Pls help - need questions for the oncologist

daughter_in_law

My Mother-in-law has been dx with Stage 4 non-small cell lung cancer. Specifically, poorly differentiated adenocarcinoma.

It is in both lungs (plum size mass collapsing the lower lobe of one lung and several small tumors in the other). Fluid has been drained multiple times, and her lung capacity is up to 500, from 250 pre-surgery (they did the talc thing).

The cancer is also in the chest wall, in the sternum (in the bone), and in the adrenal gland.

She does not feel well at all. She just finished 10 radiation treatments on the large tumor, with the focus on increasing her lung capacity.

Wednesday is the first appt with the oncologist following the pathology results.

My husband and I are driving 4 hours to be there. She is having a hard time processing what is going on.

If she said "I know the odds, and I am going to fight and beat them." I would accept that. It's her cancer, her body, and her decision.

But instead, she is blocking out information, forgets the cancer is in both lungs, not one, makes only weak attempts at healthy eating. She has, in the past, avoided doctors, and only went to a doc-in-the-box if she was sick - she has not been doing mammograms, didn't have a family doctor, etc.

She is 64 - not elderly.

So she is neither arming herself to fight the disease nor accepting that she is most likely dying in the next 8 months (or less. or more. who knows.) She does not want to hear what the doctor says (has told us this) and wants her son and daughter to take care of *everything* for her. In addition to medical/care issues, my husband and sister-in-law have to find insurance for her, since her COBRA expires in February. (We have some leads now, it's just a matter of pushing through the paperwork).

We are frustrated in addition to being sad. It is hard to feel like she is not a committed partner in this. Whatever her goals are (fighting, quality of life, whatever), we would make our goals, but she is sticking her head in the sand instead.

Anyway, we plan to ask the oncologist about her general state of health, how many chemo treatments she could likely handle vs the benefits, what is her likely trajectory based on the pathology (not to put limits on her, but if she wants to take a cruise, need to know if it needs to happen soon), those sorts of things.

Are there any other questions you can think of? We (husband and I) live four hours away and have very small children and her daughter lives across the country. We are doing the best we can, but it isn't easy.

MarykayUSMC

I also have stageVI nsc lung
I also have stageVI nsc lung cancer that has moved to my liver. 49yrs old. I just found out in May of this year and was told 6month - 1year - 2% get over 1year. I try to do what ever I can to fight this - eating better, not drinking, but still can't quit smoking. At first I didn't want to do anything, just chemo and see what would happen. Then I went through a short phase of giving up. Another phase of "I can beat this" I'll be the one in a million that does. Your mother-in-law my have a different opion on treatment each time you talk to her. It's such an up and down ride.

I know too that I don't like doing the reserch- the more I read the more depressed I get. My husband and friends have to do that for me and have to be at my appointments - when the doctor talks to me sometimes I don't really hear him, just not catching it, all sounds like a bunch of babble to me. That's how my mind hears it. Make sure someone is with her to ask the questions- always make a list to ask- and do reserch for her, she too may not want to do that on her own.

Also remember- everyone is different on how they act - how different treatments effect them -and what is best for them.

cobra1122

MarykayUSMC said:

I also have stageVI nsc lung
I also have stageVI nsc lung cancer that has moved to my liver. 49yrs old. I just found out in May of this year and was told 6month - 1year - 2% get over 1year. I try to do what ever I can to fight this - eating better, not drinking, but still can't quit smoking. At first I didn't want to do anything, just chemo and see what would happen. Then I went through a short phase of giving up. Another phase of "I can beat this" I'll be the one in a million that does. Your mother-in-law my have a different opion on treatment each time you talk to her. It's such an up and down ride.

I know too that I don't like doing the reserch- the more I read the more depressed I get. My husband and friends have to do that for me and have to be at my appointments - when the doctor talks to me sometimes I don't really hear him, just not catching it, all sounds like a bunch of babble to me. That's how my mind hears it. Make sure someone is with her to ask the questions- always make a list to ask- and do reserch for her, she too may not want to do that on her own.

