Breast cancer metastases to brain. Anyone have experience with this?

Thanks for responding handychik. I am sorry you are experiencing what I am although it's nice to know someone understands. Moms wbr was 3 weeks too. That was two years ago. Her memory is terrible. Writing is bad but has improved somewhat. It's mostly thought processing and memory. She has zero movement in her legs and I don't know if that is from the tumor or WBR. Her oncologist said both could do it. My mom doesn't want any more treatment either and I agree with her. This is no life for her. No quality whatsoever. She is still cancer free. She gets a brain MRI every 6 months. So all her effects I have decided are from te WBR so I have quit running her in for every change that occurs. It's amazing that 2 years have past and WBR symptoms are still appearing.

Kannie, I'm caring for my Mom in a similar situation. Mom was diagnosed with lung cancer last summer and as of May this year, it's metastasized to her bones/spine and her brain. She underwent 3 weeks of WBR and it kicked her butt, big time. She was alway sharp and a savvy businesswoman. Now her memory is crap and she has a lot of trouble simply writing and typing too. She has decided no more treatments - which I totally get and accept. her WBR was from 6/1 thru 6/15/15. Now it's hard to know if it's still the WBR causing trouble or the cancer on the move. Since there are going to be no more scans, we just have to manage day by day... and we are. I know this doesn't answer your question, but maybe helps to know you're not the only one dealing with this right now. We are just going on faith at this point.

Sending you lots of hugs and support.

Oh, and she isn't on the deed now. Not that that helps us for 5 years. Long story short by dad died in 1991. Mom sold the house and moved into an apartment of some friends. 6 years later my husband and I bought land and we and my mom built houses. Her house is "connected" to ours through the well and septic. The county considers it a granny house and we only had the one mortgage. My mom wanted her name on the deed and at the time we understood her desire. Later she realized it may not be a good idea upon her death. Ironically we were in the process of removing her name when she was diagnosed with the brain tumor. Her name is off but there is the five year look back. It's only been off two years. She can't fund at home caregivers nor can we. We can rent her house and help cover the cost of a nursing home but I pray it doesn't come to that. She would rather die in her own home. I just hope hospice is approved when she gets worse and she will be taken care of at home with us right there as well.

Thank you Veronica. That is very helpful to hear. I feel guilty a lot of the time trying to split myself between mom and my family. Surprisingly her bones are clear. Her brain tumor will be two years ago this September. Seems like forever. She has a brain MRI every 6 months so her next will be August. The dr actually had said to expect a return or death in 11-17 months and we are going on two years. I will contact hospice in the fall. She is in rehab right now. Due home July 12th. She had to have her shoulder replaced due to radiation therapy killing the bone.

I went back and could not see where you said you had put Mom on your deed. Did I miss something? Hospice requires a primary caregiver but not one who has to be home all the time. Metastases from breast cancer usually show up in bone before brain but if they say she is cancer free run with that. she is 79 years old and has been ill with a debilitating disease for a good many years which has probably taken it's i can sympathize with her not wanting to be in a house with young children but the time will come one way or another where she does need full time care. you can not and should not do it so her choices are going to be very limited unless she has sufficient funds to hire full time caregivers.. Now would be a good time to have hospice come in and evaluate her. Neither side commits to anything at this point but you will better understand the options and if Mom feels it is right for her and hospice agrees she can have their help. Not to be a downer but once you have had cancer of the brain it does increase the likelyhood of seizures. can't really make any good guesses without being involved in Mom's care but many Drs do seem to be over optomistic. You are doing an excellent job balancing Mom's needs and those of your own family which must always come first.

I just saw a reference to a program that may be of help, the Ohio Nursing Home Diversion Medicaid Waiver https://www.aging.ohio.gov/news/pressreleases/2011/20110815.htm Only has a one year look back in NY - might be an avenue for you to pursue full time in home health care.

Sorry that my answer was not helpful to you. I hope you get the help you are seeking. Keep writing. Thanks for your feedback, Kannie.

Maggie, I am in full support of my mom's wishes.

Send me help, it is not cancer. She has transverse myelitis and the tumor made it worse. She gets an MRI every 6 months. She has been immobile for 13 years.

