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New to forum: Urologist wants to start Maintenance BCG with my Dad ...

12 years 8 months ago #7828 by wsilberstein

sometimes realizing that I must follow up on every detail regarding both my Mom's and my Dad's healthcare becomes overwhelming.

Dear Nean,
    Even when the doctor is conscientious, we have to remember that he/she has many patients to be concerned about, and we have just our loved ones about whom we remember the smallest details. I always appreciate it when patients remind me to take care of things because sometimes something gets moved to the back burner for more pressing problems, and then I might forget. And then, in some offices it's up to staff who may be overwhelmed and not appreciate the significance of some delays. And unfortunately, some physicians simply aren't conscientious.
    When my mother had leukemia, I had to keep after the doctor's office constantly for every detail. My mother loved her oncologist, but my sister was ready to string the doctor up from the nearest tree. I tried to mediate and keep things moving smoothly because as a physician I could understand how things sometimes go awry, but after that experience I wondered how any patients manage without somebody advocating for them.

-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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12 years 8 months ago #7827 by Nean
Stephany,
Thank you so much for your kind words! I appreciate the hug, believe me! I recently (in July) finally was able to get both of my parents into a geriatric specialty practice. I do hope this doctor will be more "on the ball" than their previous primary-care physician.
Thank you for the information regarding MRSA. It really is amazing how many different conditions there are ... and that each must be tested separately. Sometimes I think the bladder cancer has had more of an emotional effect on my Dad than a physical one in day-to-day life.
If it's okay to post it, here is the link to the blog I have started regarding elderly care ... it deals with my Dad's bladder cancer (finding this forum, too!), as well as conditions from which my Mom suffers.
http://www.elderlyparentshelp.blogspot.com
There's not a whole lot there yet, as the school year has begun and I'm juggling that schedule, as well.
Thank you, again, for your encouragement. I hope you are doing well.
Kind regards,
nean

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12 years 8 months ago #7826 by Nean
Thank you, Warren, for your suggestion to retrieve the pathology report ourselves. I definitely will call on Tuesday and find out how to do just that. In fact, I would have thought the doctor would have wanted to review the report before making any further treatment recommendations. I don't mean to complain, but sometimes realizing that I must follow up on every detail regarding both my Mom's and my Dad's healthcare becomes overwhelming. It does help to make notes! And it also helps to have people like you to help me fill in the blanks!
Thanks, again.
Kind regards,
nean

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12 years 8 months ago #7824 by wsilberstein

Not only that, but the doctor STILL did not have the pathology report from my Dad's TURB in July.

How could he not have the patholgy report from July? :o That means his office has to call the pathologist to get the results because he should have it, and perhaps it got lost in the mail or misplaced. Insist that the urologist's office call for the results NOW, or give you the name and phone for the lab it went to so that you can get the results yourself.
We occasionally don't get lab reports on some of our patients. If we don't follow up on missing reports, they would remain missing forever.

-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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12 years 8 months ago #7823 by Stephany
Oh, Nean.....I just want to give you a big hug! You are doing SO much for your dad, and when he has time to step back and look, I'm sure he knows that and appreciates everything.

A couple of things....have your father and mother been checked out for MRSA's? My 80+ father kept getting what the docs said was pneumonia, and kept getting treated, and kept getting it again. Finally, someone checked him for a MRSA, and, sure enough, that was the problem. He had been going downhill for sometime, with all this. Once the MRSA was treated (and that took a long time), he got much better. Here are a couple of links for that: http://www.webmd.com/skin-problems-and-treatments/understanding-MRSA-methicillin-resistant-staphylococcus-aureus
http://www.nlm.nih.gov/medlineplus/ency/article/007261.htm
http://en.wikipedia.org/wiki/MRSA


Next thing: everytime my folks move from Kansas to Arizona, they seem to get worse for a while. Now they are better. Travel is hard on them. At one time, after their move back to Kansas, Mom was bedridden, incontinent, and needing 24 hour care. Now, she's walking, playing bridge, doing physical therapy, and "with it" again.

Next: My dad has a lot of problems with anxiety and depression. We have struggled to get him on a medication that works. My sister just got her Nurse Practitioner degree with a major in psychiatric meds, so she has been working on this. When he's on a med that works, he is much better.

Try to remember that not all of your dad's problems are related to the cancer. He may need some other treatments, too. Can you find a good geriatric psychiatrist for him? And get the MRSA checked out? Just what you need, right? Another docs appointment.

I don't remember seeing a note about where you are, but do you have options for different urologists? Maybe you could call the NCI cancer hospital closest to you, and get a list of their referring urologists.

I hope I have not inundated you with too much to think about. The people on this site are angels, and I have learned so much from them. Everything I list here is just from my experience, but I do hope that we "sandwich" kids can help each other.

Stephany in Iowa

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12 years 8 months ago #7821 by Nean
I just thought I would write an update about my Dad. I hope that's okay. He went for his appointment yesterday with the urologist. I did not go back with him this time, as I wasn't sure what sort of exam he was going to have. I only wish I had gone back! (I better make a mental note to go back with him every time; they can throw me out if it's the sort of exam that's embarrassing!!!) At any rate, my Dad comes out of the office holding a paper. I said, "Dad, what's that?" He calmly replied, "It's the appointment for my first BCG treatment."
WHAT??? :o
I couldn't believe it! I took the paper and went back inside the "out" door and asked to speak to the doctor's nurse. I explained that, at the last visit, we had been all through this and that we had decided that my Dad wasn't up to having the treatments. She then knocked on the exam door and got the doctor to come out into the hallway. It was as if a light when on inside his head. "Oh, yes. I didn't write that down in my notes. That's right. He wasn't going to have the BCG. Just cancel that appointment and set one up for 6 weeks for a cystoscopy."
While I believed everything he said at the last visit about, "With a treatment like that, I always sit down with the family and discuss ...blah blah ... and I never force any treatment ... blah blah."
AAACKK >:( He hadn't even listened to us!
Well, now my Dad is waffling back and forth, thinking maybe maintenance BCG would be good, after all.
Not only that, but the doctor STILL did not have the pathology report from my Dad's TURB in July.
Oh well. I am printing out the letter from Dr. Lamm and a bunch of other documents I found on the web pertaining to BCG for my Dad to read. I just feel like I'm back at square one again. sigh :'(

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