I am facing this surgery and my doc tells me nothing. Is


#1

I am facing this surgery and my doc tells me nothing. Is there a group I can join. I’m really scared. Cheryl


#2

Hi, I have found that the drs tell you little, as they know what they know and dont tell patients all, just stuff you need to know at moment.
I came home after “bomb” was dropped on us and looked up bladder cancer in American cancer websites. Told me alot and increased my knowledge to what to ask, and stages of cancer and suggestions to deal with them and treatments.
We were told my husband has a HIGH GRADE of aggressive bladder cancer…so bladder removal seems like the answer as bladder cancer DOES come back. So why waste time on chemo and radiation, then have surgury anyway, we feel. My husbands is NOT in lymph glands, and we are currently going for bone scan to make sure of being contained in bladder.
Just look up stuff in cancer websites and learn all you can, that has been my only help. There is an article on “What you should know about Bladder cancer” and it gave us so many answers and questions to ask. I even had it printed out and took it to urologist, he was impressed that I did my homework. Imagine that, we patients have to do the work, it seems. I have had a hip replacement two yrs ago and had to do same homework for myself. Just the way medicine is today, I guess.
We wish you the best in your surgury too…Charlene


#3

Charlene (husband’s name?): For clarity: I had my surgery May 06 and I am
doing great. They found no other cancer but did not remove any lymph nodes.
I am now understanding that it may be safer to remove pelvic nodes…but
then all I can do now is hope it is not there. The idea is to live not worry
the rest of my life. be well. Betsygirl (Carol)
----- Original Message -----
From: “charlene (charlie)” bladder-cancer-cpt3855@lists.careplace.com
To: bearhere@sonic.net
Sent: Wednesday, June 06, 2007 6:51 AM
Subject: Re: [bladder-cancer] I am facing this surgery and my doc tells me
nothing. Is…


#4

Hello,

You can obtain answers to your many questions and concerns through this highly-regarded, patient-driven web site dedicated to those with bladder cancer.

www.blcwebcafe.org

cherylintampa bladder-cancer-cpt3855@lists.careplace.com wrote:


#5

Cheryl,

I don’t understand what you mean when you say your doctor didn’t tell you everything. He should tell you EVERYTHING! If he doesn’t you need a second opinion right away. I hope you have an oncology urologist instead of just urologist. A Yahoo group on Bladder Cancer (from which this group on careplace came) has people who have gone through this surgery (men and women) who can give your their input and experience.

For women this surgery is usually completely successful and had undergone major changes in the last couple years to make it successful. The folks on the Yahoo site (Bladder_Cancer) are good people and will help you get through this. There is a group called Bladder Cancer Cafe (not Yahoo or any regulated group like MSN; they are not a real support group, but a bunch of cancer fakers who are trying to make friends by pretending to have cancer, and you should not listen to anything they say because they are not speaking from any experiences they have actually had - if you should happen upon them.)

I don’t know where you live but Norris Cancer Hospital , connected with University of southern Calif., is a top hospital as is Anderson in Texas, and they might have web pages that might help.

I am a 68 year old man and I have been dealing with bladder cancer since 2003 (no bladder removal surgery) and I am getting through all this and you can too. I wish you the very best. You can also get me directly at heidi90065@yahoo.com .

SHERIDAN


#6

The best and most active group with accurate and up-to-date info concerning bladder cancer is the blcwebcafe.org. From that site, you can read information regarding the diagnosis and treatment of all stages of bladder cancer. This site has a large membership base that is willing to share their knowledge and experience with you. The site provides a forum and an email discussion group that you can join. The blcwebcafe has an advisory board consisting of three physicians recognized as experts in bladder cancer that periodically check the site for accuracy. One of these experts has this to say about the blcwebcafe: “The Bladder Cancer WebCafé , meticulously managed by Wendy Sheridan, is a ‘one-stop’ site for patients and caregivers who have questions about living with bladder cancer. It is logically organized, easy to navigate, and, most importantly, is ‘fact-checked’ with the assistance of physicians and experts in the field. It is not a surprise then, that the National Cancer Institute referenced Bladder Cancer WebCafé in their ‘Facing Forward’ Series.”*

By joining in on the forum pages or the e-mail discussion group, you will find a lot of support from others and information to help you make informed decisons concerning your particualr circumstances. It is also a place where caregivers of bladder cancer patients are welcomed and considered a valuable asset to the group.
My best to you,
Linwey
*http://www.blcwebcafe.org/endorsements.asp


#7

I would highly recommend against taking any advice from the Bladder Cancer Cafe as they are not a support group. I have about 43 hate messages from that group as evidence. Few if any of those people have ever had bladder cancer or treatment for it, and the people who “claim” to have had surgery can’t even give any details since all they know is what they have read on the internet.

I am actually dealing with bladder cancer and received only redicule and hateful messages from them. I appealed to the moderator - Wendy - but she deleted my message and let stand all of the hate messages. My whole experience with the Cafe left me very depressed and very fearful of treatments including surgery. I agree with another former Cafe member who said he thought that the group’s members are probably lonely people who pretend to have cancer so people will feel sorry for them and be their friends. Why they chose bladder cancer I have no idea.

