When to stop treatment (asking for my dad)

bejuce · 02-06-2013, 03:35 PM

Hi HER-2ers,

I've always come here for my most difficult questions and you've been nothing short of wonderfully supportive. So here comes another set of questions from me:

1. When does a medical team/family realize that there is nothing more to be done and treatment should be stopped? Is the fact that the patient is in a lot of pain and taking morphine enough?? My dad has only had 2 chemo treatments for his advanced bladder cancer (mets to liver, peritonium and colon) and the doctors are not willing to do anything else. They are saying he is in pain, the cancer is widespread, and his abdomen is all dilated. I'm desperate as I live thousands of miles away and can't talk to the doctor in person. I simply don't understand why they would stop after just 2 chemo treatments. Should I push for another scan? They are not even willing to do more imaging on him...

2. How does one determine whether to keep the patient in life support or not? Do patients suffer when they are entubated or on a respirator? How can I convince the medical team to try everything they can to help my dad?

3. When a patient passes away, is there any benefit in collecting some tumor samples for genetic analysis that can benefit the family members later on? I ask because if this were to help me in any way in the future to determine whether there is some genetic feature in my family that I may be passing on to my kids, I would like to know.

Thank you so much. I'm 12 days away from reaching 4 years from diagnosis and it is killing me to see my dad go through this. He was there for me helping me out and I can't stop thinking that I'm failing him if I don't convince the doctors to try more...

Please pray for my dad and family at this difficult time.

Love,

Marcia

bejuce · 02-07-2013, 12:07 AM

It is too late now... My dad has passed away.

Lien · 02-07-2013, 12:32 AM

Oh Marcia, I'm so sorry.

I was going to write that probably the doctors were right. My cousin died of bladder cancer and as her husband was struggling with colon cancer, she did everything she could to stay alive. It was horrible. She was in excruciating pain that no pain meds would touch. I thought at the time it was a blessing wen she finally passed.

I hope they were able to give your father a relatively pain-free last couple of days and that he was ready to go. I am very sorry though that you weren't there to say goodbye.

As he was there for you when you were going through cancer treatment, I am assuming you were very close. I am sure he knew you were with him in spirit. Love knows no distance or barriers. It is there in your heart. If everything is unsure, that love, that bond you have, makes the pain and suffering more bearable.

I hope you find peace.

Love

Jacqueline

sarah · 02-07-2013, 12:47 AM

dear Marcia,
my deepest sympathy for your loss. It is good that he died quickly and didn't linger months in pain.
you were there for him even though you were far away.
grieve but know that there was nothing more you could have done for him.
big hug
sarah

Joanne S · 02-07-2013, 01:29 AM

Marcia, I understand how helpless you felt knowing your dad was in so much pain and how much you wanted to help him and ease his suffering. I can only imagine how difficult it's been for you being so far away. My heart goes out to you Marcia. I'm so deeply sorry to hear of your loss. My heart, thoughts and prayers are with you. Hugs, Joanne

rhondalea · 02-07-2013, 04:37 AM

Please accept my condolences for the loss of your father. It is clear that you loved him dearly. I'm so sorry.

ammebarb · 02-07-2013, 06:14 AM

Oh Marcia, I'm so very sorry for your loss. Be assured that your Dad knew your love for him. I'm wishing you peace and comfort in the coming days and weeks.
Barb A.

NEDenise · 02-07-2013, 06:53 AM

Marcia,
I am so very sorry for your loss. It was clear in your post just how much you love your Dad. If I could read it in just a few words, there can't be any doubt that he felt it. He is at peace. My prayer is that you and your family will grieve your loss and soon find peace in remembering all the joys and laughter you've shared with your Dad over the years.
I'm so sorry for the pain you're feeling today
Denise

JennyB · 02-07-2013, 06:57 AM

Marcia,
So very sorry for your loss. My thoughts are with you and your family for the difficult days ahead.

