Tom and Alana Steinmetz

"Do you have any risk factors that may have contributed to contracting bladder cancer at such a young age?"


Alana would occasionally bum a cigarette when we were out having a drink socially, but all of the doctors that we asked said that would not be enough to constitute a risk factor. We have not had the water tested, but our area is not noted for high arsenic levels or chlorination byproducts, according to the literature I have reviewed. We live near Louisville KY.

Exact diagnosis – Papillary TCC of the bladder, grade III/III, stage T1 (although one path report did indicate microscopic muscularis propria invasion). Subsequent biopsies of the original tumor site, as well as elsewhere in the bladder have been negative, so I guess the stage remains T1. We also had the tumor tested for P53, P21 and pRB at USC Norris, and the findings were favorable for all three. Alana has had 1 inital round of BCG as well as two maintenance rounds, and is being monitored every 3 months through cystoscopy, random biopsies, PET/CT scans (once), cytology, and recently, FISH.

We were somewhat frustrated that her hematuria started in early September and the BC was not diagnosed until she had to have an emergency TURB on Nov 15. The diagnosis was partially complicated by the pregnancy, which led her OB/GYN to think the source of the blood was vaginal (not uncommon in first trimester). Even after it became obvious that it was hematuria, they looked at other possible causes, like stones and UTI, first. The fact that the bleeding would stop after the antibiotics were administered made the diagnosis more difficult. Also, Alana had missed her yearly physical the previous summer because she had just had Julia, and since she had been followed so closely with the pregnancy she kind of let the physical slide. The urinalysis taken with her physical would have most likely disclosed that she had microsopic hematuria at the time, and we might have caught this sooner. In retrospect, I think it is very likely that she may have had the tumor during her first pregnancy as well.

The prayers and support of friends, family, church members, and even total strangers has totally amazed us! And the BC WebCafe has been a BIG part of that support. I cannot thank you enough for all of your efforts, Wendy! Also, we have managed to make some connections with some EXCELLENT physicians who have a worldwide reputation for excellence, most notably Dr. Michael O’Donnell, Dr. Michael Koch, Dr. Richard Cote and Dr. Stephen Strup. Our own Dr. Jackson here in Louisville has really come around to support us recently too. Although he does not embrace a lot of "cutting-edge" technology in his approach, he has been willing to be flexible for us, and has used some newer urine tests for follow-up at our request. He also was willing to follow recommendations for treatment that were made by the doctors at the bigger regional centers mentioned above in regards to the BCG treatments. We still have some differences of opinion on certain things, but he has been willing to help whenever possible.

Yesterday we had a first birthday party for Hope Elizabeth! We are very lucky to have her as a part of our lives, and she is truly a ray of sunshine – her name fits her well. Had Alana’s tumor been deeply invasive, we very likely would have had to make the difficult decision as to whether to abort the pregnancy or risk Alana’s life. God was truly looking out for us on this one.

Also, given the "ugliness" of the initial tumor, we are very blessed that Alana has been doing so well. So far it has been almost 15 months without a recurrence, and she has been tolerating the BCG quite well. I pray every day that this will continue, because I am well aware that life is very fragile.


Tom and Alana with new baby Hope

Big Sister!