause as Pat B likes to day ...I was pissing razors every 5 minutes.

The news was given to me by my uro five days after the TURB when I went in to have the catheter removed. My wife was supposed to join me for the "reveal" but got stuck in traffic so I got the word first hand. I didn't have much of reaction because I was just relieved to have the catheter out, but I do remember him saying it was good news that it was non invasive but not so good but relatively common that it ws G2-3.

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Shiz,
Good point,,we had a nurse lady,sort of,, after Genes turbt as his cath was in 12 days,,,she was not what I expected,,,the urologists office said I could just take the cath out,,,,over my dead body....are you kidding me,,,so we went in,and a nurse removed it in a sterile envoirnment,,,what the hey!!...man that first turbt was a experience for my husband,this nurse lady came in heap of junk,,,she had to be 80,,,forgot her gloves,,,it was horrible,,,not saying you need a new car,or be 29 and perky,,,,glad yours went well...ginger

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Similar to Karego, in Feb 2008, I had an "in depth" cystoscopy because antibiotics were not helping the UTI..unlike Karego. i was diagnosed of everything under the sun:
IC (not); psych problem(well that's beside the point!) ; something with my spleen (not) ; anyway, uro called me over the phone he said: you have bladder cancer. it is a very very rare kind. the ONLY treatment is to remove your bladder. You better go see another specialist.... 4 turbs later.... countless scopes, a few scrapings... well, they can barely find anyone who has squamous cell carcinoma of the bladder.... much less decide how to treat it....
It helps me soooo much to read your stories, maybe someone will get something out of hearing mine...
in any case, thank you all for being there.

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Thanks for starting this discussion, Ginger. It is a great one. So good in fact, I am wondering if BCAN could have a page, site, not sure what to call it, where members could write such stories like "The Day I Got the News", a great one but there are many more that would be a permanent part of the website and never put on the back page. I have read the personal stories on BCAN but I am suggesting something on the Inpire page. Perhaps in the box under Start a Discussion or Journal could be read members personal stories or something like that and then have different topics. Just a suggestion. It would be helpful to Newbies.

Enjoyed all your stories. My doctor called me with the news and told me that I had prostate cancer. That is not Cheyenne typing either. That is what he said and then I said I don't think so. He then changed to bladder cancer but it shook me up. I stayed with him through 12 BCG treatments and as most of you know, eventually ended up at Sloan Kettering for my RC.
Nancy

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Ginger,

Sounds like the same nurse I had for my most recent scope. I've been hearing about some folks self cathing and decathing and am wondering how the heck they can do that. Sure, if it's in your navel or a stoma ok, but through the whatzis... nuh uh.

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I was told face to face in the Urologists office one week after the TURB. He told me it was a hi grade and T2 ... explaining that the cancer had infiltrated the muscular wall of the bladder. He said that he would send the report to my PCP who would refer me to another specialist for what lay ahead and he did indicate that it would almost certainly surgery with some chemo and/or radiation. That was Tuesday. It is now Friday and my PCP and his nurse already have me registered at one of the large university medical centers. They will make my appointment for me as they admit that Dr. to Dr. will move things along more quickly. I am pleased so far and, although I am not looking forward to what lies ahead I am confident that all will be well in the end.

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Sincerely,
LOVE THE DOG,,,
It seems when my husband was in recovery after his first turbt at the local hospital, he was a bit groggy,,didn't hear a word the doctor said,duhh!!! which surprised me when I saw him in his room,surprise,he knew nothing,,,that day the nurse came I thought he was going to have to help start her car,,,leg bag and all.of course of the time what did I know...well 20 months later,I know alot....
It sounds like your going down the right path,we were to after getting to the Cleveland Clinic,,,even the tests were different,the scans were more involved,,and results that day in the surgeons office,,,what a miracle....
Sincerely,keep us posted,,we need to keep up with your progress....ginger

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Yea Shiz,,,
I wasn't about to take it out,,,,she tried to flush it and dropped the solution,so we had to clean it all up before going on...she kept calling me honey,,,,
I know what you mean about the razors,after his first turbt he had all kinds of stuff coming out,,,,scabs,,,this and that,,poor fellow,,,compassion was growing,,,by leaps and bounds.........ginger

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Sincerely,

How did you sneak in here by us? I'm glad you found this site you now have the BCAN Army with you. Keep us posted on your progress. You'll have our support every step of the way.

