Lung Cancer - What now?
July 17, 2012 12:58 PM   Subscribe

80 years old, lost 40 pounds since May, no appetite, weakening, diagnosed with lung cancer today. What can we expect now?

He's 80 years old. Quit smoking about ten years ago. In the six weeks, has lost about 40 pounds, spent the past two weeks getting multiple tests before finally arriving at the diagnosis. Previous medical conditions include laryngeal cancer and prostate cancer, both over a decade ago; as well as cardiac bypass surgery, also over a decade ago. Has an aortic aneurism (repaired). Began coughing blood a week or so ago. Patient is clearly weakening and now feels too weak to drive himself, so will probably need care. Has also lost his voice significantly over past few days.

Though the doctor will share some info with me, the sick person is minimizing things. The diagnosis was today, so we have yet to be offered treatment options. I'd like to know what options we might be offered, what thoughts people might have about this particular case, and ideas on where to go from here. No punches need be pulled. Thank you so much.
posted by soulbarn to Health & Fitness (30 answers total) 3 users marked this as a favorite
Does he have a home health-aid? You may be eligible for an increase in hours based on the new diagnosis.
posted by griphus at 1:00 PM on July 17, 2012

He does not have any at-home help yet. That's something we're arranging. We're dealing with a very set-in-his-ways old fellow; whoever we get is going to be dealing with a lot. But I suppose the professionals in this field know that.
posted by soulbarn at 1:02 PM on July 17, 2012

I'm sorry - this sounds really grim. I would ask about hospice - might not be time yet but it's better to get them involved with care sooner than later. Am assuming no sensible treatment options, which might not be the case. The person may be offered surgery, chemo, radiation - doesn't sound like the cancer has been staged yet and until that happens and you know more specifics - like whether it's a metastasis from one of the earlier cancers it's hard to say what sorts of treatments might be remotely useful.
posted by leslies at 1:03 PM on July 17, 2012 [5 favorites]

Oh, man. I am so sorry. IANAD or any form of medical worker. However, in my strictly non-professional, untrained opinion, you need to look into hospice care ASAP. Given this person's advanced age and what seems like a very, very rapid disease progression (a 40 lb. weight loss in two months is super-rapid), many forms of treatment will make him feel much worse without prolonging his lifespan. You/he/his loved ones need to take a hard look at what matters more... quality of life or length of life. In situations like this, you don't always get to choose both.
posted by julthumbscrew at 1:07 PM on July 17, 2012 [10 favorites]

Hi, sorry you're going through this. Both my grandfather and a very good friend of mine died from lung cancer.

My grandfather was in his seventies and at first he wanted to give chemo a miss and just stay comfortable. My uncle didn't like this approach so Grandpa did the chemo. He felt like shit most of the time and turned an interesting color of bronze. One day he felt pretty good so he decided to go out with his buddies to play some golf. He did 18 holes, came home, had lunch, took a nap and never woke up. He didn't suffer too much (except from the chemo) and frankly, I hope I'm as lucky when I die.

My friend apparently had cancer and was pregnant at the same time. She smoked a lot, and even through her pregnancy. About a year after her son was born she was diagnosed with lung cancer. She too lost a ton of weight and was coughing like crazy. She did everything you can imagine a mother with young children would do. I lost touch after the first few months because she cut me off. (I think a lot of that had to do with her freaking out about the cancer.) She died a year or so after her diagnosis.

Things have progressed quite a bit, my grandfather died 25 years ago, my friend about 15, there may be better, more effective treatments.

I'm guessing that chemo will be offered, but it really depends on what kind of lung cancer it is as to how successful that will be. Here is a link to a site that looks like it might have some good information.

This is a lot to deal with and frankly, I think the outlook is grim. I recommend some counseling for everyone, mostly to come to terms with how the disease progresses and how to deal with it.
posted by Ruthless Bunny at 1:08 PM on July 17, 2012 [1 favorite]

If you're going the hospice route, see if home hospice is an option that makes sense. It may or it may not, depending on the specifics of his condition, and the doctor will let you know if it's a viable option.
posted by griphus at 1:12 PM on July 17, 2012

Nthing a palliative care consult/home hospice if possible.

