by Yep, sorry, my apologies, with a diagnosis of metastasis four months ago, I didn’t beat cancer.
Every one said, “You are going to beat it,” some said, “If anyone can, you can!!” They cheered me on as I endured one treatment after another and I kept fighting “like a girl.” I was told I will kick cancer’s ass and will show cancer who is the boss. I rode the wave of positivity and determination. I believed that I will beat it too. I thrived on the fantasy of the cancer submitting to my will and strength.
Songs, inspirational quotes, memes, greeting cards and stories, all led to me to the one endpoint — “beating cancer.” Being very much a type A personality, I accepted the challenge, I said to myself “I will beat cancer.” Except for one open book exam, I have hardly failed at something in life. So why would I fail at this!
However, two and a half years after my first breast cancer diagnosis, I was diagnosed with metastatic disease in the lymph nodes in my chest and some spots in my liver. Shocked and traumatized only begins to define of what I experienced. It was a very hard and exhausting process to come to acceptance.
Broken and beaten, I felt like a failure as if I let down everyone who thought I would “knock the shit out of cancer.” I was no longer the example of how stage 3 can be a success story and inspiration. As a doctor I understood that it was nothing that I did, to bring back my cancer. But I still felt a sense of shame.
Statistics indicate that 30 percent of those are diagnosed with early-stage cancer will develop metastasis. I had just held on to 70 percent much more dearly. Medical science currently doesn’t know the exact mechanism through which cancer cells find home in other organs of the body.
The time had come to let go of being a “survivor” and on to a “thriver” or a “lifer,” the terms preferred by metastatic community since we ultimately end up not surviving the disease.
When I was diagnosed the first time, one of the things that helped me very much was supporting others with breast cancer. I did this so their journey could be easier and smoother through the knowledge and experience I had. I wrote blogs and participated actively in online groups.
Since the recurrence happened, I often wondered if I scared other survivors, if they looked at me and worried about getting metastatic cancer and sometimes I even wondered if they actively avoided me. I, the face of incurable metastatic cancer, everything that everyone diagnosed with breast cancer is worried about. The fear of dying of this terminal illness that has no cure. I have no cure.
Having metastatic illness is an emotionally isolating experience, and a lot of women I know tend to withdraw from others after metastasis because it is hard for others to understand our subjective experience…the experience of living life with an incurable, relentless illness with never-ending treatments. It is so overwhelming for others; they don’t want to hear much as it reactivates their own fears of mortality. I have experienced that from some of the survivor friends who want to keep the distance from me but I understand that they want to contain their anxieties of ending in my shoes. I didn’t want to horrify others.
I often wondered what people think when they look at me, and if and how sorry they feel for me. I imagine something to the effect of…“Oh this poor young woman with young children who has this illness that has no cure.”
Me and my metastatic cancer.
I remembered when I was newly diagnosed. The word “metastasis” used to send chills up my spine. I used to dread my Facebook feed on Mondays, which are #metsmonday. I did not want to be reminded that my cancer could metastasize, although at stage 3 with high grade cancer cells, I knew inside that the odds of it happening are very high.
One of my stage 4 friends has lived with bone metastasis for 11 years. She gave me hope. But I still would at times try and block her out of my mind for my own sanity, so I could worry less about me. It sounds selfish but the fear of recurrence is haunting.
I also wanted denial so bad…deny that it could happen to me. I convinced myself that I am doing everything possible to reduce the chances of my recurrence. From good diet to exercise to supplements and yoga, lowering stress and getting enough sleep, and all the medications and treatments. I did all possible to lower the chance of cancer taking root within me again.
But as time went on, I also worked hard on accepting what having cancer meant. It meant accepting a life that you have no control over…a life that transitions between sweet fantasies and harsh realities. I got used to those ups and downs. I saw my friends with stage four cancer kick each day in the butt, and beat cancer on a daily basis. My denial softened gradually and I thought, “if it (metastasis) happens, I will be okay.” I celebrated every clean scan and a good oncologist visit, but the fear of metastasis lingered.
