Understanding the mBC Patient and Caregiver Jourey

[Clinical trials] give women a chance to help other women and yes, you're taking a chance but the care you receive in a trial is excellent.

End-of-life and financial support are not talked about enough. After so much financial investment in a loved one with mBC, you realize how much debt has been accumulated over time.

I feel like I cannot catch a break. I am battling with my bone metastasis, my lymphedema, my diabetes, and my idiopathic hypertension. I am at doctor appointments three days out of the week (sometimes even Saturdays and Sundays when I get scans)...

I create a relationship of respect. I felt judged by a provider for questioning a test, so I left them. I suggest schedule changes and choose when I need a treatment break. I make it clear I need to understand what’s going on, and that my life is important.

Receiving mBC treatment takes a lot out of me mentally and physically. Being responsible for my medication and scheduled infusions is important. To manage my medications and my treatment, I make sure I have an appointment calendar reminder that allows me to see how my month will be.

People don’t understand what mBC is, and they think it means automatic death. Right from the beginning, I thought I was going to die.  I have had many challenges throughout this journey. Arthritis and treatment side effects take away from how I can manage motherhood. My children keep me grounded.

I was having really bad side effects from my meds. I learned from my support groups that I could ask to lower the dosage or change the schedule, so I did. She tells me, ‘I am the breast specialist here and I know how this medicine should be taken!’ It made me feel small, and I did not push the subject again.

I want support groups to be a place to uplift each other, but also vent. We are dealing with a life-threatening disease that isn’t always positive or pretty. There are groups that have resource pages, while others have discussion boards. A good combination of everything would be ideal and very helpful to our MBC community.

The one thing that bothers me is the lack of affordable dental coverage, and I wish someone had told me about the importance of consistent dental check-ups before all of the decay. Fixing my smile would make me whole again. I really don’t feel as confident. It’s a constant reminder of my disease and the long-term journey I have.

mBC caused my DVT, lymphedema, and high blood pressure. I take my blood pressure fairly regularly...I can be forgetful, but handle my medications well by tracking my off and on weeks with the chemo pill. The rest of my medications I take at the same time. I have them all re-filled on the same day of the month, which helps track them.

For the past two and a half years, I have become an advocate and caregiver for my mom, initially helping with her diagnosis and maneuvering the medical system. As time went on, I attend doctors' appointments, make sure she has her medication, and make treatment choices. The process of caretaking has been exhausting,  tiresome, and long.

I have amazing oncologists. But they did not let me know that I was at very high risk for lymphedema. My doctor told me to watch out for swelling, but I didn’t even know what type of swelling. I got severe lymphedema. How did they not let me know about something so serious? We need more help with understanding what disease this medication can give me in the long run and how I can prevent it.

[Clinical trials] give women a chance to help other women and yes, you're taking a chance but the care you receive in a trial is excellent.

End-of-life and financial support are not talked about enough. After so much financial investment in a loved one with mBC, you realize how much debt has been accumulated over time.

I feel like I cannot catch a break. I am battling with my bone metastasis, my lymphedema, my diabetes, and my idiopathic hypertension. I am at doctor appointments three days out of the week (sometimes even Saturdays and Sundays when I get scans)...

I create a relationship of respect. I felt judged by a provider for questioning a test, so I left them. I suggest schedule changes and choose when I need a treatment break. I make it clear I need to understand what’s going on, and that my life is important.

Receiving mBC treatment takes a lot out of me mentally and physically. Being responsible for my medication and scheduled infusions is important. To manage my medications and my treatment, I make sure I have an appointment calendar reminder that allows me to see how my month will be.

People don’t understand what mBC is, and they think it means automatic death. Right from the beginning, I thought I was going to die.  I have had many challenges throughout this journey. Arthritis and treatment side effects take away from how I can manage motherhood. My children keep me grounded.

I was having really bad side effects from my meds. I learned from my support groups that I could ask to lower the dosage or change the schedule, so I did. She tells me, ‘I am the breast specialist here and I know how this medicine should be taken!’ It made me feel small, and I did not push the subject again.

I want support groups to be a place to uplift each other, but also vent. We are dealing with a life-threatening disease that isn’t always positive or pretty. There are groups that have resource pages, while others have discussion boards. A good combination of everything would be ideal and very helpful to our MBC community.

The one thing that bothers me is the lack of affordable dental coverage, and I wish someone had told me about the importance of consistent dental check-ups before all of the decay. Fixing my smile would make me whole again. I really don’t feel as confident. It’s a constant reminder of my disease and the long-term journey I have.

mBC caused my DVT, lymphedema, and high blood pressure. I take my blood pressure fairly regularly...I can be forgetful, but handle my medications well by tracking my off and on weeks with the chemo pill. The rest of my medications I take at the same time. I have them all re-filled on the same day of the month, which helps track them.

For the past two and a half years, I have become an advocate and caregiver for my mom, initially helping with her diagnosis and maneuvering the medical system. As time went on, I attend doctors' appointments, make sure she has her medication, and make treatment choices. The process of caretaking has been exhausting,  tiresome, and long.

I have amazing oncologists. But they did not let me know that I was at very high risk for lymphedema. My doctor told me to watch out for swelling, but I didn’t even know what type of swelling. I got severe lymphedema. How did they not let me know about something so serious? We need more help with understanding what disease this medication can give me in the long run and how I can prevent it.