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Cowardly Urologist

8 years 2 months ago #42558 by Cholla Bay
Thanks everyone for the information. Now, of course, I am conflicted. CTCA has been my friend when I needed one badly. I would feel somewhat guilty to bail on them and go to Dr. Lamm, but it is my cancer, not theirs. Is there an easy way to do this? I will wait until my surgery is done in August and I get the results.

Dang but this is hard to deal with. :(

Unrelated, but since you guys have been so helpful, I have another request for advice. My adult stepdaughter Dawn, whom I love dearly, is flying in Friday. This will be the first time I have talked to her since being diagnosed with BC. She is VERY distraught. So now the three of us, Helen in denial, Dawn in distress, and me in conflict, will be together for the first time. Anything positive I can say other than trite "everything will be OK" lines that mean very little?

Scot

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8 years 2 months ago #42552 by DougG
Mark,

Welcome...I am glad you fired your first urologist. It makes steam come out my ears to think what he did to you. Also, welcome to your wife, Helen. I am Doug's wife. It takes a while to digest since you just don't hear a whole lot about bladder cancer. This site is a true blessing. You and Helen may want to join us on Sunday evenings at 8 PM EST in the chat room.

Best wishes and hope you get an appointment with Dr. Lamm soon.

Anita

Anita
Forum Moderator
Caregiver

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8 years 2 months ago #42551 by upnorth
Scot,

It is nice to meet someone with such a good understanding of who should be in control of their treatment. I can't imagine how I would have reacted to that situation. I think the shock of hearing the "C" word numbed you a little, witch probably save you from hurting someone.

We all know too well that sickening feeling of hearing you have cancer for the first time. But to add a urologist with the bed side manner of a complete moron. Is just unbelievable.

I am so happy you found help from someone who cares. I agree with Sara Anne you should also seek out the assistance of Dr. Lamm if at all possible.

As for your wife in denial, that will only get better with more understanding of how bladder cancer works in our bodies. You will see that there are many plans of attack and treatments to prolong your life. It isn't the death sentence that it once was. Please look around on this site so as to better inform yourself, and to prepare you for your next step.

Remember that we are always here for you and her. If you need help or just want someone to talk to please feel free to post anything you want. We are not experts, but we will do are best to try and help.

I'm glad you found us too.

Mark

Age 55
Diagnosed BC 12/20/2011 Ta No Mo 0a Non-Invasive At age 48
"Please don't cry because it is over..... Smile because it happened!" {Dr. Seuss} :)

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8 years 2 months ago #42550 by sara.anne
You are doing so well to realize that you are the "captain" of this particular ship. We are not disinterested bystanders letting someone else make our decisions!!!

Your courage and realistic approach will help your wife also. Many times spouses are the ones with the postings to the forum as the patient is the one in denial. Your wife is welcome, of course, to post and ask questions on the forum also. Either here, in "newly diagnosed" or under "Caregivers questions and comments."

Our partners and friends truly do help us to get through this.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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8 years 2 months ago #42549 by Cholla Bay
Thank you, Sara Anne, for "listening" first and foremost, and recommending Dr. Lamm. I will certainly engage him with the results of my second TURBT. Cancer Treatment Centers of America was a place to go while I was afraid, and a voice of comfort. I do not regret engaging them, as they helped me through a very fearful and depressing time. Now I feel empowered and more in control of my life for however long that may be.

Thanks for the welcome. I am sorry I am here as well, but grateful to have taken the steps to find you. As I explained to my dear wife Helen, I need to be with those in similar straits as myself. She understands that part, but bless her heart, she is still by her own admission in denial that I have cancer. Is there a place here for her?

Many thanks,

Scot

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8 years 2 months ago #42548 by sara.anne
Sorry that you are here, but glad that you found us. We have all been where you are, newly diagnosed and really wondering what is ahead. How unfortunate that your urologist was so inexperienced in dealing with patients!!

One thing that you will see on this list over and over is to GET A SECOND OPINION FROM A REALLY QUALIFIED UROLOGIST WHO DEALS WITH LOTS OF BLADDER CANCER.

I am unfamiliar with anyone's expertise at CCA, but being in Phoenix you have access to one of the very best experts in bladder cancer treatment in the country, Dr. Donald Lamm.
www.bcgoncology.com/drlamm/
If at all possible, I would recommend a consult with him. Bladder cancer is very different from most other cancers; the first line of treatment is NOT with oncologists and other "cancer experts" but with those urologists who see LOTS of bladder cancer cases. Not all do, as the $$$ are there in treating prostates!

As you may have found in your reading, one of the problems with bladder cancer is that it has to tendency to recurr...it must be caught early (as yours has) and then be constantly monitered.

Best of luck to you, and remember that we are here to answer your questions. Been there, done that!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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