And then it happened. I got another, “I am so sorry” call from my doctor, and I was devastated. Besides coping with my illness, I was sad that I lost my “credibility” as a cancer warrior who had “beaten” cancer. I was no longer a “success story”.
During all of the angst, I received this message from a fellow survivor whom I got to “know” via Facebook.
It said,
“Until I “met” you, I could not think of stage 4.
I’d panic, hyperventilate
Start to decompensate.
Then I met you.
You are showing me, with grace, passion and humor how this can be done.
You are something of a role model to me.
Doing this stage 4 before I do, if I do.
I’m not so afraid anymore. I have someone doing this ahead of me and I know how to do it.
If I ever get metastasis, I will have someone to emulate…and I will think of you the whole time.
Forgive me if this bugs you or hurts you. I just admire you so much and thank you and God for putting me in my life, but I am also so very, very sorry for your cancer.”
And then I realized I really don’t need to “beat cancer.” I have to however beat life at its game, one day at a time.
I am sorry I didn’t beat cancer but now it really doesn’t matter because I am busy kicking life, and showing others how to reconcile with stage 4 breast cancer.
Left Boob Gone Rogue 
Dear Uzma Yunus,
This is Krishnamurthy K, from FB, from the other side of Earth……
Every time I read your article, a lump chokes my throat …….
You Are, undoubtedly, a Valiant Fighter but,
Some Wars are Lost, though, It was Not Necessary ……
By this Article, you have also proved what a good Writer you are…..
…..
Telling, ” I am so sorry for you ” , is Not going to help you in any way, but, Still, I am so sorry for you
And
The ilks of you……
……
What Logic has the Creator and Destroyer plays here On Earth is unfathomable …….
……
As you said, Start your Next Kicking, Non Stop…….
……
Good day,
Ever…….
I’m a triple negative bc survivor, stage 1, grade 3, IDC.
In FB support groups for over 2 years, I believe there is no rhyme or reason for recurrence or even diagnosis.
Ladies and men from every level of fitness, eating habits, personal convictions, and positive or negative thoughts may or may not recur.
I believe it is not at all because someone did or did not do something. There shouldn’t be horrific pressure on someone that they could “lose” or that they didn’t fight hard enough.
I’m very guilty of the many sentences you mentioned in an effort to shore up a dear sister who’s just heard devastating news.
I’m so grateful for this blog, because I’ve learned just what that put onto them. The weight and pressure.
Thank you so much for writing this and educating.
Best wishes to you!
Thank you. I have never read about the feelings of loss described in your blog, but know it well. It has reminded me of my own loss so clearly, and of my wins. My brother received a bone marrow transplant for leukemia in 1984 with only a 10% chance of survival. My father, a professional basketball player, took on the challenge like any coach, and at the age of 12, my brother was on the team to beat the cancer with a strict regimen of positive attitude , lifting weights, eating low salt food, and avoiding any negative energy from those who described him as sick. He survived, and 33 years later he has two beautiful adopted children and attends a biannual Fred Hutchinson Cancer Research Center survival group. He is the one of the longest term survivors, and a recognized as successful fighter.
30 years after my brother’s diagnosis my dad got diagnosed with the same cancer, and was given a 30% chance of survival, a seemingly possible win given his skills to get my brother and his son through a 10% survival rate.
However, after a fight that was greater than any final four basketball game, he succumbed to cancer in the hospital fighting until he faded in a ICU with familiar diagnosis of sepsis due to the drugs they pumped in his body after a bone marrow transplant.
The stigma and feeling of failure was immense, and to this day I feel sorry that he felt he lost. But what I hope he knew was that the last year I spent with him as he fought was one of the best years I ever spent with him. I learned how he could calmly reflect on his life while casting a fly in his favorite river in Maine. I learned how to sit still and watch the river hatch a meal of catus flies, and talk to locals about the river levels back in the 1950s and feel a sense of time which reminded both of us of the vastness of our experiences and how Am his son and he is my father.
