Now joining

[cheryl9]

Diagnosed May/14 after years of blood in bladder and missed diagnoses along the way. Consider myself extremely fortunate: main tumor was 3 cms, non-invasive and “mostly low grade”; multiple superficial tumors on left orifice but no stent required. 6 weeks BCG. September cystoscopy there were 4 tumors, non-invasive, “mostly low grade”. 3 weeks BCG followed. Feb/15 cystoscopy 1 tumor and removed that day. 3 weeks BCG followed.Then we hit May cystoscopy: non-invasive but high grade. Tumor removed June but things didn’t feel right. Took a month to get surgery results and by then I knew for sure things weren’t right. I was sure there was more cancer. Doctor did another cystoscopy and, sure enough, there was a tumour but at least it could be removed that day. Now doing 6 weeks BCG. Pretty scary going high grade. Biggest fear is eventually losing my bladder. I am the sixth person in my family with bladder cancer. Three of us are currently alive and one has lost his bladder. At least the other three didn’t die of bladder cancer. Sorry, now rambling. Anyway, hello to you all!

[Rick B]

Hello Cheryl,

Sorry to hear you’ve been diagnosed with BC but glad you reached out to BCC. I was diagnosed with BC June 2012 and after 3 surgeries (TURBT) like yours and 20 BCG treatments (6 after each surgery plus 2 maintenance treatments 6 mos after the last surgery) over a period of 15 months I am now cancer free and have been for 2 years. I see my Urologist regularly and was just moved to 6 month (previous 3 mo) follow-ups.

There are many visitors to this site with varying experiences so don’t hesitate to ask questions plus there is a wealth of information for patients and caregivers (refer drop down under Facing Bladder Cancer) which you’ve no doubt discovered.

Wishing you the very best…keep us in the loop on your progress.

Rick

[Jack Moon]

Hi Cheryl

I was diagnosed in 2005 with low-med grade tumors. I did have recurrences of low grade bladder cancer in 2006 and 2007 while I was on BCG treatments.
Sometimes it takes BCG a while to boost our immune system to fight off the cancer cells. In my cases following my 12th treatment the cancer did not return. I had a total of 30 BCG treatments and have been cancer free since 2007. Hopefully the BCG does the job in your case too.
Wishing you all the best and please keep us posted on your journey.
Jack

[cheryl9]

Thanks

Good to hear others have had success after multiple surgeries and BCG treatments.

I try not to think about the years of blood in the urine and doctors/nurse practitioners missing the boat on it and just assuming it is a bladder infection. When I think about this I remind myself of one word: non-invasive. I consider myself extremely lucky that, after having the cancer so many years and the tumor being as big as it was, that it was non-invasive.

Anyway, I can’t say enough about the resident who picked up on the cancer. Especially considering that the doctor he was working under disagreed with him. The doctor went up one side of him and down the other for suspecting cancer. Doctor finally told the resident that, if he thought it was cancer, then he had to order the tests. The doctor refused to order tests. Even though the resident had no hospital rights, he ordered the ultrasound anyway. Very glad the resident was that gutsy. So, after the hospital and health district pretty much lost my ultrasound results because there was no doctor name on the results (couldn’t use the resident’s name because he didn’t have any rights), the results finally got to my doctor and, yes, the rest is history.

Have to mention compliments to the urology office. Cystoscopy scheduled for the next day and surgery done 11 days later. The office has been fantastic to deal with and to get things done fast. I have been bounced around between urologists in order to get the surgeries and cystoscopies done as quick as possible but at least the office asks each time if it is okay. Have never actually been to the urology office as I live out of town and the doctor always phones with results. I guess I don’t need formalities. I want results as fast as possible!

Sorry I am rambling again. Guess I need to get it out of my system. It’s a lot to deal with then add a disabled husband, mentally ill child and an open house policy for young people needing a place to get away from it all and it doesn’t leave much time for coping with BC.

No, I am not feeling sorry for myself. I wouldn’t give up helping young people when I look back at how we have made a difference in the lives of many young people.

Taddy ho for now!

[marysue]

Hi Cheryl:

Welcome to Bladder Cancer Canada, the site that no one wishes they had to belong to. However that being said; vent all you want as people here understand what it is like to try and cope with the diagnosis and new learning curve that comes with this disease on top of all their other life challenges. You’ve got a fair bit on your plate.

As Jack has mentioned reoccurrences can happen while doing BCG. Hopefully the drug will kick off your immune system and this will wind down for you soon. I was diagnosed in 2008 with 6-8 high grade non-invasive tumours and then a single tumour of same stage and grade in 2010. I had a set of 6 BCG after the first TURBT and 15 after the second TURBT. I’ve been clear since 2010 and only need annual cystos now.

And no, you shouldn’t give up your work with young people. It is something that means a lot to you and gives you purpose, meaning and satisfaction in your life. My suggestion for now, is just do what you can do with this work and call in reinforcements for the stuff that you can’t manage. You are to be commended for this as it isn’t an easy task dealing with troubled youth.

Keep in touch and let us know how you are.

[cheryl9]

Thanks

Am now trying to get the word out about this site. I find it way better and way less scary than the Cancer Society, Mayo clinic sites. Just heard there is another person in my community that has been diagnosed with BC. On the hunt for the name so that I can make contact and help ease her anxiety levels. Also found out there is a local person that has had 51 BCG treatments. Wow! Sure wish her the best and this gives one a lot more faith that the doctors will keep at the BCG instead of jumping to remove the bladder. That is probably my biggest fear: no bladder. Anyway, it will be what it will be. If I keep telling myself this, someday I may actually be comfortable with this.

[millize]

Hi Cheryl
Welcome, to a safe place tobe.Here we laugh, cry, and get down right silly.There are very awsome people here some you’ve already met.ask any questions you need to.

[Author]

Posts