Newly Diagnosed and Freaked

15 years 6 months ago #286 by rentanag
Replied by rentanag on topic Newly Diagnosed and Freaked
The two replies to your message / question are absolutely wonderful and full of good solid information for you.  I would like to give you something else, something that I found before I even knew I had bladder cancer.  But from the beginning this 'thing' made / helped me feel strong, and perhaps it could do the same for you.  I've shared this story with many others and some of them feel as I do about this 'thing'.
In October or November of 2003 I was watching Oprah and there was a young man who sang a song to her (and the audience as well), and his name is Josh Groban.  The song he sang was YOU RAISE ME UP, and those very simple but powerful words have helped me through all I've dealt with to include cystectomy, incontinence, and more.  
Don't get me wrong though, I'm okay and I've also just celebrated two years since my surgery and still all clear for cancer.  That means my neobladder is also two years old and so to celebrate I took fudge brownie's and Blue Bell Homemade Vanilla Ice Cream to the Urology Clinic to thank those people who have helped me get through everything since my diagnosis in Dec 03 and surgery Feb 04.
Oops I got off track here, sorry about that, back to my special song.  From the first time I heard it, I knew it was something I wanted to listen to again and so in the next day or so I went and purchased the cd this song was on.  I had it in the player in my car before I traveled the two miles back home, and it stayed there until my husband rode in the car with me days later and he removed it and added it to his computer (I did too).  After that it went straight back into my car, and every time I was in the car that's all I listened to I just kept returning it to the beginning of that track.  Of course on 29 December I learned about the malignant tumor in my bladder and then on 15 January 04 the TURBT showed High grade, deep muscle invasive TCC of the bladder.  I was scared that's for sure, but all during that time I just kept listening to Josh and that song did raise me up and made me strong.  I believe it helped me to realize that no matter what I couldn't change what was happening with me, but I also knew that no matter what happened I would be able to handle it and I would do what I had to do to work at surviving this frightening disease.  It was frightening because I hadn't ever heard about it before, but I learned, became knowledgeable about this disease.  The more I learned the stronger I became, and as both of the previous response's to your question alluded to just give yourself some time to absorb all of this.  It's all a process and necessary for you to travel through it just as we all do.  I hope I don't sound to pollyannish, if it sounds that way I'm sorry. Something I've learned more recently has to do with deep breathing, so stand up and take some really deep breath's.  You'll feel better for it.
My song may not help you, you may have your own special piece of music that helps you but give it a try, it can't hurt and it might just help.  If I can help at all, just email me...I'd be happy to answer any other question if I can.
Lou Graham

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15 years 7 months ago #255 by Cynthia
Replied by Cynthia on topic Newly Diagnosed and Freaked

I am so sorry it is so hard to go through this and at a time that you are adjusting to a new little one in your home. What you are feeling is so normal anyone would be terrified in your shoes. You will do as we all do and once you know what you are dealing with go forward. You are a nurse and that tells me you are a strong woman, you may not feel very strong right now but one day you will look back and realize that you are survivor. Keep in mind for many BC is just something they have to keep a watch on and for the small group that it is more there is hope and treatment.
As for what caused your cancer you can not even begin to guess.  There are BC survivors that are vegetarians, long distance runners, and have never smoked in their lives. Don't kick yourself for the past all we can do is face the future.  
At there is a link to an online support chat the meets twice a week. I am the moderator of it most nights.  Wendy is right the list server on the Web Cafe is a wonderful resource as is the BC sisterhood. If I can ever be of help to you or you need another woman to talk to about this don't hesitate to contact me.

Chin up and straight forward


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

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15 years 7 months ago #225 by wendy
Replied by wendy on topic Newly Diagnosed and Freaked
>Just looking for a little positive outcome. I hate the thought of all the cystoscopies I will have to have.
Anna <

Hi Anna,

Your husband is right, you will deal with whatever it is you have to deal with. The place you're at now is a sort of limbo and very difficult. Things will get better though.

Two things...don't kick yourself for having smoked for 6 years, or anything else, it's not productive. And by the way, plenty of smokers and others who put their health at risk with life-style factors do not get bladder cancer. Perhaps your tumor was caused by something you couldn't possibly know or control, so what is the use of blaming yourself. The other thing is...please don't panic. When you get more familiar with the territory you'll come to see you're far from alone and that this is a very survivable diagnosis. It's also a widely variable type of cancer. If your tumor/polyp is found to be low grade and non invasive the 5 year survival rate is 100%, with a risk of progression below 5%. Most tumors are of this type. If you're one of the less lucky 20% or so with more invasive primary tumors, there are treatments that work.

There's no use in agonizing until the pathololgy results come back and you know exactly what you're dealing with. Sometimes removal of the tumor is all that's needed and it never comes back. They do tend to recur, but not always. In the meantime hope for the best and hang tight. It's not advisable to begin researching possible treatments until you have an exact diagnosis.

One thing that might be helpful is to have a look at the stories left by folks on the Storyboard here on this forum, and to read the page on the main site - Tales from the Trenches , you'll find stories from young women, pregnant women, women with neobladders, women doing other treatments and living to tell the tale.

Unfortunately you will be faced with life-long follow up, that's the nature of this beast. Find a doctor you can get along and communicate with, someone you trust. Be prepared to get a second opinion, maybe even on the pathology report itself if it shows something ambivalent. Path reports are subjective and a second opinion on the pathology can be helpful where a definitive answer is needed to guide treatment decisions.

There are a couple of email discussion lists that might be of interest for you, our large and active group has well-educated patients at every stage of the game, see and is part of the Ass. of Cancer Online Resources ( ).

Sylvia Ramsey recently set up a women-only bladder cancer group:

Take care and stay in contact!

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15 years 7 months ago #223 by anna
Newly Diagnosed and Freaked was created by anna
I am a 37 year old female and about 3 1/2 months into my first pregnancy I started bleeding. Initially the thought was that it was vaginal. After the delivery this past Aug and all the normal bleeding stopped...I still had episodes of ever so slight bright red blood with urination. The GYNE found nothing and sent me to the urologist. Come to find out after my first cystoscopy (yuck!) that I have a polyp on the dome of the bladder. I am scheduled to go for biopy, scraping of the bladder wall and check of my kidneys on March 2. I am scarred, worried, freaked and feel completely helpless.

The really wierd thing is that I smoked for about 6 years through college and then quit. I smoked maybe a 1/2 a pack a day. Ocassionally a social smoker with 1-2 out on a Sat night. My father was a heavy smopke and died last year from emphysema. I also worked in bars/restaurants on an off for about 10 years. Could this have contributed?

I am an ICU RN on top of things and know that if this comes back as cancer that things will be bad. How to cope?---I have no idea. My husband keeps telling me there is nothing I can do at this point and we will deal with whatever the outcome is.

My question is...

Just looking for a little positive outcome. I hate the thought of all the cystoscopies I will have to have.

Anna  :'(

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