Stage IV Metastatic Breast Cancer Diagnosis

[Anonymous]

I am sorry for what you’re going through.

I would not fret too much about the missed mammograms. One of the controversies about mammograms is that they often DON’T show the most aggressive breast cancers (MBC).

[Anonymous]

OP where does your sister live and where is she getting treatment? This can make a huge difference in outcomes. I coordinate clinical trials for stage IV MBC & I can tell you it is NOT a death sentence. A lot depends on the specifics of her cancer and how she responds to treatment but it’s by no means a hopeless situation. I highly, highly recommend that your sister go to a research institute offering clinical trials, rather than a community hospital or cancer center if that’s at all practicable. She can also get a second opinion from Dana Farber or MD Anderson and continue with her local oncologist if she is comfortable with their treatment plan. If she’s interested in clinical trials you can search for open and enrolling trials on clinicaltrials.gov. If you need any help with that process I’ll be following this thread and I’m happy to help. Good luck and prayers.

[Anonymous]

Anonymous wrote:I am sorry for what you’re going through.

I would not fret too much about the missed mammograms. One of the controversies about mammograms is that they often DON’T show the most aggressive breast cancers (MBC).

I have another data point to share, my aunt had had a "clean" mammogram six months before her breast cancer was discovered. She found a lump herself.

[Anonymous]

I'm so sorry. Spend as much time as you can with her--no matter the outcome you and she won't regret that. If she's working, I'd encourage her to scale back as much as possible and use as much leave, long-term disability, Social Security disability, etc. as possible so she can care for her health and do other things that are important to her.

[Anonymous]

I have heard it said that the first days after diagnosis are some of the hardest, worst days, understandably, but that once she and her team decide on a plan and she begins to actively manage it, things may begin to feel more manageable and maybe even hopeful too, particularly if she responds well. Wishing you and your family the best outcome going forward.

[Anonymous]

Anonymous wrote:OP where does your sister live and where is she getting treatment? This can make a huge difference in outcomes. I coordinate clinical trials for stage IV MBC & I can tell you it is NOT a death sentence. A lot depends on the specifics of her cancer and how she responds to treatment but it’s by no means a hopeless situation. I highly, highly recommend that your sister go to a research institute offering clinical trials, rather than a community hospital or cancer center if that’s at all practicable. She can also get a second opinion from Dana Farber or MD Anderson and continue with her local oncologist if she is comfortable with their treatment plan. If she’s interested in clinical trials you can search for open and enrolling trials on clinicaltrials.gov. If you need any help with that process I’ll be following this thread and I’m happy to help. Good luck and prayers.

Except it is. But you can buy time.
Two of my relatives were told they had 6 months to a year, tops. Each of them lasted longer. One lasted 18 months, the other 2.5 years. It is how you spent that time which matters.

[Anonymous]

Anonymous wrote:OP where does your sister live and where is she getting treatment? This can make a huge difference in outcomes. I coordinate clinical trials for stage IV MBC & I can tell you it is NOT a death sentence. A lot depends on the specifics of her cancer and how she responds to treatment but it’s by no means a hopeless situation. I highly, highly recommend that your sister go to a research institute offering clinical trials, rather than a community hospital or cancer center if that’s at all practicable. She can also get a second opinion from Dana Farber or MD Anderson and continue with her local oncologist if she is comfortable with their treatment plan. If she’s interested in clinical trials you can search for open and enrolling trials on clinicaltrials.gov. If you need any help with that process I’ll be following this thread and I’m happy to help. Good luck and prayers.

The average life expectancy after diagnosis is 3 years. You will read about outliers who went on 15, 17 years, but that is rare.

Treatment can prolong life, but it unfortunately won't cure MBC. Be prepared for her treatments to stop working and then switching to another. Side effects vary with each treatment (e.g., hand-foot syndrome if on Xeloda). Clinical trials are good to participate in but be prepared for them to have rather specific qualifications and may be hard to get into. And she can be out of the trial after it's started, if something comes up in her health that precludes her from continuing.

