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husband w/invasive TCC w/ prostate involved
I am new to the forum and glad that it exists. Frankly I am about to lose my mind here and need some people who have been there and done all this to help me out. My husband was diagnosed about 2 1/2 wks ago with Invasive TCC bladder cancer with involvent of the prostate. He is scheduled for RC and prostatectomy with a ileal conduit to be done.
I thought I was doing okay with all the doctors visits etc but today, it hit me like a 20 lb sledge! Our lives are changing in ways we never imagined. Our surgeons, I believe are very competent, the primary surgeon was at UC at Irvine and seems experienced. Any input or ideas or suggestions are so appreciated.
Thanks in advance for any input, Jims Wife
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23 Replies
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Hello Pat,
Do you by chance know good Medical Oncologist specializing in Urology At USC?
You have recommended many good Urologic Surgeons in the post and it is very helpful!
Diana
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we are hoping that is possible. We all know that once the lympyhs are involved things are never as good as they are without them. But, it is what it is and we will move forward in a positive way. The best part is that at least the surgery went extremely well. As I had mentioned we felt very confident with the surgeons involved and happily we were right in our decision there. Thank you again for your input it is appreciated. Stage IV cancer in any part is never good but again we are hopeful. Jim’s entire attitude is totally positive. That counts for a lot.
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Jimswife,
Thanks for the update. Glad to hear that surgery went well. Since spread to the prostate is one of the definitions of T4, I’m guessing that part wasn’t much surprise for the both of you but the lymph node involvement is never good to hear about.
Hopefully, the chemo can do its job and get that knocked out!
All the best!
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 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.
Just a quick post to let you know my husband did have his RC/prostatectomy/lymph dissection and he is now staged at T4, N3, MO at this point. So, we are dealing with stage 4 bc. It is something else to realize this. But, on the upside, his surgeons did an awesome job. He is now 3.5 wks post op, up and about, doing well with his urostomy etc. His main incision looks great and we will see the chemo doctor this Thursday. So, I am in hopes we can keep this monster at bay. I do thank you for all your awesome insight and input. Thank you for caring so much about those of us new to all of this.
Pat,
You have won my “Miss Bladder Popularity Contest”. LMAO @ myself-I almost typed Lucille Ball’s Veta Vita Vegamin regimen word when she got plastered in the skit and said are you “are you unpupular”.
Gotta keep our sense of humor when battling the “C” even if this is serious.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
Miss Patricia…You are elected into our Hall of Fame as Well!!!
If not for you and your incredible knowledge…my husband would have been treated “completely” different than we are now. If not for you, and the excellent recomendation for second opinions and to Dr. Bochner and MSK, my husband would be getting chemo right now and would be staged at a higher stage than he is now.
YOU and YOUR Bladder Police Patrol get the 5 STAR acknowledgement in our neck of the Florida swamp.
We are very thankful for your Bladder Patrol Brigade.
You help to SAVE LIVES!!!!!!!! What more can anyone ask????Cheryl
Pat,
We have no disagreement. You are not elected into the pushy
broad hall of fame. You are just elected into my hall of fame!
I have said before that i went through my other cancers
without a site like this. Good up to date info was very
hard to come by. I felt as if i had found the best source
of knowledge available when i came across this site. A year
later, i feel even more that way. I see the work Cynthia,
you, Mike and others here do and i am constantly amazed by
all of your work and knowledge.
Here’s hoping you continue to disagree and be a pushy broad!
DukeWell since i haven’t exactly won the Miss Bladder Cancer Popularity contest…i will continue to push and probably disagree with you Duke. I understand where you were coming from. I felt the same way after an all out Herculean effort to find the best bladder cancer surgeon in the country and the best Hospital………and then 8 yrs later Breast Cancer shows up. Fight or Flight? I’m tired…I knew where i should have gone but i didn’t…the 4 week radiation therapy would have drained me of all finances out of town. I refused chemo because i didn’t want to die without hair and a 90lb frame at my age…so i half fought and i may lose the battle because of it. And i’m alone with nobody to care about me..the fight drained out of me.
But first round i was a fighter…i educated myself with research not by asking a nurse or another doctor who i should see. They’ve hardly heard of bladder cancer themselves.
There is so much information on this site..so many guidelines…so many good articles to be read by first class uro/surgeons….all the NCI centers are listed..you don’t have to leave this site to research. We’ve made it easy. Decision hard…research easy.
So if i’m elected into the Pushy Broad Hall of Fame…Good.
Jimswife;
Hello, sorry to hear of you and your husbands resent troubles.
