What I Wish I'd Known When I Was First Diagnosed With Metastatic Breast Cancer
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I can never think of just one answer to this question. I say things like:
- Be your own advocate.
- Ask for help from those who love you.
- Try to make the most of each day, even when you feel terrible.
I would also add that this diagnosis doesn't mean the end is imminent. You can live a lot of life after a mets diagnosis! But my words never feel like quite enough. So here's what other women who've been down this rough road have to say on the matter.
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Find support! Cancer is hard and stage 4 is even harder. I always suggestbreastcancer.org. -- Jenny
Prioritize carefully. -- Jimmie
I've been sitting here for 15 minutes, trying think of some all-encompassing wise thing to say, and I've got nothing. But I fully agree with "find support." I was completely unaware that groups like this existed for the first 8 months of my diagnosis. I wish I'd been able to connect with other stage IV women sooner! -- Marisa
I have nothing profound. I tell them: 1. Breathe 2. Worry when you have to 3. One day, one step at a time. -- Leslie
The only thing that I can think of is Do Not Stop living your life. What you loved doing before do it after the diagnosis. -- Chantal
Get rid of drama (including people)... simplify... and live your own truth, your way, in your time. This is no one else's life but yours. -- Lesley
Don't look at statistics, don't read negative stories. Everybody has their own race to run, and many of us live a long time with mets. Mine is liver and I'm 6 years and going strong. Not without some seriously rough patches -- but you never know if you'll be in that category. Live your life, enjoy your days and try not to live in the future. -- Ann
Learn to advocate for yourself. -- Karen
Don't be afraid to ask your doctor to prescribe something for anxiety. The first few months are really hard. Allow yourself to grieve, but not forever. Surround yourself with people who lift you up and find things that make you happy. -- Donda
Something for anxiety AND a sleep aid. -- Susan
Each day is a gift no matter your circumstances. And really thinking that everyone is terminal in a sense helped me as well. No one really knows how long they have, no one! -- Emily
I always stress the second opinion and finding Doctors you have full confidence in. -- Colleen
Don't just try traditional medication. Go Asian, drink juice, exercise, and pray... pray like never before! -- Melanie
LIVE, LAUGH, LOVE, each and every day, I am. -- Theresa
Get copies of the pathology reports, join an online group such as this one, and ask how long people are surviving with this disease, particularly those with similar dx. You may be looking at several years rather than months. It took a long time to understand that at first. -- Theresa
Keep meticulous records of drugs & reactions. You may end up on the same drug again in the future. Always get a copy of your scans on a disk. Keep all reports, especially pathology! -- Lynn
The first year will most likely be the most difficult for acceptance/denial. Look into disability benefits early and start making fun plans! -- Bethany
There is life after the diagnosis, and it's possible to live a good life despite the prognosis. We are not a statistic, and don't ever think that you will fall into the stats. Day by day, moment by moment, relish it and enjoy the little things... always find a snippet to your day that brings a smile to your face. Cancer will not define me as a person, but it will enhance the way in which I choose to live. -- Judit
Ignore all statistics. I have been enjoying a good quality of life for 4 yrs, still working, traveling, having fun. Everyone has a different cancer journey. But, the first year is definitely the hardest! -- Donna
Mine to share would be to, "Expectations breed limitations... be present!" Finding yourself and trusting yourself is very liberating. -- Wendy
You MUST be your own advocate. -- Jody
Be your own best advocate. Research, read and ASK QUESTIONS!! -- Tricia
I'd tell them it is not over. Keep going, keep getting out of bed everyday and trying. It is possible for women to live several years with Stage IV cancer. -- Jaymi
Absolutely be your own advocate AND remove all negative people from your life. -- MaryAnne
We never have another chance at today, so make the best of it! -- Catherine
I would recommend getting multiple opinions on route of treatment. It is hard to not want to rush into something, but a second opinion on how to get started can help set your mind at ease (I ended up waiting 4 months for a second opinion and wish I had done it at first). -- Mandi
LIVE every day! -- Kelly
Find a doctor you love and trust. It makes the ride less horrible. -- Beth
Get a therapist if you don't have one already. Metastatic disease takes you to dark places; you need someone who will not only go there with you, but who will remember to bring the flashlight so you can both come back again. -- Kathleen
