diagnosis @ 33, what to expect?

14 years 9 months ago #26775 by Patricia
Replied by Patricia on topic diagnosis @ 33, what to expect?
Bill.....yes the thinking is now to do a re-turb as often all margins are not clean on the first one........
www.medicalnewstoday.com/articles/113147.php
Pat

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14 years 9 months ago #26766 by DoninRichmond
Replied by DoninRichmond on topic diagnosis @ 33, what to expect?
:silly: A second TURB?

OK, had one in May, tumor removed, 6-BCG's, and am now waiting 6-weeks for my first "cysto" in the office. Uro has not mentioned a re-TURB????

Am I missing something??

Bill Jr
Tumor removed 5/4/09
\"T1 high-grade\"
Started \"BCG\" 5/21/09
Have a 2-yr treatment schedule

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14 years 9 months ago - 14 years 9 months ago #26761 by Patricia
Replied by Patricia on topic diagnosis @ 33, what to expect?
Eric....there is financial help listed on the home page here if you qualify..please take a look.
www.bladdercancersupport.org/index.php?option=com_weblinks&catid=31&Itemid=103
A second TURB really is necessary as they are often understaged or the tumors reseed if all margins are not gotten. My second TURB saved my life with a top urological surgeon with the grumpiest personality i've ever met..but who cares...he's a genius with the knife.
Here's a couple of top guys in N.C. Dr. Pruthi at Chapel Hill
www.med.unc.edu/urology/faculty/pruthi
Other good uro/surgeons can be found at Wake Forest University in Winston-Salem
www1.wfubmc.edu/
pat

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14 years 9 months ago #26760 by sapie
Replied by sapie on topic diagnosis @ 33, what to expect?
Yep. I do agree with AL, a second opinion is a must. In my case, my first diagnose was a TaG1-2 and the second was a T1G3. This made the difference between watchful waiting or BCG treatements. I am so glad today that I insist on a second opinion (and beleive me, some people though I was pushy). And agreeing with Al on another topic, your not looking for a best friend but the best doctor that will help you manage this disease. Being part of the health care system myself, I know there is a lot of communication issues:S . Found yourself a team were you are part a it and that your input count because it is and it should. This is your life.

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14 years 9 months ago #26759 by alsimons
Replied by alsimons on topic diagnosis @ 33, what to expect?
Eric;
It takes a while to absorb everything that is being thrown at you in such a short time. I am extremely sorry that you have entered the BC world at such a young age. But at least you are here and asking important questions. The people on this site are very knowledgeable and compassionate.
Getting a 2nd opinion to me is just as important as the original diagnosis. As Mike has mentioned each time you go to a new “Doc” he will as mine put it “need to go under the hood”. Regardless of the amount of CT scans, MRIs, x-rays and records, if he is any good will want to see for himself just what is going on in your bladder. In my case the full blown cystoscopy you mentioned turned into a TURBT to remove an additional 7 tumors after having 50 removed 8 weeks prior. Another advantage to having the cystoscopy done at a hospital is they will most likely have their own pathology department to look at the biopsies.
The medical profession can truly be frustrating. I can only urge you to become as familiar as possible in your treatments and or options.
As far as the cocky doctors…………I’m asking him/her to save my life…………not marry me. I want the best.
Look forward to hearing good things from you.
Al

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14 years 9 months ago #26748 by mmc
Replied by mmc on topic diagnosis @ 33, what to expect?
Bladder cancer is often understaged at the first TURBT so it is good to get a second one to be sure. I don't think you could do a re-TURBT in the office if you wanted to. They need to take samples of tissue. They can do a cysto in the office if it is just a look and see.

Did you tell the uro that if he did it in the office your cost is $50 and as outpatient it is thousands? Maybe he wouldn't be offended if he understood your primary concern is the money it will cost and that you aren't questioning his medical judgment.

If you're not happy with the doc, then by all means move on to someone else. However, you want to do that quickly. Most will want to do things themselves (cysto, TURB, etc.) rather than just taking reports. This results in better outcomes for patients because they have more experience doing these things than local uro's.

Not sure that "treating people my age" is as important as "treating people with bladder cancer on a daily basis" but that is certainly your call.

Some of the best docs know they are the best and are cocky. Personally, I'd like the best doc I could get who also is good with patients but that's a personal choice.

Did your second opinion doc say what treatment plan he would recommend in your case, based on the current information you gave him? Did he think BCG was the proper course of action for you or did he recommend something else?

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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