Do I Feel Lucky??

10 years 7 months ago #34265 by BoilermakerJim
Do I Feel Lucky?? was created by BoilermakerJim
Hello All - Not sure if this is the appropriate forum to post this in but...I am new here but not new to BC. I am now faced with a very difficult decision and don't know which way to turn.

My background: I was diagnosed with BC in 2005 and underwent TURBT. Pathology came back TA, G1. I received the 6 BCG treatments and did all of the follow-up, i.e. cystos every 3 months graduating to every 6 months. The only hiccup was a couple of spots my uro detected during a routine cysto and those were cauterized (sp?).

My last cysto was in August and at that time, if I was once again all clear, I was to graduate to cystos only once a year. Unfortuantely, my uro spotted some problem areas and a FISH came back showing abnormal cells. Another TURBT was done and this time the pathology shows TA, G3, very aggressive.

My uro, after doing some research says there is no clear answer as to what to do in this case. On the one hand, the cancer did not reappear for 4-1/2 years but on the other, it did reappear and is much more aggressive than the first go around. He says, and it's been seconded by Dr. Richard Bihrle at IU Med Center in Indianapolis, that trying BCG again is a valid decision and that a radical cystectomy would be a valid decision.

I feel like I'm at a proverbial fork in the road without even a hint of what is the best course of action. It truly feels like 50-50. I surely don't want to lose my bladder and endure the trials of surgery, rehab, etc.. but I'm also not one to leave things to chance; and according to both doctors there is a chance (probably small) going the BCG route for this to end up being lethal. I mean, even if it's a 5% chance, what if I'm in that 5%? If you can't tell, I'm not much of a gambler...I don't even buy lottery tickets.

Sorry for the novel, but does anyone have any words of wisdom? Have you faced the same type of decision? Any help would be greatly appreciated.

Jim

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10 years 7 months ago - 10 years 7 months ago #34266 by Alan
Replied by Alan on topic Do I Feel Lucky??
Jim,

I see you are a Boilermaker! I am too. 1974.

Glad you found the site and sorry your BC has graded higher. Your Doc gave good advice. As long as it's not muscle invasive BCG is a great option but, other here have also said to heck with it and done the RC. Both are valid. There are people that monitor this site that will chime in with more help such as how good the docs are at IU. I know Pat has indicated some are very good.

While BC is nothing to fool around with I was DX 2 1/2 years ago high grade (G3) but opted for BCG and am still clear to this day. Lots of variables here as everyone is different. My BC was caught very early- just had hit the first layer.

Keep checking back for more opinions and more info. This is an incredible sitet for info. Browse around on older subjects and forums.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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10 years 7 months ago #34268 by mmc
Replied by mmc on topic Do I Feel Lucky??
Jim,

Since you tolerated BCG before, there is no reason to expect it to be any more lethal that it was the last time. BCG is often effective. It can be lethal if you get sepsis but that is why your uro should not administer it if you have blood in your urine. Since you are now high grade, the standard treatment is the 6 initial doses followed by maintenance doses. Research has shown that the maintenance doses are VERY important. This is sometimes considered unneeded in low grade cases but I think the jury is still out on that one.

Whenever you get surgery for anything that is going to put you under anesthesia you have to sign some paper about the risks and that also pretty much always says it can be lethal.

You have to balance the risk with the reward. If BCG works for you and it keeps this at bay and you keep your bladder, that's a good thing.

If it doesn't work, and you get a high grade recurrence or any progression, then that seems to be the time recommended for RC.

I had my RC 2 years ago because I failed BCG (bad reaction) two years prior to that and mine came back and became invasive.

An RC is pretty always a valid option but surgery carries risks as well.

Ask your uro about the antibiotics that are used when a reaction to BCG happens. If you go that route, it may be worthwhile to have him give you a prescription for them so you have them on hand if there is a problem.

Many, many people get BCG. There are side effects from the medication but that is what shows that it is working. The lethal part is if it gets into your blood stream which should not happen if there is no blood in urine at the time of administration. Did your uro say why he thinks it would be higher risk this time versus last time you got BCG?

Also, consider discussing the dose strength with him. Dr. Lamm indicates that even low doses have shown just as good efficacy and there is a lower risk of severe side effects.

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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10 years 7 months ago #34270 by martin
Replied by martin on topic Do I Feel Lucky??
I understand your concern but nothing in life is without risk. To me BCG would be the decision with close watch.

Let me add another option: in Europe and Japan more and more institutions use bladder preserving therapies (i.e. radiation and chemotherapy) for muscle invasive tumors with same or better survival rates as RC. In the US, however, you can only get this in a clicinal trial.

Check out this:

www.ncbi.nlm.nih.gov/pubmed/20811698

T1G2
TUR 05/10/2010

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10 years 7 months ago #34273 by Cynthia
Replied by Cynthia on topic Do I Feel Lucky??
The problem with bladder preservation is that if it fails the radiation can cause surgical complications. I am an alumni who failed the protocol and it is a very hard course and can leave you with other health complications. Unless something has changed the clinical trials are for invasive as systemic chemotherapy is not considered effective against non muscle invasive.

As for the choices you have neither would be considered to be wrong. It is hard when faced with having an elective Radical Cystectomy. There will never be the day when the doctor will be able to say you made the right decision and you will always wonder if you did the right thing. On the flip side it is possible that the day will come that you wished you had. On the other hand you could do BCG and find that it works again for years or forever. Age can be a factor here if you are disease free for ten years and have to have an RC will it be more problematic at that stage? Have you looked at the statistics between survival rates for BCG TA High grade versus Radical Cystectomy is that your first priority? This is a hard choice and is different for everyone for different reasons. Ask questions be your own best advocate and make the decision that is most right for you. And we will be here to support you all the way no matter what you decide your treatment path will be.

Keep us informed please.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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10 years 7 months ago #34275 by BoilermakerJim
Replied by BoilermakerJim on topic Do I Feel Lucky??
Thanks for the replies everyone. Yes Allen, I am a Boiler, class of '84. I can't wait for basketball season. We should be pretty tough. Love football but it seems we've been cursed this year with all the injuries. 2-1/2 years cancer free with BCG treatments on a G3 gives me hope.

Mike, I've lurked here since August when my reoccurance was found. I really appreciate you insight and all the help you've given to so many, including me. What I meant by BCG possibly being lethal was if the treatments were unsuccessful and the cancer spread before being detected. There is that possibility because I've asked my uro and the doctor at IU that very question. According to them it may be a small possibility but it is possible since this time around the cancer is so aggressive.

I probably will decide to do the BCG, maintenance, cystos, etc... but the thought of doing something (RC) that would "cure" has merit and is appealing in a way. I've been doing this for 5 years and now face another 3 minimum, which at any point the cancer could reoccur. Hopefully if that happened it would be caught in time.

Sorry, I'm rambling now. I'm just uncertain and afraid I'm going to make the wrong decision.

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