High-grade papillary urothelial carcinoma, invasion into muscularis, at least pT2

thisoldbroad

Just diagnosed end of December 2011. Unable to remove much of tumors during biopsy & 1 kidney not draining. Next day nephrostomy for my left kidney. The Dr's advised chemo before surgery because of tumor growth rate. Just had my 1st chemo treatment 2/23/12 (Cisplatin & Gemzar). Knock on wood, so far I'm the luckiest chemo patient in the world because the anti-nausea drugs work great & flu like symptoms are so minor. Chemo will be once a week, skipping every 3rd week for 12 treatments. Then as soon as possible the surgery to remove by bladder, uterus, tubes, etc..

My pet (sp) scan only showed a suspicious lump in my groin that & having a biopsy this Monday - 2/27.

Kinda scared, no family or friends but luckily my dr's have hooked me up with great cancer support people, visiting nurses & luckily a not for profit hospital. I'm scared to look up survival statistics for this type of cancer, especially since there are aprox 15,000 women diagnosed with this type every year.

Any one else fighting this same fight? Any news or shared experience would be appreciated - good or bad. Thank you, Val

wilsel

Welcome and hopefully I can asist you...........
Hi Val:

First off, welcome to this forum. I'm glad I came on and saw your post. No, you're not alone, there's lots of us out here, actively interacting with others like yourself, as it's informative and comforting to have as much knowledge as we can get, during our journey.

Also, know that the prognosis for bladder cancer is not always that bad. I started my journey in Feb. of 2010 and had my bladder removed in June 4 months later. I had 12 weeks of chemo post surgery and have had 3, 5 month post chemo scans and all have been clear !!! I am doing great and actively go to a fitness center to work out on a regular basis. Just like everyone else, I live from one scan to the next, but, it is what it is, and that's about it. But, as I said in the beginning of this post, I welcome you and want you to know that you now have at least one friend out here that knows first hand what you're going through, and also, who care's about you. Unfortunately, for some reason, this site just doesn't have the traffic it should have. If you look at previous posts here, you will see that I have answered many posts in the past, and the people who originally posted have never been back to read my answer. Over a year ago I found a couple of other websites that are much more informative and they are the one's that I normally go to, however every once in a while I still come back to this site in case there is someone new like yourself, looking to hook up with other bladder cancer friends to get answers to questions and encouragement regarding this cursed disease.

I would recommend that you copy and paste the following website address into your browser bar, and join the BCAN website, which stands for (bladder cancer advocacy network) and you will be connected with many others who are sharing your same battles.

https://www.inspire.com/groups/bladder-cancer-advocacy-network/

You can also reach me at wilsel@verizon.net if you would care to email me directly.

Take care and I wish you well.

C U,
Bill

Urostomy 02-30-2012, bladder cancer staged 3a, very aggressive tumor

thisoldbroad

wilsel said:

Welcome and hopefully I can asist you...........
Hi Val:

First off, welcome to this forum. I'm glad I came on and saw your post. No, you're not alone, there's lots of us out here, actively interacting with others like yourself, as it's informative and comforting to have as much knowledge as we can get, during our journey.

Also, know that the prognosis for bladder cancer is not always that bad. I started my journey in Feb. of 2010 and had my bladder removed in June 4 months later. I had 12 weeks of chemo post surgery and have had 3, 5 month post chemo scans and all have been clear !!! I am doing great and actively go to a fitness center to work out on a regular basis. Just like everyone else, I live from one scan to the next, but, it is what it is, and that's about it. But, as I said in the beginning of this post, I welcome you and want you to know that you now have at least one friend out here that knows first hand what you're going through, and also, who care's about you. Unfortunately, for some reason, this site just doesn't have the traffic it should have. If you look at previous posts here, you will see that I have answered many posts in the past, and the people who originally posted have never been back to read my answer. Over a year ago I found a couple of other websites that are much more informative and they are the one's that I normally go to, however every once in a while I still come back to this site in case there is someone new like yourself, looking to hook up with other bladder cancer friends to get answers to questions and encouragement regarding this cursed disease.

I would recommend that you copy and paste the following website address into your browser bar, and join the BCAN website, which stands for (bladder cancer advocacy network) and you will be connected with many others who are sharing your same battles.

https://www.inspire.com/groups/bladder-cancer-advocacy-network/

You can also reach me at wilsel@verizon.net if you would care to email me directly.

Take care and I wish you well.

C U,
Bill

Urostomy 02-30-2012, bladder cancer staged 3a, very aggressive tumor

Hello friend!
Thank you for the reply & I will tap into those links you shared. It's sad to know others in this same situation, but also a huge relief to know I'm not the only 1 walking this particular road right now.

Stay in touch & let me know how you're doing, no matter the news.

Peace & strength!
Val