1. Forum
  3. All Categories
  5. Newly Diagnosed, New To The Forum
  7. The map of the journey--Andy

The map of the journey--Andy

14 years 2 months ago #29964 by mmc
Replied by mmc on topic The map of the journey--Andy
Andy,

So glad you got to UM. I'll bet you are too!

Good luck on the restaging. The wait will be a pain but I certainly wish you (and your wife) all the best.

This is really tough on our spouses also but, like mine, it sounds like your's is there with you every step of the way. That really makes a difference when someone's got your back.

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...
The topic has been locked.
14 years 2 months ago #29962 by Andy
Replied by Andy on topic The map of the journey--Andy
Went to UM for the consult - met with Dr. Hafez who my wife and I really like. I'm getting restaged tomorrow and he gave us 3 possible scenarios. 1- no evidence of disease and begin BCG treatments. 2 - cancer present not yet in the muscle layer means an RC. 3 - cancer present in the muscle means chemo and then another TURBT so decide the next step. We're very glad I'm getting restaged - definitely worth going to a major cancer center and seeing a world class surgeon.

Andy
The topic has been locked.
14 years 2 months ago #29873 by kcnorthstar
Replied by kcnorthstar on topic The map of the journey--Andy
Andy,

Yes, It is a hard decision when facing T1G3. I think that your doctor is right in saying that 90 per cent want to keep their bladder and choose conservative treatment. I went to Mayo and they also seemed suprized when I mentioned going straight to RC, but when I pressed the issue, they admitted that RC would give the best odds for a cure. I wish you luck in you decison. Deciding which course of action to take was the hardest thing I have ever had to do. Keep educating yourself on BC and remember that in the end it is your decison, not a doctors or someone else.

KC
Age 59
DX Jan 2006 - T1B G3
RC - Neobladder June 2006
The topic has been locked.
14 years 2 months ago #29871 by Andy
Replied by Andy on topic The map of the journey--Andy
Thanks everyone -

Big decisions ahead. I saw my uro yesterday (who is great) and she was somewhat surprised I was even considering RC at this stage. She wasn't against it, she just said 90% of her patients want to keep the bladder. So do I, but I want the best chances for survival with the best quality of life. I mentioned the 1/3 rule and she agreed, but also said there are no guarantees with any course of treatment. She works very well with the UM Cancer Center so I feel after my consult with them on Friday, the path will be a lot more clear. The best news though is next week I get these damn ureter stents out, thank God! At least I can get back to more a normal activity level with out being sore or the occasional slight bleeding. Thanks for all the good advice -

Andy
The topic has been locked.
14 years 2 months ago #29862 by Cynthia
Replied by Cynthia on topic The map of the journey--Andy
Andy,

T1 is a rough diagnosis it sits right up there on that fence. I have had many conversations with people trying to make the decisions on this one. If they have a Radical Cystectomy they will always wonder if they could have avoided it with treatment, but being wrong weighs heavy. No decision you make is without consequences not an easy spot to be in. But it looks like you are doing your homework and talking to people who know where you are.

Always remember that this forum is here is not to give medical advice as we are not doctors, but to help you know the questions to ask your doctor. Being your own best advocate is mandatory and what you learn here hopefully will facilitate good communication between you and your doctors.

Much has been written about understating of T1 bladder cancer and I am glad that has been covered here.

Good luck and I am glad you found us.
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
The topic has been locked.
14 years 2 months ago #29848 by mmc
Replied by mmc on topic The map of the journey--Andy
Andy,

Definately read that study that KC posted.

Here is part of the conculsion but the entire study should be required reading for anyone with T1G3.

Since you said your tumor was too big to take out all at once, I'd be sure read and evaluate carefully. I certainly can't tell you what do but I know what I'd do after looking at these numbers.

Keep us posted on what UM has to say.

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...
The topic has been locked.
Moderators: Cynthia, eddiek, sara.anne
  1. Forum
  3. All Categories
  5. Newly Diagnosed, New To The Forum
  7. The map of the journey--Andy

Login