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Afraid and needing advice

9 years 2 months ago #31882 by New Diag 7
Once again...excellent advice Mike. I am taking everyone of your notes.
Thank you
Cher

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9 years 2 months ago #31881 by Webs
Cher,

The first month after the operation I felt horrible. During the second month I started to feel human again. The third month I started chemo. Turned out there was cancer in 2 of my lymph nodes. I am 2 years out now and am so thankful every time the doctor says NED "No Evidence of Disease". Truly beautiful words.

At the beginning it is hard to see and think of the future. It is always about the next test result, the next appointment, procedure, or treatment. Like with any race you have to pace yourself to get to the finish line.

By the way it is not uncommon to go into denial after diagnosis. I played sudoko for 2 weeks straight after my diagnosis. It was my way of turning the conscious brain off and letting the subliminal brain come to grips with what was happening. That fight or flight reflex we all have.

So get the paper bag out for when your hyperventilating, hold on to your head so it does not spin off and know that we are here for you.

Webs

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9 years 2 months ago #31879 by mmc
Cher,

Whenever they remove the bladder, they remove the prostate. Given that it was cancer in both, both are going to need to come out.

That's where you want the absolute best surgeon based on the diversion your husband chooses. He can choose, but they don't know until they are in there if it can be done. Generally, men choose the neobladder (use a segment of intestine to make a new bladder and hook it up to the original plumbing), the second popular choice is an Indiana pouch (they use intestine to create a pouch and then hook it up to a stoma and they catheterize when they need to but are continent) and the third choice is ileal conduit (no internal bladder replacement, easiest surgery and the ureters are connected to a stoma which they put a bag on for urine drainage). People choose different ones based on personal preference and most people are happy with whatever they choose (or wind up with).

It's great that your uro is recommending a second opinion. Sometimes they try to do it themselves and that often does not work out for the best interest of the patient.

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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9 years 2 months ago #31878 by New Diag 7
Thank you Webs....
Truthfully, I am deep breathing to the point of hyperventilation while making as many calls as possible. I have already called pathology ...radiology and medical records at the hospital for his records. My husbands response to the doctors call was to fall asleep almost immediately. Which is what he is doing right now. Poor guy. I feel so bloody helpless.

Six weeks from time of results to surgery was pretty quick. My gosh I can't imagine it could all happen that quickly. How long was your recovery period?

All of this really has ripped the sun from the sky and delivered the black clouds. I just have to figure out what I am suppose to be doing next.......that is before my head spins off my shoulders.

Cher

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9 years 2 months ago #31877 by Webs
Cher,

Deep breath. This is hard stuff to deal with and you have to remember to breath.

The others that are more technical will chime in with the whys and wherefores. Just know that with invasive bladder cancer a radical cystectomy is the preferred course of treatment. With the highest rate of survival.

I know this is scary stuff. Your doctor is smart by recommending that you get a second opinion. I remember how confused and overwhelmed I was when I was diagnosed. My time from diagnosis to radical cystectomy was 6 weeks. Every one tells me that was fast, but looking back I wish I had used that 6 weeks to do more research and interview more doctors.

The others here have given you great advice. There is no harm in interviewing the doctor, your doctor reccomended, and the one you already have an appointment with. Remember that you are looking for the best not the fastest.

Take a deep breath, and ask all those questions.

Webs

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9 years 2 months ago #31875 by New Diag 7
Head is spinning and world feels like it is caving in. Doctor just phoned. His words.....tumor deeply invading into muscle and into prostate as well. Extensive. Transitional cell carcinoma. Suggested we get second pathology opinion and another physicians opinion. Possibly got it all with resection. Told us to pick up slides and scan and see Dr. Sexton at Moffit. I have appt with Dr Lockhart already scheduled even though Lockhart doesn't do prostate. Doctor said if it were him, he would take bladder and prostate out. It will depend on the protocol of the next doctor. He said some like to do chemo before surgery..and some like to do chemo after surgery.

Some of what doctor said does not make any sense to either of us right now. If he thinks he got it all, why wouldn't he know that after he just did the TURBT?

Out of words right now............both very very numb.

Cher

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