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5 things I wish I knew at dx?

10 years 4 months ago #26629 by alsimons
1. What is bladder cancer and where can I get information. on treatments
2. The importance of getting a 2nd opinion
3. What does stage and grade have to do with it
4. Getting copies of all medical reports
5. The most important how to tell the family or potential care giver

There are a whole lot more but for the first 3 years I choose to ignored it and hoped it went away. Numbers 1-4 might have impressed upon me the importance of following through. Just because the doctor didn't seem alarmed doesn't justify my ignorance.

Perhaps this is TMI

al

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10 years 4 months ago #26628 by Alan
#1. Where can I get online info? I stumbled upon this site I believe after several google searches.

#2. Can anyone help me with perhaps a genetic/hereditary trail? Had an uncle that had BC years ago at age 85, deceased at 90. Have found out there is VERY little work in this area.

#3. What can I do to prevent this from coming back? How much does nutrition help?

#4. What are the treatments? Chemo, radiation? Which is where my uro introduced me to BCG.

DX 5/6/08. T1, G3 papillary.

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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10 years 4 months ago #26627 by Moonerj
1. What does stage and grade mean.
2. What is the difference between non-invasive and invasive.
3. What are the chances of recurrence.
4. What is the difference between BCG and Chemo.
5. Why do I have to be scoped every three months.

TA Grade 1
3 Turbts
30 BCG Treatments
Cancer Free since Nov 2007

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10 years 4 months ago #26626 by Flamenco.
Ok here goes.-

1.What effect my 8 month delay in diagnosis might have had on the chances of treating the cancer effectively. What a further wait of maybe another month would have had on the outcome.I opted for private(as in paid by me) treatment as I thought I was pushing my luck to wait for an op on the social security system, and wanted rid of this asap.

2.What were the risks that my family might also be susceptible to the same illness. Given that I was not in a high risk group for suffering from bladder cancer,could it have been caused by something in our environment, water, diet etc.On the same thread, was there any hereditary link that could make my children be at higher risk.

3.Can the grade of a tumour change. What I mean is, could it start growing as a lowgrade tumour and then with time become highgrade. Or does a highgrade tomour start as a highgrade.

4.How long I would need to be off work.

5. If I would be able to have treatment, chemo or bcg, without my parents noticing anything, as I particularly did not want them to know anything about my condition.

dxTaG3 2006

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10 years 4 months ago #26601 by Cynthia
The content working group is busy coming up with content for the update that is being done for the site. We would like for you to give us a hand by answering a question. I am going to post the question under the different categories in the forum so if you fit in more than one place please give us your insight where you feel you can. It is asking you for the five things you wish you knew at dx but if you can only come up with a few or even one please post.

Thank you

“What are the five things you wished you knew (and think others should know) when you were first diagnosed as having non invasive bladder cancer?


If it is not in your signature please let us know what your original diagnosis was.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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