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How do you deal with the decisions?


gchang817

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I know there are a lot of great caregivers here, awesome advocates.

What do you do when you feel like you made a lot of mistakes along the way? Small oversights the doctor may have made in his treatment that truly effected him, and probably caused suffering or less chance of survival?

Just feeling an extreme sense of guilt lately that I was not more careful in researching these topics. I feel like i found this great resource of a website too late.

How do all you deal with the results of your decisions?

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In my opinion...you make the best decision you can with the best available infomormation at the time the decision is necessary. It's pretty easy to play monday morning QB. I would try not to focus on it. You did all you could do, under the guidance of trained professionals. In addition, i don't believe one decision that could have gone either way would create any more troubles than going the other way. Sometimes it's the crap shoot that is cancer. Try this for this person, it works, try for another, it fails miserably.

Please try not to worry too much. Praying you find comfort in the decisions that you have made.

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Hi Mike--

I can certainly understand your concerns--but I think you really have to give yourself a break. Throughout this journey, I have simply been amazed to find that medicine really is "an art, not a science", especially when it comes to treating Stage IV lung cancer.

It seems like a lot of what happens is trial and error...doctors just don't know if Carbo/Gemzar is best to start with or Carbo/Taxol is better...so you do the best you can with the information you've got.

I know that sounds really scary when the stakes are so high...but this was really what I learned from my experience. So, please be gentle with yourself.

I wish you strength.

Best,

Leslie

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gchang,

I echo what Leslie and JB have said. We weren't big on Monday morning quarterbacking in our house either. Some things worked, others didn't, and there will always be questions. I see your Dad's(?)profile and understand why you might have questions.

I armed myself with as much information as possible, asked the doctor a billion questions, explained stuff to my husband, but the actual decisions were always his to make. I simply supported the decisions he made. That's all you can do. Don't muck up your brain with a lot of other stuff, stay focused on the time and treatment for today. What is behind you is done and over with.

There are always second opinions to be had of course.

Best wishes,

Welthy

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I began looking at his records from previous biopsies and discovered that the lab report on the specimen said that he had squamous cell lung cancer. He had also been treated previously for his prostate cancer with taxol/taxtotere. It just leads me to believe that his oncologist made a lot of errors. I am trying to get him to switch doctors now but it may be too late. His blood counts are constantly low. I am afraid to tell him that he is in bad shape. He does not want to see anymore doctors nor does he qant to go through anymore tests. I just dont know if he understands the depth of the situation, feeling really helpless and hopeless.

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Yikes,

I know exactly what you mean. But because of the mistakes made and the new technology or treatments or even mindset about this disease, that I (we) have a chance to help make the journey a little smoother for those who travel the path behind us.

We can always go back and see or interpret things that we could have "done better" or should have known to do, hindsight is always 20/20...

The first year after my father passed away was a year of firsts for me of hearing about the targeted drugs like Irissa and tarceva, and I met my first lung cancer survivor who said (out loud mind you) "I'm not ashamed of having LUNG cancer. I'm not going to hide anymore. I deserve the same care as the woman sitting next to me wearing a PINK ribbon and if my doctor doesn't treat me with respect and if he isn't a POSITVE part of my medical support team- he's fired. HE works for ME"

I toured a medical research center which focused on lung cancer and gene therapies, touched a cancer-cell seeking machine and learned about all the clinical trials out there that "regular" patients like my dad hadn't had the opportunity to explore.

WOW...new drugs and a new "kind" of survivor, research and clinical trials......how would my dad have benefitted from that?

Oh, they are now doing more and more bone scans as a routine dx. tool....(they didn't do it when my dad was dx., only if there were symptoms- would doing that earlier have saved his life?)

See, I ask myself each and everytime something new comes on the pike or when I learn of someone else doing things differently....would this have saved my dad?

And I hope one day that the answer to questions like that is commonly "yes", so that the lc fight for those passed wasn't for nothing..and their journeys pioneered a path towards future cures.

You can't beat yourself up for what you didn't know, or decisions once made....believe me...the blame game just isn't productive and can drive us crazy, run us in circles.

Patients and their family members/caregvies are the "home-team". There are so many other distresses and emotional issues facing those with this disease from the starting gate already.

Just keep talking about expectations, and keep your lines of communication open to each other so that you're both on the same page with each other and the medical team.

After Dr. Sam (a member here, passed away) I realize that even if you did everything you were "supposed" to do, took all the right steps, asked all the right questions and knew all the right people, and heck, maybe even if you were a doctor yourself....that things STILL will be unpredictable and uncontrollable and that each individual will have a result all their own....

