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First post here and scared to death

bixa525
Posts: 3
Joined: May 2010

Hi, I am a 51 year old female who was diagnosed over 12 years ago with hematuria(blood in urine detected by microscope). At the time it was detected I had all the tests done to check for bladder cancer and kidney problems, everything came up normal. I was told 5% of the population has hematuria and there are no found causes. Ok so moving forward with blood still showing up under a microscope I am now having symptome of low pelvic pain, feel**** like I have to urinate constantly, and a feeling of incomplete emptying of my bladder. I am scared to death because everything I am reading indicates bladder cancer. I have a strong faith in God but I can't seem to escape this overwhelming fear that I will hear those words "you have cancer". I am scheduled to see a uroligist next Friday and in the meantime I feel as though a panic attack will set in any minute and I am going to die. Does anyone know are these symptome always a diagnosis of cancer or can other conditions or diseases cause these same symptoms? The waiting is killing me and I just have a bad feeling about this. Can anyone offer me some guidance or hope?

brightstargal
Posts: 4
Joined: Apr 2010

Hi bixa,
I am also a 51 year old female. I too, had blood in the urine but only since last September. You may just have routine UTIs. Only the urologist after testing can tell you what it is. Hang in there. I know, the waiting is the hardest. I was diagnosed with a cancerous bladder tumor which was removed in March. The good news was that the cancer did not spread. I was horrified when told by 3 doctors that the best option for my survival was to have my bladder removed. I am scheduled for a radical cystectomy tomorrow. It will mean some changes in my life but I am confident that I will conquer this thing. I am hoping that the doctor can create a neobladder, which after time, will function like the original organ. Panic attacks are normal in these situations. Speak to your GP to prescribe something to calm you down. Not knowing is the worst, but once you know you must take positive steps to make sure you have the right treatment and the right doctors and hospital if necessary. My family and friends are amazed that I am handling this so rationally but if you think about the other alternatives, it is the only way to do it. Stay calm. Try to do all the normal things you usually do. I am hoping that you will get good news but if you don't, it's not the end of the world. My thoughts and prayers are with you. Talking with others will help. Stay in touch.

bixa525
Posts: 3
Joined: May 2010

Brightstargal, Thank you for your encouraging words and I will be thinking and praying for you to have a successful surgery today. Post back when you get a chance. I am worried now it could be kidney cancer because I also have back pain along with all my other symptoms. I don't have a UTI because I was checked out for that and it showed nothing. I will try and take your advice and stay calm but honestly I don't know what else this could be besides bladder or kidney cancer. I am just scared and my daughter is getting married on May 29th and all I can do is worry about all of this. I know I have to stay positive though so that is what I will try to do. Thanks for taking with me.

BillKist
Posts: 6
Joined: May 2010

FEAR is a constant companion and the only way to overcome it is to educate yourself. I have colo-rectal and am terrified of my upcoming surgery but it has to be done so ...acceptance is the answer to all my problems today....you cannot make it go away but you can face it and git er done...aggressive fast action is para mount. I hope your urology guy finds it's a minor thing...keep in mind..cancer does not automatically mean your going to die...but it assuredly will affect life as you know it.

fathersson's picture
fathersson
Posts: 121
Joined: Nov 2009

I just had robotic prostate surgery and found that my prostate cancer was confined and has not spread. So in that regard I am lucky. A small bladder tumor was also discovered and removed on Feb 5t. A subsequent cyso and biopsie of April 21 deemed me clear of any further tumors. That said, my doc has advised that tumors likely will resurface somewhere down the road. Scary? Kind of...but at the same time I cam confident that if we stay on top of this, the chances of BC taking my life will be markedly reduced. Educating yourself is paramount as is taking control of your life.

Best and good luck,

Frank

bixa525
Posts: 3
Joined: May 2010

Well I saw the uroligist today and he is sending me for a CT scan on Monday and then I have to go back to him to have a cystoscopy. I guess I will know what I am dealing with soon.

Skid Row Tom's picture
Skid Row Tom
Posts: 118
Joined: Apr 2010

Good luck and keep us informed.

Tom

Pris42's picture
Pris42
Posts: 12
Joined: Feb 2010

I wanted to wish you luck and say I just went through this and the same tests too but though I did have it I had told the Doctor lets test for itwith the cystoscopy today and if I need it surgury and whatever lets do er. She said a lot of people especially some of the older ones put it off. I said not me it's better to know either way then treat if necessary fast the earlier the better.

I am wishing for you a no cancer result for sure. Just know if it happens it can be taken care of fast and hopefully easily. Went through the cat scan which is how they found mine then BCG treatments.Just getting ready to go the 18th to the surgeon for a look inside tthe bladder by her then seeing my cancer Doctor the 20th for the results of his tests. So hoping for good results for you and some for me too.

