41 with Metatastic Breast Cancer and everyone thinks that I got this...

[Jtbarneveld]

I have remained positive and continue to live each day but I feel so many don't understand the seriousness of this diagnosis. I have had people tell me that their aunt or grandma survived Stage 4. I normally grin and bear it. I think right now that's the hardest to deal with...other's understanding of the disease.

[Tm7777]

I agreed !!!

[My2greyhounds]

I completely understand . When I finished chemo to start hormone therapy along with targeted therapies everyone celebrated as if I was "cured". It's hard to explain to people why I'm still going for treatment every 3 weeks even though I look healthy. People constantly ask when my treatment will be done. it's hard enough to deal with this diagnosis without having to explain it to everyone.

[Hidden in reply to My2greyhounds]

Hello My2greyhounds,

I gave up explaining. A lot of people don't "get" what's involved. They hear the C word and ask what are considered appropriate questions. I tell them 'I'm grand, never better'. Friends and family know and don't need to ask. I find it difficult enough keeping up with the routine which has taken over my current life!

[Hidden]

Hello Jtbarneveld,

Thank you for posting. I have given up trying to explain what is involved with MBC/S4. They recite others' conditions and survival years.

The latest confusion is that surrounding immunotherapy treatments. Some think it's a one size fits all.

It's not easy....

Best wishes,

Patricia 1517

[Hidden]

Many people don't get what it means to be diagnosed with MBC, and it's very frustrating and upsetting. I usually say that it's not curable, but treatable, and that treatments never end. And I even wonder whether they get the point.

[Misshelley]

I have the same frustration. Everyone says I look great. They don't see how tired I am inside!

[1998withStage4]

Have you looked at the "A Story Half Told" website? storyhalftold.com/ It focuses strictly on metastatic breast cancer. It was started by the Metastatic Breast Cancer Alliance where they surveyed those who have earlier stages of breast cancer and the general public. You might find it interesting.

[Hopkins123]

Definitely more lonely this time around . People don't know what to say, so most of the time they say nothing or "you look great".

[Markayjay]

Well people who live with you know it's no fun walking around in pain.