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Not Sure What My Role Will Be


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Hi everyone,

My mom is 64 and was just diagnosed with Stage 4 cancer, which has metastasized to her brain. It's been a bit of a shock - my parents have been going through a lengthy, nasty divorce and I think my mom had been chalking up most of her symptoms to stress and anxiety from that (shortness of breath, diarrhea, fatigue, loss of appetite/weight loss). In the last three or four weeks, however, her health has declined rapidly (starting with pain in her chest and having a hard time breathing) and a visit to the ER led to a CAT scan of her brain which has confirmed multiple lesions there. She also has spots in her breast and lung(s). While we are waiting to learn "what kind" of cancer she has, everything I have read here points to lung cancer. She was a lifetime smoker, just quit within the last 6 month so that's... a cruel irony. Because of COVID, she can't even get in to see an oncologist until the 5th and I am worried about what that wait will mean given the rapid decline she's already seen. 

I knew it was bad when I went to visit her last Monday. I could see it in her. She is a shadow of her former self. It was really heartbreaking. She's done a lot to try to cover up just how bad things were. Trying to "protect us kids." And now that my dad has moved across the country post-divorce, it leaves my sister and I to figure out how to help my mom through this. My sister is in denial, and is approaching this with a "she can still beat this" mentality. I have an 18 month old at home (who goes to daycare), a full time job, and live 90 minutes away. My mom is in the process of selling the family house (again, divorce) and just signed a lease on an apartment two weeks ago... a second floor apartment. In the last week and a half she has lost the use of one of her legs and is having bouts of temporary blindness in one eye.

I don't know how to do this. It's hard to know what my role is here. Where my mom should go. How much I need to step in. How long she can/should live on her own. If we should try to cancel the lease on the apartment. If we should try to stall the sale of the house. When/how to approach hospice. If I should go to her doctor appointments. If I should ask to be made a health proxy. When I should ask my mom to detail out her last wishes. It's... it's a lot. I know that you all know this. 

I know the person who did her CAT scan said something like "They are doing amazing things these days. You might get another 1-2 years!" And I'd like to believe that, but I know deep in my gut that this is going to move fast. Any insight you all can provide would be most appreciated. 

I am not a naturally "warm and fuzzy" person. I am not good with death (I mean, who is?). But I have seen a lot of loss this year (including the death of my nephew) and I just want to try to do right by mom here at the end, even if none of this comes naturally to me. I'm only going to get to do this once, you know? I want to do my best to do it right.

Thanks for listening.

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Welcome to our forum.  I'm sorry to hear about your mother's situation and especially how she is experiencing it while embroiled in so many other "high stressor" happenings.  We offer a lot of different information that can help you to navigate this role (caretaker) that you are assuming.  There is a forum specifically for Caregivers and within it a posing on "Tips and Support For The Caregiver" that can be found here.  Let's see if this start to offer some of the information you need and then please return here with any other questions you may have. 

Lou

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Hi, Pasta,

First things first. Let's find out what kind of cancer she's dealing with. The fact that she has spots in her breast is making me think possibly breast cancer--that is known to metastasize to the lungs but the other way around is extremely rare--I've never run across anyone who had mets to the breast.

With almost any cancer these days, though, there is a lot of testing that will need to be done to figure out a course of treatment. With the brain mets, it's usually possible to treat those with surgery or radiation. Depending on what kind of cancer she has and what mutations, if any, there are in her tumors, there may be targeted therapies and/or immunotherapies in addition to chemo.

It's really tough to be patient while all the diagnostic stuff goes on, but really you have no way of knowing what the course of her illness and treatment will be till those are done. I'd suggest trying to get her hooked up with a Comprehensive Cancer Center--it might involve a bit of travel, but seems like it would be worth the trouble.

 

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If it is any comfort, none of us know how to do lung cancer. We all attend the school of hard knocks!

Obviously, the brain metastasis and neurologic systems are of deep concern. Depending however on the extent and distribution of brain mets, neurologic relief may be quick in the form of 3 or 4 precision radiation treatments. While most of the time a medical oncologist wants to wait for a definitive cancer diagnosis from a tissue biopsy, a radiation oncologist may offer immediate radiation treatment in the form of stereotactic body radiation therapy or image guided radiation therapy to zap the brain mets and relieve neurologic stress. So I'd ensure you try and schedule a consultation with a radiation oncologist in addition to your scheduled November 5th appointment. You may find an appointment with a radiation oncologist to be the faster medical track. Your question at this appointment: "can my mother benefit from precision radiation while awaiting a tissue biopsy and conventional medical oncology treatment?" Here is some information about the types of radiation used to treat lung cancer.

Three or four years ago, I would have agreed that a stage IV diagnosis implied a short lifespan. Now immunotherapy has radically changed that dynamic. When immunotherapy works, it works quickly and effectively. But a tissue biopsy is needed before a doctor can predict if immunotherapy is the right treatment for your mother. Here is information on immunotherapy in the treatment of lung cancer.

Despite your distance from your mother and work schedule, I would advise that someone attend these early medical and radiation oncology appointments. There is a new lung cancer vocabulary to master, and your mom may not be prone to ask questions (I wasn't, my wife did all the questioning). If no one can attend to be the second set of ears, I'd ask if the consultations can be recorded or if you can arrange a FaceTime or WatsApp consultation.

Here are my tips and tricks to surviving lung cancer and I've been practicing since 2004. I do hope your mom is seen soon and is quickly on the path to effective treatment.

Stay the course.

Tom

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Sorry your mom is going through so much. The advice above is excellent. I'd also add that your mom should have a health care proxy, living will and if possible power of attorney so someone can handle the house sale if she is incapable. The health care proxy and living will are a good way to determine your mom's wishes. I also suggest that your mom broadly authorize her doctors to communicate with you. 

To engage hospice you need a medical diagnosis that your mom has 6 months or less of life. You're not there yet. 

I know it's hard to endure the waiting and worrying. Hang in there. 

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Hello and welcome.  I'm sorry to hear what your mom and you are going through. You've received some excellent advice from others here and I don't have much to add. The house sale and projected move is happening at a bad time, since your mom probably won't be able to manage a second floor apartment at all if one of her legs isn't working, unless there's an elevator. But cancer is never at a convenient time, unfortunately, so we just have to cope the best we can.

It would be great if you could go to appointments with her, especially the first one, so that the doctor will know you. If they tell you that you can't due to Covid, be sure to tell them that your mother has neurological impairment and mobility impairment and that you are her health proxy. If a person is disabled and needs assistance a lot of places will let an assistant in.  If you can go to the first one, and you'd be able to attend others by phone, I'd address this with your mom and the doc at the first appointment.

I would try to get the health care proxy/health care power of attorney/ living will, or whatever it's called in your state, signed ASAP if your mom is in agreement. In Oregon, this form has places for the person to indicate what kind of life-saving measures they want, so it's a good opportunity to bring up  other end of life issues. e

Once your mom has seen the oncologist, you both be in a better position to make decisions.

Hang in there and keep in touch with us. There are a lot of caregivers on these forums. I'm on here because of having had lung cancer, but I also was a caregiver for my mom when she had a mastectomy, when she broke her hip, and later when she was at end of life, so  I can understand first hand some of what you're going through. Let us know what questions and concerns you may have and how we can support you.

Bridget O

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So very sorry ❤️

Please try to remain positive and know there are many of us with Stage IV who have done very well with treatment.

It's not easy, but hopefully as you learn more, she will find treatments that with well.

Please keep us updated.  We all care and truly understand.

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