Good Luck on the tests and please post if you don't mind the results. Talking helps I think with others going through it or that have.

brightstargal
Posts: 4
Joined: Apr 2010

Hi Bixa,
I am 2 weeks post op now, one week in the hospital, one week at home. It gets easier each day but I still have the catheter until Weds. I also find out the pathology then. Any news on your situation? Congratulations on your daughter's upcoming wedding. Don't let anything get in the way of that! Focus on how happy you are for her and enjoy every moment. You can't change what will be now. You will make rational and logical decisions going forward.
Keep us posted. Brightstargal

pkaz53
Posts: 84
Joined: Nov 2005

I had a 23cm tumor removed from my bladder in 2001 I was surprised that it was low level and was able to keep my bladder I did a lot of treatments bcg and other chemo washes.

I see my Doctor 4 times a year for cystoscopes the latest was May 21 2010, a small polyp was found in the area where my original tumor was, still waiting for the results on that biopsy.

In 2003 I was diagnosed with small cell lung cancer did 4 cycles of chemo: cisplatin and etoposide, along with radiation twice daily for 30 treatments and finally pci to the brain.
I'm 6yrs.3 months out of treatment for that -- and am cancer free......

I'm 57 years young and am enjoying life -- I am so lucky and thankful to be alive, I did the standard treatments, no clinicals, and am a blue coller worker.

My story is one of hope that others can overcome the challanges that they are facing good luck to all especially Bixa, I will keep you in my prayers....

bubbyNL
Posts: 1
Joined: Jun 2010

Hi there,

I'm a 56-year-old female living in the Netherlands. After being diagnosed with bladder cancer in March, and after hearing it was "the worst possible kind" (= extremely aggressive), I underwent a radical cystectomy in Belgium 3 weeks ago. The operation was successful, the care unbelievably good. I just came home yesterday and am having a very difficult time dealing with "temporary" incontinence. All of the scientific literature says it's possible to become continent again after doing pelvic floor exercises to strength the muscles, and the physiotherapist in the hospital, as well as the doctors and nurses said very much the same. I simply need to be "patient" and practice my exercises.

It's bad enough that I'm totally exhausted and have lost whatever muscle tone I had prior to the operation. (I feel like a truck drove over my body.) But having to go pee almost every hour during the day and 6-7 times at night is driving me crazy and exhausting me even more. I simply can't imagine this ever passing and being able to resume my life without wearing a diaper 24/7. Can you please share your experiences with me? How did you deal with this? I want to be optimistic, but this is so overwhelming...

Thanks.

ritz and glitz's picture
ritz and glitz
Posts: 2
Joined: May 2010

Bixa, I am a 63 year old, healthy woman who has battled superficial bladder tumors for 41 years. The secret is staying on top of the situation. I just had 2 removed 2 weeks ago and am starting BCG therapy next Tuesday. This will be my third go round with BCG. The first time was 7 years ago & it kept them away for 5 years. The next was 1 1/2 years ago & they came back after a year. So, we'll see how this next session goes. I make sure I get my cystos every 3, 6 or 12 months. The secret is keeping them under control. I seem to be the one that has fought these the longest so let me know if I can help. Ritz and Glitz

dpoe
Posts: 3
Joined: Jun 2010

Ritz and Glitz,

You had to have been really young when you started with this. I just had my tumor removed on 4/23. My bladder still seems a little sore and aching in my upper right hand side. I'm a nervous wreck. Mine was superficial grade 2 and he said I don't need any type of treatments so far. My life has fallen apart. I am soooo scared. How long does it take to feel a little less stressed?

Hopeican
Posts: 2
Joined: May 2010

Hi Dpoe, Ritz and Glitz,
I had a cancer removed (Transurethral Resection of Bladder Tumor (TURBT) on May 24th which my urologist diagnosed as "transitional" I asked him if this was a death sentence and he said it was not. My tumor was low grade and had not invaded the bladder wall. My surgeon says I will need to return for cystoscopy every 3 months. He said many of these tumors return but the procedure is to have them removed as they reoccur and that is why the 3 month check is mandatory. I am 66, am/was a smoker and he attributed my cancer to the smoking of course. The hardest task is to quit! My understanding is that if the tumor doesn't invade the bladder wall the prognosis is best. I too was told no treatments were necessary. My surgery was easy, no pain, and very little burning afterwards with urination. Of course, "cancer" is something that one doesn't welcome but I do believe your attitude can make a world of difference. I'm trying to eat a lot of broccoli, drink lots of water, and generally eat healthy. I had been involved in political action groups and now I'm working even harder in that area - stay busy, enjoy and love your family, friends, and pray. Due to back problems, I can't do heavy exercise but I would suggest any type including walking. The choice is to replace idle time so your mind doesn't go in the stress direction. Sounds like the three of us are in the same category except my doctor says BCG therapy is not needed. Ritz, can you tell me why you had to have it and what it is? Best to both of you.