I miss him. But I know his fight against cancer was only one part of his life. It is not a sports game. It is not a statistic. It is not a diagnosis. My time with my dad was only the time when we grew to appreciate each other – to be reminded that he is my father and I am his son.
Thank you for telling your story. I know now that cancer is not a fight, it is only life, and no matter the outcome, I am lucky to have been a brother and a son.
What a beautiful sharing of what it’s like to be ‘you’ from your perspective. How brave you are to not let fear consume you, but to conquer fear by embracing it and challenge yourself to live fully each new day. We all need a ‘cornerstone’ to emulate; someone to show us how to live courageously!
God has the power to cure you. No matter what! Believe it, which means put your life in his hands and allow him to enter in your life to change your world. It is not about praying, is to give him the control of your life and recognize that we are nothing without him. God bless you! John 14:13 ^
And whatever request you make in my name, that I will do, so that the Father may have glory in the Son.
John 14:14 ^
If you make any request to me in my name, I will do it.
One of the best articles I’ve read about these issues. May god bless you. I understand you won’t beat cancer and you won’t be fine but you are fine,
Just returned from chemo…stage 4 uterine metastasized to lung…doing well…hardest part is the unknown…..your strength and others that follow you will help! 👍
Don’t lose hope and stay strong. My prayers for all of you. May God Bless all of u.
Prayers to you in hopes you to can beat it.dont give up dear my prayers are with you and your family 🙏🙏 🙏🙏 🙏🙏 🙏❤️❤️❤️
I have a friend who was diagnosed in January with TNBC. I also have another friend whom was diagnosed with it and in December it will be 2 years. My best friend died with it in 2014. I had never heard of this before and so appreciate reading what you wrote and all the comments. It sure helps those of us that are going through as we support our friends. It helps to understand the mood swings etc. My biggest fear being an encourage is that I would share the wrong message. After reading all of these comments it has helped me to understand so much better what both of my friends are going through. Thank you so much for strength and courage to share this message. May God Bless you always.
Hi, my husband has Stage 4 breast cancer mets to the bone and I just had a lumpectomy for it Stage 0. Your comments sounded so much like my Michael. He didn’t know any one else with cancer and after all the treatments he was worst than before. In fact he went on hospice. That was 16 months ago. We attended a Little Pink Houses of Hope Retreat in April and it really revitalized him. He talked to the other women, who all had breast cancer and found that what he was going through was not crazy because they went through it too. He now has a blog at amanwithbreastcancer.com and he tells his story whenever he can. The local paper did an article on him as did a nearby TV station. I keep telling him he may be the longest living breast cancer with mets that ever lived. Thank you for sharing your story. Many people don’t know anyone else that’s going thru this, and you and others like Michael help them to know that if you can do it they can too. Linda
Hi. Thank you for your courage in sharing this. Have thou come across: The Cancer Whispered by Sophie Sabbage? I think it and she might resonate with you and be a support for you too, if you wanted. Look for the Facebook page and read the book. Best wishes. May you live a long and fulfilled life. Xx
May God bless you! I’ll pray for you and your family. And don’t worry. Allah doesn’t give us more than we can bare. May Allah find more ways for you to be an inspiration for others that struggle with what you so positively look at. You’re really strong. Stay strong, Uzma. This too shall pass. ❤
You are so brave and inspiring, thank you.
I was so very touched by this article. You are one brave lady! I have experienced a couple of scary tests, but it is nothing in comparison to yours and so many others. You are an inspiration and I wish you God’s choicest blessings.
An acquaintance shared this with me.
I have been thinking about this since you posted. I am still navigating through how I feel about the way we talk about cancer. How I can talk about my cancer(cervical) .
