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questions about my wife please help

2 months 1 week ago #56847 by iXanadu
WOJOS,

I agree with Jack, that until the tests are complete, and the results are in ( and sometimes even then) spending too much energy on what ifs are unhelpful. A little over a year ago, I stumbled across a book titled “The unteathered soul”. I’m in the sales business, and was looking for books on mindset and ended up on this title which is about mindfulness. Curious about what mindfulness once I Purchased the book and begin reading. It has changed my life, and the lives of several around me. In a nutshell, and in a way that this book is masterful at explaining, mindfulness is about living in the now. Doing so frees you from the pain and agony of living in the past which cannot be changed, for the future that is not here and may not arrive. I highly recommend a book, and I actually believe the audible version might be more impactful than their written version. I’ve went through both.

So, armed with the prospect of mindfulness, I did spend a lot of time researching bladder cancer. I did it in a detached manner, Like any other research project I might undertake, without forecasting any particular experience that I may or may not actually experience. Mindfulness,keeps me calm and whole. The research allowed me to follow along in the tests, and conversations without asking some questions ( because I really did understand) and asking detailed, 2 and 3 level deep questions in other areas.

If you can live in the moment - you might similarly benefit from taking this on as a research project. If it gets to you, I would look for someone to study and advocate for you, or just wait it out. I can say for sure, there is no benefit owning an outcome that isn’t here now.

1/1/2019 Happy New Year: What is that red tint in the toilet
1/2/2019 Primary DR - might be first signs of BC
1/9/2019 CT Scan, Urine Culture, PSA test - ALL CLEAR
1/13/2019 Cystoscopy show what looks like Papillary
2/1/2019 TURBT
2/5/2019 Clots and blood clog urethra go to ER
2/7/2019 DX: HG...

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2 months 1 week ago #56846 by Jack R
WOJOS

Until tests are complete you will not have a firm diagnosis. It does no good to second guess yourself - an we have all done that - and just get ourselves upset and worried.

You and I , and many others, came to a board with the word CANCER in its name because it was what we feared most, and it was the only bladder condition we had heard about. It is understandable.

Nothing is worse than waiting for answers. We all hate that. But we have to wait for tests and reports.

Please try to stay positive - you are on the right track to get answers. Then you will have a plan set to deal with whatever is actually found. I wish you could have an answer immediately - you have waited a long time. Soon you will have an answer, a meaningful answer.

Best
Jack

What's with this Bleeding ? 6/2015
DX: 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 , round 3
Begin year 4 with cis

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2 months 1 week ago #56845 by wojos
I thank you all for your time and the responses you have given . I guess my most basic question is one that cannot be positively answered until the biopsies . Here goes . With the 1.5 yr history of large blood ( as seen on dipstick ) in urine and pain and pressure in bladder as well as back pain and weight loss and fatigue . Should I be preparing to help my wife through more than just the test . She has no infection nor stones and without yet looking in bladder have no explanation for the issues . With your knowledge should we be prepared to deal with bladder cancer. If it is cancer how serious is it that it has had 1.5 yrs to grow untreated ? Again thank you all .

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2 months 1 week ago #56824 by Jack R
WOJOS,

Fortunately, your wife is now seeing a Urologist - the right specialist to get to the bottom of urinary problems.

No one is going to be able to explain why your wife, or many of us here have a similar story of a late referral to urology. Many of us have learned that we need to be more demanding of our doctors at times. When a doctor says "I don't know", or "there is nothing else", or things are not getting better, it is time to seek care elsewhere. What a sad thing to say, but true for so many here.

Focus on the positive. The new doctor has scheduled a full work up, it seems. Expect an answer to the blood and frequent urination problems to be found. If somehow you get no answer, request a referral to an appropriate specialist, preferable at a major university associated hospital.

Feel free to ask questions here. No doctors here, but people with real life experiences of dealing with bladder cancer - before and after diagnosis - and dealing with the medical establishment.

Wishing for a good outcome for your wife.

Best
Jack

What's with this Bleeding ? 6/2015
DX: 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 , round 3
Begin year 4 with cis

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2 months 1 week ago - 2 months 1 week ago #56821 by Alan
Hate to say it, and there may be reasons why a cystoscopy hasn't been done as none of us are doctors. That test is part of standard protocol when evaluating the bladder. If this is being done under a general anesthetic the URO probably is doing a TURB (transurethral resection of the bladder where samples of any suspicious areas will be burned or cut away and set to pathology for exam. This is usually a day surgery with no overnight stay. Only after being read then will you have an idea what might be there.

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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2 months 1 week ago #56820 by wojos
Alan thank you for your response . On the 20th they are doing her first cystoscopy as well as scheduled for biopsy and the retropoly something or other . No dr has yet done a cystoscopy . After her urologist looked at her films and labs he looked very angry when he came back in and was very matter of fact this is what we are doing and we are doing it in the Operating room under general anesthesia . I can not understand why she has yet to have the cystoscopy done .

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