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scared, concerned for my dad....

9 years 4 months ago #35919 by alanjay
I am a newbie myself. I have had Bladder Cancer over 2 years but until 6 mo ago, I was stage 1 and had 2 scrapings only. after I had CT was upgraded to stage 2. was referred to Cleveland Clinic where they sat on their hands.
I went to Holy Cross because my primary care physician practices there. I was admitted by her for an unrelated matter. She got me my Urologist and Oncologist. I saw them both as an inpatient and had extensive testing. I was upgraded to stage 3. Just had PET scan and will have results on Monday. My chemo was postponed because the urologist is doing one more scraping before I start the chemo. I was told it will be once a week for 2 hours for 14 weeks when I start. I will give you updates if you want.

The purpose of my first letter was to let you know how important you are in your fathers care and how how much better he must feel knowing how much you care and how much you are doing for him.

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9 years 4 months ago #35914 by ginagrothe
How is your treatment at Holy Cross? How many weeks of chemo have you had? See my message below and tell me what you think....

My father has gone through 3 weeks of chemo so far and has stage 4 bladder cancer, in bladder and lymph. He met with Dr. today from University of Miami for review and to hopefully have his surgery scheduled. The Dr. told him that he will not do surgery if the cancer is in his lymph....the chemo has to rid the cancer in the lymph before he can do surgery. "He wouldnt put him through surgery because the cancer will just come back if it is in his lymph"

I thought during surgery they remove bladder, prostate and lymph??? Not according to this Dr. I even asked the oncologist last week and she said they remove bladder and lymph nodes.

We were also told by the oncologist that if the chemo is not affective and his cancer is resistent to it, the surgery will be scheduled sooner. I am really confused at this point and I think my Father is too! I dont understand, they would let the cancer keep growing?? When I asked about radiation during our visit with the oncologist last week, she said no radiation because the area will be too inflamed for surgery. I just dont know if we should have him go somewhere else...this just seems odd. Someone please help.

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9 years 4 months ago #35898 by alanjay
I am in a situation very much like your father. I was referred to UM-Jackson Memorial and Cleveland Clinic. I started out at Cleveland Clinic but moved my care and records to Holy Cross.

It is a scary situation but you and your father seem to be doing the right thing. I have heard many good things about the Urological surgeons at UM-Jackson, this is where my original Urologist referred me to, so your father seems to be in good hands. As the patient, I urge you to keep supporting your father in any way you can. I hope his Chemo is going well.

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9 years 4 months ago #35769 by ginagrothe
Hello all, Any advice/input is greatly appreciated. Last time I wrote my Father (age 55) had his second bladder scraping at Cleveland Clinic in Weston, Florida. The Dr. said the cancer appears to be in the muscle and for him to proceed with an Oncology appt. to start chemo prior to having the bladder removed.

After meeting with the Oncologist at Cleveland, my Father felt the Oncologist there was very wishy/washy and said quote "let me confer with Miami University, they are experts at this" When my Father heard that, he decided to go for a second opinion with a top notch Dr. at Univ. of Miami. The Dr. at Miami reviewed all his scans / slides and said to meet with his Oncologist and proceed with chemo prior to having the bladder removed.

The chemo would be an 8 week session, prior to starting the chemo my father contracted an infection (most likely from the 2nd scraping at Cleveland clinic, in which he was treated with antibiotics) also he was experiencing pain in his buttocks. The scan following the scraping showed a lymph node on his leg affected.

I have to vent and say prior to switching to Miami, my Father told Cleveland of the buttocks pain and they said he probably hurt himself...they didnt bother to investigate!!! I am baffled at this! 2nd, when calling Cleveland about the infection, they kept brushing him off, not returning phone calls. So sad, to think a top notch facility would service their patients in such a manner!

In the meantime, the new Oncologist told my Father to have more testing/scans since 2 months had passed since his last scraping and she was concerned with the pain in his buttocks. Each week it was more scans, more tests.....the chemo started the week of Christmas, more time going by with the bad bladder still in.

He went today to have another scan and they told him it would be another bone scan 3D- on the pelvic area. When he glanced at the paperwork it said possible MST bone. We go this Thursday to meet with the Oncologist to receive all the results from all the scans, he will be receiving his 3rd dose of chemo Thursday also. I am so worried and so concerned, it seems like this cancer is getting worse and the Doctors dont even seemed concerned,they Oncologist doesnt return calls and we have been waiting 3 weeks for results! All this time is going by and now and the cancer may have traveled. His original bone scan 3 months ago was clear. I am really scared, can someone please enlighten me that may have some information. My deepest gratitude.

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