Adding that specifying a medical decision maker and doing advanced directives is important. You might want to change these documents a few times depending on the prognosis, but oftentimes elderly people with multiple serious health problems do not want to be placed on a ventilator, get a feeding tube, or have chest compressions/shocks in cardiac arrest, for very understandable reasons. Your family member may feel differently, though. The time your family needs to know about these preferences is *before* he gets too sick to tell you. You might think if you are doing hospice you don't need this, but you do. I have seen multiple situations where someone on hospice has been mistakenly brought to the emergency department as a code, and we don't find out about the hospice care until later. It always makes me sad.

Good luck and hope he is able to get the best care possible.
posted by treehorn+bunny at 1:17 PM on July 17, 2012 [5 favorites]

I would look at making his remaining time as comfortable and pain-free as possible, rather than pursuing an aggressive course of treatment that I would fear would degrade his quality of life without significantly extending it. My sympathies.
posted by Dasein at 1:22 PM on July 17, 2012

I am desperately looking for a FPP for you; it was a link to an article possibly in the NYT about cancer treatments and the cascade of debilitating interventions that often goes hand in hand with them. It also profiled oncologists who, given their odds and stage of cancer, chose not to treat their own illnesses at all.

Remember that your father's oncologist will give him treatment options but may not point out "Listen, you're 80 years old, you've already beaten your life expectancy for a man born the year you were by more than 20 years, and if you want to live out the end of your life with these awesome drugs, that's totally cool" as an option, too. Someone should make sure that's a choice available to him.

Whatever treatment or palliative options he decides on, please listen to treehorn+bunny - an advanced directive is really important, and a medical decision maker if you can get him to appoint one. You may not be able to get him to be that cooperative, though.
posted by DarlingBri at 1:38 PM on July 17, 2012

My grandmother was diagnosed with lung cancer a few years ago, after coughing up blood. She's going to be 85 this year. She had part of a lung removed and has been doing quite well. She also had another cancer ~30 years ago.

I know they're not the same person, but I thought things were pretty grim when she was first diagnosed and things turned around. I thought I would add a positive anecdote.
posted by disaster77 at 1:40 PM on July 17, 2012 [1 favorite]

Thanks all for the answers. There is a medical directive, and I'm the decision maker. I just dug it and a lot of paperwork out. As a couple of surmised, this is my Dad. Complicating matters is that I'm on the west coast and he's on the east coast. Complicating things further is that we have a 20-month-old. Complicating things further is that me, my wife, and son are about to head to Europe for a month-long vacation, something we've been anticipating for a couple of years.

But my instinct at the moment is to cancel the vacation so that my Dad can have some quality time with us and especially with his (only) grandson. If there's going to be a decline, whether it is short or longer, then I think the time to do some things to enhance his quality of life is now, when such enhancement remains possible. His deterioration has been very rapid, and though there's no way to tell whether the pace would continue, I think his ability to be cheered right now has got to be higher than it might be next week, or next month, or further down the road.

So, vacation likely cancelled. Quality time for a difficult father - who, despite his personality, I love and admire more than anyone I've ever met - is the first step. Medical decisions can be made in that context.

@DarlingBri, if you can find that article, I'd love to see it. I'll try to hunt it down, too. Thanks again.
posted by soulbarn at 1:47 PM on July 17, 2012

I believe this may be the article DarlingBri was referencing. It's definitely worth a read.
posted by julthumbscrew at 1:49 PM on July 17, 2012 [1 favorite]

This is anecdotal and not a medically based opinion -- my dad also had lung cancer which progressed quickly. His cancer metastasized quickly to the point at which there was liver and brain 'involvement' which sounded terrifying but wasn't as perceptible as I had expected. From my experience, every day changes and there were no great "improvements".

Nthing hospice. They are fantastic folks and excellent facilitators -- and they'll tell you as best they can the honest outlook of the day, the week, and the months to come . Also look into family medical leave for yourself which will allow you greater flexibility.

I also think the speed of decline is sometimes a mental state. If you can bring the cheer now and make some happy memories, accepting things exactly as they are today and exactly the way they manifest tomorrow, then you'd be doing something awesome for your dad and yourself.
posted by countrymod at 1:57 PM on July 17, 2012

You need to discuss DNR/artificial life support scenarios with your dad right now. It would have saved me a lot of grief with my grandmother (currently lingering in hospice) had I had those documents completed before her last hospitalization.

