FIL changing his mind about treatment/surgery (LONG)

dstoeck · Regular Joined: 18 Oct 2007 Posts: 22 Location: Alabama

Hi,
My FIL was diagnosed this past August with EC (Barrett's esophogus) and went thru various screens, tests, and consults. The result of all this was for him to have 6 weeks of chemo/rad (cisplatin/5U + rad) followed by surgery to remove his stomach. My FIL lives in Cincinnati where he is receiving the chemo/rad. He and my MIL decided to go with Cleveland Clinic for the surgery. (yeah!)
Next week he will undergo the last week of chemo (5 day drip of 5FU) and then he'll be on a rest period until he has the surgery sometime in December.
I've had a lot of people in my life who have suffered, lived and died due to various cancers and the related treatment. My husband's family has not. This is all so new to them. My FIL has not lost his hair, had any serious side effects to the treatment and is actually gaining back the weight that he lost before treatment. He's doing really well. But his quality of life, according to him (and that's what's important) has declined due to being tied to a pump that feeds him for 12 hours via a J-tube in the night, trouble with eating right now due to the radiation, and the loss of energy.
Right now he is depressed and just wants to give it all up. I've suggested to my MIL to have him talk to a friend of ours who doesn't live far away that was diagnosed with cancer of the vena cava. She is cancer free today because of the Cleveland Clinic. She had to endure months of chemo/rad therapy and all of the nasty complications. I want him to see how well he really has it....but he's convinced that he's done. No more suffering.

The family is quite upset and wants him to continue. I know that he's afraid. Very afraid of the surgery. He doesn't have much of an education (but 2 of his sons (including my husband) has PhD's in a field of biology and a daughter has a MS. The rest have bachelors or just High school - 7 kids in all) so he really just doesn't understand how cancer works. The radiologist, when asked by FIL about not having the surgey, told him that he had a 50/50 chance of reoccurence. He took that as a pretty good statement and feels that that is good enuf for him.
My husband has talked to him and expressed to him that "dad, you don't want to die that way."

Any suggestions? I've read many posts and they have been very helpful. I want to repsect his wishes. I had a friend with Metstatic melanoma that gave up, but he was Stage IV-V - there was no cure for him. My FIL was assessed at Stage II, with no metastasis. His outlook is very good with an agressive treatment of chemo/rad followed by removal of his stomach.

brainman

Hi,
I am very sorry to hear about your Father In Law. He is indeed facing a difficult choice and you are wise to want to respect his wishes. Obviously, his choice needs to be based not only on his personality but it needs to be an informed decision. Regardless of his choice, his quality of life HAS been changed permanently. Untreated EC is indeed a terrible way to die. But living without a stomach, while doable, is not a great way to live. I would not want to make that choice under the influence of depression... rather, I would not want your FIL to make that decision while he is depressed. Does his medical team know about his current mental state? They can give him an antidepressant so that he can make a decision without the dark cloud over him.

Is it possible for you (or you husband) to go with your FIL to see his oncologist? You can ask some leading questions that your FIL may not be thinking about but needs to hear the answers before making a decision. As about other options. A longer delay between the end of chemo and surgery might give your FIL to again change his mind.

I am thinking about and praying for you and your FIL.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
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dstoeck · Regular Joined: 18 Oct 2007 Posts: 22 Location: Alabama

thanks for your compassion and understanding.

With regards to the use of antidepressants...well, my in laws are old fashion and even taking a simple pain killer for head ache or a minor pain is out of the question for them. So this whole world of medicine and treatments is really foreign to them. They've had to open up their "little world" (my definition of how they live) and live among the rest of us that live in the 21 centuray. Matter of fact, My SIL (the MSc person) called to tell me that FIL was feeling better and that Mom was thinking of not calling the doctor after all (about his depression). I have depression and know that when it hits it tends to cycle with each down hill moment deeper than the last one. the Up cycles tend to make you think that you're going to be ok. but then another down cycle hits.
I explained this to my SIL. She said that she would relay this to mom. I told her that she (mom) needs to call the docter regardless. I also told her that dad is just not thinking right due to the depression. Depression (which is a bad choice of words) is not about feel bad or sad, it's a chemical imbalance that affects your thought processes...but you all know that.
So, yes, we are working in the that direction. SIL goes with mom and dad to their doc visits. The other PhD son has gone to one as well. We live in Alabama and are too far away to help out, although my DH plans to be in Cleveland for at least a week to help out there.

but you verified my feelings...the depression is talking and he's not thinking clearly. thanks.

brainman

Just one clarification: Only someone with proper training and through direct contact with you FIL can make a diagnosis of his mental health. I am making only a suggestion of a possible diagnosis. You FIL needs to see his doctor or psychiatrist for a proper diagnosis of his metal health.

