Early Stagers vs. Metastatic Patients

I had no idea this is a thing, but it is!  Before I was diagnosed with Stage IV Metastatic Breast Cancer, I honestly looked at breast cancer as one illness.  Now, I understand that it is so much more complicated than that and the more I learn, the more I am amazed at how much I didn’t know.  Yes, my mother is a 16 year survivor of early stage breast cancer, but we definitely supported her through that experience and didn’t look back all that much.

My first introduction to the division between metastatic patients and those with early stage breast cancer was when I was asked by a social worker not to come to the regular breast cancer support group.  I hadn’t actually tried it yet, but I had inquired about it when we thought I was Stage II initially and I followed up with her once I knew I was metastatic. She did direct me to a metastatic group, but that was so off putting that I never went to either group.

Her explanation as to why I shouldn’t attend the regular support group was that I might scare the other participants.  Yes, I suppose being reminded of your own mortality might be scary.  However, the longer I’ve lived with metastatic breast cancer, the more I think I should’ve shown up to that support group so that those other ladies could see what they might face.  You see, I’ve become very well aware that early stage breast cancer patients are often told they are “cured,” and not told that each of them has a 30% chance of becoming metastatic at some point.  While some may feel that being told this is scary, I do feel a responsibility to ensure that others are not living under an incorrect misapprehension that their breast cancer “journey” is completed when it might not be.

I recently attended a planning meeting for a local organization that puts on an event each year for breast cancer survivors.  I consented to be a model for the event in 2019 because when I attended in 2018, I was astonished at how little there was available for Stage IV patients.  I spoke up and asked why.  My medical oncologist is very involved with the planning and she immediately asked me to fill that gap.

So, I agreed. I’m a model and I’m working to get stage IV organizations to participate, but going to that planning meeting was HARD.  The women went around the room, celebrating how long each has been a survivor.  There was a table FULL of pink paraphernalia to purchase with all proceeds going towards the event.

I honestly felt sick to my stomach.  I will never be a survivor and so I have no idea how hard it is to be one.  I do understand that sometimes the best way to cope with something scary is to compartmentalize it and move on with your life.  I have to do that every day.

BUT

Each of the women in that room has a 30% chance of becoming metastatic.  When it came time for me to introduce myself, the room was very quiet and then the next person quickly jumped in.  I wasn’t looking for applause or a pat on the back, but I could tell that my impending mortality was not welcome.

When it came time to draft my bio for the fashion show, the person helping me with the formatting told me that I needed to conform to the script, which included an announcement at the end as to how long I’ve been a “survivor.”  When I objected and shared that I will never be a survivor, she had to get board approval to allow me to change the script from “survivor” to “thriver.”  Board approval to change the script?!  Now they approved it, but it is only more clear to me that this group caters to early stagers and those of us at Stage IV are an anomaly.  I’m not afraid to be the token anomaly, but it surprises me how little they know.

I attended another fashion show where I was permitted to speak about being a thriver rather than a survivor.  One of the organizers of the event posted pictures of the models afterwards, labeling all of us survivors.  When I sent her a private message pointing out that I will never be a survivor and simply asking her to change the caption to survivors AND thrivers or just a thriver, she didn’t respond.  When I then posted a comment on the post pointing out that the caption didn’t actually describe me, she blocked me.

SHE BLOCKED ME FOR POINTING OUT THAT THE LABEL SHE GAVE ME WAS WRONG.

I do object to being labeled a survivor, since I will never be done with treatment and my cancer will never be behind me, and in response, she talked to friends of mine about me being negative and then blocked me on all social media platforms.

So, why is there such a divide? Why can’t we all fight for the same thing?  Why don’t early stagers understand that finding a cure for those of us who are dying will ensure that they will not also die?  Why can we not join forces?

I wish I had the answers to these questions.  All I can say for myself is that being the elephant in the room, being the outsider, being told I am negative or scary for telling my own story is simply heartbreaking.  I am not looking for a medal or a pat on the back.  I am not looking for recognition, all I want is to be included.  To be recognized and to be given a chance to educate.

To those people who think I’m being negative for speaking the truth, sure go ahead and block me.  Keeping your head in the sand will only hurt you.  I’ll continue to advocate for research, research and more research.  When the results of that research helps those who didn’t listen to me, I won’t even ask for a thank you; at the same time, it might be nice.

50 thoughts on “Early Stagers vs. Metastatic Patients

  1. Abigail,

    Such a very heartfelt and truthful piece. I’m a stage 2 “survivor” and I promise I know that At any time it can come back. It’s something I live with and think about everyday. I know I’m not cured. Thank you for your honest words.

