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46 year old male Newly diagnosed

markl1966
0 Recommendations

Hi Everyone,

I have just been diagnosed with bladder cancer, starting my BCG treatment next week. This looks like a great forum to share. I am very happy I found it.

Still in a little shock, trying to get a handle on all of this.

I am a 46 year old male, I have never smoked. Considered a low risk for bladder cancer, oh well.

I had 2 small tumors removed, pathologist graded it high with CIS.

Is there anybody out there with a similar bio/diagnosis? Anybody with CIS who did well with the first round of BCG, with no recurrence?

I would love to hear how you are doing.

Thanks

Explore topics in this discussion:

Exercise Cancer Surgery Neobladder Bladder cancer

18 replies

antuck

Hi markl1966- You have found a great site with lots of information and great people. Gather up all the information you can here. It will help you through your journey. Click on the links for "Newly Diagnosed" Very helpful information there. You'll find several people who have the same diagnoses as you.

It is a shocking adventure but remember you can get through it. As far as BCG goes it is different for each person. Some it works on and some not. Sometimes it can take several tries, and some take to it right away. Don't let the numbers get to you. The biggest advice I can give, is to find a Uro that you are comfortable with and they know about bladder cancer. Never be afraid to ask questions or even seek a 2nd option. You'll find here 2nd options are most welcome.

I'm sure you'll some more replies for people with the high grade BC. Take care and good luck!

Andy

15yrsurvivor

Welcome to the website! Since we do not share a common history, I cannot give advice about BCG or CIS, but there are plenty here who can.

I was just reading your reply to Eudy, in his "Please Help Me" discussion. I agree 200% that the more you know about this disease, the better you feel and there is a sense of some some degree of control! Maybe we are delusional, but I don't think so. An understanding of the biological processes that are underway can help you feel empowered.

Again, welcome!

Keith1

Hi,
Welcome to our community. I was diagnosed with CIS in Dec '95. It took 3 rounds (18 treatments) to get the 1st all clear. It stayed clear for about 2 years. Then 18 more treatments and then maintenance treatments. When the cancer came back for the 3rd time in May of '03 I had a radical cystectomy and got a neobladder. I am still cancer free since that surgery. I wish you well.
Keith

lsh

Welcome to BCAN. I was diagnosed a little over a year ago with a high grade T1 tumor. I went to MDAnderson for a second opinion where they restaged me to make sure there was no muscle invasion. Having bits of muscle in the sample sent for pathology is important if your tumors are T1. My doc there recommended BCG. So far I have done 6 induction treatments and two rounds of maintenance(3 weeks each). I have been all clear so far. At my last scope, my doc said that maintenance will be every 6 months now until I can't stand it any more or until I hit the 3 year mark---which every comes first.

I have had pretty intense side effects from the third treatment forward. They lowered the dose on the second round of maintenace and the side effects only lasted a few days.

I would recommend that you get a second opinion from a major cancer center.(You will find that we all believe in second opinions). I'm happy to answer any questions you may have.

Lynda

markl1966

Thanks Andy,

I am finding the quest for info always finds me looking at the statistics, trying not to dwell on them as I know every case is different, but I am a computer tech, so numbers are a big thing for me.

My main goal now is to maximize my chances for a positive treatment.

I exercise alot, weights and biking, anybody know of any concern with exercise causing an issue with BCG treatments?

thanks in advance for anyone who replies to my post.

Eudy

Hey Markl1966 Welcome to the family, I just join about a week ago and these people really do make you feel like family. I love them all. They have already been a great help for me. I guess all drs. feels different about when to treat or not. I was dia in july had it removed with turb and this will be my second cysto to check this month and still no treatments? Let me know how it goes, I will be praying for you.

markl1966

Hi Keith,

Thanks for the post. Glad to hear you are cancer free again. I had my TUR in a hospital, 2 small tumors less than 2 cm. Is a TUR generally done in a hospital setting? I have read sometimes they are done in a doctor's office.

markl1966

Well from what I have researched so far, not having to have further treatments, means you might have had a low grade tumor, lower risk, so no further treatment, just following closely.

That is what my doc inittially told me after the initial scope. He said it thought it was one small tumor, no problem, most likely no further treatment, non life threatening.

The pathology showed CIS, so my is now high grade, so I need BCG, but still very treatable.

So I would say if you are not getting any further treament at the moment, that is a good sign.

Please get a 2nd opinion, I did and the 2nd doc, a Director at Harvard Medical, came to the same conclusion, it made me feel more secure in my treatment. Having complete faith in your Doctor is a must, but that doesn't mean you can't question him.

Good Luck
Mark

markl1966

Thanks for the info Lynda, Sounds like it is working for you. Best wishes for the future.

lsh

Glad to hear that you already got that all important second opinion and that the docs agree. Usually TURBs are done in a surgery/hospital setting, but every now and then a docs does one in a regular cysto. I'm not sure how much it hurts...I was out. Good luck to you with your BCG. If you start having side effects, there are meds your doc can give you to help you. Let us know how it goes.

Lynda

roadrunner

Hi Mark,

I have absoleutely NO suggestions with low grade b/c,,,, so I wanted to say the shock of it all is very tough ,,,my husband lost his bladder,,,,,,,symptoms,,,,turbt,,,,,,bladder out.....that fast for him,,,but all my friends above are loaded with info....good luck with bcg......bladder cancer gone....

Ginger

JerseyGuy

Mark,

Welcome to our community. This is really a great site with great people. You and I seem to be on a similar path. High grade tumor and CIS. BCG has worked well for me. A few bumps along the way but all is good. I'm 18 months into this war and I am here for the long haul. Battles will be fought and won and with a soild medicial and support team you will win too.

Glad to see you got a 2nd opinion. Harvard, very good, as you need to go to a place where this is seen and treated on a daily basis.

Stay strong, and again welcome to our BCAN Community.

Best wishes,
Battle on,
JerseyGuy

Memi

Hi Mark,
My diagnoses was T1 high grade CIS. Have had the initial 6 treatments of bcg. The biopsy done last month, after the 6th treatment found no cancer cells. It worked!!!!!!!! I will start maintenance treatments next month with quarterly cystos to check for recurrance.

Memi

markl1966

Hi Memi,
Great news! Keep me updated.

silgal

Hi Mark, welcome and good luck .... I know you will get lots of responses. Know you are not alone and keep us posted on how you are doing...
michelle

DavidW49

I was diagnosed 2 moths ago with T1-high grade BC. I was and still am in shock. I'm a 49 year old non-smoker who had never heard of BC. My first TUR uncovered 3 tumors, one large (3cm) and two small. My second TUR showed clear. I got my second opinion from Johns Hopkins, and they, along with my Uro, recommends (and I agree) that, despite the high grade, based on my age and history, we try and save the bladder. I am starting BCG treatments on 11/10. I'll let you know how it goes for me.

David

Kyle-MO

Hi Mark,
Welcome to Bcan, and this Inspire community of friends. There are several members that will reply to treatments for CIS, but I don't have any experience with treatments for it. Gain all the knowledge possible to be proactive in your treatments.
Take care,
Kyle

nancynursez637

Hi Mark, welcome, I do not have your kind of bladder cancer but know there are a bunch here who do.
This is a great site, and so informative.

We wish you well with your treatment and encourage you to research and read. Proactive patients get and stay ahead

NancyN

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