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Hi. I am new to all of this and essentially I am looking for the most honest opinion on here. Here is my father's story the short version, he is wheelchair bound due to 2 strokes, limited right side mobility, resides in an assisted living facility and has for 10 years now, recovering alcoholic and hasn't smoked in 3 years (not by his choice) speech was affected by strokes and now due to the cancer severely impaired. He will be 60 in April. My family and I have met with his doctors to discuss his treatment options. Do we force the treatment on him not knowing what his quality of life will be after? His health prior to the diagnosis was poor and he has 1 working kidney. We are truly struggling with this decision so I was hoping someone who has experienced this family or patient can shed light on what my father would truly go through...


EA
Joined: Dec 2003
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Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
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EA,

I'm sorry to hear about your father. I'm not sure from the information you provided a good opinion can be given. Have you considered consulting with someone where your father lives or through the hospital to sit down with the family and make sure everyone is on the same page? There are so many factors that go into a decision like this.

Maybe a good start is everyone sitting down with the doctors and getting input from the medical team. If your father isn't well enough for treatment, that would pretty much be a decision maker, in my opinion.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
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Bilateral VFI 01/2021
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Patient Advocate (old timer, 2000 posts)
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
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Im very sorry to hear about your father. Treatment decisions are never easy ones to make. Is your father able to give his input as to what he wants? A good sit down would help in weighing all the options.

Best wishes!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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"OCF Canuck"
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"OCF Canuck"
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I agree - is your father able to decide? Does he enjoy his life as it is now? My dad had had 2strokes his mobility, communication, lifestyle and everything were severely affected he did NOT want to live his life like that! Can he walk? Talk to be understood? Is he completely dependent on others for daily basic needs? Does he have a DNR? as someone who has fought oral cancer (radiation is brutal.. Chemo.. Not fun...surgery will be hard as well) and someone who has cared for a parent who was compromised severely by a stroke - I would personally say - think very carefully before going through with this treatment. Do your best to keep him comfortable and pain free and possibly let the disease play out its course. The reality is this. He is already compromised immune wise (history of long term illness, stroke, and already being in an institute). His health is poor - (does he have diabetes?) the chemo will cause major issues with his immune system, the radiation will burn him and prevent him from being able to eat and taste, short term at the least he will likely need parental nutrition, long term in the worst case scenario - this will require a peg permanently.
Now as a child watching a parent suffer it's the worst. If I could have done anything to save my dad I would have, but he wanted to die, (without a cancer dx hanging over his head) and he was only in the hospital/ nursing home for 10 mos. I cannot imagine that life for an extended period of time, then to take a man who is already compromised and throw this treatment into the works...
If he is of sound mind and able to communicate his wants ask if not personally I wouldn't go through with anything other than palliative care. It's a heart wrenching decision but you have to ask yourself why am I doing his? For him? For me? Hugs - it's not an easy decision ..

Ps - though it may sound from above that I am a negative Nellie..I have to assure you I'm not. I Am the opposite in fact- I am very much one of those people who tends to tell people to push right to the end. I think what has me worried here is your dad's quality of life. From the sounds of it your father has been incapacitated enough from the age of 50 (very young) to be living in a nursing home, to me that says he is unable to do most or all of his basic care. Chances are he has a lot of other issues (my dad was physically and mentally affected - strokes do have different effects based on locations so I can only guess as to his situation - if you combine this with a stage 4 dx I think it it may be more harmful than helpful to put him through treatment.

Last edited by Cheryld; 03-16-2014 02:59 PM.

Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)
"OCF Kiwi Down Under"
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Joined: Mar 2011
Posts: 1,024
Cheryl has stated it very well and I agree very strongly with her.
This is a quality of life decision. If this was my Parent or my Husband I would be going down the palliative care route. Treatment is brutal and in someone who already has major health issues which will be compromised and indeed will cause limitations on treatment, I would not treat.
Thinking of your Family in this difficult time,
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
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Posts: 262
Hi EA -- My heart aches for you and your family. Both my folks died of cancer and I felt desperate to spare them any suffering, and also desperate to hold them here.

As you mention, no one can predict treatment's impact on an individual's quality of life. Worse, there's no certainty that treatment will succeed. Compounding the dilemma, one person may bitterly regret living with a side effect that another accepts as a reluctant gamble of quality of life for quantity. The calculus is entirely personal.

One thing that is certain is that a good outcome requires a determined patient. Being strapped to a radiation table or hooked up to a chemo IV is the easy part of the job. It takes tremendous will, though, to eat and drink when you're nauseated, have excruciating mouth sores, or everything tastes wrong. Fall short, and at best your body will take longer to heal; at worst, you won't be able to complete treatment. In your Dad's case, he'll have to take in enough water to protect his remaining kidney from dehydration and/or chemo toxins.

Beyond that, many of us have to commit to daily fluoride treatments and scrupulous dental care in order to keep our teeth, 7x/day exercises to minimize lockjaw, therapy to regain speech or swallowing skills, range-of-motion exercises and other self-care regimens, some life-long..

Complying doesn't guarantee successful treatment and minimal side effects, but failing to comply is a guarantee of less favorable results. Your Dad's level of commitment will strongly influence his outcome and should be factored into this decision.

A hospital social worker can help your family look at all the factors. I hope you all find peace, whichever direction is taken.

Lynn


53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides

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