Forum

× Welcome click the New Topic button to post

Newbie, picture of health until 8 weeks ago,

7 years 9 months ago #42141 by razorback
Dear Anita and Doug,

Thank you for your message and Woooo Pig Sooie to you too. Does your son still live in Fayetteville? Are yall also in Arkansas? I taught engineering at UA 13 years here then got crazy idea about starting a technology related factory in China 4 years ago. My wife has worked for the Razorback for 15 years and we are all about HOG sports. I manage all my USA time away from China around main sporting events through the year, haha. But this year has certainly been different with now managing the T1. Decided this week to focus 100% of my time on researching what to do next. Im trying to educate myself as quickly as possible so I really appreciate you and others on this site. Unless there is something earth shaking pertaining to new treatment for what I have, I will probably start the BCG road within the next couple of weeks. I had thought about trying to seek out a second opinion but am 99% I will stay with my current dr, http://www.nwaurology.com/NWA_Urology/Woodruff.html Dr. Woodruff is from my home town of Nashville, Ar and know his family and he knows mine though he is 20 years younger. Si I have certainly informed him I expect home town boy preferential treatment, which I do believe I am getting in terms of his focus and openness. He certainly is adamant about doing the BCG treatment but has given me all options as I have asked him to. I would certainly listen to your opinion on this as well. Thanks again for your time to respond to this and look forward to further communications.

Please Log in or Create an account to join the conversation.

7 years 9 months ago #42134 by DougG
Razorback,

Glad that you found the American Bladder Cancer Society. This is the best site for information on bladder cancer from survivors who have been in your shoes.

Our son graduated from the University of Arkansas and loved it there. Woo Pig Sooie!!

Hope you feel better soon. Everyone has given you good advice. Doug was diagnosed in 2001 and has had BCG. He has been cancer free for over 2 years.

Best wishes,
Anita and Doug

Anita
Forum Moderator
Caregiver

Please Log in or Create an account to join the conversation.

7 years 9 months ago #42133 by GKLINE
Razorback

Thanks for finding this place. And thank your body for giving you signs of bladder cancer before it became muscle invasive. You are lucky to have the choice of BCG or surgery. Some of us never got the chance.
As to going to MD Anderson..... GO! If it is available to you.

In my sport we have a saying..... "If you have a cheap head.... Get a Cheap Helmet"!!!
In this site we have a similar saying. "If you want to live..... Get the best care, at the best place, from the BEST People.

Very few, if any of us, are medical professionals. But we know how to survive this. And we want you to survive too.

Best of luck!

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]

Please Log in or Create an account to join the conversation.

7 years 9 months ago #42132 by warrentug
Hello and welcome to the site,
I was also given the T1/G3 diagnosis last November and have had all the symptoms and issues you are having now. I went for the BCG treatment and found it alot easier than the Cystoscope as for as discomfort and pain. It took about two weeks for most of the symptoms to go away after the last treatment, though I still have some urgency and have to void even if it is a little amount.
Talking to my doctor, we decided to stick with the BCG but go to a Cystectomy if another T1/G3 tumor shows up...try to get it before it goes to T2. It is a personal choice and one you will have to reserch and decide on what is best for you.
The internet is great for looking up all the studies and numbers but don't make the mistake I made and get mudded down with all the numbers...it can really stress you out. Again everyone is different but it took me a few months to get over the shock of being diagnosed with BC to the point where it isn't a big deal....it's great that you had the 2nd TURBT right away to find out that it wasn't in the muscel wall.
Best of luck, Warren

Please Log in or Create an account to join the conversation.

7 years 9 months ago #42131 by mmc
Glad you found us.

Definitely get the second opinion at a top bladder cancer hospital!

This article is a must read for someone in your position:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2684254/

There are some here who got a radical cystectomy and there are others who opted for BCG. It's a very fine line and it kind of depends on what you think the odds are.

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...

Please Log in or Create an account to join the conversation.

7 years 9 months ago #42130 by sara.anne
So sorry that you have to join our "club," but very pleased that you found us. You will find lots of information on this site (more than you can probably swallow in one meal) and lots of people who have been where you are.

BCG is not the most pleasant undertaking in the world...I would compare it to a dental appointment :laugh: but it can be life saving. As you no doubt have read, it is not chemo, with all of its systemic effects, but a localized jolt to the immune system directly in the bladder lining. Most people get through this with minimal discomfort and disruption of their daily activities. Dr. Donald Lamm, currently in Phoenix, is one of the developers of the protocol that most urologists use with BCG. Here is a summary from his website:
http://www.bcgoncology.com/treatment/bcg.html

It is important to be treated by a urologist who has extensive experience with bladder cancer cases. Many urologists treat primarily prostate issues and may not be up to date on bladder cancer. I am surprised that your urologist "left it up to you" about beginning BCG. Mine had practically made the appointments for me before our discussions...I had CIS and he insisted that I immediately cancel a scheduled trip to China so that I could begin these treatments! (CIS is high grade and can be quite aggressive.) Anyway, I would have a frank discussion with your urologist as to his experience with bladder cancer such as yours and with the use of BCG.

Once you have a treatment plan, you might chose to have a consultation at a center that has specialists in bladder cancer.

If you go to our home page, at the very top, click on HELP, then on "Reseached Resources," and, finally, on
"Doctor and Center Locator" you may find sites close to your home. The very best result of such a consultation will be that you are receiving the very best advice and treatments available from your local urologist. And if not, better to find that out now than later.

As for Chinese medicine...I really have no experience. However, I would want to be at a place with the very best medical care available (see above)
using state-of-the-art treatments. It might be well worth your while to plan to stay near home for a year or so until your treatments are pretty well completed and your condition has stabilized. Not sure I would trust BCG from a Chinese source...well, I am sure that I wouldn't.

Best of luck to you and please feel free to "pepper" us with questions. We are not doctors, nor have we "played one on TV", but we do have a lot of experience.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

Please Log in or Create an account to join the conversation.

  • Not Allowed: to create new topic.
  • Not Allowed: to reply.
  • Not Allowed: to add Files.
  • Not Allowed: to edit your message.
Moderators: Cynthiaeddieksara.anne

Users

Total Online: 0 Users and 2109 Guests 

Statistics

Today Total Opened: 0 Today Total Answered: 0 Latest User: andoslime57
Yesterday Total Opened: 0 Yesterday Total Answered: 0
Total Posts: 53537 Total Subjects: 6998 Total Users: 8682