Also, don't cancel that vacation just yet. Your dad probably wants to spend time with you and your family, but he also might feel really shitty about upending your plans which, in turn, may do a number on his health. Every family is different, but get some rest, distance yourself from the diagnosis a bit, and think of whether you're doing something because you want to do it, or you're doing something because this is the way you should do it.

If there's one thing I learned about death in the last few years, it's that this is all a lot easier to deal with when you let go of any preconceptions of how you should be going about things and just trust yourself to make the right decision based on your knowledge and instincts.
posted by griphus at 1:59 PM on July 17, 2012 [5 favorites]

Also came here to recommend hospice. My mom is 87, has metasisized lung cancer. She has a live-in caregiver and the hospice nurse visits every day. Make sure your paperwork is squared away. Medical power of attorney and financial power of attorney. My mom is also in the 80 pound range and is foregoing any further treatment other than palliative care. It seems cruel to subject her to chemo and/or radiation, you may feel the same after you consult with doctors. Oh, and if you want to get info, ask a nurse. Doctors just aren't very helpful. Bon chance.
posted by fixedgear at 2:08 PM on July 17, 2012

Also, about cancelling your vacation. Talk honestly with your Dad about whether or not he wants you to come visit. Lots of folks love their grandchildren, but don't like having kids around when they're sick. A 20 month-old is adorable, and fun and a ton of work. If he's up for it, then awesome! If he's not, then no need to cancel your vacation. Perhaps you can visit him outbound to Europe and inbound on your return home. Two shorter visits may be preferable to one long one.
posted by Ruthless Bunny at 2:30 PM on July 17, 2012 [2 favorites]

@DarlingBri, if you can find that article, I'd love to see it. I'll try to hunt it down, too. Thanks again.

The How Doctors Die article julthumbscrew kindly links to was the basis of this FPP. That post was referenced in this later FPP on the NY Magazine feature A Life Worth Ending; that was how I found, as I missed it the first time 'round.

Reading both articles and both threads really clarified critical care treatment plan and end of life issues for me in a way that has been helpful to me recently in making care decisions in my own family. You may come to very different conclusions in your own family but either way, I wish you as many great days as you can get with your dad in whatever time is left.
posted by DarlingBri at 2:47 PM on July 17, 2012 [8 favorites]

nthing hospice; when my dad was first diagnosed with stage IV colon cancer and congestive heart failure, home hospice care was incredibly helpful. He loved his hospice nurse and she liked him even though he was kind of... well, pissy with everyone at first - most hospice care professionals are quite used to and able to deal with the mood swings and emotional difficulties of their patients.

FWIW, my dad was given 3 weeks to live in the fall of 2008; he is no longer in hospice and doing quite well. Not quite dancing on the doctor's desk as he declared a few years ago, but in relatively good shape for a man with his conditions. YMMV, of course.
posted by bedhead at 3:56 PM on July 17, 2012

Ask to see the palliative care consult at the hospital where your dad is being treated, if there is one. This is their wheelhouse.
posted by ocherdraco at 4:42 PM on July 17, 2012

If he gets in home care, make sure that you or a trusted friend drops in without prior notice every so often to ensure he's being treated properly.
posted by brujita at 5:52 PM on July 17, 2012

Coming back to add - my mother died of lung cancer 7 years ago. We waited too long for hospice - and while it was wonderful we should have gone to them sooner. My mom lived for a year and a quarter after her diagnosis and a lot of that time was ok in terms of pain, quality of life and time to say good-byes. I was a few hundred miles away and my kids were teens and pre-teens so it was easier for me to get back and forth but still very hard to do long distance.

Treehorn-bunny is so right about advanced directives - they need to be very specific and that can be a very hard conversation to have. Near the end of her life my mother-in-law's wonderful doctor sat down with her and us and went through very specific scenarios about what interventions she wanted or wanted to NOT have. It was very helpful in her final year and was not a conversation I had had with my mom in such detail (although I believe my father did).
posted by leslies at 6:25 PM on July 17, 2012

Thanks to all for the help and resources. I'm packing for the visit now. We haven't definitively decided to cancel the vacation, but in this case, I do think my Dad wants to see his grandson. I'm most saddened - right now - by the notion that my little boy will have no direct memories of this strange, free-thinking, maddening, wonderful man who I admire so much and who - sometimes to my benefit, and sometimes to my dismay - I'm so much like.
posted by soulbarn at 7:05 PM on July 17, 2012 [1 favorite]

