1. < Bladder Cancer

Husband diagnosed with bladder cancer: I feel so alone

Posted by ljean63 @ljean63, Mar 28, 2022

Hi,
My husband had a tumor removed from his bladder. Biopsy results were conveyed to us as non life threatening bladder cancer. He had bloodwork and Ua prior to treatment and Ua showed cancer cells in urine. The doctor thinks the cancer is in his ureter. My husband still thinks it's non life threatening, but I looked up what was in his notes and it stated high grade T1 disease. I looked it up and now I'm freaking out and I feel so alone because I tell him everything that upsets me, but I can't share this. I also think his urologist isn't telling us anything .

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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 3, 2023
In reply to @knititout "Good morning everyone! I am just finding this group. I am at Mayo Florida with my..." + (show)
@knititout

Good morning everyone! I am just finding this group. I am at Mayo Florida with my father who was diagnosed with Micropapillary Bladder Cancer October 20, 2023 in Cumming GA when they thought the biopsy they were taking was going to show locally invasive prostate cancer… all that to say the biopsy wasn’t done as guidelines recommend for bladder cancer, nor has his cancer otherwise been properly staged. Today is a big day as we will be meeting with Dr Lyon, urologist, who is capable of major bladder removal surgeries assuming that is still what needs to be done. The only reason we are here instead of with the team in Georgia where my parents live, is that they couldn’t get to his surgery until December 11 anyways… or to an oncologist (Emory - Dr Bilen) that was remotely familiar with this rare cancer, until November 28. Blessings to all.

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I add my welcome, @knititout. I hope you saw the reply from @katydid77, whose husband is also a patient of Dr. Lyon at Mayo Clinic in Jacksonville.

How did the appointment with your father go? What are next steps? How are you doing?

REPLY
1 reply
knititout | @knititout | Dec 3, 2023
In reply to @colleenyoung "I add my welcome, @knititout. I hope you saw the reply from @katydid77, whose husband is..." + (show)
@colleenyoung

I add my welcome, @knititout. I hope you saw the reply from @katydid77, whose husband is also a patient of Dr. Lyon at Mayo Clinic in Jacksonville.

How did the appointment with your father go? What are next steps? How are you doing?

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I did not check the site at all until just now - thank you very much… we all needed these words of encouragement at this very moment!

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knititout | @knititout | Dec 3, 2023
In reply to @katydid77 "Knititout, my husband and I are so sorry your father has to go through this but..." + (show)
@katydid77

Knititout, my husband and I are so sorry your father has to go through this but also want to reassure you. Dr. Lyon at Mayo Jax is the best.
He removed Bob’s bladder and prostate as both were involved four years ago when Bob was 87 yrs. old. He was back to playing good golf within six months following surgery. The ostomy does require some life-style adjustments but they can be managed. We wish and your family the very best. I would be glad to answer any questions you might have.

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Tomorrow is pre-op appt for the TURBT with Dr Lyon Dec 6. Your words were exactly the encouragement we needed! Please pray no “hiccups” with not being able to make it to the Davis building outpatient appt by 9am tomorrow morning since I took my dad to Mayo ER Saturday morning for confusion/UTI and then he was/still is admitted to the hospital. Our nurse mentioned “The Mayo Way” is that the inpatient and outpatient providers usually work together to accomplish the preop appt goals while my dad is inpatient, in order to not delay the procedure date assuming my dad is stable enough to proceed.

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1 reply
katydid77 | @katydid77 | Dec 3, 2023

I will pray that the “system” works in your favor. It is a 4 to six hour surgery and your Dad will be awfully tired just from that. The after-care my husband received was excellent even though it was over Thanksgiving week and weekend. He will be hospitalized at least 4-5 days and you can stall for another 24 hours if you feel he is not ready to go home. To do that you simply “protest” the discharge and it will take the Medicare committee another day to decide.

I’m so glad if I have been helpful. It was really scary for us and I had no one to answer questions. Don’t hesitate to contact me through Connect. I check my messages all during the day. God bless.

REPLY
katydid77 | @katydid77 | Dec 3, 2023

In re-reading your postings I realize your Dad is having a Turp. This is not as extensive as the surgery my Husband had. I hope this is sufficient and he will not have to have a urostomy. Please let us know how things are going for him..

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 7, 2023
In reply to @knititout "Tomorrow is pre-op appt for the TURBT with Dr Lyon Dec 6. Your words were exactly..." + (show)
@knititout

Tomorrow is pre-op appt for the TURBT with Dr Lyon Dec 6. Your words were exactly the encouragement we needed! Please pray no “hiccups” with not being able to make it to the Davis building outpatient appt by 9am tomorrow morning since I took my dad to Mayo ER Saturday morning for confusion/UTI and then he was/still is admitted to the hospital. Our nurse mentioned “The Mayo Way” is that the inpatient and outpatient providers usually work together to accomplish the preop appt goals while my dad is inpatient, in order to not delay the procedure date assuming my dad is stable enough to proceed.

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Thinking of you and your father, @knititout. I bet you got some serious knitting done while waiting for the procedure to be done. How is he doing?

REPLY
knititout | @knititout | Dec 7, 2023

Thank you! A little knitting accomplished, yes. Dad is doing great today! In fact, better than most days last week. We are going for a short walk now. Mailed my mom a letter to Baylor Rehab in Dallas where she is intensively rehabilitating from a spinal cord injury from a car wreck in Georgia 8 days after dad’s 1st bladder biopsy. Waiting for the next of my three sisters to arrive for a visit - one sister left yesterday, and the other is with mom. God is good… all the time!
REPLY
1 reply
knititout | @knititout | Dec 7, 2023
In reply to @katydid77 "In re-reading your postings I realize your Dad is having a Turp. This is not as..." + (show)
@katydid77

In re-reading your postings I realize your Dad is having a Turp. This is not as extensive as the surgery my Husband had. I hope this is sufficient and he will not have to have a urostomy. Please let us know how things are going for him..

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Deep bladder resection. Might not qualify for cystectomy due to probable metastatic disease.

REPLY
katydid77 | @katydid77 | Dec 7, 2023
In reply to @knititout "Thank you! A little knitting accomplished, yes. Dad is doing great today! In fact, better than..." + (show)
@knititout

Thank you! A little knitting accomplished, yes. Dad is doing great today! In fact, better than most days last week. We are going for a short walk now. Mailed my mom a letter to Baylor Rehab in Dallas where she is intensively rehabilitating from a spinal cord injury from a car wreck in Georgia 8 days after dad’s 1st bladder biopsy. Waiting for the next of my three sisters to arrive for a visit - one sister left yesterday, and the other is with mom. God is good… all the time!

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Amen to your comment. Your faith is what will get you through this.

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