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Waiting for consult-scared to death

6 years 4 months ago #45004 by mmc
Joyce,

As Catherine mentioned, your symptoms are not necessarily bladder cancer. As a matter of fact it is more probable that you don't have it. We are all hoping that it is not bladder cancer.

Aspirin is a blood thinner and thinner blood can cause bleeding. However, don't change anything about your meds without discussing with your doctor first.

I know some people just can't help but stress about things but please try not to. Stressing to the level you describe is not healthy all by itself.

There are a couple of urine tests they can do in addition to the cystoscopy. A FISH test and an NMP22 test. One or more of these are often done in addition to taking a look.

If the doctor does see something, the next step is to schedule a biopsy in a hospital or surgery center to determine if it is cancer. So, you have a couple of steps between now and then.

If you find the stress unbearable, ask you regular doctor about some antianxiety medication to help you out.

Keep us in the loop and we will do all we can.

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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6 years 4 months ago #45000 by CatherineH
You are already being your best advocate! Good for you... this is only your first appointment so take in whatever your uro has to say. Write down your questions ahead of time (you probably already have!) and take notes. You may even want to take someone along with you as a second set of ears/eyes.

There will be time afterwards to seek an expert second opinion if it comes to that. We always encourage a second opinion regardless in most cases, so try to be optimistic that you will like your uro and that you will have confidence in his/her expertise.

I feel for you this week... I know it is a nervous and anxious time. Take care...

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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6 years 4 months ago #44999 by joyceb
Thank you again, Catherine. I had already called the office and had them move my appointment from the 15th to the 12th. When I asked the receptionist what would happen during the appointment, she told me it would be a consultation and that they would take a urine sample. I will be bringing my lab results with me. I will definitely ask the doctor about the cystoscopy and stress my concerns/risk factors. I only hope that I have chosen the right urology practice. They have ten doctors in the practice plus two nurse practitioners. I am going to do some research on them. For now, I am counting the days.
Thanks again!
Joyce

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6 years 4 months ago #44998 by CatherineH
Hi Joyce... one more thought. Since your appointment is still a week away, perhaps you could call the urologist's office and ask them what you should expect on your initial appointment. Explain your concerns that it could be bladder cancer based on your other lab results and ask if he usually does a cystoscopy on the first visit. Also, tell them to put you on their cancellation list for an earlier appointment in case something should open up.

Waiting saps all the strength out of your body and leaves one totally frazzled on all fronts. I know exactly how you are feeling after waiting a week for my path reports from my surgeries. I finally convinced myself to put it out of my mind (at least some of the time) until I knew what I was dealing with. I hope you can stay busy enough to have a few peaceful hours this week... my thoughts are with you.

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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6 years 4 months ago #44997 by joyceb
Thank you so much, Catherine! My appointment is on July 12. It seems so far away and I am afraid he will not be able to tell me anything definitive during the initial consult. I have been a basket-case since Monday. I have not even been able to participate in any 4th of July festivities with my family because I have been so upset. I hope I can get through a whole week of work without falling apart.
I don't think the urologist will diagnose a UTI or other infection as my lab work was negative for infection. I am going to stop searching the internet and just stay on this website for information. I'll probably be asking more questions! I so much appreciate your words of encouragement.
Thank you again!
Joyce

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6 years 4 months ago - 6 years 4 months ago #44996 by CatherineH
Hello Joyce... I am so sorry you are going through this scary time. Those first few days waiting... just waiting... to find out is so tough. First, I just want to ask you to take a deep breath, blow it out, and repeat. You may not have bladder cancer. Those symptoms can also be caused by a bad UTI/kidney infection. The internet will drive us crazy, but I was guilty of doing the very same thing on my smartphone while I was still in my doctor's office while she was calling to get me into the urologist.

If, and I emphasize "if", it is bladder cancer, you should also know it is very treatable, especially if caught early. There are many of us here who can attest to that. But it is too soon to go there...

To answer your questions, the urologist may do a cystoscopy in his office where a scope is inserted into the bladder to see what is going on inside. I know that sounds horrible if you've never had it done, but it is relatively painless and may be mildly uncomfortable. It is the best and most definitive test to know exactly what the inside of the bladder lining looks like and if there's anything there that should not be.

The uro may do an initial consult and schedule another appointment for follow up. One thing I would like you to know is that often urologist may dismiss women's complaints as "just a UTI" and give you antibiotics and say come back in six weeks/months. While that may be appropriate in some cases, if you feel there is something else going on after you meet with him/her, insist on a cystoscopy. Not all urologists are experts in bladder cancer (yes, that is a shocking statistic), so you have to be your own best advocate.

We will be here for you along the way to answer any questions. When is your appointment? I am not personally familiar with urologists or hospitals in your area, but some of our members may be. Best wishes on your doctor visit... fingers crossed that you will not become a permanent member here! :)

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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