Do not consider any advise from this group would be my best suggestion. The Yahoo group is a bunch of caring folks who have been through the mill on bladder cancer and came out the other end.

A representative of the American Cancer Society spoke to a support group I attended and I gave her my full experience with the group and sent her examples of the hate messages and she said she was going to remove any link to his group.

SHERIDAN


#8

As a member of the Bladder Cancer Cafe list, as well as CarePlace, I can say
with complete confidence that the Cafe is a wonderful and valuable resource
for bladder cancer patients. Sheridan’s one-man campaign against that list
is misplaced to the point of being neurotic. I hope anyone who reads his
posts will take them with at least a teaspoon of salt. If you want to know
whether it is a legitimate list, simply see who’s on the physician’s
advisory board–namely the world’s leading bladder cancer specialists.
Sheridan had a bad experience on the list for reasons that I will not go
into, and I’m sorry that is true, but his opinions about the list are vastly
ill-conceived and erroneous.

-----Original Message-----
From: sheridan [mailto:bladder-cancer-cpt3855@lists.careplace.com]
Sent: Wednesday, June 13, 2007 8:24 AM
To: crilly@dcn.org
Subject: Re: [bladder-cancer] I am facing this surgery and my doc tells
me nothing. Is…


#9

I dont really think this is the place to be calling people names for stating
their opinion, Sheridan was speaking his opinion and he is entitled to one.
I will say that I have heard other people make the same statements that
Sheridan has regarding this cancer cafe…personally, I have never had any
dealings with the place good or bad. We should just try and remember, we are all
dealing with the same thing here, and any advice is help. What you do with
the advice is your own choice, but mud slinging is uncalled for. Every one of
us needs all the help and advice we can get our hands on…take care and God
bless …
Karen

************************************** See what’s free at http://www.aol.com.


#10

The reason I respond to folks touting the Bladder Cancer Cafe is that I was deeply depressed by their hateful, non suportive messages and they made everything harder for me and for others. Typical of cafe people, the above writer uses the word neurotic to explain away many very hateful messages wishing me all sorts of harm (some of which I printed out and still have and are very clear evidence of the above writer’s lies). My point is that the treatment for bladder cancer has improved immensely in the last several years and I am hopeful for my continued good health and I sincerely hope for Cheryl’s good health.

Cheryl, there is a lot of real evidence and real medical stories of success for your surgery and you don’t have to take false hope (or in my case false fear) from the bladder cancer cafe. The chances are you will be soon living a normal life free of cancer.

Unlike the Crilly person, who perhaps believes the lies of the cafe writers, there are many TRUE stories you can read of women on the Yahoo site who can give you reassurance and courage to get through this thing.

My enemy is not the “bladder cancer cafe”. My enemy is cancer, dealing with my own one day at a time, and telling folks honestly what I am going through so they can have hope of being in remission as I am.

God bless you

SHERIDAN


#11

Sorry, Karen, but the one slinging mud was Sheridan. Statements like, “Few
if any of those people have ever had bladder cancer or treatment for it” or
"the group’s members are probably lonely people who pretend to have cancer
so people will feel sorry for them" are mudslinging bordering on slander.
Since he hasn’t personally met even one person on that list, I can’t imagine
why he says such things. Being angry is one thing, and as I said before,
I’m sorry that he had such a bad experience. But making up fanciful stories
to discredit an incredible group of caring people is simply evil.

I’ve been battling BLCA for over six years. Probably like most who receive
this diagnosis, I’d never even heard of bladder cancer. I was devastated
and totally ignorant. The Web Cafe saved my life, providing not only
incredible information, but unwavering and loving support during a time when
I desperately needed it. That’s why I get a little emotional when I hear
someone say ridiculous and horrible things about the Cafe. Sheridan’s
one-man campaign against the Cafe is misplaced.

I hope that this list is also the safe and loving haven for BLCA warriors,
their families and their care-givers, that the Cafe is. I’m looking forward
to a good experience here.

-----Original Message-----
From: Ladyblue [mailto:bladder-cancer-cpt3855@lists.careplace.com]
Sent: Wednesday, June 13, 2007 11:04 PM
To: crilly@dcn.org
Subject: Re: [bladder-cancer] I am facing this surgery and my doc tells
me nothing. Is…


#12

Hi, Cheryl,
What surgery are you facing? Is it a TURB to remove any tumors for biospy or is it a radical cytectomy(RC) to remove your bladder due to invasive cancer? If you could give me more info, I will be able to share with you the information that I have on both procedures. I have done tons of research on bladder cancer, plus I have had both surgeries…the TURB that diagnosid my bladder cancer as invasive T2G2 TCC(Transitional Cell Carcinoma) and then a few weeks later a RC with a neobladder replacement. TCC is the most common type of bladder cancer. Please let us know what your surgery is so that we can supply you with specific information to help you through this. Although most surgeris are approached with apprehension, accurate and realistic information will help you know what to expect and help you cope. My RC/neobladder surgery was in 2/2002, and I am proof that life can be wonderful after this complex surgery. Looking forward to hearing back from you.
My best,
Linwey