Take a deep breath and a step back. Your life isn't over yet. Live each day to the fullest. If you can do a happy dance then DO IT WELL and if all you can do is lie and feel weak then it's time to read that book you've been meaning to or watching a good comedy. Get your paperwork in order but don't pay the undertaker just yet... you're probably going to be around much longer than what you think. -- Annelie
I would add to make sure you have a great support system around you. From family to friends to medical to other supports. -- Laura
Don't panic. -- Anne
BREATHE! -- Jessica
I have nothing profound. I tell them: 1. Breathe 2. Worry when you have to 3. One day, one step at a time. -- Leslie
The only thing that I can think of is Do Not Stop living your life. What you loved doing before do it after the diagnosis. -- Chantal
Get rid of drama (including people)... simplify... and live your own truth, your way, in your time. This is no one else's life but yours. -- Lesley
Don't look at statistics, don't read negative stories. Everybody has their own race to run, and many of us live a long time with mets. Mine is liver and I'm 6 years and going strong. Not without some seriously rough patches -- but you never know if you'll be in that category. Live your life, enjoy your days and try not to live in the future. -- Ann
Learn to advocate for yourself. -- Karen
Don't be afraid to ask your doctor to prescribe something for anxiety. The first few months are really hard. Allow yourself to grieve, but not forever. Surround yourself with people who lift you up and find things that make you happy. -- Donda
Something for anxiety AND a sleep aid. -- Susan
Each day is a gift no matter your circumstances. And really thinking that everyone is terminal in a sense helped me as well. No one really knows how long they have, no one! -- Emily
I always stress the second opinion and finding Doctors you have full confidence in. -- Colleen
Don't just try traditional medication. Go Asian, drink juice, exercise, and pray... pray like never before! -- Melanie
LIVE, LAUGH, LOVE, each and every day, I am. -- Theresa
Get copies of the pathology reports, join an online group such as this one, and ask how long people are surviving with this disease, particularly those with similar dx. You may be looking at several years rather than months. It took a long time to understand that at first. -- Theresa
Keep meticulous records of drugs & reactions. You may end up on the same drug again in the future. Always get a copy of your scans on a disk. Keep all reports, especially pathology! -- Lynn
The first year will most likely be the most difficult for acceptance/denial. Look into disability benefits early and start making fun plans! -- Bethany
There is life after the diagnosis, and it's possible to live a good life despite the prognosis. We are not a statistic, and don't ever think that you will fall into the stats. Day by day, moment by moment, relish it and enjoy the little things... always find a snippet to your day that brings a smile to your face. Cancer will not define me as a person, but it will enhance the way in which I choose to live. -- Judit
Ignore all statistics. I have been enjoying a good quality of life for 4 yrs, still working, traveling, having fun. Everyone has a different cancer journey. But, the first year is definitely the hardest! -- Donna
Mine to share would be to, "Expectations breed limitations... be present!" Finding yourself and trusting yourself is very liberating. -- Wendy
You MUST be your own advocate. -- Jody
Be your own best advocate. Research, read and ASK QUESTIONS!! -- Tricia
I'd tell them it is not over. Keep going, keep getting out of bed everyday and trying. It is possible for women to live several years with Stage IV cancer. -- Jaymi
Absolutely be your own advocate AND remove all negative people from your life. -- MaryAnne
We never have another chance at today, so make the best of it! -- Catherine
I would recommend getting multiple opinions on route of treatment. It is hard to not want to rush into something, but a second opinion on how to get started can help set your mind at ease (I ended up waiting 4 months for a second opinion and wish I had done it at first). -- Mandi
LIVE every day! -- Kelly
Find a doctor you love and trust. It makes the ride less horrible. -- Beth
Get a therapist if you don't have one already. Metastatic disease takes you to dark places; you need someone who will not only go there with you, but who will remember to bring the flashlight so you can both come back again. -- Kathleen
Take a deep breath and a step back. Your life isn't over yet. Live each day to the fullest. If you can do a happy dance then DO IT WELL and if all you can do is lie and feel weak then it's time to read that book you've been meaning to or watching a good comedy. Get your paperwork in order but don't pay the undertaker just yet... you're probably going to be around much longer than what you think. -- Annelie
I would add to make sure you have a great support system around you. From family to friends to medical to other supports. -- Laura
Don't panic. -- Anne
BREATHE! -- Jessica
An earlier version of this post originally appeared on my blog, Booby and the Beast.
Follow Jennifer Campisano on Twitter: www.twitter.com/JCampisano
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