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Questions and venting

4 years 4 months ago #47917 by sara.anne
Jodie, I would urge you to go out and get the biggest, juciest, most expensive cheeseburger you can find and ENJOY IT! Whatever caused the change in the cells of the bladder lining that led to your cancer happened long ago and over a long period of time. You do need to eat a varied and healthy diet...everyone does...but in spite of what you may read in some far-out blogs NOTHING YOU EAT NOW IS GOING TO CURE THIS. I am not recommending a fast food, high fat, no fiber diet...far from it. But eating a normal healthy diet, with lots of good things in moderation, is the way to go. You need to have your strength up for whatever lies ahead.

You may have seen the articles in the news during the past few days. They state that a largest percentage of cancer cases are "bad luck" and not the result of specific events. It has been shown that smoking is one factor that leads to bladder cancer, but many of us have never smoked and here we are.

To answer another of your questions, THERE IS NO WAY TO POSITIVELY DIAGNOSE BLADDER CANCER EXCEPT A BIOPSY. There are tests which look for cells in the urine that are useful, but often give false positives and false negative results. Therefore they are used in addition to, not in place of, biopsies. But if you are going to have BCG treatments, when your bladder has healed from them, the urologist will do cystocopy and look at the bladder where the cancer was. He will not need to do a TURB unless it appears that the BCG did not work and he needs to assess the entire situation.

A CT-urogram is a CT scan of the bladder, ureters, and kidneys to be sure that there is no sign of cancer there. My urologist orders one of these every five years.

Those of us who moderate and/or reply to posts on the Forum do it because we have been where you are. I remember feeling helpless, discouraged, and terribly depressed. Many people here on the Forum helped me understand and we hope to do the same for you.

Once again, I urge you to relax a bit (hard, I know) and not agonize over what is past or diet or anything else. Your job is to be the strongest you can be and you will get through this.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
The following user(s) said Thank You: JodieG

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4 years 4 months ago #47911 by JodieG
George - thank you for your response. I agree with not languishing in the depressed arena! I think my head is starting to turn away from gazing at my cancer and feeling all the emotions that brings and starting to look at concentrating on getting through this and fighting it. I'm with you - I'm ALL about getting better! Thanks again for your encouragement!

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4 years 4 months ago #47910 by JodieG
Alan - thank you for your response. It is making me feel better about something I am absolutely dreading. I really appreciate it!

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4 years 4 months ago #47909 by JodieG
Thank you, Sara Anne!! I just noticed there was a page 2 of this post and you were on page 2 and had responded over 2 days ago!! I loved your father's comment! I'm assuming it was because you tried different diets as well? Have you settled on anything specific or are you basically doing anything as long as it is in moderation? A friend of mine helped me yesterday afternoon when I talked to her on the phone and told her I almost feel paralyzed about what to eat because I don't want to feed the cancer and hadn't eaten anything yet that day (it was about 2:30pm) and she said some nutrition will be better than no nutrition because your body needs something to help fight the cancer as well so I need to be more concerned about feeding my body instead of not feeding the cancer. Sounds elementary but I've been so emotional I'm obviously not thinking as straight as I should. In any event, it helped me and I actually ate 3 meals today, so that's good.

I can't thank you enough for what you are doing - responding to people like me - it brings me to tears just thinking about it. I do have a few more questions. I think my doctor gave me the impression that there is no way to detect CIS with just a cystoscopy and that the only way to know it is there is by biopsy. I had a tumor removed from my bladder and biopsied January 2014 that came back benign, but my doctor was suspicious that he had cauterized too much to get a good lab reading on it and told me to come back in 6 months. That's when I went back in July and a cytology and another report came back positive and they did the biopsy in August and diagnosed me with CIS. Then they did another biopsy in December, so my bladder has been cut on 3 times this year. I'm wondering if you've heard of that before, that CIS can only be diagnosed with a biopsy? If not, are there other ways to diagnose it and what are they? Because I'm not looking forward to another biopsy after going through 6 weeks of chemo! Maybe I misunderstood, but I'm pretty sure he said they would biopsy me after chemo to ensure I'm cancer free. I don't know what a CT urogram is, but I will be looking it up! I already read the link you provided to Dr. Lamm's information - thank you so much!

Well, again, I really appreciate your time and wisdom. Thank you so much, and I will look forward to hearing from you again at your earliest convenience.

Thank you,
Jodie

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4 years 4 months ago #47907 by GKLINE
Jodie
I am all about venting !!!
It is perfectly normal to "feel the need" to get mad. It's therapeutic and helpful..
You can use the whole range of emotions on this journey. Just so long as you don't languish in the depressed arena. We hate that because it will not help you get better.

And we are ALL about the getting better.

Feel free to. "Let it Out"
We understand.

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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4 years 4 months ago #47901 by Alan
Jodie,

BCG is very doable and works in a high percentage of cases. Is it fun or a piece of cake? No. For most of us we will say it is uncomfortable and not pleasant but not extremely painful. It sure beats real "chemo" that most cancers involve and most of us know people doing it!

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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