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Diagnosed this week

7 years 1 week ago #40414 by Jmema
Welcome to the board. You are going to find informed, caring and compassionate warriors here. I don't think I could have gotten through my journey with them all.
Dr. Lamm's website is a wealth of information and there is always someone here who is either going through what you are or has been there before you.
I would make sure they use the numbing jel or give you some kind of sedation and if this Dr. won't find one who will.
Blessings....Jean

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7 years 2 weeks ago #40405 by Babsiebob
Hi Sandy
Welcome to our family. Sorry you have to be here but we are all really nice.
I quit smoking for 22 years before I was diagnosed with t3 muscle invasive bladder cancer. I had a Radical Cystectomy in 2008. It was very rough but I am doing fine now. I also had a cystoscope in the office and my ureathea was narrow and had to be dialated. The Dr didn't give me anything either not even numbing meds and I about climbed off of the table. It hurt really bad. He said if he had to do it again he would do it in the hospital and give me a little something. Under my breath I said there wouldn't be another time.
Anyway, good luck and do get a 2nd opinion
Barbara

Dx 4-28-08
pT3a no mo
Rc with Ileal Conduit on 6-09-08
2nd surgery on 6-27-09 for ureter leak
Renal failure on 7-01-09 nephy tube and then stent on 7-09-09
so far so good

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7 years 2 weeks ago - 7 years 2 weeks ago #40403 by Nix
Welcome to our site, but sorry you have to be here. You have the same diagnosis as I had originally. I was 62 when bladder cancer came to visit me. It is the best diagnosis you can have with bladder cancer, and sounds like they found it very early. However, you do not want to sit back and not be an advocate for your well being.
Mike is right suggesting you get a TURB and I always suggest a second opinion.
I had given up smoking 17 years before, but stats show that:

The average interval between exposure to the carcinogen and the development of bladder cancer is 17 years. The risk of developing cancer is reduced but not eliminated by stopping. Bladder cancer, like early prostate cancer, kidney cancer, and testis cancer, generally does not cause pain.

This is from Dr. Lamm, a leading doctor and researcher for bladder cancer. Dr. Lamm's website answers a lot of questions that new patients have.You can find @ http://www.bcgoncology.com/cancer
So, I believe bladder cancer takes years to form. Eating well is always good for you, and there has been some research suggesting broccoli is especially good for your bladder.(1 1/2 cups a week)
You will find a wealth of information here, feel free to ask ANYTHING, we have all been where you are right now.

Nancy

Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07

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7 years 2 weeks ago #40400 by mmc
Sandy,

Sorry to hear about the diagnosis. However, "low grade" is better than high grade. :)

Hate to bring this up but you really should consider a 2nd opinion with a bladder cancer specialist. Based on what I read in your story, your urologist took some samples during an in office cystoscopy exam and then the pathology came back "no lamina propia invasion".

To really make the ruling on lamina propia invasion, there needs to be clear margins all the way into the muscle. The probability of clear margins on one or more tumors during an in office cystoscopy is kind of low.

What is standard protocol at this time is a follow up in a surgery center to perform a TURBT. That's where they remove the tumor completely and get clear margins into the muscle.

If the TURBT confirms low grade, non-invasive, then watchful waiting is a typical plan. If there were multiple tumors, that may prompt a different treatment plan.

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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7 years 2 weeks ago #40399 by CatherineH
Hello Sandy... Welcome to our forum. I am so sorry for your recent loss of your loved one. How comforting it must have been for him to have you with him during his illness, and how difficult it must have been for you to see him battle such a formidable foe. My heart goes out to you...

I can't imagine what is going through your head to receive a BC diagnosis on the heels of the past two years. It sounds like it has been caught early which is a good thing. And I am very glad that your internist was quick to send you to the urologist.

