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Help! Questions before surgury

9 years 7 months ago - 9 years 7 months ago #32173 by Patricia
Hi Ann,
a month a long time to wait for a biopsy..TURB...I might suggest someone at Mass General to do the TURB as they are very experienced and have a great pathology department. Dr. Scott McDougel is chief of the dept
http://www.massachusettsgeneralhospital.org/doctors/doctor.aspx?ID=16888

You might as well go to a NCI designated center to begin with as less likely to make mistakes getting all the tumor and then proper staging of it. They should get you in quickly as thats all they do..they're not in an office 4 days a week.

Personally i think the best uro/surgeons are in NYC at Memorial Sloan...but if you must stay in Mass..go with the big guys!! When i had my second TURB i got on a plane and flew to NYC to Memorial Sloan and the great Dr. Herr. They scheduled me in less than a week. They are in the OR 4 days a week. My TURB was outpatient, no complications, no catheter, and i walked out of there l/2 hr after i woke up and no complications.

If you can go out of town let me know.
Pat

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9 years 7 months ago #32170 by annt64
Thanks again Mike! I will take a look at your other post and the guide.

I'm finding out the more I know the better I feel. I will also see if I can get my husband to join in the discussions. He's the type to not talk about it and wait and see but I know the wait is getting to him too.

Ann

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9 years 7 months ago - 9 years 7 months ago #32169 by mmc
Ann,

I forgot to define TURBT for you. Sorry about that.

TURBT is an acronym for transurethral resection of bladder tumor. This is a surgical procedure that patients with a bladder tumor may undergo. The surgeon may take a biopsy, or a sample of tissue, from the tumor, or he may completely remove it. As part of the surgery and in the case of cancer, he may also burn away any remaining cancer cells in a process called fulguration.

In most cases, you can use Google to look up acronyms and words we use here.

Some very common ones are:
Cysto = Cystoscopic exam, a look inside the bladder, through the urethra, with a cystoscope.
Uro = urologist
RC = Radical Cystectomy (for men, the prostate is also removed; for women, ovaries, uterus, and part of the vagina are typically removed)
T0, T1, T2, T3, T4: Stages of bladder cancer. T0 is just the surface layer, and the higher the number the deeper into (or through) the bladder the cancer has grown.
G1, G2, G3, Low grade/High grade: indicators of how aggressive (or not) the cancer is.
neo = neobladder (a type of urinary diversion where the bladder is removed and replaced with a newly constructed bladder made from a segment of intestine). The new (neo) bladder is hooked up to the original plumbing.

IP = Indiana Pouch, another uringary diversion but rather than connecting to original plumbing, the internal pouch is attached to a stoma that it often routed/hidden at the navel.

IC = Ileal conduit, rather than create a new bladder, the ureters are connected to a stoma (typically toward the side of the body) where a bag is attached to collect the urine output.

BLC = Bladder Cancer (It seems that people always think BC stands for Breast Cancer, so we've opted to go with BLC for the most part but some of us still use BC and then we get all sorts of private messages telling us we messed up. :) )

BCG: An immunotherapy agent of live tuberculosis vaccine instilled into the bladder to create an immune response where the bladder then kills cancer cells. Highly effective for CIS (Carcinoma In Situ).


Your husband is too soon into this to be worrying about RC and diversions yet. The majority of the time it is low grade and superficial (just the surface layer). Non-invasive is probably a better word than superficial because sometimes people interpret superficial to mean trivial and that's a bad interpretation.

If it is low grade/ T0, then treatment is often to just remove the tumor and keep an eye on it (watchful waiting). A cysto every 3 months for a couple of years, then every 6 months for a few years, then every year....

Sometimes, low grade/T0 is treated with BCG treatments or mitomycin (a chemotherapy agent that is instilled into the bladder). If you look up this drug, don't freak out about side effects because they are the ones listed for when mitomycin is being put in the vein. When put in the bladder it does not get into the blood stream so it typically only causes irritation of the bladder.

Feel free to have your husband join in this site as well. He can ask anything he wants. Nothing is too personal here and the only dumb question is the one not asked.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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9 years 7 months ago #32168 by mmc
Ann,

Pat is the best one for getting names of the best doctors. She's done tons of research and I always defer to her judgment for that. I'm sure she will be online later today and will give you some recommendations.

In the meantime, I suggest reading this post I wrote previously: Major Bladder Cancer Center . Within that post is a link to a guide I put together to help bladder cancer patients understand the path(s) through this. Here is that link: Patient Guide to Bladder Cancer Treatment

A few folks have printed it out (it's a flow chart) and taken to their doctor to use a frame of reference to help facilitate the discussion.

I hope you find this information useful.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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9 years 7 months ago #32167 by annt64
Mike,

thanks so much for the quick reply. Sorry about the terminology, I'm still learning...

It's good know that this isn't a quick spreading cancer, that helps.

I have suggested to my husband that we contact Dana Farber since we live in central Mass but his primary doctor told him to hold off until after the surgery and see what, if any, additional treatment is necessary and then consider either Dana Farber or Mass General. I think he would still be willing to see someone else before the surgery since his Urologist isn't very helpful. She was very blasé about finding the tumor and not thinking they were going to find anything, he was shocked and didn’t know what questions to ask.

We just went for the pre-op (not sure why so early since his surgery isn't until 6/16) and they didn't have much info for us either.

If you or anyone has a suggestion for a good cancer doctor that specializes in this type of cancer in New England, I would greatly appreciate the help.

Thanks,
Ann

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9 years 7 months ago #32165 by mmc
It does seem like a long wait to get the TURBT done.

Even though the blood in urine seems to be more often, bladder cancer isn't one of those things that just goes ripping through the body so I wouldn't panic about that.

However, since they have seen the tumor and it is going to take so long, you might want to check out getting into a top bladder cancer hospital for the surgery. They tend to get batter staging, have more specialized doctors (in bladder cancer specifically) and better pathologists (who evaluate the tissue samples).

Read all you can on this site, ask all the questions you can think of.

It is important for you and your husband to know that bladder cancer is VERY treatable when caught early. It sounds like his has been caught early. However, you certainly want to move quickly on getting an accurate diagnosis and the right treatment.

It is also important to get to a top bladder cancer doctor. This is a sub-specialty of urology but many urologists will say they can handle it. You don't want someone who can handle it, you want someone who specializes in it.

Even if he doesn't get to one for this initial TURBT (which I highly recommend), he should absolutely get to one if bladder cancer is diagnosed. He should have a follow up TURBT within 6 weeks of the first one. This is done to confirm margins and ensure that they got it all. Depending on stage and grade, the treatment plan will be established.

Where are you located? We may be able to recommend a top bladder cancer near you. You may have to travel however and if so, it is worth it. It doesn't mean that the local urologist (uro) wouldn't be able to do the follow up treatment, but you want to be sure that treatment plan is the right one.

If your uro has a problem with him going to a top bladder cancer doctor, then you need a new uro anyway.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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