I'm sorry for what you're going through. I went through something similar with my grandmother last year. I was with her when the doctor told her she had lung cancer and explained her options for treatment. My grandmother was adamant that she wanted no treatment other than pain relief in whatever time she had left. She'd seen too many of her friends struggle through their last days with treatments that seemed worse than the alternative to her. This was her decision, and we respected it no matter how much I'd want her here. After the doxtor explained to my grandmother what the consequences of her decision were he stepped out and I followed him. He expressed relief, in the hallway, that she wasn't opting to fight it. We started filling out paperwork for hospice, getting her dnr wishes, financials etc. in order and figuring out how to get her to see family one last time. We didn't know how much time we had, and honestly there were good days and bad...her sister flew in for a weekend and we did a video call that we projected on the wall so my grandmother could see all her nieces and nephews one last time and watch them open presents she "sent" them. Similar to your little boy, some of those nephews had little idea who the old lady on the screen was, but the event was primarily for grandma, and then for my dad and me to feel we'd done a good thing for her.
I was supposed to go to Europe on vacation too. My wife and I had arranged the trip before my grandmother was diagnosed. I wanted to cancel the trip but neither she nor my father would hear of it. There were good days And bad, when the pain killers were so disorienting that she had no clue where she was or what was happening, and until a couple weeks before our trip she seemed fine, like we had months and months together. About a week before the trip things turned one final time. She stopped eating, and started sleeping pretty much nonstop. We had one last conversation about three days before our flight. Technically the conversation was with my dog. I'd brought him with me to the palliative ward and put him up on my grandmother's bed where he started to lick at her face. It was the last time I saw my grandmother sit up, smile, etc. she spoke to him and petted at him for a couple minutes before laying back down. She didn't wake up on any of my following visits and my father kept pushing me that there was no way I should cancel the trip. She died three days into our trip and I understood why they'd pushed me to continue with the trip. She didn't need me in Toronto. My father needed me gone so he could be distracted by my emails and Facebook updates as trite as that sounds. the other thing I learned was that while my grandmother did want to see me before she died she didn't want me there all the time. When I was there she wouldn't yell or cry or in other ways relax...she felt that she had to keep it inside. She was different when it was just my father or neither of us around. So as much as I wanted to be there every moment toward the end, I guess I also had to give her a break every so often.
posted by dismitree at 10:15 PM on July 17, 2012 [1 favorite]

I don't want to scare you, but I would push a bit with the doctors to get some idea of what kind of prognosis they are thinking. Doctors are often very very bad at telling the patient or family when there is bad news and they can't be fully certain, but as someone who reads medical notes a lot, they often have informed guesses. Having that kind of informed guess would allow you to plan much better. But don't be angry if they're wrong. We're not very good at predicting how things will go.

I knew someone with lung cancer. I think they were diagnosed and offered chemo to try to shrink it a couple of months later. The doctor hinted at me a week after that that if the tumour didn't respond then the patient had maybe a few weeks. At that point, the patient was having difficulties walking, severe breathlessness with very minimal exertion, swallow problems, no appetite and massive weight loss.

Also wanted to echo all the above advice about getting palliative/hospice services involved as soon as you possibly can because they're generally fantastic.

If your father decides that there are certain types of treatment he does not want then have a fully official copy of all that in an envelope by the front door for the paramedics because in some countries they're legally obliged to keep you alive and get you to hospital if you can't prove that the patient didn't want that.

Good luck. I had some great times with my dad in the 5 weeks between when he was diagnosed with terminal cancer and when he died and although I'd give anything to have him back, everyone has to die sometime and I'm lucky I got to spend time with him.
posted by kadia_a at 10:06 AM on July 18, 2012 [1 favorite]

Sounds like it was previous metastisis. They will honestly not know what his time left will be. My mom just passed in April. Prior to that it was SEVEN years of severe metasisis from breast cancer. In Dec, she lost her ability to walk due to liver tumor progression. Is he urinating, are there congestion sounds (almost pneumonia-like sounding)? If there are multi symptoms of organ shut down (lack of urination = kidnies shut down; congestion = lung fluid/congestive heart failure) and the doc can confirm metasisis with no available treatment then yes, hospice is warrented (and free if he is a Medicare recipient). You will need the medical directive, DNR, and what was nice was hospice was the one who called the funeral as well as walked me through the process of dying. However, the best thing I did for myself (while morbid but I am a very 'need to know' person to cope) was read medical journals on what exactly happens with the dying process. When I was reading that, I saw that her lack of urination, lack of appetite, weak, lost of weight, confusion meant time was close. However, we had zero clue how close it was. She had 5 days to live after signing her hospice directive. However, my husband's father died of cirrhosis and his 'dying' process took a month (coma, etc). So again, everyone is different.