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Nancy,
Good idea,,,maybe a category,like the Invasive,caregiver,,,,called,like you said,The day I got the news!,its so tramatic isn't it,,,just blows your life right out of the water....young,old,,,whatever your age,,its a day to remember for sure......ginger

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I had gone to emerg with blood in my urine. Waited 12 hours for the emerg doc to say, yup, blood in your urine. ( heck I knew that!) He couldn't find a source so asked me to come back to emerg one week later and see him ( I didn't have a family doc at the time). I went back a week later but didn't wait. It was like I had an appt. with him.
Although no blood was visible, it was still there microscopically.
He called urology which said they would call me for an appt.
In a week I was at the clinic in the hospital for a cystoscopy. The uro's secretary said it was like a pap test. NOT!
When Dr. A finished I asked him if he found any treasures in there. Thats me, always trying to make tense situations lighter.
He asked me how many cigarettes I smoke? Proudly I said I had quit about 5 years previous.
Then he asked " how many DID you smoke?"
He said I have papillary cancerous tumours and would have to see him every 3 months until I got a clean cysto and then it would graduate to every 6 months, every year and so on. He was very non-chalant and wasn't even looking me in the eye. He had his back to me. The nurse in the room patted my shoulder and said it would be alright. I signed a form for a TURB and left.
My sister-in-law had taken me as I was going to drive myself. My husband was working. We really had no idea that I would be dx with bladder cancer.
When I told my SIL that he said I have cancer caused by smoking, she didn't say much of anything. She is not a warm person but a kind girl. She drove me home. I was in shock I think.
I called my husband to come home. I hated to do that as he is an Air Traffic Controller and I didn't want to put any stress on him.
When I told him I cried and he gave me a shot of Grand Marnier ( the heal all in my books. LOL). We discussed that we could do anything as long as we had each other.

I am the only daughter with 2 brothers. I was always Daddy's girl and did I need him then. Unfortunately he had passed away at 67 years old, 2 years earlier, after a lengthy illness.
My mother was going to Portugal for 4 months , leaving within 3 days of my dx. I didn't tell her. In fact, I made nothing of it because when I told friends they became upset. I just said its not really cancer, to make them feel bettter and me as well I guess. This was January 07.

November 08 I decided I needed to become more pro-active. I met Jack on another BC site and he directed me here. It was you all that made me take the bag off my head and face this cancer. Since then I feel I have made leaps and bounds in understanding my type, grade, stage and NOW I feel like a pro-active patient.

And here I sit in Toronto, getting a second opinion in less than a week from today. Then I get to meet my buddy Jack and his lovely wife and thank him in person for making me the better person I am today.

Boy, someone pass the kleenex. Typing all this out is making me cry. But thats nothing new for me.
My mother always said my bladder was in upside down.

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Lynda,

You had great response,and well taken care of like Jack,,,, not that we want the news but how its delivered is important,and the rest is the jounrey.
Ginger

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Sincerely,
Your a sneaky little devil,welcome,,,we need someone to keep us grounded,maybe you can help out,,,,glad your here.ginger

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Lady Jane,
So I ask you,do you smoke,? and how many??
like it really matters now,,,don't ya just love it,like were stupid or something, we know its bad so lets get to the real issue here....
Like you I knew the news and didn't know what to do with it,,,my husband didn't know,since he was out of it when the doc told him,,,I paced the yard....maybe talking about it now makes it better,saying it,,,as it was all so hurtful...we are emotional human beings,,,need the tlc at times like this....ginger

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Silgal,
Thanks for your story as we can learn so much from our family members here,,,you too given the news abuptly,,,is there another way,,,I am going to research that,,,,gotta be way.ginger

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Lady Jane,
Heres some kleenx and a GREAT BIG HUG!!!

Ginger

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