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Just Diagnosed — What Next?
Posted by RJake1 on June 2, 2017 at 5:21 pm63 yr old former smoker (quit 30 yrs ago). Went to Dr about 10 days after first discolored urine. Had the camera look at my bladder. Tumor is present. Very scared.
After informing me, my Dr said “you’re not going to die from it.” She said there are good and bad versions of the cancer, and this looks like the good, but she couldn’t commit (which has me worried even more). I asked her survival rate and she said 97% – I think she was shocked that I asked, and looked like she wanted to say 100% (which made me feel better).
I have TURBT scheduled for June 21. Since yesterday I’ve been thinking of nothing but worst case scenarios and reading horror stories on the web. I have a 20 yr old daughter that needs me and I’m not ready to go just yet.
Some questions – besides what next to expect – are there worsening sypmtoms with various stages of bladder cancer? I’d like to think I caught it early as I have no symptoms beyond discolored urine (blood in urine). Any correlation to symptoms and severity?
My Dr said there is a “good” and “bad” type. Does anyone know what she might be referring to?
Thanks.
Alan replied 7 years, 7 months ago 8 Members · 18 Replies -
18 Replies
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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.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 blessWhile 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.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.
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]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 2021Hi Jake,
I just signed on to the forum. I am awaiting a cysto/turbt on June 22nd as well.My hematuria first occurred last summer. Very mild, and my doc ran some blood and urine tests. No sign of blood or other stuff. Gave me the ok, since the first occurred after a hard workout. I too am a cyclist. 54, and average 50-100 miles a week in good weather.
Second Hematuria occurred in Late Jan 2017. Went back to doc scared. He ordered more blood/urine test and complete ct scan. All clear again. ?
Last week had the third episode: this time chose ultrasound. They found 1.8 cm tumer on posterior wall. From my eye, the shape looks like invasive type….yes, I have self diagnosed…stoopid. and scared the shit out of myself and my wife. She told me to stay off of google, as did my RN Sister.
Anyway, so glad I found this forum some people who have walked this path. We are not alone. Now just anxious and scared about the turbt, etc., but this helps. Havent slept for 5 days, but hope to tonight since I now realize there is hope.
Also, If anyone reading this can suggest questions for the team, I could use some help. Dont want to miss anything.
Thanks in advance.Thank you, everyone! Dtat60, my experience is similar to yours at least at the beginning. I ride bike, and noticed dark brown urine. Felt it was dehydration, drank fluid, it went away. However, after it reappeared 10 days later, with some dark flakes, I went to Dr. and got diagnosed. At first she thought it was a kidney stone, but I opted to have a cystoscopy done in her office at first visit and the tumor was found.
I appreciate all the encouragement. I’m a bit of a doom and gloomer and its been difficult waiting in this uncertainty. I still have two weeks to go.
Not being a doctor I can only relate my own personal experience but I didn’t go to the Doctor until I saw blood in my urine (bright red). However, I had seen dark and very dark urine for months periodically. I would drink lots of water and it would disappear for while. I am a runner and was running/walking 8-10 miles a days everyday and just figured it was dehydration. I first went to my GP who figured it was a kidney stone – had a ultrasound which confirmed a non-obstructing 2CM kidney stone – and then was referred to a urologist. By that time 3-4 weeks had passed. I had a CT scan (with and without contrast) as part of my initial diagnosis. After first Cystoscopy the urologist suspected a low-grade papillary tumor but after the TURBT the pathology showed LG and 5% HG. I then had another TURBT (bluelight/Cysview) a few weeks later and this showed CIS. BTW – the kidney stone is pretty much a forgotten issue at this point.
My point is that in my case I ignored my initial signs (or rationalized why) for quite a while before my diagnosis. I would think that the earlier you find problem the better. You won’t really know until you get your pathology. After reading this forum you will see that the “protocol” for treatment is pretty standard for everyone, of course with some variation. Good luck – you’re on your way to beating this!