It is so sad that people often overlook their metal health when it is so important to their overall health picture.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

dstoeck · Regular Joined: 18 Oct 2007 Posts: 22 Location: Alabama

no reason to clarify. Of course his doctor needs to make the assessment, but as someone who has depression and is being treated successfully, i see similar symptoms in my FIL. We (the family) are trying to convince mom to call the doctor about his symptoms and what he's saying now and not wait until he has another down moment. She doesn't know the condition or understand how someone who is depressed will go thru these cycles of good and bad.

but thanks for your concern. Smile

brainman

This might sound kind of strange, but reading about your father in law reminds me of my daughter. She had a baby in July. She and her husband agreed to have it the way her mother gave birth to my daughter... naturally, i.e. no pain meds. That is until it started to REALLY hurt. She pleaded with the doctor for medication but by then, it was too late. So, she got her wish and gave birth to my grandchild without medication. Rolling Eyes

The analogy is this: If your father in law does not treat his cancer aggressively, there might come a time when he wishes he had but it will be too late to do anything.

My mother opted for no treatment when she was diagnosed with brain cancer in 1998. Two months after the diagnosis she died peacefully. I totally supported her in her decision and still thing she made the right choice. But I do know that she had all the information she needed to make that decision and was not under the influence of depression. I am glad that she was able to make the decision for herself!
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

dstoeck · Regular Joined: 18 Oct 2007 Posts: 22 Location: Alabama

it doesn't sound strange at all. It's a good analogy. He really doesn't get a second chance at the possibility of a cure. He's just really scared right now. We know that.

And yes, many times no treatment is the correct answer as well. I've also respected my friend's decisions and know it was the right way.

thanks.

dstoeck · Regular Joined: 18 Oct 2007 Posts: 22 Location: Alabama

FIL had an anxiety attach on Friday when sent him to the hospital where they ran various tests to make sure that his abnormal breathing wasn't due to a lung clot or some other physiological reason. On Mon they met with the oncologist before starting his last regimen of 5-FU. The oncologist apparent talked straight with FIL stating that 1) he was being treated with the assumption that he was going to have the surgery, if FIL wants to not do the surgery the oncologist could provide him with a longer chemo/rad plan with stronger doses.....but that's not what FIL wants. 2) the oncologist explained to him how cancer works and that the chemo/rad was used to reduce the tumor and hopefully stop any metastasis from occuring. The surgery is required to hopefully remove all cancer tissue from his body so that he can continue to live - albeit without a stomach, but hopefully free from cancer. Success is better with surgery.

MIL said that FIL is in better spirits today. Maybe he's starting to understand. He is eating better and feeling better. So the Chemo/Rad treatment has done it's job. He's gaining weight too. Which is excellent.

brainman

I know very little about stomach cancer and nothing about the surgery involved to take it out. Do you know if it can be done laparoscopically i.e. with only two or three very small incisions rather than more traditional surgery? I know that gallbladders are removed laparoscopically and patients usually do very well. Just a question that came to me as I was reading your last post.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

dstoeck · Regular Joined: 18 Oct 2007 Posts: 22 Location: Alabama

I don't know the details of the surgery. I don't know if the procedure is advanced enough (can't think of a better set of terms) to allow itself to be done laproscopically. It would be nice if it was, but it is pretty major surgery.

dstoeck · Regular Joined: 18 Oct 2007 Posts: 22 Location: Alabama

My FIL made it thru the chemo/rad treatment. It was rough on him and he was really ready to throw in the towel, but the doc told him that he better get'er done. So he's been enjoying life. Eating well (even had turkey at Thanksgiving) and now waiting for Friday morning when he'll have his surgery.

Is there anyone on the group that has had a gastrectomy? What advice can you provide to the family as to what to expect post-surgery?

In

dstoeck,

Been following your and FIL story. I haven't been able to say much in advice, But wanted you to know that I'm thinking of you, and it's great that he is feeling good. Turkey and all.
Might be a great Christmas.

Hope the surgury goes well- let us know.
_________________
Thinking of you Inica

*Administrator*

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~Car Accident- Broken Back, Ribs, Spleen
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