16 People Living With Metastatic Breast Cancer Share Advice for the Newly Diagnosed
Written by: Adam Leitenberger, editorial director
When you’re first diagnosed with metastatic breast cancer (MBC) — breast cancer that has spread to another part of the body, such as the liver, brain, bones, or lungs — there’s no right or wrong way to feel. Processing all of the information about your diagnosis and treatment can be overwhelming.
Whether you’re feeling angry, afraid, depressed, or disconnected, it’s important to know that you are not alone, and that many others have gotten through the difficult first weeks and months of coming to terms with an MBC diagnosis — and you can, too.
As many of the Breastcancer.org Community members in our stage IV forum can tell you, it gets better, especially as you learn that many people are living full and productive lives with MBC. We asked our Community members who are living with MBC what they wished they’d known back when they received their diagnosis and the advice they’d share with those who have been recently diagnosed with MBC. Here are some of their responses (edited slightly for length and clarity).
“You will be surprised at how quickly you adapt ...”
Nothing can prepare you for the shock of being told this news. From the moment you wake up to the moment you go to bed, for the first few months it’s all you can think about.
However you might feel now, you will not die tomorrow. You will have time to get used to this new normal … Now is the time to be gentle on yourself. Trust me, you will smile and laugh again. You will find the joy in life that those without this diagnosis do not know.
If you find solace and a sense of control by changing your eating habits and exercising, then do it. But do not feel guilty if you can’t. For the first year I drank a lot and ate terribly but I’ve been stable for four and a half years. Don’t beat yourself up about this.
Do not give up hope. I felt so broken and was so envious of those around me. The thought of being in treatment forever is overwhelming. You will be surprised at how quickly you adapt and build your life around it.
Take one day at a time and don't lose hope. This is a path that you can’t imagine being able to walk down. But you will. You are stronger than you think. – Dita
“It was so much harder the first year than it is now.”
It's been almost 3 years since my diagnosis of MBC and I can tell you, it was so much harder the first year than it is now. Like many, my first thoughts were focused on dying, planning my funeral, and getting my "affairs in order." I spent most of the first year feeling very sad and crying a good part of the time. Every new ache and pain scared me silly.
Nearing my 1-year anniversary, I totally fell apart, so I took myself to a doctor and got on an antidepressant. Seeing that doctor was one of the best things that could have happened! After listening to my story, his words were: "Girl, go home and get your s*** together! Stop dying and start living!" It may sound harsh but it was exactly what I needed to hear.
I've tried to live that way ever since and my life has been so much better. Yes, I still worry over every new ache and pain, but take a pain pill and get on with my life. I go on vacations, shop, make all kinds of things, and live as normally as possible.
Here’s my advice: Give yourself time. It's a shock and you won't be thinking clearly at first. Don't be afraid to ask for, and demand, any meds you need for pain, sleep, depression. A few sessions with a cancer counselor can be beneficial.
After the shock is over, look into your financial needs. I didn't realize I qualified for disability until 6 months later. Once I applied, I received my acceptance letter 3 weeks to the day …
Some friends will disappear. Some friends will make it all about them and losing you. Some friends will go overboard. It's okay; no one really knows what to do and each person is different. Don't be afraid to express your needs. Your family may also get depressed and need help. Once you take care of your needs and get back into a good mental state, they will usually follow. If not, insist they get the help they need. – NMJanet
“Remember that many people with MBC can live with the disease for years …”
… and possibly longer than statistics might lead one to believe. By the time they are published, survival statistics may be outdated due to the introduction of newer and more effective drugs. How long a particular MBC patient lives seems to be mostly dependent on how well their cancer responds to various treatments. Some people also believe that lifestyle may play a helpful role in survival. Many patients who were initially given only months to live by their doctors are still alive years later. – Bestbird
“There is hope. You are not a statistic.”
I am still in shock myself and shedding many tears. But there is hope. You are not a statistic. Statistics are made up of thousands of cases. You are a unique case of one. I get overwhelmed also, but then I read on the Breastcancer.org Community Discussion Boards how women with stage IV have gone on with their lives, enjoying their families, even travelling. It is not an immediate death sentence, although it can feel like it. – Amica
“I used to be totally freaked at the word terminal …”
… until I spoke to my oncologist. She has many patients who have had this for over 10 years … Just remember, everyone living on this planet is terminal, and God is the one who says when he wants you home. Stay positive. – lyricw9
“Don’t give up.”
When I first got my diagnosis I was terrified to the point that the only place I felt safe was at home with my family.
The good news is that unlike when my mother passed away from cancer 35 years ago, this is not a death sentence. There are so many treatments available, my nurse practitioner said that breast cancer is treated more like a chronic illness now.
I understand and am very realistic that this disease may be the thing that will one day end my life, but I am not letting it take my life that easy. I am going to fight and enjoy the time that I have left with my family … The one thing that I can say is don't give up. – holmes13
“I let myself completely melt down when I need to.”
I feel better when I feel like I'm actually doing something about this diagnosis … Here's how I'm coping at the moment (it changes regularly).
First, I let myself completely melt down when I need to. But, I try to do it on my own and away from my husband and kids. They are all so scared, that seeing me freak out really freaks them out. I will tell my hubby that I need to just soak in the bath and be alone, and I just cry. Usually I feel better afterwards.
Second, I am taking something to help me sleep, because nighttime is the worst for me worrying about the future and being deprived of sleep makes me more emotional.
Third, I am in an online MBC support group that is very helpful … and I started seeing a counselor to help me process this grief.
