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Post by CheenaGringo on Mon Mar 24, 2014 8:52 am

Last weekend, we watched the movie – Dallas Buyers Club. For those who haven't seen the movie, here is the basic premise to this true story: electrician/rodeo cowboy, Ron Woodroof all around crazy fun loving guy is told he is H.I.V. positive and has 30 days to live. He crosses the border into Mexico, learns about alternative treatments not approved NOB and ends up living 7 more years.

This got me thinking about just how I might handle things if I were to be informed I had cancer and some other potentially terminal disease that could reduce my expected lifespan. Not a fun topic and one that may be very difficult since it requires speculation if you (or someone you are close to) hasn't been put in this position?

There are numerous questions which can or need to be addressed and I will start with a few and encourage others to add more:
1)Will the first prognosis by one doctor be adequate to send you over the edge?
2)Once the initial shock sets in, how many 2nd, 3rd or 4th opinions would you be inclined to seek out?
3)What level of ownership of the disease do you figure on accepting?
4)At what point might you be inclined to take a hard look at alternative treatments?
5)Since “assisted suicide” is allowed in some places, would this be a factor?

Hopefully, this can be a freewheeling and frank discussion that can be of benefit to a forum member in the present or in the future?

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Post by Trailrunner on Mon Mar 24, 2014 9:19 am

1. No.
2. One more from a highly regarded specialist.
3. Whatever is appropriate, not that it would make an difference in the outcome.
4. Right from the beginning.
5. Absolutely!
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Post by CanuckBob on Mon Mar 24, 2014 9:40 am

Having had cancer I can answer from experience:

1. No
2. I got a referral to one the highest regarded specialists in Canada.
3. 100%
4. I did my homework and was interested in what worked for countless others. Fortunately I had a cancer that was considered "curable" under the right circumstances and the right procedure. So far so good.
5. Didn't give it a thought.
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Post by Lady Otter Latté on Mon Mar 24, 2014 10:40 am

We are all dying. Some of us will be given a time estimate and others will never know it is coming. I believe being given notice is a gift that comes with a high price.

My answers would be different depending on the diagnosis, treatments and prognosis. Am I being given a 90% chance of surviving for 10 years with radiation or a 15% chance of survival for two years with complicated surgery, chemo, and radiation?

I think I owe it to myself to know the disease I have, how it (usually) works and the reality of proposed treatments as well as what chance for remaining life (and its quality) I would be "buying" with my pain and suffering. I would get at least a second (if not a third) opinion. I would carefully consider ALL my options for every step along the way, including alternative treatments and assisted suicide.

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Post by CanuckBob on Mon Mar 24, 2014 11:15 am

I imagine there are also different trains of thought depending on your age. Hearing the news at 47 versus 77 is a big difference.
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Post by Trailrunner on Mon Mar 24, 2014 12:00 pm

Why?
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Post by CheenaGringo on Mon Mar 24, 2014 12:08 pm

While I had not intended to get back into this conversation this early in its development, here are a couple of articles which may provide food for thought and generate additional comments:

"Blindsided by cancer: 5 things to do": http://www.cnn.com/2014/03/12/health/cancer-blindside/index.html?hpt=hp_t3

"Cancer robbed me of my health; now, I'm taking it back": http://www.cnn.com/2014/03/07/health/fit-nation-jamil-cancer/index.html

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Post by CanuckBob on Mon Mar 24, 2014 12:16 pm

Trailrunner wrote:Why?

Well if it's not obvious then there is probably no use for me to explain it to you and end up in some fruitless debate.

Carry on por favor......
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Post by Trailrunner on Mon Mar 24, 2014 12:19 pm

Nice answer.
I don't believe your life will be any less precious to you when you reach 77 (and I hope you do) than it was to you at 47.
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Post by CanuckBob on Mon Mar 24, 2014 12:51 pm

It was the course of treatments I was referring to, so please don't assume things. Being in the healthcare service I thought that would have been obvious part for you, which I didn't want to debate.
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Post by Lady Otter Latté on Mon Mar 24, 2014 1:00 pm

If I was 47 I might be willing to submit to some tortuous treatments with a low chance of survival because a few people go on to live a normal lifespan and I could be one of them. At 77 with already declining health from other things I would be less likely to go for it.

My former mother-in-law. then 82, faced complicated surgery, chemo and radiation for a 20% chance to extend her life (possibly) for a few more years. She opted for a month-long tour to visit family and old friends and going home to live what life she had left. She was told she would die within three months and lived almost a year. All but the last month was pretty darn good. If she had been 42, she might have taken a swing at the pitch.
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Post by CanuckBob on Mon Mar 24, 2014 1:04 pm

Gracias. That is exactly what I was referring too and have an actual experience as my dad and I had the same cancer. He was 60 and I was 47. We took completely different forms of treatment since the risks and recovery at 60, for the route I choose, were far greater than at 47.
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Post by Pedro on Mon Mar 24, 2014 1:32 pm

i just heard of someone over 60 having their eyes, ear and part off face removed in toronto. no thanks and those doctors should lose their license.
what you said was pretty obvious to me bob,by the way. i figger i have surpassed the warranty date.
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Post by CheenaGringo on Mon Mar 24, 2014 6:47 pm

When I asked the question about taking ownership, it was intended to be for the person who had received the news. Unless it is yourself or an immediate and significant loved one, how can anyone attempt to take ownership and attempt to direct someone else in what they should or shouldn't be doing? That person has enough on their plate and probably don't need the stress induced by someone trying to help?

From one of the linked articles: "Don't run to the Internet. In the midst of your initial shock and fear, the worst thing you can do is jump onto the World Wide Web." In hindsight from a few personal experiences, I have to wonder just how one has the strength not to do so in this day in age? Granted there is plenty of misinformation out there but how can one resist the temptation to find out all they can? from reliable sources? Wouldn't that be taking ownership?

