Afraid and needing advice

13 years 10 months ago #31726 by New Diag 7
Replied by New Diag 7 on topic Afraid and needing advice
Hi Mike....you have no idea how that flow chart has helped. I have that flow chart in a clear plastic folder at the beginning of our medical notebook. It is very helpful.
Thank you again and I will pass along the good wishes to my husband. This morning began the initiation process.....aka known as admission process into hospital..i.e. x-rays and ekg. So I guess we are off into the world of BC and treatment.

On another note: Last night I laid in bed thinking about all the forums here that I read yesterday. You all are here helping others. And doing a nice job of it at that. I wondered to myself...How Are All of You physically and mentally doing after all that you have gone through..and in some case still going through? How do you feel today? Have what you gone through changed your lives? Or, changed the people you used to be? Has BC become foremost in your everyday challenges and thoughts?

Thank you again..
Cher

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13 years 10 months ago #31724 by BB317
Replied by BB317 on topic Afraid and needing advice
Keeping you and your husband in my prayers, am recently diagnosed also so cant help you much.

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13 years 10 months ago #31723 by mmc
Replied by mmc on topic Afraid and needing advice
Cher,

Tell him 'good luck' from all of us here for the Thursday TURBT!

You may want to share the flowchart of bladder cancer treatment that I put together. It was linked in that post I gave you.

Some folks have used that as a discussion aid when talking with their doctors.

Sending positive vibes your way. I know it is really tough for both of you.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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13 years 10 months ago #31722 by New Diag 7
Replied by New Diag 7 on topic Afraid and needing advice
Thanks Mike.... I printed the letter you had written re "Major Bladder Cancer Hospital is Not an Option." It will remain in our medical notebook as a reminder to not be swayed. Tomorrow, I will be making an appt at Moffit for when Dr. LocHart returns. Tonight my husband reported another bad situation of a lot of bright red blood in his urine today. I think the monster wants out after the uro tampered with it on Friday. Something is not right and I think we need to do the TURBT Thursday. We do heed your warning and thankyou.


Anita----thanks for answering the question about returning to work. I figured two weeks sounded about right. One day at a time. Doug is lucky..sounds like you are a great caregiver.

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13 years 10 months ago - 13 years 10 months ago #31720 by mmc
Replied by mmc on topic Afraid and needing advice
If your husband insists on his TURBT with the current doc, that's fine.
His Re-TURBT in six weeks should at Moffit.

Please read this post
www.bladdercancersupport.org/index.php?option=com_kunena&Itemid=114&func=view&catid=3&id=31222

no doubt the current guy is good. That is for a turbt though. If cystectomy is needed don't do it with this guy unless he does multiple A week. Do not let a Dr.'s ego to sway you. Check the numbers.

Get the pathology slides and reports and notes from the current uro to bring to Moffit.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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13 years 10 months ago #31718 by DougG
Replied by DougG on topic Afraid and needing advice
Cher,

Doug's last TURB surgery, he had the catheter in for a week and stayed home from work for 2 weeks. Your husband may have to wait and see how he feels. I say don't push it and go back too fast. You are getting good advice from everyone. Take a deep breath. The waiting and the unknown is the worst of it (at least for me). Prayers are with you.

Anita (Doug's wife)

Anita
Forum Moderator
Caregiver

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