I'm sorry, OP. This sucks. As others have said, let your sister take the lead.

[Anonymous]

Anonymous wrote:OP where does your sister live and where is she getting treatment? This can make a huge difference in outcomes. I coordinate clinical trials for stage IV MBC & I can tell you it is NOT a death sentence. A lot depends on the specifics of her cancer and how she responds to treatment but it’s by no means a hopeless situation. I highly, highly recommend that your sister go to a research institute offering clinical trials, rather than a community hospital or cancer center if that’s at all practicable. She can also get a second opinion from Dana Farber or MD Anderson and continue with her local oncologist if she is comfortable with their treatment plan. If she’s interested in clinical trials you can search for open and enrolling trials on clinicaltrials.gov. If you need any help with that process I’ll be following this thread and I’m happy to help. Good luck and prayers.

Thank you PP. This is very helpful. She is local to the DC area, and is currently with Kaiser. We're all actually quite pleasantly surprised at the level of care she's receiving with Kaiser. We all had this assumption, or maybe misconception that Kaiser's level of care wasn't great.

She is getting a second opinion already scheduled with a non-Kaiser breast cancer specialist there is Bethesda, and my brother actually sent her records to MD Anderson for that additional 2nd opinion. I appreciate you following this thread, and will keep updating as I learn more. I do believe that her treatments start this week.

[Anonymous]

Anonymous wrote:I'm so sorry. Spend as much time as you can with her--no matter the outcome you and she won't regret that. If she's working, I'd encourage her to scale back as much as possible and use as much leave, long-term disability, Social Security disability, etc. as possible so she can care for her health and do other things that are important to her.

I'll be flying home (to DC) in a few weeks, with a one-way ticket. I need to be there for her, and for my mom and brother too. We lost our dad 1.5 years ago, and this is hitting my mom incredibly hard as you can only imagine.

She has been with the same employer for 20 years, they're like family to her. They're being very supportive of all she is going through, thank God.

[Anonymous]

Anonymous wrote:

Anonymous wrote:OP where does your sister live and where is she getting treatment? This can make a huge difference in outcomes. I coordinate clinical trials for stage IV MBC & I can tell you it is NOT a death sentence. A lot depends on the specifics of her cancer and how she responds to treatment but it’s by no means a hopeless situation. I highly, highly recommend that your sister go to a research institute offering clinical trials, rather than a community hospital or cancer center if that’s at all practicable. She can also get a second opinion from Dana Farber or MD Anderson and continue with her local oncologist if she is comfortable with their treatment plan. If she’s interested in clinical trials you can search for open and enrolling trials on clinicaltrials.gov. If you need any help with that process I’ll be following this thread and I’m happy to help. Good luck and prayers.

The average life expectancy after diagnosis is 3 years. You will read about outliers who went on 15, 17 years, but that is rare.

Treatment can prolong life, but it unfortunately won't cure MBC. Be prepared for her treatments to stop working and then switching to another. Side effects vary with each treatment (e.g., hand-foot syndrome if on Xeloda). Clinical trials are good to participate in but be prepared for them to have rather specific qualifications and may be hard to get into. And she can be out of the trial after it's started, if something comes up in her health that precludes her from continuing.

I'm sorry, OP. This sucks. As others have said, let your sister take the lead.

A lot of cancer research is advancing rapidly right now. Even being able to last another 3 years may change your odds because of so many promising drugs on the cusp. I follow some research for a childhood cancer predisposition syndrome and just in 2020 a treatment with 70% effectiveness was approved where none had existed.