Jenny x

Hopeful · 02-07-2013, 07:59 AM

Marcia, I am very sorry to hear of your loss. You and your family are in my thoughts.

Hopeful

StephN · 02-07-2013, 11:28 AM

With sadness I read your posts. I hope you were able to speak to your father in his last hours. It seems he was becoming too weak to handle more treatment.

My friend's dad also passed on Tuesday, and he was also a wonderful man who contributed to his community.

I imagine you are boarding a plane to go attend your father's end of life wishes/traditions. My you be blessed with peace as you walk the next mile.

snolan · 02-07-2013, 02:59 PM

Sorry for your loss this stupid disease has so many ways of making our lives tough. Just know that your dad is in a better place and no longer is in any pain.

Ellie F · 02-07-2013, 03:05 PM

Oh Marcia
I have only just read your post and could feel your desperation . I am so sad to hear of your dads passing but grateful that he is no longer experiencing pain and suffering.
My deepest condolences to you and your family.
Ellie

adelay · 02-07-2013, 03:13 PM

Hugs and prayers headed your way~

Pray · 02-07-2013, 11:27 PM

Gods blessings and prayers for your family. Peace my friend.

Jackie07 · 02-08-2013, 03:05 AM

Marcia,

I'm very sorry for your loss.

Regarding the genetic links - you still can find out by getting tested yourself. However, it might not be necessary as there are already two (yours and your Dad's) types of cancers that fall into the Lynch Syndrome (similar to HNPCC) category:

J Natl Cancer Inst. 2013 Feb 5. [Epub ahead of print]
Risks of Colorectal and Other Cancers After Endometrial Cancer for Women With Lynch Syndrome.

Win AK, Lindor NM, Winship I, Tucker KM, Buchanan DD, Young JP, Rosty C, Leggett B, Giles GG, Goldblatt J, Macrae FA, Parry S, Kalady MF, Baron JA, Ahnen DJ, Marchand LL, Gallinger S, Haile RW, Newcomb PA, Hopper JL, Jenkins MA.
Source

Affiliations of authors: Centre for Molecular, Environmental, Genetic and Analytic Epidemiology (AKW, JLH, MAJ) and Department of Medicine (IW), The University of Melbourne, Parkville, Victoria, Australia; Department of Health Science Research, Mayo Clinic Arizona, Scottsdale, AZ (NML); Genetic Medicine (IW) and Colorectal Medicine and Genetics (FAM), The Royal Melbourne Hospital, Parkville, Victoria, Australia; Hereditary Cancer Clinic, Prince of Wales Hospital, Randwick, New South Wales, Australia (KMT); Cancer and Population Studies Group (DDB, JPY, CR) and Conjoint Gastroenterology Laboratory, Pathology Queensland, Clinical Research Centre of Royal Brisbane and Women's Hospital Research Foundation (BL), Queensland Institute of Medical Research, Herston, Queensland, Australia; Department of Molecular and Cellular Pathology (CR) and School of Medicine (BL), University of Queensland, Herston, Queensland, Australia; Department of Gastroenterology and Hepatology, The Royal Brisbane and Women's Hospital, Brisbane, Australia (BL); Cancer Epidemiology Centre, Cancer Council Victoria, Carlton, Victoria, Australia (GGG); Genetic Services of Western Australia and School of Paediatrics and Child Health, University of Western Australia, Perth, Australia (JG); New Zealand Familial Gastrointestinal Cancer Registry, Auckland City Hospital, Auckland, New Zealand (SP); Department of Gastroenterology, Middlemore Hospital, Auckland, New Zealand (SP); Department of Colorectal Surgery, Digestive Disease Institute, and Cancer Biology Department, Lerner Research Institute, Cleveland Clinic, Cleveland, OH (MFK); Department of Medicine, University of North Carolina, Chapel Hill, NC (JAB); Denver VA Medical Center, School of Medicine, University of Colorado, Denver, CO (DJA); University of Hawaii Cancer Center, Honolulu, HI (LLM); Samuel Lunenfeld Research Institute, Mount Sinai Hospital, Toronto, Ontario, Canada (SG); Cancer Care Ontario, Toronto, Ontario, Canada (SG); Department of Preventive Medicine, University of Southern California, Los Angeles, CA (RWH); Cancer Prevention Program, Fred Hutchinson Cancer Research Center, Seattle, WA (PAN).