I am really glad we are past the days when they would burn the sheets and mattresses of anyone who died of it. I am glad that I can fight my impulse to whisper the words “I had cancer”. I am both glad to be considered a survivor and yet hate that word. I hate that any pain or oddity I would have once considered normal brings immediate thoughts of metastasis, especially on bad days. I hate that I know my body was unable to fight it off, I worry that it never will. I wonder what makes cancer so special in this way, because it is not a special disease at all.
All that being said (written), I still don’t know what to say. Or what to think.
Saw this article across my news feed this morning before I went into my dr’s appt but didn’t read it.
Came out of the appt with a diagnosis of metastized breast cancer in my spine, an overloaded cognitive processing struggle, and a husband who is still in a state of shock. My world has just become oddly surreal…
Came across this article again, not searching for it, and I just want to say thank you for allowing me to now travel this road, as a companion, through your words.
Uzma. Stage 3 sister here to say-I feel you-I admire you-I am with you! Yet-I refuse to EVER believe there is no hope-no time for cures-no optimism. Pull out all your stops. Do things you’ve never done. Think in new ways. Harness the power of Quantum physics. Then-rewrite this post as the success that you are! Wonderful things on the horizon…that’s where to focus! Love.
Just read your wonderful article. I was first dxed at age 37 and kicked cancer’s ass (or so I thought) until 4 years ago (I’m now 56) when it showed up in the other breast. Bilateral mastectomy, several infections, and 8 horrible chemo treatments later…here I am. Dr said I was stage 4 because of metastasis. I may not be able to control having cancer but I CAN control how I react to it. That’s become my motto in dealing with cancer and life in general. I’m fairly certain it will come back at some point in a body part that I haven’t had removed (no breasts, uterus, tubes, or ovaries any more!). If I bury my head in the sand every once in awhile, I don’t panic. Thank you for sharing your fears, along with your wise words.
I lost my big sister a week ago. I just had the same conversation with my brother in law when he picked me up from the airport. I flew from my home in Atlanta to my sister’s home in Iowa. She battled for five years. I never heard her complain. I told my brother in law it doesn’t mean she isn’t a survivor or that cancer beat her. I spent the last two nights with her at hospice. I told her friend that she had a slow dance with death and after five years she was just damn tired of dancing. I am grieving and still crying every five or ten minutes but your article was wonderful to read. Instead of survivor or thriver, I feel like you are a cancer pioneer. You are going ahead of others to make the way. Pushing logs and boulders off the path, smoothing the ground. I will keep you in my thoughts, thank you for this article.
This is for you, Uzmamd.
I like your strength. I lost my Momma to Breast Cancer in 2014. I also lost my neice Starla to Brain Cancer in 2014. My Momma had it for only 6 months or so and my neice was born with Cancer. She fought it all her life until she was 35 years and she lost to Brain Cancer. I wish and Pray for the best for all with any Cancer. God bless all. P.S. I also lost a cousin to prostate Cancer and my Aunt and Brother Wade also in 2014. I think of them always and I luv and miss them all. I always wonder if there was something else I could’ve done for them.
I lost many to Cancer in 2014. My Momma to Breast Cancer, my cousin to Cancer in his kidneys and liver, my neice Starla at 35 years who fought all her life. She was born with Cancer. I also lost my Brother Wade to liver failure, my Aunt Joyce to COPD. A few cousins in 2014. My Aunt Myrt at 94 years to old age and many things. I watched a few of them die. I luv and miss them all. I like the story and send luck and wishes to her and whomever else needs it. You just have to keep on fighting it as long as you can. I have caregiver to a few. Cancer is a terrible disease. I wish it could be cured very simply. God bless all. Keep fighting to the end. Roll on my friends.
Uzma..that was a lovely read. You are a true inspiration.
Life is just a journey…we know not the destination but ours is to travel on…
I am preparing a training module for lay navigators who help MBC patients (not nurse navigators, though who knows…could prove useful for them, too). I’d like to use parts or perhaps all of this blog entry in the training manual. Please contact me at denzler@hughes.net to discuss this.