Skid Row Tom's picture
Skid Row Tom
Posts: 118
Joined: Apr 2010

dpoe: I was also told that if the tumor (in my case two tumors) had not invaded the bladder wall, they were "superficial". I had six weeks of BCG treatments. I would imagine you'll have to go back every 3 months for a year, then every 6 months, and then yearly. The first check-up (after three months) is a biggie. If nothing is found, you can at least declare a moral victory. In some respects, you were lucky. It appears they caught it early. Because you and your doctor are "on alert", if something else occurs, you will most likely catch it in its early stages. Just KEEP ON TOP OF IT! I'm very conscious now of drinking plenty of water, peeing every few hours, drinking some cranberry juice and eating/drinking more tomato-based products, and eating healthier. I've always been a non-smoker. After the original outbreak, I've been cancer free since the spring of 2007.

ritz and glitz's picture
ritz and glitz
Posts: 2
Joined: May 2010

dpoe & PRIS42 - Sorry it's taken me so long to get back to this site. I'll try to check it more frequently. If you want to just email me at ritzandglitz@tampabay.rr.com I was only 21 when I was first diagnosed. I have never smoked & was always the youngest one in the waiting room. It is most important to have those cystos every 3 months. After a year you go to every 6 months & if all goes well every year. I had my third BCG treatment (3 of 6) this week and so far no reaction. This is my third go round with the treatments. The first ones got me 5 years & the second 2 years. Don't be stressed. In the whole scheme of things this is not as bad as what other people go through. Enjoy life & keep in touch. Andrea

Pris42's picture
Pris42
Posts: 12
Joined: Feb 2010

titz and glitz, not sure about the other gal but you definately helped me. I had five tumors in the bladder found the end of October 2009. I had surgery November 5th 2009 and two of the five were cancerous but TS1 I think was what they were called for kind and stage. They were removed and I had the BCG treatments. The part you helped with is since I just had my first three month checkup and was cancer free but while that is so and I am on top of the world with the news cancer free I also know that according to the surgeon and the Cancer Doctor my chances of getting more tumors there is 30 to 60 percent. They told me what you just said though the secret is to stay on top of it and keep up all my three month appointments then six months then once a year and keep watch so they can be found and treated with surgery tow of them this time they had to check out a ureter and kidney too both were fine but surgery and BCG treatments should take care of it if it returns and we stay on top of things. Some how it sounds more positive or reassuring coming from one who has been there done that though. Thanks for that I appreciate it greatly. Just went to two cancer survivor dinners which at first i wasn't sure about but they said you are a survivor from the day you are diagnosed any day you live past that. One was a dinner by the Relay for Life people I was on a team here the other put on by the cancer center in Effingham Illinois where I go to see my cancer doctor. Now I have started thinking the right way yes I am a survivor at 67 years young still enjoying to much of life and family and friends so surviving and enjoying life. Thanks again.

dpoe
Posts: 3
Joined: Jun 2010

What are all the healthy foods and drinks to drink. Did you go to big hospital or your local urologist. I went to my local urologist which was highly recommended to me. I wonder why I didn't have to have any type of treatments.

Skid Row Tom's picture
Skid Row Tom
Posts: 118
Joined: Apr 2010

I just drink plenty of water and pee on a regular basis. I've been a teacher for 30+ years, and a urologist told me that teachers and truck drivers are prone to bladder infections because they don't empty their bladder enough. I also read somewhere that cancer hates tomatoes (the acid). So, I drink a V-8 every morning and don't shy away from salsa and pasta sauce. Other than that, the normal sensible things -- eat fruits and vegetables and cut down on processed foods and meats. No radical changes.

I had the tumors removed in a hospital by a local urologist. It was during a cystoscopy under general anesthetic. The BCG treatments were started about two weeks after the cystoscopy. There was one treatment a week for six weeks. If the first round of treatments failed, he would have had to do a second six weeks worth of treatments. I don't know why your doctor didn't recommend BCG. You might want to ask. Treatment options vary among doctors, but BCG, I think, is an often-prescribed follow-up to superficial bladder tumors.

dpoe
Posts: 3
Joined: Jun 2010

Did anyone else's bladder feel tender to touch for a while after the surgery?

Skid Row Tom's picture
Skid Row Tom
Posts: 118
Joined: Apr 2010

I don't recall being sensitive to the "touch", but I felt a slight discomfort in that area -- somewhat of an irritation for a few days (maybe a week?). I drank a lot of water, and of course took my Cipro as prescribed.

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