I did go on a weekend trip to Vegas with my husband when she was in the hospital in Feb. Doc said she was stable but couldn't continue chemo. But they could not tell me how long she could go without chemo before she died. She lived 3 months without treatment but it was a continuous downhill process that was very apparent as to what was happening.

Do I think you cancelilng your trip is a good idea? Perhaps. If you have power of medical attny. then you should get that stage IV, hospice prognosis from your doc. If he gives it, then yea, in your shoes, I would have cancelled. For me, anything that was more than a 4 hour plane ride was out of the question. But again, I also saw that she looked absolutely horrible even when she was walking. I KNEW her time was up and pretty fast.

Do what you can to see your father. I had a strenuous relationship with my mom but she needed me and all that went wayside. She also had a wonderful time her last day conscious with me and my 3 year old son. It gave her a burst of energy to hug him and tell him how much she loved him and she knew he was going to be someone special. While I got to speak with her the next day, her hallucinations came quick so it wasn't 'my mom' that I was spending time with. And again, the process was very profound. I"m glad I was there to experience it and hold her hand.

I wish you all the peace in the world and for him a painless process. MeFi mail if you wish since I just went through a boatload of legal, medical decisions, and emotional ones in a matter of 5 days when it was her turn.
posted by stormpooper at 10:33 AM on July 19, 2012

I thought I'd post a follow-up to this thread, in case anyone is interested. My father passed away on August 2, 2012, just a bit more than two weeks after I began this AskMeFi thread. It was a very rapid - shockingly so - decline, in a lot of ways. He was lucid for about ten days, but his lungs began to fail very quickly, and by the 12th day, he was no longer able to breathe on his own. It turned out that he didn't have lung cancer, and much of the first week after I arrived at his hospital was spent looking for a diagnosis - perhaps something fungal or bacterial. At the same time, lung biopsies were sent out for advanced analysis, and they finally revealed a "cancer process" that was causing uncontrolled bleeding in his lungs and arteries. This was, we were told, "cancer of unknown primary source," or CUPS (and it is exactly what the name implies; metastasis without the ability of doctors to find the original tumor.

And that's how it ended. My Dad's "death style" was very similar to what is citied in the above-linked article, "How Doctors Die" (he was a retired emergency room physician) and it was clear he knew he wasn't going to make it. On the August 2nd, at 6:30 in the evening, my brother and I agreed that it was time to let him go; he was given palliative medication, his ventilator was turned off, and he passed peacefully exactly two hours later with his sons by his side.

My Dad was a unique character; I wrote a book about him, and the time we spent together as I researched that book is something that I've always felt was a blessing, but am now especially grateful for (his obituary is here.)

I am also grateful to the AskMeFI community, though I must say that we were, in a way, lucky to not have to contend with the issues of hospice and rehabilitation; we just didn't have enough time. If anyone in the future is reading this thread and would like information or help, please contact me.

Thanks again to all.
posted by soulbarn at 12:30 PM on August 17, 2012

soulbarn, my condolences on the loss of your father. It sounds like he made the most graceful exit possible. I'm glad you were able to be with him at the end.
posted by DarlingBri at 3:18 PM on August 17, 2012 [1 favorite]

I'm so sorry, soulbarn. I'm glad to hear that he had a peaceful death, surrounded by people who loved him. I read his obit, and it sounds like he was a great guy.
posted by julthumbscrew at 5:30 PM on August 17, 2012 [1 favorite]

I just realized, looking at the obituary, that I've read the book you wrote about your dad. It's a wonderful gift you've given to the world to write it. Thank you for sharing his story.
posted by ocherdraco at 6:39 PM on August 17, 2012 [1 favorite]

Soulbarn I'm sorry for your loss. I also read your father's obit - sounds like he led a wonderful, very full life. I'm glad his end was peaceful and that you were there. Will look for your book - I'd like to learn more about your dad. Take care of yourself!
posted by leslies at 6:02 AM on August 18, 2012

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