Just diagnosed

7 years 10 months ago #51337 by Jack R
Replied by Jack R on topic Just diagnosed
Lupenbill,

An elevated urine pH is not a primary indicator of a bladder tumor. There are many many things that can cause the high metric. The first thing to look at is the trend of your pH. Your doc will want to know if this a one time out of range reading or is it an ongoing condition.

Try to not delve too deeply into an individual test result. It is the sum of all the tests that will lead to a diagnosis and treatment plan.

Waiting for tests and results can be tough, but worrying over the unknown can be worse. Try to stay positive and assume the best. (Sure,easy for me to say)

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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7 years 10 months ago #51334 by Lupenbill
Replied by Lupenbill on topic Just diagnosed
I was looking at some of my test results The pH in my urine is elevated to 8.5 is this something that anybody on this form has experienced just curious. I wonder if this is normal indicator of a bladder tumor. So many questions that I have hoping to get an answer soon. Still waiting for surgery on 6/16
Lupenbill

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7 years 10 months ago #51300 by Lupenbill
Replied by Lupenbill on topic Just diagnosed
josh
Thank you it really does help to be able to vent to people that have been where I am now. I feel that every thing is going to be ok I just need to keep reminding myself of that. I hope I can be as stong as the people on this sight.
Lupenbill
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7 years 10 months ago #51296 by jroza1
Replied by jroza1 on topic Just diagnosed
I was Diagnosed in Feb and had my first procedure in March. This can seem scary and confusing as the wheels of medicine around this illness aren't particularly speedy for small tumors. 5mm is really small as was mine at 8mm. Many members on the list have had tumors many tumors of several CMs, so it is really early.

I am 38 and had to tell my daughter 4 and my son 2 and it's pretty simple. This illness Bruach HaShem, while annoying if you follow the regimen of scopes and BCG, the survivor rates are through the roof. Keep it simple and positive. Explain that this is just something you will get though and it's not going to kill you!!!!, but it does mean sometimes your body has some pain or you will feel a little beaten up every so often and have them bear with you. We had to be a little more upfront with our 4 yo because I came home with a catheter and needed a lot of space for 2 days.

Next telling people can feel odd, particularly if you have friends who have more painful and aggressively life threatening cancers. I have several friends with Colo-Rectal in later stages, also my age and they are going through HELL for their treatments and in reality - your surgery will be 30-45 minutes and BCG will be terrible only in that you get a catheter once a week, which sucks, but IT'S NOT CHEMO!

You have lot's of people here who will talk to you and there is a lot of information out there. I know I flipped my shit when I heard I had "Cancer" but in reality, this is cancer with a small "c." You will have to go through some odd things and peeing blood here and there, but on the bright side, this is very very very survivable.

You can also feel free to email me any time or message me through here... I know where you are in the emotional rollercoaster and how scared one can feel.

j o s h .r o z a @gmail.com
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7 years 10 months ago #51295 by Lupenbill
Replied by Lupenbill on topic Just diagnosed
Heather
Thank you for the words of encouragement I hope all goes well with you. And yes you are right it does scare us I seem to be OK for a few hours and then get frightened again logically I understand that this is something that the majority of the time will turn out just fine just a little extra work to keep ourselves healthy of course there's the other times where your imagination runs away with you hard to get a handle on that sometimes my thoughts are with you have Heather thank you
Lypenbill

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7 years 10 months ago #51294 by heather79
Replied by heather79 on topic Just diagnosed
Lupenbill, I'm in the same place as you. I went to the hospital with a fever of unknown origin a few weeks ago (NO other symptoms), mentioned I had a history of kidney stones, so they did a CT of my abdomen and pelvis, finding a bladder "mass". The exact wording from the CT report is " 7.3 x 4.8 x 4.8 cm polypoid masslike mural
excrescence off the left posterolateral bladder wall involving the UVJ,
resulting in moderate hydroureteronephrosis and perinephric inflammation". Needless to say I am a wreck.

I had the TURBT the next week, where 95% of it was removed, and stent put in my left ureter so my left kidney can drain, and I still have a left nephrostomy (capped, not to drainage). I got the call from my urologist yesterday saying yes the pathology showed malignancy but it was "low grade". Now I'm scheduled for another cysto with BCG on the 20th.

Thank god I had a fever I couldn't shake!

You're not alone, Lupenbill. All of us newbies are scared witless, but with the support of friends, family, good doctors and the people on this forum who have been there and made it to the other side, we can do this!

Heather
Dx 6/8/2016 "Low grade" (waiting for more info)

Heather
Dx 5/25/2016, First cysto and TURBT 5/23/2016, 2nd cysto and TURBT 6/20/2016, Original tumor size (by CT): 7.3 cm x 4.8 cm x 4.8 cm, BCG 8/31/2016-10/12/2016,
Cysto 11/15/2016: Recurrence :(, TURBT (#3) 12/5/2016, BCG x 3 weeks, off 1 week x 1 year (end Jan 2018)
Cysto 4/5/17: NED!!
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