I have breast cancer and suggest you join the facebook metastatic breast cancer groups. I am not a social media person, but these groups help you learn the lingo quickly. One day scrolling through and you will understand what info you need from the reports, etc. I learn about trials from the facebook group. And a few words of advice - please don't make this about you. The genetic testing helps her doctors determine the best treatment for her, Yes, it will be helpful to you and your kids, but right now she has breast cancer, you don't. Again, don't make it about you and your children. Help her with what she wants help with - if that's understanding the medical part, jump in. Hospitals now allow one visitor (although they always allowed one companion if you needed it). Drive her to appointments, drop her off, park the car, and go in with your notebook. Write down everything that is said, ask who your sister follows up with if she has questions after the appointment. Johns Hopkins has triage nurses for oncology that are the best, I find them a lifeline. Get to every appointment fifteen minutes early.

Here's what I got that was helpful - soft blankets, lotions (I have a lot of chemo), meals.

Here's what not helpful - breast cancer books, another journal, people telling me I look fine/good.

When she cries, listen. When's she mad, listen and hug her. Don't judge what she eats or drinks. She needs to comfort herself, let her tell you how crappy she feels. Just be a presence and take walks.

Good luck. It's hard to be part of a caregiving team, so don't underestimate how much work this will be.

Anonymous wrote:

Anonymous wrote:I'm sorry for this news. I can only share that my cousin lived 13 years between the diagnosis of stage 4, with Mets, at 38 and when she ultimately passed at 51. She was able to raise her kids into younger adults during that time, with the knowledge that every day was precious . I've also been working with with a personal trainer who was dxed stage 4 three years ago..she approaches it as a chronic illness, not a death sentence, and has been able to keep spread at bay...
I hope your sister does well and she's lucky to have you in her corner .

I needed this, this morning. It's only 6am here, and I didn't get a wink of sleep - tossed and turned and cried all night. Seeing this post, even if your friend is an "outlier", gives me hope for my sister. thank you

NP. A family friend was diagnosed at stage 4, fourteen years ago. She’s also treated it as a chronic illness and has been able to have a full life, work FT, etc.

Anonymous wrote:Depending on the type, immunotherapy can be quite promising. I am really sorry for your news.

This. My friend had a recurrence of BC (she was supposedly being "watched closely" after her early stage BC was handled via chemo; the doc dismissed her pain and fatigue complaints as being "just tired b/c you have young children." So this was a missed diagnosis.)

Anyway, she has Stage 4 Metastatic BC (in her spine and other places). But with all the new treatments, immunotherapy, etc., she has been living with it (actively living and enjoying life) for the last 6-7 years. She's in her late 40's/early 50s.

There is reason to be hopeful.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP, you may want to get genetic testing, in case what your sister has is genetic. I wish her and you the best.

I was just discussing this with my brother earlier today. I've decided to do it, just need to figure out how. Not sure if my sister also needs to do genetic testing in order to find out IF there's a gene, and if so what gene mutation that is. I have a daughter, and my brother has two daughters - so this is very important.

thank you

Pp with mbc here again. Your sister will be getting genetic testing, it is standard now. Depending on which company she uses, you might get free testing if she tests positive for something. It is not a big deal. A simple blood test. Try and wait a few weeks for your sister to get her results so that you can bring those results to your doctor.

Good to know! excellent advice, thank you.

Anonymous wrote:I'm sorry for this news. I can only share that my cousin lived 13 years between the diagnosis of stage 4, with Mets, at 38 and when she ultimately passed at 51. She was able to raise her kids into younger adults during that time, with the knowledge that every day was precious . I've also been working with with a personal trainer who was dxed stage 4 three years ago..she approaches it as a chronic illness, not a death sentence, and has been able to keep spread at bay...
I hope your sister does well and she's lucky to have you in her corner .

I needed this, this morning. It's only 6am here, and I didn't get a wink of sleep - tossed and turned and cried all night. Seeing this post, even if your friend is an "outlier", gives me hope for my sister. thank you

I'm sorry for this news. I can only share that my cousin lived 13 years between the diagnosis of stage 4, with Mets, at 38 and when she ultimately passed at 51. She was able to raise her kids into younger adults during that time, with the knowledge that every day was precious . I've also been working with with a personal trainer who was dxed stage 4 three years ago..she approaches it as a chronic illness, not a death sentence, and has been able to keep spread at bay...
I hope your sister does well and she's lucky to have you in her corner .

OP hugs. I am very sorry.

Anonymous wrote:

Anonymous wrote:OP, you may want to get genetic testing, in case what your sister has is genetic. I wish her and you the best.

I was just discussing this with my brother earlier today. I've decided to do it, just need to figure out how. Not sure if my sister also needs to do genetic testing in order to find out IF there's a gene, and if so what gene mutation that is. I have a daughter, and my brother has two daughters - so this is very important.

thank you

Pp with mbc here again. Your sister will be getting genetic testing, it is standard now. Depending on which company she uses, you might get free testing if she tests positive for something. It is not a big deal. A simple blood test. Try and wait a few weeks for your sister to get her results so that you can bring those results to your doctor.

Anonymous wrote:The other major centers, given DC location, you may wish to get a second opinion from:
MD Anderson, Dana Farber (as mentioned)
Memorial Sloan-Kettering
and maybe Hopkins, Penn.

Thank you, yes my brother sent her records to MD Anderson (Houston) this morning. He's just waiting to hear back with some sort of response, or confirmation of receipt.

Anonymous wrote:OP, you may want to get genetic testing, in case what your sister has is genetic. I wish her and you the best.

I was just discussing this with my brother earlier today. I've decided to do it, just need to figure out how. Not sure if my sister also needs to do genetic testing in order to find out IF there's a gene, and if so what gene mutation that is. I have a daughter, and my brother has two daughters - so this is very important.

thank you

Anonymous wrote:Prayed for your sister and your family Op. Hugs.

Thank you. This means so much to me, and I truly appreciate it.

OP, you may want to get genetic testing, in case what your sister has is genetic. I wish her and you the best.

Prayed for your sister and your family Op. Hugs.

I would start looking into where clinical trials for immunotherapy might be happening. There was that promising remission mentioned about a year or two ago where a woman for whom all else had failed was put into (at that time) 2 years of totally cancer free remission. Its not easy to get into these clinical trials, but generally its for people who did not respond to other treatments and have a late stage cancer. Which stinks because why not try something promising like that on people in earlier stages as well? Its very frustrating. Im a cancer survivor and hope to make it long enough to be able to receive those treatments as a more standard course. I am very sorry for this devastation for your family, but it does become part of you in a way I cant explain.

I also lost my mother to breast cancer. And I have had an excellent diet too! Don't give up. Follow your sisters lead, but keep eyes open on the side for options like the clinical trials.

The other major centers, given DC location, you may wish to get a second opinion from:
MD Anderson, Dana Farber (as mentioned)
Memorial Sloan-Kettering
and maybe Hopkins, Penn.