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Newbie Checking In
Hi All,
I spent last weekend readings all of the forums/threads/posts etc on here while I waited on my biopsy results from a removed tumor last week. My first URO missed the tumor during the scope procedure. I don’t know all the abbreviations and medical terms yet but after reading so much on here I was so much better educated when my doctor called yesterday.
I am 53 years young, married to a wonderful woman and she’s an RN, and I have 3 great sons. A 21 year old from a previous marriage who is going to Texas A&M who I am so proud of, a 10 year old who is just like me, and a 9 year old who is Autistic & Type 1 diabetic. We live in Southern Illinois and I’m retired naval officer but I am on my second career now. Our life was/is full of challenges and rewards. Yesterday the game changed when my doctor called.
I have invasive BC T-2 – T-3. My doctor is part of the URO team at Barnes Jewish Hospital / Siteman’s in St. Louis, MO. He is recommending RC with neobladder. Today he is consulting with others about possible chemo now or wait until post OP. He does 10 neo’s a year presently. He is well known for robotic kidney and prostate surgery. He is referring me to another team member who does roughly 50 neo’s a year but he will assist during surgery. I give him a lot of credit for taking the back seat. So again today I am waiting on the next plan, chemo or surgery.
So here I am and I will need you guys as I take the journey. I will update my status when I know more. Right now I am trying to get over the shock of the phone call yesterday and telling our kids and family members. I struggled all last weekend about joining the group but in the back of my mind I knew I would be. I joined today. Thanks
PC 7/2/12
T3a/N2/M025 Replies-
Hi Shipmate,
We may have crossed paths in the Navy days. I was an engineering LDO primarily on gas turbine ships (destroyer and cruisers). I was a gas turbine engineer when I got my commission. I joined in 1976 and retired in 1996. I miss the navy days but I do have a lot of shipmates I stay in contact with. Thanks for your support. Ben
PC 7/2/12
T3a/N2/M0
Ben
Welcome the the group shipmate. I’m sorry that you have the occasion to join but this is a very good place to get info and support.
I too am a retired Naval Officer, 56 yrs old and a SWO. I came down with Bladder Cancer in early 08 and had my R/C in July of 08 with a neo. I know of at least one other Naval Officer on the site, I know him outside of the site and he has been up on the Sunday chat a couple of times
I too have heard good things about Barnes. I think you’re being treated at a good place and it sounds like you have the right team. Please feel free to ask any questions that you have and I’ll talk on the phone if that is better for you.
Will (Sailorman)
Thanks so much Ray. It makes me feel so good to know I have people like you and the others in my corner. There’s nothing worse than talking to people about BC that have no clue what I am talking about. I just love this forum and everyone is so thoughtful and completely sincere. Thanks for the prayers!
PC 7/2/12
T3a/N2/M0
Hi Ben,
Read through you updates and just wanted to let you know that I and others like me are rooting for you and your family. My thoughts and prayers for a positive outcome are with you.
Ray
Catherine – What you say makes me feel so much better!!!! Thank you!
PC 7/2/12
T3a/N2/M0
Herb, Catherine, and Mark,
My head is still spinning from the doctor visit yesterday. I do think it is the best option for me if the next scope shows no cancer in the lower 2/3rds. I guess I’m lucky the tumor is at the top front away from anything important,
Thanks so much for the encouraging words, I think starting next week I will post my updates by number so that others can follow later on.
PC 7/2/12
T3a/N2/M0
I hope it all works out, and you can keep the bladder. I never heard of a partial but it sounds like an option I would rather have if possible.
That being said, if there is any chance that there is any more cancer in there I would want them to completely remove it just to be safe.
Keep researching your options and let us know how it all goes.
Man. :unsure: Its never simple is it? :dry:
Mark
Age 55
Diagnosed BC 12/20/2011 Ta No Mo 0a Non-Invasive At age 48
“Please don’t cry because it is over….. Smile because it happened!” {Dr. Seuss} :)
Hey Ben… just read your update. I had a partial cystectomy two years ago to remove a solitary tumor at the dome. There aren’t many people here who have had that surgery. As he said, candidate identification is very selective so he must be very confident in your diagnosis. Except for my scar, I can’t really tell any difference from before the PC.
I had surgery on Thursday and was discharged on Sunday. I could probably have gone home on Saturday but since I live 300 miles from the hospital, another day just made sure all was well for the trip home.