Finally, I keep myself distracted with work and family throughout the day and pretend that nothing is wrong as often as I can. – georgiabirdgirl
“My social worker suggested that I reframe my thoughts …”
Change your thoughts around to make the situation easier to mentally deal with. When we assume we are "dying of cancer,” all treatments and side effects will seem worse. This was my experience.
My social worker suggested that I reframe my thoughts around "living with cancer" instead. It does take a long time, but most days, I do not feel gloomy about it.
The second piece of advice if you want a natural mood booster is walking. I walk approximately an hour a day, always outside, even if cold and snowy. I believe the fresh air and exercise aid my sleep and any side effects I may get from ongoing treatment, and boosts my overall mood. – mara51506
“Cancer … doesn't have to scare you out of enjoying life.”
Try not to analyze too much or think about the past and what might have caused your cancer, as that is futile now. At first, it’s bewildering and there’s a lot to learn in a short time, but just take it one step at a time.
There are a lot of stages to go through before you start to realize that life can be good. I know that from where you are right now that might seem strange, but for me, having stage IV cancer with extensive bone mets has focused my mind to what really matters in life.
Don't blame yourself. You did nothing wrong. This is just rotten bad luck.
Learn to be selfish. And by that I mean learn to put yourself first. A lot of women go through life making themselves their last priority. For me, getting sick has taught me that I was there for everyone but myself and that had to change.
Take it one day at a time. Don't look at the future, just take your tablets, turn up for appointments, and between those times find things that make you happy and concentrate on those.
Live in the moment. Each moment is a gift. Appreciate what you have. Don't focus on what you've lost.
This is a lot to process but, believe me … you will find that having cancer, frightening as the diagnosis is, doesn't have to scare you out of enjoying life. – Leapfrog
“Happiness will creep back in if you let it.”
We went home and I mourned myself for 2 weeks and thought hard about a way out of this, but there wasn't/isn't. So, I've chosen to obsess with diet, exercise, and research. I've always eaten well and exercised, or so I thought, but I'm now healthier than ever and have to admit I am happy. I know that sounds strange, but I believe if you are willing, happiness will creep back in if you let it, I promise.
In short, I found obsession with nutrition my thing to occupy myself and it definitely won't hurt to stay as fit as possible for this SOB called cancer. – Thicket
“Keep reaching out to friends and loved ones …”
… even if they seem to be retreating from you. I found that the more I felt them retreating, the less I would reach out, thinking they just don't want to deal with this. After some experience, I realize a lot of people just don't know how to help or communicate. You will need your friends and family even if it is just to go shopping with you or to a movie. Don't get caught in the cycle of retreating as they do or you will be very lonely. – artistatheart
“It's OK to scream, cry, and feel fear or sorrow …”
This will pass. You are not going to die tomorrow, next week or next month. Life will get better, I promise.
In the meantime, a tip: To get you over that hump, ask for whatever chemical help you need. If you're in pain, get it controlled. Having trouble sleeping? Ask for sleeping pills. Depressed? Get meds.
It's not necessarily for forever, and there's no reason to be stoic about anything. – pajim
“Concentrate on what’s really important:”
Reconnect with family and friends. Really, this is the most important thing you can do. Make those connections. Keep those connections. It's work but really it's our purpose.
Don't forget the connection you have with Gia, God, Spirit, Mother Earth, whatever you may wish to call it or how you perceive it. You are a part of something bigger … Now is the time to start cultivating that relationship — the one that will see you beyond this physical world.
Spend a few minutes every day searching out what that means to you. I take communion with trees. Really. I feel best sitting in the warmth of the forest among friends. I feel connected. Sadly, I live in a climate that drives me indoors for a large part of the year but I still manage to find my connection even if not ideal.
Live! You are not dead yet. – MaineRottweilers
“Seek counseling with someone experienced in newly diagnosed patients.”
My husband and I met twice with a counselor — it was hugely helpful in getting through the first two months. She helped us understand and accept our feelings and suggested a few coping mechanisms that helped tremendously. My most difficult issue was dealing with the reactions of friends and family. Her advice really helped us through that difficult time. I would recommend to anyone to seek counseling with someone experienced in newly diagnosed patients. – Sherriw
Prioritize joy. Make your life worth living. Care for yourself. Take loving care of your body and soul. Get rid of old anger, hurt, sadness, trauma. Go see a therapist, a guru, a priest, a shaman — whatever does it for you in order to get your mind and heart in order. Find peace.
I may die earlier than I had planned. But I am living now, because my life is joyful now. And that wasn't the case two years ago, when I was diagnosed. – NineTwelve
“You can find fulfillment in life.”
Yes, it's a shock. Acknowledge that, mourn, cry, and then make a plan. Seek a second opinion if you feel doubt or uncertainty. Now, know you will not die tomorrow or next month. No one knows when you will die and if your medical oncologist gives you an expiration date, find a new one!
Do not give away your possessions — enjoy them. As a matter of fact, buy that new winter coat or pretty earrings if you want! Travel if that's your thing, but buy insurance that covers pre-existing conditions. Quit your job if it doesn't bring you joy, but keep working if you love your work. Yes, for the majority of us, stage IV will shorten our lives, but don't put your foot in the grave even one minute before you have to! Even with pain or side effects of treatment, you can find fulfillment in life. – exbrnxgrl
If you are newly diagnosed with MBC, join the conversation with others who share your experience in the Breastcancer.org Community.
Written by: Adam Leitenberger, editorial director