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Concerns regarding bleeding_nearing end?

2 years 8 months ago - 2 years 8 months ago #52711 by jscales1957
I too have been going through the same with my 84 year old Mom. My Mom had the TURBT (Muscle invasive T2B). Dr suggested Chemo & Radiation then the removal of bladder and Uterus. Mom is against Chemo as 15 years ago with Breast Cancer, she had a VERY difficult time with Chemo. Her mind is not sharp and although we speak each day and I see her at least once a week, I am concerned with her taking care of a bag.
From what I read, at 84, the surgery can be very rough (out for 5 hrs, infections etc). I do not want to see her suffer and especially when she says no to Chemo!
Right now, luckily no symptoms but we know it is there. Like you, I know that God has a plan and sometimes we have to intervene (sometimes selfishly) because they are so young. But at 84 my Mom has a wonderful life and I can only hope God makes her time left her very comfortable! Praying for your Dad & you as the child.

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2 years 8 months ago #52706 by Jack R
Dadandme,

Thank you for being your father's advocate.Everyone need someone to help them deal with the medical establishment. I was in that role for both of my parents.

IMHO, the reasonable and desired level of care can change quickly. Hospice level care is a welcome choice, but people do move in and of of that level of care. You describe your father as showing improvement - in that case it may be time to reconsider the overall plan, to include the possibility of further improvement.

The doc can check a urine sample and see if a significant amount of blood is actually being lost without invasive (and perhaps unwelcomed) intervention. A little bit of blood can look like a huge amount of blood.

Dad's comfort and quality of life are likely your main concerns. His care team should be aware of his change in condition, and they should be suggesting ways to support dad's improvement. If not, then his advocate needs to get the team onboard.

It is so hard reversing the parent-child role. The best we former children can do is to support dad in whatever way his medical condition and his demonstrated nvolvement in life may change over time.

Our parents did no less for us when we were small.

Best to You and Dad
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one (only) kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo , round 3
Begin year 4 with cis
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2 years 8 months ago #52704 by Alan
I am so sorry you are facing such times. Dad's are wonderful people having lost mine a few years ago. Cherish every day! As Yogi Berra said "it ain't over till it's over". He is fortunate to have family that is willing and able to help. Yes, it very well could be time is near at the same time-and only you and he can answer this-as remote as this is you are correct it could be stones or something less sinister to investigate. You are also correct in the Man upstairs is in charge. All of our hearts go out to you.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
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2 years 8 months ago #52703 by Dadandme
My 84 year old father was diagnosed in May 2016 with a high grade urothelial bladder cancer. It wasn't metastatic, but in the muscle...not so sure now. Because of prior radiation treatments (over 30) for prostate cancer 6 years ago, his only option was chemo (carboplatin w/ gemcitavine). A urostomy was done due to an obstruction. The chemo was very harsh on my dad and set him back...dropping his blood count & platelets numerous times requiring blood transfusions & platelets. After completing treatment, the tumor had not shrunk & urostomy remained. He was also diagnosed with Trigeminal nerve pain in his face but managing with pain meds/steroids for this as well. He seemed to be declining quickly so we moved him from palliative care to hospice to help manage the pain. They have been a wonderful help to my mom as she cares for him at home. A few weeks after putting my dad on hospice, he started regaining strength, started eating again, gained weight & felt like he was coming back to life. He did not go outside the house, but felt like riding his stationary bike. A few days ago, my dad started bleeding every time he urinates. It's appears to be bright red with some clots. Lots of it. Although my dad still looks good in color, I don't know how long he can lose this much blood and continue feeling good. I'm fearful that things will be changing soon. It seems that the docs/hospice are not likely to order additional testing/labs/imaging at this point. It is so unsettling as I want to make sure that my dad is getting the best care for his health and not just make assumptions. There is a slight possibility that it could be kidney stones and/or infection. Can someone please tell me if this is part of the progression of advanced bladder cancer? What should we be expecting in the coming days and are we nearing the end of this journey? I would be grateful for any information that you might be able to provide. I know his life is in God's hands so that is comforting during these times of uncertainty.

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