Susan - Delayed Diagnosis, Part II

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Sun, 10 Feb 2008 22:46:03 +0100

Thank you to Ann Athena (Holly) and Warren for their sober, reality-check
support. I'd never heard "Courage is fear that has said its prayers." I like that!
Warren -- You're the doctor. I must tell you that I was under the impression that the sarcomatoid varient did represent an evolution (or devolution) of TCC in individual cases -- something about genetic changes over a long period. So I thought that earlier detection might have spared me this aggressive varient.
So much for an intelligent layperson trying to read the medical literature.
Be that as it may, your replies were not only practically helpful but also
buoyed my spirit by helping me feel connected at a tough juncture in my
quest to fight the good fight: Bad news + a new "waiting game." I am grateful, though, still to be feeling well enough to have enjoyed a long walk on the beach
on a 70 degree Sunday in Mississippi. Thank you both -- Susan (mssmr)
PS Holly, I really like your warrier name and its rationale. - mssmr

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Fri, 08 Feb 2008 20:42:22 +0100

[quote author=mssmr link=topic=1631.msg13402#msg13402 date=1202480543]
I find it hard to do because I do think I "should have could have" been smart and assertive enough to have gotten a diagnosis before my cancer got to be the mess it has been at and since my late diagnosis. I do not like to feel stupid, disrespected, etc. any more than other folks do.[/quote]
Dear Susan,
Maybe an earlier diagnosis would have given you a better outcome, but it certainly wouldn't have made you have a less rare and aggressive cancer. That was, unfortunately, your lot from the outset. It didn't become that way from neglect.
As far as getting an earlier diagnosis - hindsight is always better than foresight. Do not beat yourself up. In that regard I only did better than you because I got lucky. Keep in mind that I'm a physician, and I was under a urologist's care for 8 years because of hematuria and symptoms. It never occured to me to ask for another cystoscopy. I did ask how we'd know if there was ever anything to be concerned about since I often had symptoms and hematuria. My urologist only suggested a cytology which showed sheets of atypical cells. When he passed that off as nothing, I was relieved. If I hadn't urinated a clot a month later, since I had a high grade tumor, I'm sure it would have been invasive and maybe even metastatic by the time the diagnosis was made. - wsilberstein

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Fri, 08 Feb 2008 10:45:48 +0100

Hi Susan,
I think you are doing well at recognizing the past errs - this will help you (and others) listen to your inner voice as you seek treatment you are ok with. I.E. the Rational Theraputics. If I had 2 failed chemo plans behind me I would be most interested in testing to find what will be effective. A Dr who fails to understand the advantage for you at this point is probably not the right dr for you. I have followed my inner voice on much of my journey and I think I am still here because of it.
I for one do not see you as stupid or any other such nonsense. I see a woman who trusted her dr's who were less than committed to their oaths and a system that failed miserably. Put these type of thoughts behind you, Susan, hard as that may be. Courage is fear that has said its prayers - and I know you pray :) You are seeking smart treatment and putting yourself high on your priority list which is exactly what I would do too. And I think I have made some wise choices in my treatments.
In closing, I just want to share how I admire the way you are facing off with this beast. You have clarity in understanding exactly where you stand with it - not easy to do. You are open to new options that look promising - again takes courage.And I am amazed that you also find the time and generousity of heart to help others here too. God bless you and I am praying for you, Holly AKA ANN ATHENA - mznoregrets