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my dad just diagnosed

11 years 9 months ago #10757 by wsilberstein

i know what the md has told my dad but i still can't help but let my mind wonder and sometimes think the worst, i seem to imagine all kinds of scenerios in my head. my dad is stage 1, t1 grade 2-3. he will have another procedure to make sure everything is out and then start immunotherapy. the md felt he had removed eveything and the cancer has not spread. am i crazy for thinking so many things, i keep thinking "what if" about everything. i should just think about what the md has said, all positive things, but i just can't seem to help myself. i have a hard time sleeping and think about my dad all the time. i have been researching on the internet, sometimes it seems like it helps, other times i come across a site that seems scary and not at all helpful.

Dear Claudia,
It's been almost 7 years since I found out I had bladder cancer. I still remember that it really hit me when I came home and told my family. My daughter cried and that made me cry. I had no idea what my future would be. I looked for information on the web and most of what I found frightened me. Unfortunately, I didn't find this site. I didn't know anything about bladder cancer, and here I am, a physician - but pediatricians don't treat bladder cancer. How can you help but worry about the possibilities at this point. My doctor told me I'd be okay, but it sounded like what he tells everyone.
So here's my point. It's okay to worry, but you also need to know that there are people like me who had superficial high grade cancer like your father has who are doing just fine. I can't make you any promises, but so many of the folks here who are lending their support to you are here because they fought this beast, and they're still around living their lives. In some ways the battle goes on, but year after year we make it to the Thanksgiving table to give thanks for having caring daughters like you.

-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant...

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11 years 9 months ago #10755 by mznoregrets
cas,
You are in the right place - people here weather they are family or patients - care and want to help :)
Any cancer diagnosis causes distress. When I was diagnosed I was very afraid and it scared my family too. It takes some time to come to terms with how it changes things. So you are very normal :)Some times it just takes a little while to adjust.
It sounds like your Dad has seen a dr who did a TUR ( the surgery to remove a bladder tumor) and that he is scheduled for a scope before he starts BCG. That he is getting treated is very good. He will need to have regular check ups but that is how it is with many illnesses.
Yes, there is alot of scary information on the internet about bladder cancer - but you need to know there are 2 kinds - invasive and non invasive. It sounds like your Dad is in the noninvasive group. The invasive cancer can be treated too - that is what I had. I am doing good :)
With Thanksgiving being tomarrow - maybe you can try to just set this aside and spend time with your Dad and think about fun and family.
God bless, Holly

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11 years 9 months ago #10752 by cas
hi,

i'm not sure if i should post in this section or another. i'm writing because i just needed to. i'm having a hard time. sometimes i feel ok but i find myself thinking all kinds of thoughts. i know what the md has told my dad but i still can't help but let my mind wonder and sometimes think the worst, i seem to imagine all kinds of scenerios in my head. my dad is stage 1, t1 grade 2-3. he will have another procedure to make sure everything is out and then start immunotherapy. the md felt he had removed eveything and the cancer has not spread. am i crazy for thinking so many things, i keep thinking "what if" about everything. i should just think about what the md has said, all positive things, but i just can't seem to help myself. i have a hard time sleeping and think about my dad all the time. i have been researching on the internet, sometimes it seems like it helps, other times i come across a site that seems scary and not at all helpful. one webinar i came across showed a big skull and crossbone with the t1 info, i thought that was the worst thing i had ever seen. i am probably rambling but i needed to talk to someone, i have to be so strong for my family and sometimes i just cant. thanks for anyone listening/reading. thanks.

claudia

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11 years 10 months ago #10141 by wendy
Hi Claudia,

That sounds like a good safe approach and is the newly recommended guideline for treating T1 tumors. You father's doctor knows what he's doing, sounds like. The grading issue is an ongoing discussion as guidelines are changed now to either high or low grade and no more middle ground. But...since your father's doctor is doing a re-TUR, he is being prudent and treating this as if it is high grade.

If there is nothing to be found at the next scope, that would be the best case scenario. If there is still some residual tumor found at the re-TUR, well, good to get it out and another biopsy as well. A bit of muscle needs to be included in a biopsy in order to make an accurate dx, otherwise they often re-do it (or should).

No, an oncologist is not necessary in this situation. If anything, a urological-oncologist would be ideal for any person dxed bladder cancer.

Take care,
Wendy

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11 years 10 months ago #10119 by cas
hi,

my dad received biopsy results, it is T1 with grade 2-3. the md felt he had removed everything when he had surgery last week but as a precaution my dad will have surgery next month to really make sure everything is gone then he will have immunotherapy, prognosis still the same. thanks.

claudia

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11 years 10 months ago #9655 by Rosie
Claudia, You wrote me on another thread "i just read you post and it makes sense. please read my post under newly diagnosed (my dad just diagnosed) sometimes too much info is not good, hope to hear from you."

Too much info can be confusing but it seems you do not have enough information as to your dad's condition. Look at the written pathology report to learn of his type and grade. We can then be of more help. Rosie



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