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Newly diagnosed Alanjay

9 years 1 month ago #36474 by sara.anne
Alanlee, you are NOT over-reacting to be doing your research!
The more you know, the better you will be able to direct your treatment and recovery!! This IS a scary diagnosis...been there, done that...and it helps to be in control of the situation. Knowledge makes that possible.

As others have already told you, be sure to get your pathology report. If you are able to share it with us, we can give you some hints and suggestions. This disease can be quite do-able and we are all here to help.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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9 years 1 month ago #36471 by alanlee
Thanks for getting back to me so quickly folks and I will check out your link Mike after I reply to you and Jimswife.

Mike i dont know what a TURBT is and maybe I had that but if its that roto rooter thingy for the prostate, no I passed on it for now, but will probably get that done in due time. I assume that BCG is the stuff they inject through the catheter and with follow up cystoscopes 3-6 months after that if it works. I hope I dont even have to do that much, but whatever I need will be done. The doc told me that i will be his "pal" for many years...lol, as I have enough issues in that area.

I live in south florida and already know that there is a mayo clinic group somewhere around here and there are plenty of really great doctors...my uroligist came highly recommended, is young and seems to be on the ball, but i will get a second opinion if my lousy HMO says it is ok.

I am not sure if I need an oncologist at the same time yet, but I guess i will know more Wednesday....Mike you were right about only recalling every other sentence after the cancer word, but my wife recalls him telling her that it didnt look invasive, and I dont need to update my wills and trusts! lol....I hope he is right......my wife also feels I am already overeacting just by being on the computer and doing THIS.....but I do have that pesky depression/anxiety disorder so she is probably right. I hope it didnt come off like that in what I have written to this point.

Jimswife, I read your story about your husband and hopefully he is mending well, and will get back to his (and your) usual routines! I've read some really good bladder replacement surgery stories, thats for sure!

I will keep everyone updated.

Alanlee

2/2011: diagnosed with non invasive Type1 stage1...and had turbt in march....first follow up 5/19/11, had laser again as it re-occurred.
10/12/2011 TURPT with more bladder laser....still non invasive..
11/17/14 diag. with CIS non invasive, beginning BCG 11/26/14
2/2015 BCG did not work, had another...

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9 years 1 month ago #36469 by mmc
Alanlee,

By the way, even if it is cancer (which we don't know for sure yet) you won't "feel like a sick person". There is no feeling to it at this stage of the game. Doesn't sap your strength or make you walk with a limp or anything.

If you do have depression though, you should talk to your doctor about possibly increasing the meds for a short period of time. DON'T adjust any medication without getting approval from your doctor though. It's really important not to mess with depression medication and only take it as directed by your doctor.

The depression can certainly make one feel like a sick person, but not really early stage bladder cancer.

A positive attitude is a tremendously useful weapon at a time like this. As Cynthia often says, "Chin up!". :)

Mike

Boy, am I the chatty one today!?! Jeez! Sorry folks--just one of those days I guess. :D

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 1 month ago #36468 by mmc
Alanlee,

If you ever wind up with another catheter in, be sure to have some KY jelly. Put it on the catheter hose around the point of entry (and keep it well lubricated) and it will eliminate the painful part of growing and shrinking. I hated that! :(

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 1 month ago - 9 years 1 month ago #36467 by mmc
Alanlee,

Welcome to the club. Hopefully, someone can snip this post from here to start a brand new thread for your story.

Your situation sounds similar to beginning of mine. Also had enlarged prostate and various prostate issues. Also had blood in the urine. Didn't go the emergency room but my regular doctor referred me to a urologist.

Went to him and he did a cysto in the office, found a red spot about the size of the pinky finger from the top knuckle up. I was going on a two week business trip so we scheduled the biopsy (in hospital cystoscope and TURBT) for when I returned.

Sure enough, it wound up being CIS (Carcinoma in Situ) which basically just means a flat cancerous tumor.

Sorry to say, but most of the time when they see a "red spot", it winds up being cancer. Not always--mind you, but often.

CIS is very aggressive and always categorized as high grade. That doesn't mean doomsday however. It means one should not take a laid back attitude to treatment though. BCG is the standard treatment for CIS and has a very good track record.
Lots of people here have had BCG treatments and have been cancer free for years and years. I didn't do well with BCG and mine came back a couple of years later. Still, that was over two years ago now. Needed to get a bladder replacement (and they also got rid of that pesky prostate) but I am doing just fine and there is nothing I can't do that I could do before.

I might be rushing things a bit and you may not even have CIS. The pathology report will tell you that and all of us here can empathize with your frustration over having to wait.

Here is a link to flow chart I put together a while back. Bladder Cancer Treatment

Some folks have found this helpful for understanding what the standard methods of treatment are depending on stage/grade.
A few folks printed it out and brought it with them to use as a guide for discussion about their treatment with their urologist.

You will see on the chart that if you do get diagnosed with bladder cancer, the next step is to get to a top bladder cancer specialist. Typically, they will read the slides and reports from your urologist and then schedule a follow up TURBT. You won't believe how often some is missed the first time and also how often the original surgeon doesn't get deep enough to fully stage the cancer. The follow up TURBT helps reduce this probability.

As you have already discovered, when caught early bladder cancer is very treatable. I'm really, really hoping that the pathology report comes back and disqualifies you from membership in our group here. However, if you do have bladder cancer confirmed, we are here to help. Ask us anything about anything related to bladder cancer, urologists, top docs/hospitals for getting to the right specialist, etc.

Let us know as soon as you get the pathology report. Get a copy of it for yourself also. All you have to do is request it and sign a release (basically giving yourself permission to see you own medical record).

All the best!
Mike

PS: When you go to the doctor to find out the test results, if he says the word cancer (hope he doesn't), you are only going to hear every 8th word after that. Blood will rush to your brain and you're going to feel confused to say the least. Have someone come with you if you can. Bring a notebook with questions or to just write down things he says so you can read it later and better remember. Once I requested all of my urologists notes and reports (a couple months into my treatment), I was amazed at the things he said in the notes that he discussed with me that I had no memory of whatsoever.

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 1 month ago #36466 by jimswife
Well, AlanLee, welcome to the forum! You have come to the right place. I do not have BC but my husband does. So, I will give you what I know from my point and also what I know from my husbands point. It's normal to feel nervous but keep yourself busy and don't allow this monster to take over your mind. I have found the waiting always the worst part of any testing. You will soon have the results and with your doctor you will get through this.

Where are you located? Are you in a larger city or a small town? Are there good medical facilities there? Give us some more info. You will find many people on this site who have been there and done all of this for a much longer time than I have. My husband was diagnosed last July and had to have his bladder removed in an RC. That was because his BC had traveled further through the bladder than yours did. His prostate was also involved. So, for now, until you get your reports and know exactly what's going on, it's not easy to know where you will go from this point. When you get the reports you will have a better idea of what to do. In the mean while...take in a deep breath and try not to let it all overwhelm you! When I came to this site...I was overwhelmed had little or no direction. Both Jim and I have come a long way since July! Take care and come back often. We are a great support group!

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