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Cowardly Urologist

8 years 2 weeks ago #42577 by mmc
You are so very welcome and I cannot express how happy we are that you are going to see Dr. Lamm! So, so, so very happy!

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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8 years 2 weeks ago #42576 by Cholla Bay
Hi Catherine,

Do not ever apologize to me for long posts! All of this communication is what's keeping me going right now. The dearth of communication from the young, bright coward and others in that office is what drove me into depression and hopelessness. I choose to remain angry. In my profession, as well as all others out there, your job is to do the easy work, the mundane, and the difficult. If one cannot do the difficult work, then get the hell out of the profession, because you can't cut it.

I love the part about the commercials making you want to go there! It's true! The facility looks like a 5-star hotel. Everyone gives you their business cards to put in the fat zippered binder they give you during the induction phase. After reading the posts and doing more research that I should have done before being drawn to CTCA, I realize now that it is a hospital/facility for types of cancer that I do not have. I am greatful to everyone for that.

Great meeting you, Catherine! And Mike, and Sara Anne, and everyone else. Looks like I have found a support group. I never thought in a million years I would ever say that, much less look forward to your posts.

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8 years 2 weeks ago - 8 years 2 weeks ago #42574 by CatherineH
That is wonderful news that you could see Dr. Lamm so soon! Since my diagnosis was not similar to yours, I'll leave recommended questions to others here. You have to be your own best advocate when it comes to your health and you are doing just that!

And this link from CBS News talks about the standard of care and findings of not being followed by so many doctors:

http://www.cbsnews.com/video/watch/?id=7374991n

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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8 years 2 weeks ago #42573 by Cholla Bay
Thanks for all of the support, advice and guidance. I have an appointment with Dr. Lamm on August 6th.

So now that I have decided to keep CTCA as a friend and use Dr. Lamm as my savior, what questions do I ask of him? I am not familiar with low-grade versus high-grade, so I guess that is the first one. I vaguely remember "high-grade" in broken English from the PA who ran interference for the coward urologist, but I failed to pick up on it. I remember they said the tumor was a little deeper than the top layer of cells, but not in the muscle and non-invasive. I had to pry T1-S1 out of him.

You guys are absolutely awesome! I am prepared for my daughter and made up my mind to use the best urologist I can get. Your help has been invaluable, but your support more welcome than I can ever express.

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8 years 2 weeks ago #42572 by CatherineH
Hello Scot and Helen... I'm a little late coming to the table here but I've been away from my computer for a couple of days. First, welcome to the forum and I so related to your comment about needing to be with people in similar straits as yourself. Like you, a BC diagnosis totally hit me out of the blue.

The local uro had me come to his office for my path report after the TURBT, stated in a very detached way that I had a "rare" type of tumor, he was referring me to Vanderbilt, and that he was not sure what they would do... maybe remove my bladder, or just maybe, they could do a partial cystectomy.

I'm watching his mouth move but really not comprehending the words. In my head, I'm thinking... 'WHAT????' My sister had offered to go with me but I had declined her offer because I wanted a chance to hear and react to the report by myself (always been kinda a semi-loner personality). I can't say I even remember driving home.

Just over three weeks later, I had my surgery at Vanderbilt (partial cystectomy) which went very well and I've been clear since (knock on wood). Even though I had very supportive family and friends, I never felt so alone and isolated those first several months. Until that path report, I had never even heard any of those "cysto" words like cystoscope and cystectomy. I didn't know anyone with bladder cancer and kept reading dismal statistics for my type of cancer. I only found this site eight months later and I feel like it saved my emotional and mental life. Being among "people like me" took away the dark cloud that had hovered over me all that time.

As far as CCA, no one is faulting your decision to go there. Their commercials are so compelling it makes you want to go there even if you don't have cancer! But I do think you would be fortunate to be able to see Dr. Lamm. A recent study linked better outcomes with the doctor you see for treatment because all uro's are not experts on bladder cancer.

One more thought... try not to be angry at your "young, bright" urologist. Yes, he could have handled it better certainly. Maybe being young, he had not had to tell very many patients they have cancer, or he got called away momentarily for something else in the office, or any other number of reasons. Harboring anger is not healthy, nor does it change the results of your TURBT. You need to direct that anger at the cancer and do everything you can to rid your body of it. Consulting with Dr. Lamm would be a good step in that direction.

It's rather amusing that I accompanied a 74-year-old friend to an appointment a few months back with the same "detached" uro that did my TURBT. She was having some bladder "issues" unrelated to any kind of cancer. He was joking and friendly and so unlike they way he was having to deliver devastating news to me. It's a hard thing for them to do so maybe your guy just wasn't "there" yet.

(Sorry this post is soooo long.) -Catherine

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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8 years 2 weeks ago #42571 by mmc
Regarding what to tell the family....
Be sure to tell them that bladder cancer is VERY treatable. At your stage, it is not the best it can be but it not the worst either. What you did not give yet (unless I just missed it) is the grade of the cancer. High grade is aggressive. Low grade is much less aggressive. The grade makes a big difference with regard to treatment.

Tell them how you feel. Tell them what you want and don't want in terms of how they deal with you. Tell them not to panic and starting thinking you are going to die.
Tell them the truth when you know it.

As you learn more, tell them more. Keep them in the loop. It helps them to be a part of it and it can bring you all even closer together.

T1 is very treatable. Remember that.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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