Brenda Denzler, Ph.D.
Dr. Denzler: This is Uzma’s husband Dheeraj. I am not sure if Uzma ever got back to you regarding your request. I urge you to check out her book “Left Boob Gone Rogue” on Amazon and consider urging your students to buy it as well as a companion to their training. As current copyright holder to Uzma’s blog and book, I am happy to consider giving you permission to use requested specific parts of the blog/book but do not give permission to use anything except those specific parts. If you have such specific parts that you have identified, please let me know. Thank you for doing the work that you do.
Regards,
Dheeraj Raina (docraina@gmail.com)
Thank you so much for you honesty and your vulnerability – I am just a medical doctor who has worked with dying patients for 30 years – and I know how hard it is to face my own inner truth, even if that has never been about physical life and death. I just want to let you know that I am here if you ever need a friend that can list to you no matter how painful your truth is.
This was a great article loved it all very touching brought tears to my eyes..your an awesome woman.. You will always be in my heart will never forget you…
Thank you so much for this! Your words ring true.
Thank you for courageously leading the way for others . Thank you for writing about your feelings .. your soul… you will always be a shining light no matter how dark it may get .
Thank you for this!
I shared an excerpt and a link at:
https://community.breastcancer.org/forum/8/topics/843900
I too have MBC and am in the final stages of living well while dying well.
May your journey be long and rich,
Stephanie
Stephanie, I tried to access your blog. I was unsuccessful. Reply to me and send me the link to your blog
As a 3-time ovarian cancer survivor who has to constantly endure various forms of transfusions to stay “cancer free” this article made me laugh out loud, cry, and share it with my family. Thank you for being HONEST.
My sister is enrolled in Hospice now and it is quite a jourmey. We can look back on a lot of fun trips we have taken, while on this one that is not fun.
Love to all of you as you travel your journeys and for your messages. It is so helpful to know we are not alone.
Thank you for sharing. Your words are my story as well, but something I have not been able to explain to others
Thank you for your courage. This post is my recurring nightmare as a five-year survivor. God bless you and keep you and I wish I could do something or say something to make this truth you now live not so. Hugs.
Thank you I work with patients who blame themselves when their cancer is not cured or returns they fell they did not try hard enough
You are and always will be a survivor, and unless you did something wrong– Never be sorry!!!
I have breast cancer, was diagnosed 14 yrs ago today. I did the minimum lumpectomy and radiation..refused chemo, still hoping to outlive the oncologist that told me, dead or dying in three months without chemo. After many severe complications from radiation, found out both radiation and chemo were not recommended for the ACCB I have, adenoids cystic carcinoma of the breast. I could have saved myself from permanent heart, lung, liver, nerve damage had I known. Still great full everyday that I refused chemo. Problem with breast cancer… there is no cure or cure time frame, just no sign of relapse.
Well said. I have been living with stage 4 lung cancer with metz in bones and brain. It is treatable with a targeted drug and gamma knife surgery when new tumors appear in brain. It is not curable. I have never cared for all the warrior talk. Cancer never wins. When anyone with cancer dies, the cancer cells die too.
Well said, Donna–how true that the cancer doesn’t win either. Thanks for sharing that.
I feel the same living with bone mets. At my 5 year post-breast cancer mark, bone lesions were discovered. I know the implications for the future. With the current chemo most lesions remain in control. I know the day will come when it changes and have to go on a stronger drug. But for now, I accept that I have a new normal and I make the best of everyday. Optimism won’t cure this but it sure makes everyday living enjoyable.
My thoughts are with you xx I am so so sorry to hear your news xxx
No cancer in my family …shocked last year when diagnosed ….. God bless you xxx
You might want to watch a documentary called” The Truth About Cancer”. What ever you do, I pray you get total healing 😊
There is no one but one person who claimed they were cured naturally in New Mexico. Be Careful before venturing that route.
