Just Diagnosed -- What Next?

6 years 9 months ago #53661 by Alan
Replied by Alan on topic Just Diagnosed -- What Next?
Let's hope the path shows nothing bad! Yes, you have exactly the attitude I try... fill our time with other items. One day at a time. You are going to do fine.

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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6 years 9 months ago #53658 by NotDoneHereYet
Replied by NotDoneHereYet on topic Just Diagnosed -- What Next?
Hello all who replied. The information was all useful, and the kind and hopeful thoughts are most welcome.

Rjake1, thanks for the report. I'm glad you're doing well.

They pushed my Turbt to Friday, so it was done yesterday. Surgeon found only the one lesion. Didn't give a lot of info, except to say lesion was very defined and easy to see the where thing began and ended. Also said rest of bladder looks very clean and healthy. Said he was very hopeful for a good prognosis, but must wait for pathology to move forward on diagnosis/treatment. So I'm hopeful, but in limbo for One to two weeks. Physically I feel fine other than the catheter, which I'm not to remove until Monday. I've had no spasms. Urine still pinky orange.
Got to stay busy these two weeks I think, and not obsess on this. Will post more when I know. Best regards to all and god bless

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6 years 9 months ago #53647 by Alan
Replied by Alan on topic Just Diagnosed -- What Next?
While none of us are doctors, the URO's I know will say ANY high grade the whole path is high grade. Either get another URO or ask some pointed question of yours. The usual protocol is BCG.

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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6 years 9 months ago #53642 by RJake1
Replied by RJake1 on topic Just Diagnosed -- What Next?
NDHY - Hope your TURBT went well. Got my path today. Mostly good news. T1a superficial, non-invasive, mostly low grade with a microscopic focal of high grade. 60% chance of recurrence. I go back in 3 months. If it recurs w/in one year I'll be receiving BCG treatments.

I'm feeling pretty good. Only had blood once at home after surgery. Hope you are recovering well. Please let us know how you're doing.

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6 years 9 months ago #53634 by GKLINE
Replied by GKLINE on topic Just Diagnosed -- What Next?
I just thought I'd chime in and see how everyone is doing?
I know that the TURB is a scary thing. It will answer a lot of questions that, maybe, we don't want to have answers to.

But the TURB will help you form an action plan for treatment. Somehow, not knowing is somewhat safer. But there are many many of us here that have been through this and we are still kicking around.
I have a positive attitude that you both will be able to say this too.

Good luck and keep us in your loop. You are welcome to give us any opinion here. You can celebrate, Vent, Rant, Cry, Whine and complain. There are no rules here (Well I used a bad word here, and got a ruler to the wrist) so feel free to let it out! It's OK


George

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]
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6 years 9 months ago #53611 by Jack R
Replied by Jack R on topic Just Diagnosed -- What Next?
Not Done,

Welcome to the kinder gentler patient side of BC. Most of the articles by Doctor Google, M.D. cover either such a wide range of cases that they do not apply to any one individual or they report on very complex and "interesting" individual patients (interesting to doctors I assume, ).

You are on the right track now, and fairly soon you will have enough information for treatment options to be offered, based on YOUR situation. That is when you can search reliable information source on google that address YOUR diagnosis. Armed with focused info, you can make the most of choosing a course of action with your doctor.

My number one question for my doctors is always, "When I have questions after think this over for a bit, or I have concerns or need advice, who can I call 24/7/365 and expect a quick reply". Doctors hate the question, but I like to get it out upfront.

Other advice is to share ALL you questions, concerns, worries and fears with your care team as they arise. They will no be able to address your concerns unless you start the conversation and demand answers (or promises of quick answers).

Wait for the pathology report, calmly (sure, easy to say); worry solves nothing. There are lots of viable treatment options for early BC. With no other info known at this time, you are expected to do well. Once diagnosed, you can expect to be followed (and perhaps treated as needed) far into the future. Focus on the positive.

Best,
Jack

6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021
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