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Mom newly diagnosed

14 years 1 week ago #1678 by star
Karen I know this feeling. In Feb 2006 my own tumor was 1/2 the size of my bladder and the DR'S said the same thing and it was a mess. The tumor was sitting on ureter area and they reconstructed a part of it. I have had 4 surgeries since Feb and starting the 3 round of Bcg and it has really not been that bad mainly tired but I am also going through menopause and my job is rough on the body. The treatment is painless for the most part. Here is how it was explained to me: The tumor being so big sloshed around shedding cells in my bladder every time I moved and after the 2nd surgery to finish up the mess from the first those cells chill and may come to life-not knowing how long the tumor was there the amount of shedded cells can not be determined.
 Agrgessive action with BCG and scopes so far has been the route taken.
The surgeries have painless for myself and basically the cath was more tramatic at first -coming home with it and painful-this depends on the area where the scraping takes place. I was terriffied of the cath but now very easy and even you can take your own out after the wait period at home. Infections have come with this but the meds have help. I am 42 and never been truly sick so this is still new par say to myself.
 Mail me anytime if need be.    Prayers to your mom and your family.   Star  

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14 years 1 week ago #1632 by mikmckna

This is not meant to scare you or your mother but I did want to say that 2 of the best BC centers (Mayo & John Hopkins) follow the protocol that any T-1, G-3 (High Grade) cancer found on initial TURB shall be followed up with a 2nd TURB (aka Re-Staging) before any treatment. Staging cancer is key to hte proper treatment plan and regardless of the final staging... successful treatment plans are available. There may be others, but My Uro came from Mayo and I had my 2nd opinion at Hopkins. I personally did not want to bother with a re-stage myself but when they showed me reports that when re-staged, the initial TURBT was understaged from 40% - 50% of the time (depending on the report).

Since treatment for T-2 is very different from T-1, I would say you want to be certain and Re-Staging is the way to do so.

Believe in yourself,
T1-G3, CIS
RC w/ Neobladder 8/22/06

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14 years 1 week ago #1631 by wendy
Giving a post TUR dose of mitomycin is fast becoming the new standard and is recommended in the latest European guidelines, and starting to become used more and more in the US, so your doctor sounds pretty up to date.

Treating T1, high grade bladder cancer can be controversial though, so I hope she has experience with this type of cancer.

Did you see the path report? Just wondering.

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14 years 1 week ago #1630 by kholbie
Thanks for the reply, Wendy. She's being treated at Baystate Medical Center in Springfield, MA. The Doctor did say she was sure that she got it all, but I will mention these studies to her and my mom. She also did a post-op installation of mitomycin (SP?) to prevent seeding. Is this common?

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14 years 1 week ago #1629 by wendy
You should have every reason to hope that this is a managable condition. I've known many others with large high grade tumors, T1, that respond to BCG completely.

I hope the doctor is sure that he got it all, recent studies are saying that with large, high grade T1 tumors, it is wise to go back in a few weeks after the first TuR removal and do a second TUR before beginning treatment. If there is residual tumor it can effect treatment and prognosis.
There are some references to this info to be found on this page, in the side bar:
http://blcwebcafe.org/superficialblca.asp , where at the bottom of the page are the latest European recommendations for T1 tumors: (excerpt)
*The visual judgement of urologists in superficial bladder tumors is very good.
*Second resection is indicated whenever insufficient material is delivered and in any T1 G3 tumor. In the last infiltrative tumors are regularly found. The treatment largely depends on prognostic parameters.

If the doctor or your mother are not amenable, don't worry, many tests have shown that BCG can also obliterate existing marker lesions that are left in the bladder just to study them.

Where is your mother being treated?

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14 years 1 week ago #1628 by kholbie
My 69 year old mother was just diagnosed with stage 1 high grade bladder cancer. The Doctor said that it was "the biggest tumor they'd seen in their practice in a long time". But they got it all and she starts her first 6X BCG installations this week.

It's my job to keep the family informed of what is going on. I've spent the last few days stressing to everyone (including Mom) that at this point, we have no reason to believe this isn't manageable. But it's really hit me hard today and I'm having a difficult time not bursting into tears at every moment.

I don't even know if I have a question at this point. I just want to help my mom as much as I can. Any advice on what we can expect with this first round of BCG?

Thanks for listening.


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