God bless you on your journey.
Thank you for sharing your story. We found out my wife had ovarian cancer on Dec. 20, 2006. She died 100 days later. The cancer not only killed her, but it also destroyed the relationships I had with her family. Everyone was afraid to talk about it or acknowledge it. I was able to recover because of my own will to survive. Cancer and people can be so cruel and uncaring. If you have a wonderful support group, you are blessed.
You did not fail — ever. Cancer is an insidious disease. Nobody kicks cancer’s ass. Instead, cancer beats us up pretty badly. All you can do is take the best care of yourself that you can. I wish people would stop using the word “beat cancer.” Nobody beats it, even those who survive it, given the emotional repercussions. Your post moved me to tears.
Paola = what a beautiful reply! I am also a Christian lady. Stage 4 Breast Cancer, spread to bones. Get those monthly injections and I took part in a Clinical Trial (surgery and radiation). But God IS HOLDING my life in His Hands. I thank Him for each day He has given me. I was diagnosed in January 2015. There were no signs, except I was fracturing ribs and thought it was Osteo-Arthritis. So I hold onto my Lord – God bless you all dear gals! John 14:14 ♥
Dear Uzma…you are lovely and incredibly strong! I can only pray that if I get metastasis I can be the same…there’s a great book called “Speak the Language of Healing” ….instead of the language of the war on cancer…xxooox
You’re a great human being, you’ve done your best and you’ve done what’s most important, to learn from such a situation and to guide others with your example. I wish you the best. May I suggest for you to read Dying to be me by Anita Moorjani? Please enjoy, and keep on sharing your heart with us. I admire you
I agree Beth I thought you could beat cancer. My husband was cancer free for 8 years now it is a stage 4 melanoma. Got copies of scans from a year before and saw they had suggested a biopsy the year before. No one had bothered to tell us. So here we are devastated,in shock wondering what to do. Trying to get him in to the nutrition side of things. It’s hard when your not told until they tell you to get your affairs in order. I’m glad you had the courage to tell us the truth, I to have had breast cancer and was not told where it would or could go. Thanks for sharing.
Aoa, this article makes me laud your efforts and your tenacity to fight of your pain, in every possibe way. Remember the strive always comes from inside and for a person like you, you’re a true survivor who’s being a beacon of hope and struggle for all those looking for one word of positivity. You’ve really done your part. It would be a privilege to have your email , thanks 🙂
Your words really tesonated with me. My primary cancer was in my tonsil but spread to liver. I’ve been stable for a year and a half without chemo and I know how rare and fortunate I am. I was tokd I had 4-6 months to live. And yet I’m still here, and the hatdest part is the psychological toll of waking up each day and trying to find meaning and purpose in a life without long term future goals. What do I do today to live THIS day?
I also struggle with feeling sorry. Sorry for not beating cancer, sorry for making my family feel sad, sorry I’m no longer contributing to the economy, sorry I don’t really feel sorry for my friend who cries that her daughter is heading off to college. Sorry my finances are a mess, sorry I wont be here to look after my mother when she’s old(er), sorry I wont get to take my niece to Paris when she turns 16, sorry I have so much to be thankful for but I’m still overcome with grief.
Thank you for sharing your story.
Turn that boat around. Fill your head with only POSITIVE THOUGHTS. One never knows what God has in store for us. Remember, He only gives us “one day at a time” to live here on Earth anyway. He has a plan for you, just as He does for everyone. Try to focus on what you CAN do while you are here and do not dismay, because we never really DIE. We just “transition” into another place in space and time. I KNOW. …
because I died on the operating room table, and when I came back – I realized that God had a Master Plan for you AND me and every living “Soul”!
Fill your heart with LOVE and carry on the best way you can. That is all you need to do. God will be with you every step of the way.
Jillian, please share your experience on the operating table.