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I am at a total loss

8 years 11 months ago #37481 by jimswife
Hi, Dana, you received excellent advice to come to this site. Many of the posters are very well informed and have many resources for accesing good doctors. Hope you husband does well. And, know when we first hear bladder cancer all of us were sent head over heels. I know my husband and especially i was numb for about a week. We just went through the motions of what we knew we needed to do but it was absolutely out of the blue and staggered us! Know that you will be fine and come back often for advice, to vent or just to read info about what others are doing. It's a wonderful group of people!

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8 years 11 months ago #37456 by Dana
I live in Greece, Athens. The university hospitals and the doctors are very good although they don't really talk enough to the patients so at times we felt we didn't know what we were dealing with.
Any advice about doctors here or even specialists in Europe that are top at their jobs would be appreciated.

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8 years 11 months ago #37452 by Dana
I forgot to mention my husband is only 49 years old, he hasn't had a CT scan but had an ultrasound.
Also he had a test which was like an x-ray, the doctors had him lying down for about an hour and tested to see if the liver and the bladder was working correctly, the doctors wanted to see if urine passed through the bladder. (I don't know what this test was called in English).
The tests came back positive and showed everything was O.K.
I imagine this is a good sign.
I still have very little information from the doctors as we have only just started to begin treatment and still have no clear diagnosis yet until the biopsy comes back.

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8 years 11 months ago #37449 by mmc
Dana,

Where in Europe (city/country) are you located? That can help if anyone then knows of top bladder cancer doctors within a reasonable distance.

The growths are typically called "tumors".

So, in English, the surgery to remove them is called a TURBT (TransUrethral Resection of Bladder Tumor(s). TransUrethral just means they go through the urethra to get into the bladder as opposed to open surgery.

What is important is the stage and grade of the tumors. Stage is how deep into the bladder the cancer is and grade is how aggressive the particular cancer is. Usually Grade is Low or High but there are some numbers used for that as well (1=low; 3=high).

It is certainly a scary time for you and your husband. Many of us have been in that same situation already and we understand.

Once you have the results from the pathology reports, it will determine what the next steps are. If caught early, bladder cancer is very treatable. However, it is often under-staged, so that second surgery to go back and make sure they got it all is very important. Understaged means they didn't get a deep enough sample to have clear margins so they can think it is only surface layer when it is actually deeper. That is why it is so important that they get good clear margins around any samples they take so they know exactly how deep it has gone. It is often caught when it is still on the innermost layer.

You and your husband are not alone. There are a LOT of bladder cancer survivors in the world and there are a bunch of here who are happy to answer questions.

If he was already "diagnosed" did you get a copy of the pathology report yet? If not, ask the doctor for a copy. If he/she doesn't want to give it then ask the hospital where the surgery was performed.

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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8 years 11 months ago - 8 years 11 months ago #37448 by CatherineH
Hello Dana... Welcome to the site. I am very sorry about your husband's diagnosis. We have all been there at that moment when the doctor first says "bladder cancer" and can hardly comprehend the words, so you are not alone any longer.

I know it may sound impossible, but try to take a deep breath and calm yourselves until the biopsies come back and you know exactly what you are dealing with. Remember that bladder cancer is treatable with today's medical resources. Once his specific pathology is identified, your doctor can help you map out a treatment plan, which should include a second opinion by a top bladder cancer specialist. Has he had a CT scan yet?

When you get his report, then some of our members will be better able and more than willing to share their knowledge and experience gained over the course of their own journeys. In the meantime, don't hesitate to post anything that is on your mind here. We are here to listen and support 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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8 years 11 months ago #37447 by Dana
Hello to everyone,
My husband was diagnosed with bladder cancer about 15 days ago and we are totally overwhelmed.
I live in Europe and this site was highly recommended by some friends so I hope I will get the answers I am looking for.
I am afraid I don't know all the terminology required as I don't live in an English speaking country so bear with me and correct me if I make mistakes.
After having a cystoscopy, my husband underwent surgery to have growths removed. He will have to have another operation in a month as there were so many growths the doctor couldn't remove them all in one operation
We are now waiting for the biopsy results
My question is what are these growths called? and I read that many people have only one or two growths. Is it bad that my husband has many? (They are small, not big)

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