Please ask anything that comes to mind. I will be happy to answer if I can.
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
Another welcome to you Ben and also your wife Pam from this 73 year ‘bagman’. Sorry you had to join our family but I am glad you did for these folks really have helped me through and helped me find answers and they quickly became folks I trusted because ‘they had been there and done that.’Take Care and I will be with you all in ‘spirit’ as you journey forward — Herb
Age 72 had radical 9/11/10 have conduit everything is fine, grateful to be a cancer survivor. Lost Dad and Brother to Cancer both in their 50’s.
Ok I just got back from meeting with Dr Bullock. He put a new twist on all this. He says because of where the tumor is located (in the top) I would be a good candidate for a PC. He recommends seeing the chemo doctors next week. Do another scope and take 3 biopsies to make sure the lower 2/3rds of the bladder is tumor free and when the chemo treats are done go in and take off the top third of the bladder. Two+ hour operation and 2 days in the hospital. If he gets in there and see’s anything he doesn’t like I could still end up with the RAC and neobladder.
Post surgery – scope every 3 months for 2 years and then on a 6 month schedule.
If a tumor comes back then RC with neobladder.
So all that got me in a spin and now I need to make a list of new questions but its worth a shot. He said very few people have tumors in that area so PC normally isnt an option.
Here I go on another weekend of research! Cheers
PC 7/2/12
T3a/N2/M0
Ben
It is my understanding that the chemo decision is made after the lymph nodes are examined by pathology. If they show anything then it is chemo for sure.
I didn’t have chemo and just celebrated 3 years of freedom. But If the Dr. was to reccommend it…. I’d do it.George
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
=
New Man! [/size]
Here is my understanding but please understand I am not a doctor.
Chemo before is typical if there is something to be seen. Chemo after depends on how deep into the muscle the tumor is when they remove the bladder and do all the pathology on it.
I did not get chemo. The chemo is to kill any potential micro mets (metastasis that cannot been seen on any scans/tests). If there is any lymph node involvement, then chemo is for sure.
In my case, there was no lymph node involvement and he took out something like 41 (I’m pretty sure that was the number) lymph nodes. I was just tested a few months ago and I’m still cancer free and the probability is very high that there was no mets and there won’t be after this amount of time.
If they suggest chemo prior to surgery, I guess I (if I were you) would want to hear all of their reasoning behind that and make the decision myself.
My T2 was just barely into muscle. If it was getting close to being T3, it may have been a different story because the chance of micro mets would be much higher.
Your doc is going to have lots more info on this than I am so my suggestion is, armed with the info I just gave you, have that discussion with your doctor (in detail) when you talk to him about the path forward for you.
Hope that helps!
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.
Thanks Mike.
I do have a question about chemo. My doctor later today will tell me if they recommend chmo before surgery or after surgery. I know of someone that had this operation 2 years ago and he tells me to say NO to chemo. So what is the rule on this. I cant seem to find much on here about this or just haven’t found it yet.
If the cancer is contained and if they do testing during surgery shouldnt that be ok?
PC 7/2/12
T3a/N2/M0
Welcome Ben and Pam!
Sorry you have to join the club but I’m glad you found us when you needed us.
I’m pretty sure already that you are both going to be long term added value to this site as you go through this process, learn, and then contribute back to others on the site in the future.
I was T2 G3 and got my neobladder in October of 2008. So I’m over three years cancer free now. Three years from now I plan to see you posting that same thing in response to someone else when they show up as a newbie.
Your doctor sending you to another that does over 50 a year is really great. As you have seen from reading this site, that is one of the biggest predictors of success with the neobladder surgery.
There are people who are no longer on this side of the lawn because they thought it OK to go with the doc that does a couple a year. Some were lucky and are doing fine but why play the odds.
My wife is a nurse also so I can tell you that it surely helps. She won’t be all grossed out and my wife handled all the neobladder flushing for me when I came home from the hospital. Non-nurses can do that also but just knowing that she has the skills to take care of things and recognize if something isn’t right can make a difference in your confidence level when you are back home.
As I mentioned on another response to a different post of yours, GOOD LUCK!!!
Do make sure the kids know that bladder cancer is very treatable when caught early and treated aggressively. You are taking the right path for being around years from now.
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.
Thanks George. Type A here! :-)
PC 7/2/12
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