Newly Diagnosed

16 years 4 months ago #10006 by Gene Beane
Replied by Gene Beane on topic Newly Diagnosed
Dan,
My husabnd had a blood test done by our internist in May, then by a urolgist in June, then he had a turb July 3rd, stage 3 t-2, muscle invasive, he is 66, The Cleveland Clinic was our next stop to see specialist Dr. Campbell and Dr. Gill.They did there own turb, same result. On Sept 14th he had his bladder removed with his diversion being the outside bag. Yes it turned our life upside down, but you have found it soon enough, as did we, no cancer elsewhere, no chemo or radiation needed.
Our summer pretty much sucked, and the waiting until Sept.14th was unbearable, so if you can get it moved up, ask for a private room as it is so much nicer, plan on a 5-6 day stay, first 3 days are not bad , you may lose some weight, Gene lost 30 pounds from beginning to end, he has gained 15 back as we are 7 weeks out of surgery, and pretty much back to normal,, no heavy sports activities yet, working out, but moving about as usual, not driving for 5 weeks is tough, the key is to hunker down and rest, walk as often s possible, and take your time getting better, you will see improvement weekly, but not in great strides, baby steps, thats frustrating but non the less 7 weeks later were doing great. I have posted Genes surgery starting Sept.14th, all 6 days, read it, it may help you,,Ginger

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16 years 4 months ago #10000 by Maria
Replied by Maria on topic Newly Diagnosed
Hi Dan, I was going to update my situation today with a new topic, but after reading your post I think it would be appropriate here.
Sorry to hear about your diagnosis, I have just recently been diagnosed with invasive bladder cancer, I am waiting for the staging. I think I am T2 or 3.

I can relate to your anxiety about the wait time.

I had an appointment this morning and when I arrived at the hospital suite it was locked. I called my doctors office, they apologized and offered me another appointment for this afternoon. Then I got another call canceling today’s appointment and my next appointment is for next Tuesday. Well I had a bit of a hissy fit (I am such a drama queen) as I felt so let down! I spoke with my doctor, I told him I was very depressed and worried about the CT scan results which were to be discussed today. He did not have the results and said to wait another week would be ok; he needs other opinions before devising a treatment plan.

I had not slept all night thinking about the results. Well now that I have calmed down and after reading your post and wait time, I feel much better. Think I probably over reacted as waiting another week, seems such a long time to me.

I think I will be referred to the H. Lee Moffit Cancer Center too and because of what you have said I will prepare myself fo a long wait, thus preventing any more hissy fits!!!

Pat kindly sent me this link and I have included a Patient Information link for you:
www.moffitt.usf.edu/
www.moffitt.usf.edu/Site.aspx?spid=6226FD7BFAA14BB69A5567E72DB8B000

Having said that I am from the UK, living in Florida and looking on the positive aspect of ‘waiting times’ I know my wait time would have been so much longer in the UK, possible at least 2-3 months for a referral to Urologist and no chance of a CT scan within 3 months.

Good luck
Maria x



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16 years 4 months ago #9998 by Dan366
Replied by Dan366 on topic Newly Diagnosed
Thanks so much for the thoughtful replies. Yes, I'm very glad I found this forum.

In answer to a few of the questions:
- Moffitt Cancer Center says the surgeon is booked until Dec 14
- They put me on a waiting list for cancellations
- They said if my uroligist isn't satisfied with this for him to call the surgeon
- I called my uroligist's office, but haven't heard back from him yet
- I hope to hear from the urologist tomorrow, and that he will call the surgeon

I've only had a CT scan and blood test so far (plus the biopsy). The urologist says that Moffitt Cancer Center will be doing a lot more testing.

Yes, I'm planning on asking for copies of all of the test results.

When I get more info, I will post it.

Thanks again for your comments and perspective.
Dan

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16 years 4 months ago #9997 by Zachary
Replied by Zachary on topic Newly Diagnosed
Hello again, Dan--my mental calendar must be on the fritz. Now that I've done the math, five weeks does seem like an awfully long time. Especially since you're mentally ready to get this show on the road.

"Standing on my Head"---my chemo journal
T3a Grade 4 N+M0
RC at USC/Norris June 23, 2006 by Dr. John Stein

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16 years 4 months ago #9996 by Zachary
Replied by Zachary on topic Newly Diagnosed
Hello Dan,

I don't think you're going through anything unreasonably uncommon, although it certainly may seem that way. My tumor was grade four and it still took several weeks before I met my surgeon at USC. Even now, for followups, I have to make an appointment about six weeks in advance (and I've had them rescheduled at the last minute because of his surgical schedule changing).

If you're like me, though your sense of time and timing and urgency has been heightened almost beyond comprehension, and for your own peace of mind, I would certainly ask if there any way you could get in earlier. Perhaps your urologist could make the request for you.

Congratulations on finding this forum. It'll be a huge help for you. It was--and is--for me.

Zach

"Standing on my Head"---my chemo journal
T3a Grade 4 N+M0
RC at USC/Norris June 23, 2006 by Dr. John Stein

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16 years 4 months ago #9995 by Patricia
Replied by Patricia on topic Newly Diagnosed
Hi Dan...Whew...things have been happening pretty quickly for you. Its a bit hard to wrap your head around it. You have been referred to an excellent center at Moffitt. Is it possible to call the referred doctors line and request an earlier appointment? Optimal time for a cystectomy is within 3 months of an invasive diagnosis. If the uro removed the 5cm tumor and got all the margins you should be ok for the wait. You should call the hospital and ask for a copy of the pathologists report .. its yours to have....that will tell you a bit more.
In the meantime check our home page and for the newly diagnosed and also for different types of diversions you might consider.
I would imagine Moffitt will want a copy of the CD of your CT scan, your pathology report, and any slides they have for their own pathology to look at. Have you had a chest x-ray or bone scan yet or any blood work done?
Please keep us informed and feel free to ask any questions. I know more will see your post and contribute here.........Pat

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