What would you do?

HeartofSoul said:

A different way to see things
There are ways to communicate her prognoses that are not as cold or rigid as numbers or percentages. If your research says 20% chance of survival, transform that statistic to say to her that she could very well be that one person to go beyond the expectations of others that do not know her. Create a scenario that would be easier for her to understand. A survivor who is in a remote mountain side with limited supply of food and water as temperatures drop with no compass often will instinctively make the very best of a difficult situation. The survivor will look around and see possibilities for life. To climb out of the valley, she will look to scale a steep slope, ration her short supply of food and water, keep moving to avoid frostbite and be aware of the wild animals that lurk. Using this approach your mom will better understand her current environment and the challenges that await her. In her mind she may be able to project herself within reach of a second chance at life.

There is a movie called that came out in Feb 2006 called "Eight Below". It was a real life story of 7 Siberian huskies and one malamute that were stranded in an abandoned outpost in the South Pole. For the next several months the huskies supported each other to find ways to survive the late winter and spring seasons so they could live to the next day, not knowing if or when relief would come. While not all of the Siberian huskies made it, some did and were located by a team of rescuers in helicopter that brought them home. The movie is one of great inspiration and I would recommend you and your mom see it. I never forgot the story and you won’t either.

mafaldas said:

Tracey,
I just wrote a long
Tracey,

I just wrote a long reply... and it was not posted. Ugh. Here it goes again. (Well, at least my mom's cancer has taught me to laugh at mishaps like these!)

I recently faced the same predicament. My mother was diagnosed with a grade IV brain tumor: always, 100%, sooner-or-later fatal. The doctors decided to keep her in the dark about her prognosis. (She lives in a country where patients right are not enshrined, like the in the United States.) I disagreed with her doctors, since I also think that patients have a right to know, so that they can make the best health, personal, and financial decisions. For example, my mom is convinced she is going to beat this and live another 30 years... and she makes some decisions based on that assumption.

In hindsight, however, this decision turned out to be the best for my mom. She finished her treatment with none of the debilitating side effects that plague numerous other patients. She is about 90 percent back to her normal routine. In keeping her in the dark, I might not have bought her any more time. But, I did buy her more peaceful, serene time. Telling her the she had statistically 12.6 months to live would not have helped her. It might have made these past few months more anxiety-ridden and unpleasant. This anxiety and fear might have also shortened her life even more.

I also have to add that this arrangement works because my mom and I have a very close and trusting relationship. She has relinquished many important health, personal, and financial decisions to me. And, I do make decisions based on what I know about her prognosis. It will also require being careful with your words and actions so that they don't betray the truth. That can get exhausting.

I am not advocating telling your mom or keeping her in the dark. Only you know what will work for you and her. But, I am saying that if you decide being less than forthright with your mom is the best choice that it can work and that it does not make you a bad person.

I also thought this article about how a cancer hospice doctor dealt with her own terminal cancer diagnosis might be helpful to you. http://www.nytimes.com/2010/04/04/health/04doctor.html

Good luck!

Barbara53 said:

follow your mother's lead
I know exactly how your feel! My mother was diagnosed with 3C OVCA in Feb 2009, at age 78, only it was really stage 4. Anyway, she had optimal debulking surgery followed by standard first line chemo (carbo/taxol). Her blood marker (CA125)never dropped low enough to call it remission. Rather, she hit a not-too-uncomfortable holding period for about 7 months, mostly because she responded well to tamoxifen. Now she is going down.

My mother is a strong and determined woman, and early on she started shaping her own story. The way she tells it, between the surgery and the chemo, there was no more cancer in her body. This worked for her for 7 months, during which time she seriously believed she was getting better. She is only now seeing that she is getting worse. Her oncologist has explained recent evidence of cancer as "it can come back in a whole new way," which is consistent with how mom thinks, so it works.

I tell you all this because denial has worked very, very well for my mother. She has been happy and falsely positive. As her caregiver-confidante, I've never cheered that on because I wanted Mom to know that I would always be honest with her. There have been a few times that I've changed the subject, though! It has always felt right to find opportunities to tell her that I don't expect specific outcomes, and that I'll be there for her no matter what.

Choose your own path, but you can't go wrong by following your mother's lead. She may do best to believe that she will be one of the miracle cases.

HeartofSoul said:

Doctors dont walk on Water but there very Skillful water skiers
Imagine if the medical field and DR didnt have large studies, statistical analysis, data, or projections based on the type of cancer you have, the stage of the cancer, or how effective the treatments are for that type of cancer. The patient and or family then asks the Dr what their prognoses is overall and for 5 year survival period including remission and recurrence rate. The doctor's reply would go something like this;

Well Mr Smith, I really cant give you any answers because i have no idea & its not my job

Mrs Morris, we just can hope for the best and see what happens

Bob, we just treat patients as thats all we were taught in medical school

Kathy, its really about instincts as we have no way to monitor the outcomes for any of the hundreds of patients I see every year. Sorry

What happens if we see a shortage of doctors over the next several generations and fewer specialists, fewer choices, more rationing, longer wait times, and pay more for it.
When you see the best and brighest decide to become lawyers, accountants, CEO's, and dentists instead of go into the medical profession, we may wish for the good old days when doctors were "throwing out statistics". The fact of the matter is a small percentage of doctors today should find another field, most do their best within their speciality with mostly successful outcomes, and there is another group that many of us who owe our very lives to for going that extra mile and never stop believing in us the same way we and our caregivers didnt stop believing in us