Abstract

Background: Lynch syndrome is an autosomal dominantly inherited disorder caused by germline mutations in DNA mismatch repair (MMR) genes. Previous studies have shown that MMR gene mutation carriers are at increased risk of colorectal, endometrial, and several other cancers following an initial diagnosis of colorectal cancer. We estimated cancer risks following an endometrial cancer diagnosis for women carrying MMR gene mutations.

Methods: We obtained data from the Colon Cancer Family Registry for a cohort of 127 women who had a diagnosis of endometrial cancer and who carried a mutation in one of four MMR genes (30 carried a mutation in MLH1, 72 in MSH2, 22 in MSH6, and 3 in PMS2). We used the Kaplan-Meier method to estimate 10- and 20-year cumulative risks for each cancer. We estimated the age-, country-, and calendar period-specific standardized incidence ratios (SIRs) for each cancer, compared with the general population.

Results: Following endometrial cancer, women carrying MMR gene mutations had the following 20-year risks of other cancer cancers: colorectal cancer (48%, 95% confidence interval [CI] = 35% to 62%); cancer of the kidney, renal pelvis, or ureter (11%, 95% CI = 3% to 20%); urinary bladder cancer (9%, 95% CI = 2% to 17%); and breast cancer (11%, 95% CI = 4% to 19%). Compared with the general population, these women were at statistically significantly elevated risks of colorectal cancer (SIR = 39.9, 95% CI = 27.2 to 58.3), cancer of the kidney, renal pelvis, or ureter (SIR = 28.3, 95% CI = 11.9 to 48.6), urinary bladder cancer (SIR = 24.3, 95% CI = 8.56 to 42.9), and breast cancer (SIR = 2.51, 95% CI = 1.17 to 4.14).

Conclusions: Women with Lynch syndrome who are diagnosed with endometrial cancer have increased risks of several cancers, including breast cancer.

Jackie07 · 02-08-2013, 03:47 AM

Adv Cancer Res. 2012;113:121-66. doi: 10.1016/B978-0-12-394280-7.00004-X.
Lynch or not Lynch? Is that always a question?

Colas C, Coulet F, Svrcek M, Collura A, Fléjou JF, Duval A, Hamelin R.
Source

INSERM, UMRS 938, Centre de Recherche Saint-Antoine, Equipe Instabilité des Microsatellites et Cancers, Paris, France.

Abstract

The familial cancer syndrome referred to as Lynch I and II was renamed hereditary nonpolyposis colorectal cancer (HNPCC) only to revert later to Lynch syndrome (LS).

LS is the most frequent human predisposition for the development of colorectal cancer (CRC), and probably also for endometrial and gastric cancers, although it has yet to acquire a consensus name. Its estimated prevalence ranges widely from 2% to 7% of all CRCs due to the fact that tumors from patients with LS are difficult to recognize at both the clinical and molecular level.

This review is based on two assumptions. First, all LS patients inherit a predisposition to develop CRC (without polyposis) and/or other tumors from the Lynch spectrum. Second, all LS patients have a germline defect in one of the DNA mismatch repair (MMR) genes. When a somatic second hit inactivates the relevant MMR gene, the consequence is instability of DNA repeat sequences such as microsatellites and the tumors are referred to as having the microsatellite instability (MSI) phenotype.

However, some of the inherited predisposition to develop CRC without concurrent polyposis, termed HNPCC, is found in non-LS patients, while not all MSI tumors are from LS cases. LS tumors are therefore at the junction of inherited and MSI cases.

We describe here the defining characteristics of LS tumors that differentiate them from inherited non-MSI tumors and from non-inherited MSI tumors.