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Newly diagnosed MIBC

6 days 12 hours ago #60062 by Abtface
I’ve been waiting for a response from Dr. Wade Sexton at Moffitt. My husband was able to locate his email on Linkin and sent him a letter. We were hoping to get in to see him this coming week. We came out of church this morning and he replied to our email! He’s going to see us this coming Friday. So happy. I need a direction.

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6 days 16 hours ago #60061 by Alan
Moffitt has a great reputation. As Joe indicated, tumors do not grow as fast as our brain thinks. Stage 2 is the best of invasive and the chemo is a standard protocol prior to surgery. The good news is you are on the way to eradicating this and you have a plan.

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.

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6 days 17 hours ago #60060 by joea73
For female of your age, either neobladder or Indiana pouch is often chosen over ileal conduit for the urinary diversion. The urologist I know who does neobladder surgery often only offers Indiana pouch for female patients. I have read that there are more complications mainly with incontinent issue with neobladder for female than male. Anyway, you have plenty of time to learn about it and decide what type of urinary diversion you prefer and suit your life style.

T2 is the earliest finding of the tumor which has progressed to the muscle tissue of the bladder, consequently the over all survival rate is the highest among muscle invasive. So, this is good news.

Your concerns of your spreading is valid, but because they caught you at the stage T2, it has lesser chance of metastasis. To address possible metastasis, by that it means that microscopic cancer cells which cannot be seen even using diagnosis such as CT or PET, it is likely that your doctor will recommend you to go through neoadjuvant (pre-surgery) chemotherapy first to kill potentially metastatic cancer cells. Neoadjuvant chemotherapy has been shown to improve over all disease free survival rate and it is strongly recommended by American Urological Association in its 2017 publication of the guidelines for muscle-invasive bladder cancer. Listed the link to the guideline. See the link below.

Going to the hospital which performs many urinary diversion surgeries is a must, and choosing the doctor who had
performed many times of your choice of urinary diversion should be taken in to your consideration.

Best wishes


https://www.auanet.org/guidelines/bladder-cancer-non-metastatic-muscle-invasive-guideline
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1 week 1 day ago #60052 by Abtface
Thank you Alan. If I’m a candidate it sounds like the neobladder. However I still have chemo to go through and removal of remaining tumor. I am overwhelmed. I beat breast cancer and am usually a strong lady, however this has got me I must say. It feels like the doctors are dragging their feet. As I’m trying to get into Moffitt. I’m so scared the cancer is going to keep spreading with every day that passes.
I hope to hear from some ladies and what they have gone through. Thank you Alan for sharing.

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1 week 1 day ago - 1 week 21 hours ago #60042 by Alan
Abtface,

I am sorry to read about your diagnosis. Yes, stage 2 bladder cancer protocol is removal of the bladder. This is still treatable and beatable. This probably feels like a ton of bricks being poured you however, there are many on this forum that have gone through this and living full lives after. I am putting in a link on the 3 diversions done on bladder cancer: https://my.clevelandclinic.org/health/treatments/12546-urinary-reconstruction--diversion. Just copy and paste into your browser.

As I am a man I am sure there will be a few ladies here that can give you a better read on what they have done. Just be assured that being athletic is a twofold plus. It will help on a rigorous surgery recovery and, in all likelihood you will still be able to do what you did before. There have been scuba diver, race car drivers and more that have gone through this. I have 3 friends/aquaintenances that have gone through the surgery and still play golf like they did before.

Keep posting as you go. It is one day at a time and you will get through this.

Edit add: Be sure whoever does the surgery, they need to be one that does at least 25-35 of these a year! Also, some are proficient in just 1 or 2 so they may push for what they know, not the one you may decide on.

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.
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1 week 1 day ago - 1 week 1 day ago #60041 by Abtface
Hi, I was just diagnosed. Seeing my doctor today for all the lab results. My head is spinning. I am a 2 year breast cancer survivor. This cancer is not related or metastasis from the breast. I am T2, I’ve had 70 % of the tumor removed. I thought I had a UTI infection and that is how this all started. I am 56 years old. I have been an athlete my entire life and very healthy. I am just in shock and need some hope.
I’m told I will have to have my bladder removed. How does one cope with this? Please give me hope? Long term life after this?

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