Yes, I had experience with that. Your Mom is cancer free.
Look for alternative nutritional treatments to fortify her, in hopes it doesn't come back. Like, carrot juicing? Gives you something to do. Can't hurt.
Kind of like when the doctor writes a prescription and at least he feels better.
Hoping that both you and your Mom can feel better soon. Keep reminding yourself and her: she is cancer free. She is not dying of cancer, she is living with cancer, and is now cancer free.

Lost all mobility in lower extremities could be something else, see a neurologist. No reason to not have an MRI. It could show a significant metastasis to elsewhere in her body. If it were my mom, I would let her have her dignity, but look for daily living comforts and improvements, say, for example, physical therapy coming to the home. Please don't give up yet. I am just guessing here, but wouldn't brain surgery be like having a stroke, and you could recover some function over time with the right help? What does mom want? After she has rested up, she may want to fight again.

Honor your mom's wished. If she's done, BE done. Be there for her. Hold her hand on her journey. Be accepting and loving. You will never be sorry.

Exactly, it's time to call hospice to find out what your options are. We have a great social worker who was very helpful even before we decided to go ahead with the paperwork. I was not sure either, but hospice evaluated her records and gave a real answer- not one that anyone can give you but a local hospice.

I completely support your boundaries with your children and grandma. I believe you are making the right decision there! But you are going to have to find a way to put her in a nursing home where she can get 24/7 care for her own good.

As far as Medicaid goes, it is government welfare, not an entitlement. You and your husband put her on your deed for one reason or another, and mistake or not, unless you can come up with paperwork proving that she is not 1/3 owner, you are gong to be responsible for AT LEAST the 1/3 value payback before she gets welfare (the former atty I spoke to said that as a Medicaid auditor, he would attach the entire property, but he admitted he had been very aggressive).

I would go ahead and get that payback ball rolling, get a home equity line for the amount of liability, and pay it back to her. Then move her out, and get the paperwork rolling for Medicaid. I imagine Hospice will be able to direct you to someone who has done this before, for a fee. That is the reality of this deed titling mistake.

For the rest of you, this is why you must have a good attorney to talk to about seemingly good ideas which may have unintended consequences down the road.

Surprise, she does not need any more treatments now. She is cancer free as far as tests show. She has told her oncologist that when it returns she will deny all treatment. That's why I am unsure hospice can help us. It sounds like with hospice you have to have someone there 24/7 and I can't do that. I would if I could but I have two 5 year olds, a 10 yr old and a 16 yr old. Then one in college but he isn't home but part of the year. I thought of moving her in with me but my house isn't set up for a w/c and the downstairs bathroom is tiny. She wouldn't even fit. No bedroom on the first floor. And honestly I find my sanity in my home. I need that space. And she gets irritated with all the commotion two 5 yr old boys can make. It just wouldn't work. She hates the NH and I don't really want her there. I much prefer home health and like you mentioned a Christian one would be what we would like as well.

If your mother does not want any more treatments, it's time to call Hospice. We chose a non-profit hospice over a profit hospice for a variety of reasons, but the biggest one was faith. Our non-profit one has Christian founders though they serve all. Hospice can make a determination using the records and their own doctor.

I had breast cancer alittle over four months ago. It was Paget's Breast Cancer. I do take the estrogen pill. I didn't have radiation nor chemotherapy, but worry that it could come back in other places in the body.I have been told the estrogen pills really help. marymember (I am 79 years old)

Radiation is the gift that keeps on giving. It continues to aggravate and annoy long after treatments. My daughter had brain surgery followed by radiation and two years of Temodar treatments. It was Hell, but it beat back the cancer for six years. Then another brain surgery and treatments with Avastin bought another four years. Keep the faith.

It's so hard to differentiate what may have been caused by the surgery or its residual effects, the radiation and its residual effects and the underlying cancer that may have spread to many other places. Once CA goes metastatic, it can show up just about anywhere at almost any time. I'm not sure determining the cause of her confusion or weakness makes much difference, since your mom has already decided she does not want to undergo further invasive treatments. But you should check to make sure she doesn't have a UTI or other infection, which can sometimes present the symptoms you are describing.