Sorry your cystoscopy was so difficult since that should not be the norm. It was probably due to being so nervous and tense as you said. I remember that my first one was soooo scary but after that, they are very routine and take less than 3 minutes after I am prepped for the doctor. (I'm sure it takes longer if there is something suspicious to be examined more closely.)

Did the doctor use numbing gel prior to inserting the scope? I thought that was standard but I went with a friend to a local uro and he didn't offer any. Also, perhaps your internist could prescribe something like Ativan to take right before you go to help you relax. I think that is what I was given to take just before I had my laser eye surgery as a relaxant, so I know it is helpful.

You are part of our family now, so please keep us updated as things progress with your appointments, any treatments, etc. We are here to offer any support we can provide.

Best wishes... Catherine

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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7 years 2 weeks ago #40398 by NYSandy
Diagnosis --- Cancer!

My story, well I really didn’t think I would be the one having any kind of story except how I was going to recover from a two year journey supporting my significant other/boyfriend as he battled pancreatic cancer. Sadly he lost the battle on September 30, 2011. The truth is I have had so much loss in the past two years I was feeling numb but I had scheduled all my routine checkups for myself and I am glad I did.

So, November was my yearly physical and Pap test, my internist found microscopic blood in my urine and she repeated the test twice to be certain. She referred me to a urologist and they scheduled my appointment within two days. Examination and more urine I was sent off to have a CAT scan with an IV contrast I was very familiar with these types of tests, but not for me, but to have them now for me was unsettling. The next week (day before Thanksgiving) I returned to the doctor to learn the results of the scan and…more urine testing.

Ok, the CAT scan showed only two small stones in my kidney which the doctor did not think were significant enough and may or may not be causing the blood. So, as he mentioned the week before (don’t think I fully heard or understood) he was now going to use a cystocope to look inside my bladder. Ok then, I want to run as I sit in an exam room alone looking at this snake like instrument next to me-he is going to put that where? OMG, I am now sooooo nervous I am almost shaking.

So, I’ve been told by the nurse and a friend who’s done this before “it’s not so bad, only takes a few minutes”. This is first very awkward position…the reason, at 62 yrs old I’ve chosen female doctors for almost all my doctors, next it becomes clear this is not so easy as I had to have my urethra dilated as he was unable to fit the cystocope and there was some other issue with the angle….all I know is it took closer to an hour and once he was finally peeking into my bladder and I was watching on the monitor it did get interesting to watch….not fun, but interesting. So as he moved his tiny camera around inside my bladder he stopped twice to pinch a small piece of me and later told me he was sending those pieces for biopsy, he said he didn’t think it looked bad and worse case was I’d have to return regularly to have him look inside my bladder.

So, this week was the return to my urologist and I began to feel anxious about what I was going to be told. (My mind kept returning to the day I sat with my boyfriend and he was given the news he had a non-operable tumor in his pancreas) My adult son immediately said he would accompany me to the office visit and I am glad I was not alone.

Ok, I know this is not life threatening today but the fact I have cancer cells where they don’t belong is unsettling. My diagnosis is:

Low grade papillary urothelial carcinoma, with no lamina propria invasion

One of the things I’ve found interesting is two of my colleagues at work have told me their stories – both had large bladder tumors, had them removed and were treated many, many years ago and today they require yearly exams and are doing fine.

Now the worry and the questions….has anyone experienced similar difficulty with having a cystocope? I really think I need something to relax me during the procedure so I will speak to the doctor. Does this require seeking more than one opinion? As I read information and learn, this seems to be pretty routine. Are we eating and or drinking the wrong things? I am a reformed smoker; I quit 22 years ago so I really don’t think this could have been a cause. I do not work with chemicals, although the building I work in is very old.

Well, I’ve set up an appointment for my next cystocopy procedure and I am going to be proactive with diet (no more gum with aspartame, no more red wine, and it seems green tea is possibly a problem…so no more green tea). I will continue to eat healthy, organic when I can. Anything else I can learn or change, I will.

Thanks for reading - Sandy

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