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cancer has become serious
Posted by Dana on May 18, 2011 at 10:27 amHi, I haven’t been on the blog for a while as I have been ruuning around with my husband to various doctors.
Some of you know my situation but a month ago my husband was diagnosed with non invasive aggresive cancer, we were about to enter hospital to have a second procedure done to remove tumors, the first was done a month ago. The doctor assured us that there was no problem as the cancer was non ivasive.
Today my whole world has come tumbling down, my husband had a cat scan that showed the cancer had invaded the walls of the bladder (even though the biopsy showed nothing of the sort).
I am at my wits end, can someone tell me please and honestly, is this something we will be able to get through.
I honestly believe that there is no hope and that my husband will die, I am so afraid.replied 13 years, 9 months ago 5 Members · 8 Replies -
8 Replies
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GuestMay 19, 2011 at 6:21 pm
Yes a neobladder is correct. For a better understanding read this from Cleveland Clinic on different diversions.
http://my.clevelandclinic.org/services/urinary_reconstruction_and_diversion/hic_urinary_reconstruction_and_diversion.aspx
There is open surgery and robotic. Ask the surgeon how many robotic surgeries he has done. If less than 50 he’s still practicing. In fact, ask him how many cystectomies he does in a year. Make sure your surgeon will be actually doing the surgery and not just the proctor watching over the residents or interns.
pat -
Thank you Doug, we are waiting for the doctors phone call and will be leaving in a day or two for the hospital to talk to the doctor and see exactly what will be done, that is when we will be going over the results and our options in detail.
From what I have understood the will be making a new bladder without anything external (a neobladder ?), an operation that takes about 7 hours.
I think they use robotic (have I said it right), Is this how operations are done? -
Dana,
Sorry to hear about the latest news. Hopefully, you are seeing that doctor that Pat mentioned before.
I know it seems like the world is crashing down right now but there isn’t time to crash right now. Time to move. Time to start studying up on the surgery and getting prepared.
Many of us here have been diagnosed years ago and we’re still here. That should give you some idea that bladder cancer doesn’t always mean death. I will not lie and say it never means death either, because it can.
As Pat said, get the CT report from the hospital. If that is not available to you in Greece because of your laws being different, then get on the phone with the doctor and ask him to go over the report with you in detail. If the bladder cancer is in the muscle wall, then surgery right away is certainly the right direction. You need to know if anything was seen outside of the bladder and how far into the bladder wall it has gone. If it has gone deep into the bladder muscle then your husband will most likely require chemotherapy after recovering from the surgery.
Many of us here have had the surgery (myself included) and still others had both the surgery and the chemo and they are still here and posting. Others aren’t her posting but they are out in the world going about their business and have put bladder cancer behind them.
It is certainly a scary time for both you and your husband (and I’m sure your loved ones as well). Count on the support of your family and let those who want to help do so. You and your husband are going to be busy with the surgery and recovery so graciously accept offers of help. It lets those around feel they are contributing at a time when everybody (not just the two of you) feel helpless.
Be there for your husband during the surgery and recovery (but be sure to get enough sleep and take care of yourself). You don’t want your husband to spend a lot of energy having to worry about you (although he will no matter what you do). Even if he wakes up while recovering and sees you sleeping in the hospital room, he will smile and his heart will swell because you are there for him.
After the surgery, get him up and walking by the next day at the latest. Even if it is walking in place next to the bed. Walking wakes the intestines back up sooner. So does chewing gum which can be done right after waking up (but no swallowing the gum). The first day, he may even feel like “Hey, that wasn’t as bad as I thought!”. Don’t be fooled by that. Sometimes the anesthesia keeps working for a while and the pain doesn’t really hit until day two. Walking, walking, and more walking are the key. He won’t feel like it but tell him now that of the people who have been through what he is about to go through, we say walking is the key to recovery.
I wish you both the very best of luck! Keep us informed. There will be positive thoughts and prayer being sent your way from around the world who read this site.
Sending positive thoughts now ++++((((((
MikePS: That little graphic is supposed to be positive thoughts being transmitted through the internet to where you are. It’s faster than through the airwaves. :)
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 system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.GuestMay 18, 2011 at 6:44 pmDana,
As i recall you are in Athens and i did give you the name of a top uro in Athens so its an option.
I’m assuming the CT is relating to the size of the tumor in the bladder as you did not mention anything outside of the bladder. You really need to get a copy of the path report. I don’t know protocols in Greece but here we can get a copy at the hospital by just asking and signing for it.
You need some answers.
patDana –
Sounds like your Dr has a good handle on the next step for you and your husband. If he’s top in the BC field, run with it.
You’ll get lots of input about the surgery and aftercare from everyone here (we’ve all done this before B) ).Lynda
Lynda3 years UTIs
Indiana Pouch – July 2010
Pulmonary Met. – May 2011
Chemo started June 2011Thank you both, and Lynda the part where you said you will be praying from a distance brought me to tears. I actually wrote the message 5 minutes after my husband got out of the cat scan.
He has since phoned his doctor and we have a very limited time frame to even search for a second opinion.
Our doctor is very experienced and we were told one of the best in his field, he just said it was something he sees in less than 1% of his patients (such aggressive cancer).
He is scheduling my husband for a radical cystectomy in the next few days. Now I am trying to learn everything I can before I leave for the hospital.
Is this the safest option? What I mean is, we won’t be thinking about the cancer going out of the bladder as there will be no bladder.
Does it all go away or is there a strong chance of it coming back and invading other organs that what it was as non-invasive?
Also the cat scan showed something(haven’t read the report yet) that was 8mm or (cm) a month ago and is now 16mm or (cm), something about depth. Can anyone tell me what this refers to.Dana –
I was diagnosed with a non-invasive tumor at first as well, but at surgery the tumor was much bigger and had started to invade the bladder wall.
That said, I agree with Babsiebob 100%. This is a huge stumbling block for you and your husband but you will overcome it. Start today and get your 2nd or 3rd opinion, whatever you need to make a decision on your next course of treatment and get it done. I know you feel overwhelmed right now and just want to curl in a little ball and pretend it’s not happening, but you need to keep moving and being a part of your husbands cancer team.
Agressive treatment starts with you. Keep asking questions and let us help you. We can pray and help from a distance, but you and your husband are in charge(and don’t let any Dr. tell you otherwise)!
Lynda
Lynda3 years UTIs
Indiana Pouch – July 2010
Pulmonary Met. – May 2011
Chemo started June 2011Dear Dana
I was diagnosed with very aggressive muscle invasive bladder cancer 3 years ago. I had a radical cystectomy with an ileal conduit and I have been cancer free for 3 years. I just went to cancer doc yesterday and he is very pleased with my progress. This is a very curable disease. Yes, you will be able to get through this.
Good luck
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 goodSign In to reply.