As for simply deciding that we have exceeded our warranty date - just how many of us did things in our younger years with a total disregard for any type of warranty. Maybe for some, that makes us want to live life fully on our terms and make sure that we have taken full advantage of the "options package" we were loaded with?

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Post by Lady Otter Latté on Mon Mar 24, 2014 8:02 pm

For me, seeking information is the key component of taking ownership. I can not imagine not using the internet to get information on a disease threatening my life. At the same time, there is so much misinformation and predators waiting to take advantage of the vulnerable that it is dangerous, so I understand the warning.

Maybe because I have seen the horrors that people go through in an attempt to live, I would be sure to know what I was letting myself in for before making decisions. A friend went through multiple surgeries, painful and expensive treatments in the U.S. and South Korea. He pursued a cure for years and died six months later than doctors had predicted he would die with no treatment at all. He never said he regretted those years, the cost, or the pain. He lived and died on his own terms. No one can judge that any of it was a mistake or wrong. It was his life, his death, and his choices.
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Post by Jim W on Tue Mar 25, 2014 10:04 am

Wow Neil, talk about a difficult subject to discuss.  So here goes.  On Feb 11, after 2 ct, pet scan, a TEE, and a couple biopsies I was kicked in the "GUT".  They found a tumor on my right ventricle and my Lymph nodes in my chest and abdomen were swollen  My Oncologist thought it was Lymphoma......Unfortunately the biopsy said something else.  I was diagnosed with Metastatic Squamous Cell Cancer from unknown Primary.(this is not skin cancer)  None of these conditions showed up in my physical, EKG or Stress Test.  They give me 6-9 months.  I am currently somewhat symptom free and playing golf 3 - 4 times a week.

So far I've gotten my Mexican and US Wills updated so my Debbie will be OK.  The heart tumor separated and went on a joy ride ending up in a pulmonary artery, landing me in ICU Saturday and Sunday night.

1.  NO
2.  had several Biopsies including the Mayo clinic.
3.   I accept ownership....like I have a choice?
4.   This is a fairly rare cancer, I found one study that shows 29% receiving Chemo make it a year, while 20% untreated make it a year.
5.  Would never consider assisted suicide.

Now that legal issues are settled, Deb and I are visiting friends, playing golf, and squeezing all we can out of each day.  There has been a lot of tears and laughter, and of course the Why Me?   On Thursday we get the results of the Brain MRI   Always thought Lung Cancer or Liver issues would be my downfall.....certainly not a rare cancer.  Most of all We. will continue to enjoy our quality of life, stay In touch with our friends from Mexico,  enjoy our 9 grandchildren.

Hope I didn't get to far off topic,  just really tough pill to swallow for a 66 year old feeling healthy male.
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Post by viajero on Tue Mar 25, 2014 10:35 am

Jim,you already know how I feel about this sad news.
Take care amigo.
Chris

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Post by espíritu del lago on Tue Mar 25, 2014 11:16 am

My condolences and hang in there!  Prayers sent..
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Post by Trailrunner on Tue Mar 25, 2014 11:36 am

Aw, Jim, I am so sorry to hear this very sad news. Sounds like you've done all the right things and you and your doctors are a good team. I wish you peace, the absence of pain, and a medical miracle revealing this all to be a big mistake.
All the best to you and Deb, Jim.
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Post by Mainecoons on Tue Mar 25, 2014 3:32 pm

Thanks for sharing your story Jim, I can only hope that if something like this shows up for me I will have the good sense and courage you are showing us here.

I'm a two year prostate cancer survivor about to turn 70.
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Post by texunsam on Tue Mar 25, 2014 9:17 pm

Jim,

I haven't met you, but we did talk on the phone.....I can only say Peace to you my Friend!!!

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Post by Lady Otter Latté on Tue Mar 25, 2014 9:53 pm

Jim, you know what I think and how I feel.
It is an honor to share even a small portion of this journey with you. Thank you for sharing yourself with us.
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Post by zenwoodle on Wed Mar 26, 2014 1:13 am

Your shirt is on the way Bud.
Wear it with the pride and respect that Union Ajijic has for you and Deb.
Talk to ya soon.  Beer Beer 
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Post by Jim W on Wed Mar 26, 2014 7:06 pm

zenwoodle wrote:Your shirt is on the way Bud.
Wear it with the pride and respect that Union Ajijic has for you and Deb.
Talk to ya soon.  Beer Beer 


Thanks Ivan, received it today.......will post a photo Sunday. You and Phil are special people.... givers of yourself! Deb and I are proud to have contributed in a small way to help this program.

Jim and Deb
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Post by Jim W on Mon Mar 31, 2014 11:15 pm

CheenaGringo wrote:When I asked the question about taking ownership, it was intended to be for the person who had received the news.  Unless it is yourself or an immediate and significant loved one, how can anyone attempt to take ownership and attempt to direct someone else in what they should or shouldn't be doing?  That person has enough on their plate and probably don't need the stress induced by someone trying to help?

From one of the linked articles: "Don't run to the Internet. In the midst of your initial shock and fear, the worst thing you can do is jump onto the World Wide Web."  In hindsight from a few personal experiences, I have to wonder just how one has the strength not to do so in this day in age?  Granted there is plenty of misinformation out there but how can one resist the temptation to find out all they can? from reliable sources?  Wouldn't that be taking ownership?

As for simply deciding that we have exceeded our warranty date - just how many of us did things in our younger years with a total disregard for any type of warranty.  Maybe for some, that makes us want to live life fully on our terms and make sure that we have taken full advantage of the "options package" we were loaded with?



I ran to the internet....total waste of time!
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