Grade 3 diagnose while waiting open heart surgery.

17 years 6 months ago #1453 by cta7978
Paul,

Hmmm... Sounds like they performed the TURB and are (were) going back in for a re-turb or just a cystoscopy 2 weeks later? Also sounds like it was a single T1G3 tumor that was removed?

My non-medical opinion would be to not worry about the bladder cancer until the heart valve surgury is complete. Talk to your doctor and figure out when treatment can begin for the bladder cancer. Most likely they will prescribe a course of 6 BCG treatments, which are not actually invasive.. consisting of being catheterized for about 5 minutes and holding a biologic in your bladder for a couple hours.

Sounds to me like you have had all the necessary surgury already, they may be looking to take a biopsy of the TURB site just to make sure they got it all.. however not all doctors perform this biopsy (mine didn't), guess it all depends on how large your original tumor was and how confident they are that they removed it all (and took good margins).

Don't give up hope, T1G3 is still a superficial cancer and some people are cured of the cancer after the first tumor removal. Maybe look at the heart problem as a blessing in disguise (assuming a positive outcome), as they were able to dicover your bladder cancer before it penetrated into the muscle layer of your bladder. This early detection may have just saved your bladder and also your life.

Well, Hopefully you check back in to this site after your surgury and let us know how you are doing.

Chris A.
Diagnosed T1G3 - 3/01/06
37 yo, Seattle, WA

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17 years 6 months ago #1261 by wendy
Hi Paul,

Your English is great! Ik woon zelf in Amsterdam, al 23 jaar. Waar woon jij?

I'm sorry to hear about these two very scary health problems you're facing, but I trust your doctor when she says take care of the heart problem first. You had the bladder tumor removed, you will see in two weeks the state of things in the bladder. If there is still some tumor left, it can be removed again. A stage T1 tumor would give you enough time to have the heart surgery first. Maybe you won't need further treatment in the bladder. There are treatments that are relatively easy to take. More information about treatments can be found in the section for superficial bladder cancer here:
blcwebcafe.org/superficialblca.asp

It's wise to learn the territory a bit, doctors tend to share as much information as they think you want to know, so if you you want all the details you really must push. It's a bit better here in Holland, I think. I'm a breast cancer survivor, going to AVL in Amsterdam, it's a good institution, the best. In fact if you can follow up there for your bladder cancer, after the heart surgery, you would be in the best hands.

Take care, and keep us posted.
Wendy

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17 years 6 months ago #1251 by dave
HI,

Now facing a T1G3 diagnosis myself, after almost eight years of dealing with this disease, here are a couple of links I've recently been using to think about the disease now:

www.medicalnewstoday.com/medicalnews.php?newsid=43872

www.urotoday.com/browse_categories/bladder_cancer/aua_2006__high_grade_t1_bladder_cancer_who_should_undergo_early_cystectomy.html

These links can be copied and pasted into your browser. From what I can tell, T1 disease is nothing to write home about, can be an opportunity for an early cure, and the beginning stage of just how tricky this can be to manage.

Dave Simms






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17 years 6 months ago #1247 by skypilot
  :-/Welcome: I was told in Feb I had t-1 then 6 treatments of BCG then otehr turb in May still T-1 but Doc said to remove, But I waited I had another URO do a  turb last week still a T-1 but I am drinking Isaic tea and lots of natural herbale meds. I am trying to get thru my sumer work cometments. Then In oct remove it if nessary but one thing for sure we are all diferant and may not progress in the same way. i took a Gamble and it is working out. Good luck these disitions are not easy. PS I was going to have I neo done by robotixcs 2 weeks ago but insurance woyld not pay. they say it is to new. It cuts down on recovery time> Don

Hanging in there!

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17 years 6 months ago #1246 by Rosemary
Paul,
I'm not sure that you need to worry so much about the bladder cancer at this point. If I read you right, I have the same stage and grade as you do, and so far, everything has gone okay.
The added stress of this worry cannot be good for you. I think you should let your doctors be your guide in this.
Though I'm not getting the whole picture, it sounds as if the bladder cancer may be treatable.
I know it must be hard to do, but please try and catch your breath...

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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17 years 6 months ago #1245 by rentanag
Paul,

If I read what you say your grade and stage are T1G3, you're waiting awhile may not be as critical as if it were a muscle invasive type cancer.  That is something you need to clarify with your urologist/surgeon, but we do have a sort of resident expert here on the WebCafe and his name is Chris and his story is under cta7978.  I don't recall off the top of my head which forum he's posted in specifically (his story), but it is there.  You could also just look for any one of his many postings, when you find it click on his member name and it will take you to his profile.  From there you would be able to send him a personal message, email, or whatever type communication he offers.  I think he could help alleviat some of your fear, as well as give you some solid information on the disease (Superficial Bladder Cancer).
Best of luck and God Bless,

Lou Graham

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