08/16 Blood in Urine;09/16 CT Scan, RPG, Cysto;10/16 TURBT;12/08 BL TURBT;01/17 6X BCG;05/17 NED, 3X BCG, 9/17 NED, 3X BCG,1/18 NED, 3X BCG,7/18 NED, 3X BCGHello Jake
I have been away from this site for a while and for that I am extremely sorry.
But I was exactly where you are……. Nine years ago! And I’m still here!
Yes it is normal to be scared. And looking at those statistics is only going to make it worse. Even it the odds are 99%
in your favor, you are sure that you are a 1%er. NOT!You will survive! You will live a long time….. If you don’t get hit by a bus this weekend.
If the “c” has not penetrated the bladder wall….. You are a lucky man indeed. But the Dr. will perform a TURB (Trans something) and then they will test that and do ANOTHER one! Just to see if they got it all.
And then you will be a survivor! For many years. Even if they have to remove your bladder (like me) You will be around to dance at your daughter wedding. I’ve had three wedding for my daughters since I had “c”
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]I really don’t know the answer to your question…but I doubt very much that it is because he thinks it is BAD. I often wonder why some urologist do the complete CT scan routine before they know exactly what the diagnosis is. but as Alan says this seems to be common. I am not an MD, but I do not like CT scans unless absolutely necessary. My urologist ordered it AFTER the TURB when we knew we were dealing with high grade bladder cancer. Then again every five years….AND we had a long discussion of the pros/cons of a procedure with high radiation exposure.
As for having to wait three weeks? If indeed you do have bladder cancer, it has probably been there for years. Three weeks is not going to make a difference, and this is truly relatively fast timing. Usually the doctors/operating rooms are booked up farther ahead than that. I believe I waited 8 weeks.
I am afraid that the only thing you SHOULD do during the next two weeks is try to relax (ha ha), read more escape novels, and stay away from the internet!!
You will do fine and your doctor is doing what she should.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum ModeratorThanks, Alan. I suspected as much but am seeing ghosts everywhere right now.
My TURB was scheduled for 3 weeks after initial diagnosis. Is that typical? Seems that they’d want to excise and biopsy asap after diagnosis? Isnt there a risk of spreading during that 3 weeks? Seems like a long time. Should I be worried.
Then again, to quote from the film “Bridge of Spies”, whenever the Tom Hanks character asked Rudolf Abel if he was worried, Abel replied “Would it help?” I suppose it wouldn’t.
Is there anything I should be doing the next two weeks? Second opinion? Research other Doctors? Continue to read horror stories on the internet?
The CT scan and x-ray in all likelihood are just being cautious to be sure there is nothing else extra going on. Which is usually the case. These are normal and routine prior to biopsies (TURB).
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.Thank you. Another question, if I may.
My TURBT is set for June 21. My Dr. ordered a CT Scan Pelvis/Abdomen (contrast) and chest X-ray which I had done yesterday.
I read in Cleveland Clinic website that these tests are done only AFTER biopsy has determined invasive cells.
Do you think my Dr. ordered these as part of normal routine (being cautious) or does it indicate her feeling that my cancer is invasive just by what she observed in cystoscopy?
A second opinion is indicated any time that you feel uncomfortable with a diagnosis or treatment plan or situation;
if you have a complicated condition; if there are differences in opinion about the best course of treatment; when your treatment plan doesn’t seem to correspond to what you expect; if something just doesn’t feel “right”No matter what, you want to know how much experience your doctor has with bladder cancer; many urologists treat mostly prostate problems and are NOT experts in bladder cancer treatment. Don’t be afraid to discuss this with your urologist.
If you feel comfortable with your doctor and his/her recommendations for treatment echo what you have learned elsewhere (but be careful of Dr. Google!) you probably do not need to get a second opinion. If your condition becomes more complicated…definitely. My urologist has said that if we ever get to the point that he would recommend bladder removal, he will INSIST that I get a second opinion.
And, the best result that you can get from a second opinion is that whatever your doctor is doing is the best!
If is a very personal thing…
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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