#13

I am happy to hear that the group was able to help you in that way. You are
right, bladder Cancer was something that took my family by suprise, It is my
husband who has it and not me, but as you know…when Cancer invades a life,
it invades the whole family.
take care and good luck. And as I said, everyone should seek and find any
and all help they possibly can.
Thanks,
Karen

************************************** See what’s free at http://www.aol.com.


#14

Hi, again Cheryl and All reading this thread,

It is apparent that I and the 500+ members have had a totally different experience and have the opposite perspective concerning the blcwebcafe.org site than a previous poster. I only ask that you check it out for yourself because it is one of the best available to bladder cancer patients. I am in good company with my recommendation of the blcwebcafe.org site, forum, and e-mail discussion list as you can see by the following which are just a few of the respected sites that include the blcwebcafe.org link on their pages in order to help their patients learn more about their disease.
National Cancer Institute(USA)
http://tinyurl.com/2fq45u
Mass General
http://www.massgeneral.org/cancer/crr/types/gu/bladder_sites.asp
MD Anderson
http://www.mdanderson.org/diseases/bladder/
University of Michigan:
http://www.cancer.med.umich.edu/cancertreat/urologiconcology/bladder_infoguide.shtml
Vanderbilit-Ingram Cancer Center
http://www.vicc.org/cancers/disease.php?id=5
Bladder Cancer Advocacy Network(BCAN)
http://www.bcan.org/
American Cancer Society:
http://www.cancer.org/docroot/CRI/content/CRI_2_2_8X_How_can_I_learn_more_44.asp?sitearea=

And, look at this endorsement of the site:
Michael O’Donnell, MD Director of Urologic Oncology
University of Iowa College of Medicine:
"The Bladder Cancer Web Café is simply the best single site on the World
Wide Web for patients with bladder cancer to find information about
their disease and treatments. It is packed with useful and up-to-date
information presented in an objective and non-biased manner. It also
provides an interactive (or passive) forum from which to learn how other
patients with similar problems are coping with their disease. Multiple
web links abound to all major private and public sites providing
complementary bladder cancer information such as the American Cancer
Society and National Cancer Institute. I personally recommend this
website to all my patients with bladder cancer."
http://blcwebcafe.org/endorsements.asp

Please see my previous post which addresses surgery for bladder cancer that your post said you were facing.
Thanks,
Linwey
P.S. It is sad to see wonderful bladder cancer patients labeled as fakers.
The “What Living Looks Like” page of the blcwebcafe site has pictures of many of their fighting members with a short caption with their diagnosis:
http://www.blcwebcafe.org/faces/default.asp
And sadly, the fallen warriors are honored here:
http://www.blcwebcafe.org/memorials.asp
These are/were real, caring people who should not be defamed.


#15

Hi, everyone. I’d like to actually introduce myself to this new list. I’m
looking forward to participating!

My name is Crilly Butler and I live in Davis, CA. I’ll be 57 in a couple
months. I was dx with a single stage Ta, grade III/IV tumor about six years
ago. I’d seen specks of blood in my urine for nearly two years prior to
this, but every time I mentioned it to my doctor, he simply dismissed it as
nothing. Finally, after more blood, I demanded that he send me to a uro.
The uro found my tumor within a week.

Confused and upset, I hit the Web. I found the Web Cafe almost immediately
and joined. I also started pouring through medical sites and learning
everything I could about BLCA, which I’d honestly never even heard of before
I was diagnosed. I had my TURB, and when the pathology showed a high-grade
tumor, I asked for BCG, which was one of the things I’d learned about from
the Cafe members. Interestingly, the uro said I didn’t need it. He said
he’d “gotten it all” and that I would “never have to worry about bladder
cancer again.” Right.

So I basically demanded BCG anyway, and he relented. One instillation a
week for six weeks, then my 3-month scope. Two new tumors. Bummer! So I
asked him for something else I’d learned about–the BCG and Interferon
combination therapy. He refused, so I fired him.

My next uro had never used BCG + IFN with a patient, but after I put him in
touch with the Rep for Antron-A, who provided training to him and his staff,
I started on BCG + IFN induction, and then five yeas of maintenance. For
those five years, my bladder looked great. Then, just before last
Christmas, at my 5-year scope, one new tumor. Had another round of BCG +
IFN in February, and will continue with one round per year. However, I’m
back on 3-month scopes for obvious reasons. I also just had my prostate
nuked by microwaves–it’s called transurethral microwave thermotherapy or
TUMT. Wasn’t nearly as bad as I’d expected, and I’d highly recommend it for
anyone one this list suffering from BPH. Nevertheless, between the TURBTs,
BCG, BCG + IFN, 25 prostate biopsies, and now the TUMT, I sometimes wonder
what I did to deserve all that!

So there’ve been some ups and some downs, but I’ve learned to just keep
putting one foot in front of the other and doing what needs to be done.
I’ve also learned to appreciate how much beauty and wonder wait for us
around every corner nearly every moment of the day. So life is more
precious than ever, and I’m grateful for that. Greetings to all, and thanks
for listening!