lindalouwho Posted February 21, 2018 Posted February 21, 2018 Hello. My father (83) was diagnosed with stage 4 lung cancer 3 weeks go. He was originally diagnosed 7 years ago, and had part of his lung removed. He is currently doing radiation to his spine. Found out he has a HER 2 mutation today. Will not do chemo, so Im just trying to learn as much as I can. Thanks.
Steff Posted February 21, 2018 Posted February 21, 2018 I am very sorry to hear about your father's lung cancer recurrence. My mom is also battling a recurrence and had a lobectomy as well. This time, her cancer popped up on the back of her trachea - no options for surgery this time. I am not very familiar with the HER2 mutation, but it sounds like there are probably some clinical trials going on for it. Is your dad open to trying other things besides radiation?
BridgetO Posted February 21, 2018 Posted February 21, 2018 Hi Linda, Welcome here. I'm sorry to hear about your father's diagnosis. I'm glad you found us. This forum is a good place to find information, hope and support. Please let us know how we can support you. Bridget O
lindalouwho Posted February 22, 2018 Author Posted February 22, 2018 15 hours ago, Steff said: I am not very familiar with the HER2 mutation, but it sounds like there are probably some clinical trials going on for it. Is your dad open to trying other things besides radiation? His oncologist said that Herceptin has been used, but is doubtful his insurance will cover it. After reading a bit about it, I highly doubt he would be a candidate for Herceptin, as he goes in and out of a fib. He won't do chemo. He is 83. They did an ablation on his spine, and then injected some sort of cement to prevent his spin from collapsing. They weren't able to get all of the tumor. He has another one in his spine, but it is inoperable. I think the goal right now is to try to keep it "contained" for as long as possible. It's very difficult because he does have some dementia, so he doesn't quite understand it all....
Tom Galli Posted February 22, 2018 Posted February 22, 2018 Linda, I understand your dad has a recurrence of lung cancer after his initial diagnosis and surgical treatment 7 years ago. I know how devastating recurrences can be having experienced a number of them in my treatment history. So where do we begin? You indicate he has atrial fibrillation. He had a [radiofrequency?] ablation on his spine, perhaps to address cancer metastasis in his spine? He's had a vetebroplasty or kyphoplasty procedure (cement injection) in one or several of his vertebra to prevent compression fracture of the spinal chord. And, your dad is 83 and is experiencing dementia. Clearly he has a lot going on, and your family has tough decisions to make. Let's examine the decisions. Essentially, they are to seek curative treatment, palliative treatment (treatment to relieve symptoms and pain), or hospice care. Those are the range of choices you must wrestle with to help a beloved family member. I can't tell you how to make this decision; I can only tell you how my wife and family approached my end of life medical treatment. Years ago, while I was facing declining treatment opportunities, my wife, daughter and I had substantial discussions about the degree of medical intervention I wanted to prolong life. As a result of that conversation, I made a medical power of attorney and that conveyed my desires for life-prolonging treatment. I did not want my life to end connected to a bunch of tubes and pumps that kept me alive without any hope of restoration of normal life. If I was going to die, I wanted to die without pain but pass with dignity. I wanted to be able to see my family, hold their hand and be cognizant of their love and comfort as my death approached. My medical power of attorney choice was to be admitted to home hospice and receive medication to eliminate pain but allow me to be aware of my family and friends. In helping your dad and family make future cancer treatment decisions, you should ask your doctors if these treatments have a good chance of restoring your dad to near normal life. If they do, they might be worth pursuing. Alternatively, perhaps your father has a medical power of attorney already established. If so, I'd abide by his wishes should dementia be a problem. I am indeed fortunate to be a long tenured lung cancer survivor. The downside of survivorship is experiencing the passing of many friends and loved ones who are afflicted with this horrible disease. Consequently, I know how difficult things are for you. I pray for peace for you, for your dad, and family. Stay the course. Tom
lindalouwho Posted February 23, 2018 Author Posted February 23, 2018 Yes, it is difficult. Tom, he had all of those things. T12. With the dementia, it's basically like the movie "Groundhog Day". He has one more radiation treatment, and he has asked several times, if at the end of rads he would be "cured". He refuses chemo because "he had a friend who died from it". He also said that 7 years ago upon dx. He has never changed his mind about that, and we all support that decision. I want to make sure we are doing everything he wants us to do, but it's hard to gauge. He doesn't fully understand it all. My mother does not want us to explain to him what stage 4 means, and his oncologist hasn't really given a prognosis- although the hospitalist told my us that he won't make it 9 months. Reading the stats pretty much backs that up, but...well...you know how stats are. Part of me wants to just tell him everything, but my mother will be furious. I feel so conflicted, as I know I would not want someone to withhold any information from me. But then again- would he just forget it the next day? Is this just the control freak in me, or am I trying to prepare for what is coming up?? I just don't know. Thanks for the replies!
BridgetO Posted February 23, 2018 Posted February 23, 2018 You're in a difficult spot, Linda. I don't have any great advice or much advice at all, actually. But I wante you to know I feel for you. I went through a lot with my mom, who lived at a distance (I had to fly there). She had metastatic breast cancer with ongoing chemo and also she broke her hip. She had some cognitive impariment, due, I think, from her chemo. She lived alone. She was not in agreement with what I thought was in her best interests. It was a difficult time for both of us. So I have some idea what you're going through. My only thought is that it's a good thing to maintain family relationships if you can, even when things are difficult and not going as you think they should. I wish peace for you and your family. Bridget O
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