If you could do it again

4 years 2 months ago #59099 by Alan
Replied by Alan on topic If you could do it again
Thanks for the update I am just sorry for the diagnosis. The medical profession continues with improvements so we'll see.

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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4 years 2 months ago #59098 by acosta
Replied by acosta on topic If you could do it again
Thanks for the very helpful input. Most of our questions were answered but my parents did not want the gory details. It’s not looking good. The cancer is advanced to multiple organs and bone. The oncologist is recommending immunotherapy given her current strength which will begin in about 10 days. Mom is unflappable but we are all trying to keep it together. I’ve heard great things about immunotherapy and we will go to an education class next to learn more. All I know is we are in for one hell of a ride.

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4 years 2 months ago #59017 by Alan
Replied by Alan on topic If you could do it again
Sorry for your reason to be here. With apologies to whatever/whoever I saved this from a few years ago as I have copy and pasted, here is a good list of questions:

1. What is your treatment plan?
2. How many other people have you seen/treated with the same dx as mine? What are do statistics say about the success rate of the recommended treatment? What is your success rate with cases similar to mine?
3. Are there any other treatment choices?
4. Present your rationale for the type of treatment which your are recommending
5. What are the benefits and risks of this treatment?
6. What drugs and dosages will be used?
7. How will the drugs be given and who will perform it?
8. What is the treatment protocol (initial date, time, frequency, duration, etc.)?
9. What are the possible side effects and how should I deal with them?
10. How should I modify my diet during my treatment?
11.Whom should I contact in case there are any complications or if I have any further questions during my treatment?
12. How will the treatment affect my normal activities?
13. I am currently taking the following medicines (vitamins, minerals, herbs). Will this have any effect on the treatment?.
14. What are your feelings about the use of complementary approaches (such as: vitamins, minerals, herbs) with conventional treatment? Would you recommend any?
15. What new treatments are being studied in clinical trials?
16. Would a clinical trial be appropriate in my case?

Plus some in case you pursue a second opinion:

1. What are the risks of postponing the treatment in order to obtain a second opinion, and how long can the treatment be postponed without any health hazards?
2. What documentation (test results, reports, etc.) will I need for the second opinion?
3. How can this transfer of documents be arranged?

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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4 years 2 months ago #59016 by sara.anne
Replied by sara.anne on topic If you could do it again
Sorry to hear about your mother. She is fortunate to have you at her side!

My first question in trying to understand her situation is what did the pathology report say about the cancer found in her bladder and stomach? Was one of these the primary tumor or is it likely that they are mets from the lungs?
Then I would want to know why exactly they are biopsying the lung? (This is not an easy procedure) or are they planning on excising the entire tumor?

What are the treatment options? What would they suggest and why? What would be the result of any of the treatment options? Side effect? Would these be palliative or curative? Would a second opinion at a major cancer center be of any value?

I am sure that others will have suggestions as to questions. Be sure to write everything down and you and she hear answers to your questions...our memories tend to fail us when we are under pressure!

Wishing your mother, and you, all the best

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
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4 years 2 months ago #59015 by acosta
If you could do it again was created by acosta
Good afternoon. My mother who is just 80 (but a young 80) is just out of the hospital in Albany, NY where she underwent emergency surgery and they found a tumor in her baldder and on her stomach. They also found a mass in her lung and we are awaiting her renewed strength to biopsy this. The biopsy on the bladder and stomach came back as cancer and we are scheduled to meet with the oncologist next week. As you can imagine, our world is spinning right now and as her care coordinator I want to ensure I am fully prepared and equipped to ensure she receives the best possible chance to fight this.

My question to you all is:
What questions should I ensure are answered by the oncologists? What do you wish you had asked or known going into the first appointment and what can I expect? I'm a bit lost without information but I do not want to miss anything. I live an hour away and I don't want to miss a chance to do this right the first time.

Thank you for your time and support.

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