I completely understand the thought process you’re both going through. I also understand that Pat, Mike and others are trying their best to help you. I’m going to go out on the proverbial limb here and offer you what may be some comfort
instead of good advice. I had a R/C about eight months ago after dealing with bladder cancer for a little over a year. I
am 63 y/o. I want first to say, over the last twenty years i had a couple other non-related cancers, and had done about all the traveling for medical procedures i ever wanted to do. So this time when i was told what needed to be done, even tho i had read what Pat and Mike had to say on the subject, i chose to stay in my local area. Like you i did do alot of checking on the doctor that was going to do the surgery, until i was satisfied he was good. All i can offer is my
experience over the last eight months. The surgery went as planned. I was home in ten days. Starting to feel better atfer
one month. Feeling good at 3 months. Feeling back to near normal at six months. I had day time control of my new neo-
bladder after a few weeks, I still ware a pad at night, but
is not always needed, i feel more comfortable that way.
I was able to have sex at a little over 3 months. Could
something still go wrong after eight months? Sure it could.
Would it be because i didn’t go to a major bladder cancer
site? Who knows. I do know a number of people who have used
the same doctor, and been very happy. We all do what we hope
will turn out best for us. Thats about all we can do!
What people like Pat and Mike do here on this site is
invaluable and i would never doubt them. It just seems as tho
you have made a decision, and i wanted you to know that if
that is what you have both decided, it is ok.
Wishing you both the very best.
Duke
Jimswife,
This might be of interest to you and your husband. I posted it a few months back and it may explain in a bit more detail and our reasons for strongly encouraging people to get to the best bladder cancer docs at the best bladder cancer hospitals.
It is well worth the read and since it was written months ago you will realize that it is not directed specifically at you. It is written for all that find themselves in this situation. Our desire is for the best possible outcome for anyone who, like us, had or has bladder cancer.
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 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.
Jimswife,
Sorry if it sounds pushy to you. I’m sure that is not anyone’s intent at all. The other part of “been there/done that” that we have dealt with here on the forum is people who say “my doctor is just fine” because people told them so. Many had major complications and others are no longer living.
It could be the doctor you have decided can do the job just fine. Research has shown that the experience with the specific surgery is a key predictor of surgical outcomes.
Some folks here, expecially Pat, study the doctors in detail and share that information here. That has saved many lives and also helped many more avoid complications.The people who get to the top surgeons “in the field of bladder cancer with specific, higher volume experience”
have better outcomes. That’s just a fact that has been scientifically studied and published. Your husband’s highest probability of the best outcome is by going to one of those doctors.You are certainly free to decide whatever you want based on whatever criteria you wish. Patricia and others are making recommendations based on scientific research.
I wish the best of outcomes to your husband. There are others here who have had his specific surgery if he has questions about it. I have the neobladder so it’s a bit more complicated than the ileal conduit but tell him to feel free to ask anything of the forum.
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 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.Sorry Jimswife…not the least bit angry…well maybe at bladder cancer but certainly not you. Pushy..yep thats me.
I’m truly on a mission to save everyone from this horrible cancer and i’ve spent the past 8 yrs since my own cystectomy and diversion researching and interviewing and guiding. I can’t make any decisions for you but i can guide you to published articles by top doctors in the field. The decisions are all yours to make.
I’m not very Facebooky i’m afraid…i try to get the facts out there and forget the small talk unless i’m in chat…so please forgive me. I only truly want the absolute best care for your husband so you’ll have him around for a long time to come. I wish i had mine.
pat
Thanks, Cynthia, I understand all of what you say regaring the “pushy” part. I also understand they have been there and done all of this and I have not. I am just sorry that it seems to come off as angry to me. Maybe it is my interpretation of it. No problem here with me. Thanks again for your input.
Jim’s wife I am sorry you are here but am glad you have found us. Do not be upset by getting a little pushing on the forum on the surgeon issue. It comes from caring and is not meant to scare or intimidate. Where Pat is coming from is a lot of research has shown better outcomes when your surgeon has done a high volume of Radical Cystectomy’s as well as the hospital routinely being part of that team. The surgeon that did mine has done over 1,000 in his career and average of 3-5 a week, as opposed to my local Urologist who does two or three a year.
What goes on here is not to make decision for anyone but rather to allow them to become informed medical consumers and a big part of that is knowing what questions to ask your doctors. You are doing a good job of being an advocate for your husband. This is a difficult time for you and your husband and trying to make the right decisions under stress is a big part of it, know we are here for you if you need to vent.
I am going to move this to the newly diagnosed as it will get more attention from the men on the forum.
Good luck and keep posting you will find you have all kinds of things to talk about as your journey continues.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
Thanks, Harley Girl, My husband is 66 y/o in very good health well, other than the obvious. I have spoken with a number of the doctors that I have worked with and they say they are very confident with the surgeons we have chosen and if they had this disease they would also use them. I can only go with what I am hearing. I appreciate so much all you input and I am hoping I am not making a mistake. You all have frankly terrified me. Also, the surgeon has said he will be doing lymph node resection as well as removing the urethra for this cancer. My husband is stage III+ I am going to get the grade etc later today. I believe they sent the slides to the U of Florida for overread. Thanks again for your input.
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