[Anonymous]

This may also be of interest: https://metastatictrialtalk.org/inside-clinical-trials/breast-cancer-treatment-vaccines/

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP where does your sister live and where is she getting treatment? This can make a huge difference in outcomes. I coordinate clinical trials for stage IV MBC & I can tell you it is NOT a death sentence. A lot depends on the specifics of her cancer and how she responds to treatment but it’s by no means a hopeless situation. I highly, highly recommend that your sister go to a research institute offering clinical trials, rather than a community hospital or cancer center if that’s at all practicable. She can also get a second opinion from Dana Farber or MD Anderson and continue with her local oncologist if she is comfortable with their treatment plan. If she’s interested in clinical trials you can search for open and enrolling trials on clinicaltrials.gov. If you need any help with that process I’ll be following this thread and I’m happy to help. Good luck and prayers.

The average life expectancy after diagnosis is 3 years. You will read about outliers who went on 15, 17 years, but that is rare.

Treatment can prolong life, but it unfortunately won't cure MBC. Be prepared for her treatments to stop working and then switching to another. Side effects vary with each treatment (e.g., hand-foot syndrome if on Xeloda). Clinical trials are good to participate in but be prepared for them to have rather specific qualifications and may be hard to get into. And she can be out of the trial after it's started, if something comes up in her health that precludes her from continuing.

I'm sorry, OP. This sucks. As others have said, let your sister take the lead.

A lot of cancer research is advancing rapidly right now. Even being able to last another 3 years may change your odds because of so many promising drugs on the cusp. I follow some research for a childhood cancer predisposition syndrome and just in 2020 a treatment with 70% effectiveness was approved where none had existed.

thank you for the encouraging words. I need to stay positive for my sister's sake, if nothing else. I'm trying to be realistic, but also hopeful that she will be one of those who is able to surpass the average life expectancy

[Anonymous]

Anonymous wrote:

Anonymous wrote:I am sorry for what you’re going through.

I would not fret too much about the missed mammograms. One of the controversies about mammograms is that they often DON’T show the most aggressive breast cancers (MBC).

I have another data point to share, my aunt had had a "clean" mammogram six months before her breast cancer was discovered. She found a lump herself.

Second data point (NP here). I had seven years of mammograms, all of which were clean. My BC was found during another exam after I had swelling under my arm. Not all BC presents as a lump. Ten percent of all BCs are invasive lobular carcinoma (LC) and are not "lumpy", they are spread like a spiderweb and one of the hardest kinds of BC to detect. What mammograms typically don't show are the lobular BCs, and it's not because they're aggressive or non-aggressive but rather how the cells aggregate (thus harder to find).

We've spent some much money on pink ribbons, socks, and awareness campaigns and telling people to look for lumps. I always wonder how many people walk around with ILC for years and go undetected. My doctor told me mine was probably there for 6-8 years.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I am sorry for what you’re going through.

I would not fret too much about the missed mammograms. One of the controversies about mammograms is that they often DON’T show the most aggressive breast cancers (MBC).

I have another data point to share, my aunt had had a "clean" mammogram six months before her breast cancer was discovered. She found a lump herself.

Second data point (NP here). I had seven years of mammograms, all of which were clean. My BC was found during another exam after I had swelling under my arm. Not all BC presents as a lump. Ten percent of all BCs are invasive lobular carcinoma (LC) and are not "lumpy", they are spread like a spiderweb and one of the hardest kinds of BC to detect. What mammograms typically don't show are the lobular BCs, and it's not because they're aggressive or non-aggressive but rather how the cells aggregate (thus harder to find).

We've spent some much money on pink ribbons, socks, and awareness campaigns and telling people to look for lumps. I always wonder how many people walk around with ILC for years and go undetected. My doctor told me mine was probably there for 6-8 years.

PP here and missed the opportunity to say to the OP that I wish nothing but strength and comfort to your sister and family right now. The other PPs above are right...there is so much happening in BC research right now that what BC looks like today is probably a world away from what it will look like in 2-3 years even. Don't give up hope.

[Anonymous]

Your sister is lucky to have you OP. Hoping that her treatments are successful!