Also remember- everyone is different on how they act - how different treatments effect them -and what is best for them.

Right on MarykayUSMC
Semper Fi, and everything you said is right, I think most of the people who have cancer see their Docs mouths moving and just can't grasp what is being said most of the time. I know I had to have my wife and two friends there to take notes and ask questions, they took a long list of questions and had the Doc answer everyone. I just sat there half the time in a zone and couldn't really follow what was said..

So a Marykay has said make a list and don't worry about how long it is, get the answers, then if there is any question what was said you havve the answers..no one is the same as Marykay said, but we do sometimes react the somewhat the same. All treatments, side effects and outcomes are different for each person.....

Good luck and God Bless

cabbott

So Frustrating!
Cancer is such a nasty disease. It invades our bodies without any by-your-leave and stops us from enjoying life and participating like we used so much of the time. The doctors literally speak a different language that some of us may understand, but many more do not. They tell me that med students have to learn 10,000 words a year each year they are in med school--and their learning doesn't stop until their practice ceases decades later. That means that the average person isn't likely to understand all they say and that's on a good day. When you just got the news you have cancer and the doctor's face doesn't look hopeful, you take an emotional dive that makes understanding anything (and I mean even the simplest stuff) next to impossible.

I'm not sure of the legal name for it, but if your mother-in-law can get it so you can freely exchange information with the doctors directly, you will be able to call from your home for updates and help with the decision making (They may insist on it being a blood relative rathaer than a link by marriage. Check.). The oncologist may be at a hospital with a medical social worker that could help with finding agencies that can assist your mother-in-law with all the stuff that she will need. Even making a simple meal can be overwhelming when you are recovering from treatment effects. The fatigue is that bad and that's not including the effects of lungs not working. And if you don't eat and drink, you can land in the hospital and/or not be well enough to continue treatment. Obviously it's vicious circle that isn't easy to get out of and prevention is better than intervention if possible. Different communities have different helping agencies, but a good medical social worker can help to set up a plan that can assist her no matter what treatment is decided on.

One thing I have learned from having cancer is not to postpone good times. We have today, that's why they call it the "present". So if you want to have a vacation with her, do it now. Don't wait. Also, don't forgo treatment, just plan around it. My dad had prostrate cancer and was able to have his operation in one state in the fall but still go south for the winter and get the radiation there. He even managed to make his treatments in the afternoon so he could get the golf in while the weather was still cool. He tells me he didn't miss a game all 10 weeks of treatment though he did break down and use a cart the last two weeks and take an extra nap now and then! Teachers I know planned chemo so that it would be on Fridays. By Monday, they were well enough to get back to teaching. Everyone reacts differently, so some folks may need a week to recover well enough to make a cruise or short vacation, but it could still be done if they are well enough.

Don't leave estate planning on hold either. Make whatever plans you can to beat the cancer, but make sure all estate plans are in order just in case. None of us know how long we have left and it is best to remember that Boy Scout motto and "Be Prepared!". That will reduce everyone's stress in the long run. Again, the medical social worker may be able to help you find out what needs to be done in this area so that things are in order legally and that your mom's wishes are carried out throughout her treatment. Living wills are needed to make sure medical treatments are carried out according to your relative's wishes. Regular wills will help keep the government from getting more than their due. Not talking about it won't keep anything from happening any more than getting the estate in order will make the cancer worse. Pre-planning will just reduce the stress later down the line and guide you through all the decisions that may be needed in the future.

Good luck at the oncologist's office!

C. Abbott

daughter_in_law

Thank you
Thank you everyone for sharing your experiences!

Her cousin has spent the last week with her, and spoke with my husband last night. She (the cousin) says she's concerned that my MIL is not absorbing the diagnosis and does not seem to understand the gravity of the situation. The cousin thinks it's "best this way" and that we should just make all the decisions for her. My husband and I are not comfortable with this.

We'll see what the doctor has to say tomorrow, and take it from there.

I wish all of you health and best wishes on your journeys!