I realized that results didn't necessarily equate to the decisions made... and that thought made dealing with the enormity of our lc journey much more managable...and I no longer spent time beating myself up for mistakes I didn't know I had made until years later.

Wishing you some comfort with decisions past and present,

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I don't know if I can touch the previous posts, but I know what you mean. Mom and I "Monday morning quarterbacked" my Dad's treatments (not cancer, but still difficult and completely foreign) and it was exhausting! Mom didn't really seem to want any of that. Just going through the treatments were enough for her.

This is my answer to your question: You do the best you can with the information that you are given. And hindsight is always 20/20. When you know better, you do better.

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Don't dwell on the past but enjoy the present and Look forward to the Future!

Coulda shoulda wouldas and 5 $ will get you a small Latte at Starbucks!

Cherish the present and Pray for the Future..

remember No matter what, our outcome in life is determined by a greater force than a doctors. the Doctors are buying us time with our loved ones, Thats all there is to it. The more time they buy, The more time we have to enjoy and cherish our time with our loved ones

Prayers and Positive thoughts that the sun comes out in your part of the world tomorrow and all the clouds go away.

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There are such a range of emotions, but guilt, it's just not warranted.

You didn't put your loved one in the position they are in. The cancer did.

Any help or care you have offered, if done out of love, was appropriate and enough.

As a caregiver to someone with Lung Cancer...it's not like caring for someone with a cold. The challenge is great and the odds are stacked against the caregiver...as there is never a black and white right or wrong opinion.

When mom was assessing her course of treatment, I told her, do not let my reaction make her feel like I didn't approve. When she decided I broke down. I broke down because I didn't like ANY decision. I didn't like that we had to be here in the first place.

It's tough. But please don't feel guilty...the cancer is to blame.

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I think we all have been there and all understand how you are feeling. See for me, this is my job, not from a clinical aspect, but I work with cancer drugs and studies etc. Man, have I second guessed myself. Should I have pushed for a more agressive surgeon for my sister? Because I'm sure I could have found one. But at what cost, and how would I have lived with myself if my pushing had a negative not positive effect.

I wish I knew how to tell you to not feel it. I live with some guilt to this day over my mother's death from vascular disease. Woulda coulda shoulda is right. But I know I can't change what happened and I know in my head that so much of it is not really within our/medicine's control. But I second guess anyway. So while I can't tell you how to stop it, I can tell you that I think it is pretty normal.

But folks like me who work in this field, we have loved ones that get cancer too. And loved ones that die from it. And people I work with themselves have battled it, some have lost that battle.

It is the one thing that upsets me when I hear people say that those of us in the field don't want to cure cancer, because then we would be out of a job. Well guess what, I would give anything to be out of a job, as would all my co-workers. Because we want to cure it as much as anyone, and we don't get a free pass from it. But I digress and I'm taking the thread off course. I guess my point was, folks with much more knowledge than the average patient or caregiver also second guess themselves.

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Don M's comment rings so true to me and sounds exactly like something my wonderful Bill would have said (with an expletive inserted anywhere possible). In fact it is something he did say often.

I suffer greatly with "if only" thoughts. I am finally starting to be able to put them to rest. Partly from conversations with people here, with sharing experiences with others, and from realizing that there's no way anyone can do everything. You can't suddenly become a research scientist while dealing with a new diagnosis of someone you love, and managing treatment, etc. I have very good friends in the medical profession who assure me they wouldn't have seen all the things that are troubling me.

You're also bound by what the person undergoing treatment wants. Bill had no interest in clinical trials or getting lots of doctors involved. He was the one with the cancer, and he was the one being poked and prodded, so it's only right that he was the one making those decisions.

You just need to know you're doing the best you can. If there is something you can do differently today, then do it. Try to keep the "from this day forward" mindset or you'll drive yourself crazy.

Be gentle on yourself.

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Boy, lots of great insights here.

It's important to try not put the burden of outcome on your shoulders like that. May be easier to say than feel, but you've got to let yourself off the mistake hook. All of us get more proficient as we tackle issues, any issues, in life and none of us start out "perfect" (nor am I sure that we ever end up "perfect" in life....it seems that there's always more to discover).

I resolved the consequences of my decisions by reflecting that I had made the best decision I could with what I knew at the time that I had to make each decision along the way...that has to be enough.

All the best to you,

Linda

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