    Liked by 2 people

  2. I am so sorry this has been your experience. Being stage 3 I’ve always thought more focus should go to research for a cure so we ALL can truly be survivors. I love a dear stage 4 friend recently and I will never regret bearing witness to her story. Look up her work @_notestoafriend I think it could help you feel so understood. It’s crazy to me about this divide. I mean I do understand fear. It was scary to watch what happened to my friend. But it was worth it. And i learned how to be brave no matter what and in the end my fear actually decreased. It’s not as though any of us had a choice in what stage we have or what will happen in the future. I’ll keep advocating for stage 4 support and research. Hugs to you.

    Liked by 3 people

  3. Cancer would never be this scary if it didn’t mean death for so many. Focus should be on stopping death in those already metastatic then preventing metastasis then killing early stage then prevention. The priorities are backwards for those of us dying.

    Liked by 2 people

  4. I have never liked the term survivor. I’m an early stager and I finished treatment about five years ago. That’s all I ever say. I survived treatment, that’s it. And I never say I’m cancer-free. I’m acutely aware that cancer is very likely not done with me. Thankfully my oncologist never lead me to believe I was “cured”. He was very clear about the stats. I think it’s important to hear from women living with cancer, I don’t find it scary or off putting. We’re all in this together.

    Liked by 2 people

  5. THANK YOU! I am Stage IV too. I find that mostly people, and cancer patients, are scared to look at Stage IV – I know I was. Early in my first go round in 2015 I met with a psychologist at MD Anderson. I was afraid but finally vocalized that I was terrified of Stage IV. Then lo and behold it comes back around 1-1/2 years later. I consider myself a thriver, too, and I much rather hang with those of us who are enduring the challenges of a lifetime terminal disease. There I said it but it’s not the end of the world. I remain hopeful in my treatments and if I can extend my life by RX therapies then I welcome it (although the SE can be rough). Once again, thank you and it’s a pleasure to make your acquaintance!

    Liked by 2 people

  6. Believe we will be on meds forever. Just like diabetics, heart disease, Alzheimer, kidney disease. All who experience diseases live on meds and borrowed time. So we must not feel sorry for ourselves. Just stay strong and fighting for the cure to come in our lifetime.

    Liked by 2 people

    1. It’s not about feeling sorry for yourself, no one should feel sorry about something you did not ask for or deserve. It’s just about others accepting you too have a right to be acknowledged and supported. My daughter has stage IV and we are never allowed to say fight or battle ,her mantra is I’m not dead yet.

      Liked by 2 people

  7. Abigail, thank you for sharing this. I am a nurse, I work with breast cancer patients in all phases of the disease. I have never looked at one type verses the other re: survivors verses non-survivors. I’m ashamed to say it never crossed my mind that a cancer patient would think that way. I’ve never has such an indication from any patient. Your post has increased my knowledge and will influence my approach to the subject and the conversation.

    Liked by 2 people

  8. I absolutely admire your candor, grace, ability to educate and share your truth. Sometimes the truth is uncomfortable. Sometimes it doesn’t fit into the neat box we were led to believe it was supposed to fit into. Instead of being angry at the what that truth is, many times the anger gets projected back onto the messenger and that’s unfortunate. Keep sharing, my friend. Keep sharing.

    Liked by 2 people

    1. I want to mention I was stage 1 breast cancer in 2011. I returned home from Dana-Faber yesterday to learn I was terminal, however it was the 7wks of radiation that caused this – I believe I would be considered someone who was over treated for bc.
      The cancer I have now is called Angio Sarcoma of the breast. On July 6th I had aggressive surgery removing the breast & all flesh that was in line of the RT beams (can not reconstruct because excess flesh removed & skin graft on leg to help cover the massive area up.
      I’m unsure why I’m sending you this but I have seen you a Twitter & admire you.

      Liked by 2 people

      1. Hi Laura, I’m so sorry to hear about what you’ve been through. Your most recent surgery sounds so painful. I hope you have done well with recovery. Are you signed up with the MBC Project? If not, I strongly recommend that you do @ mbcproject .org (no spaces) – in addition to the fabulous work they are doing, one of the researchers, Corrie Painter, PhD, is a former Angio Sarcoma of the breast patient. I’m sure she would be happy to speak to you if you ever wanted to talk to someone that had a similar cancer. I would be happy to connect you. I hope I’m not being too intrusive. Apologies if I am. All the best, Susan

        Liked by 2 people

  9. Abigail, you are a beautiful person, and it horrifies me that you have been treated that way. I understand that those who have not experienced cancer might not understand, but those of us who are early stage should. Keep speaking up and out (as I know you will), and I’ll keep trying to educate on my end. Thanks for sharing this, it’s a divide that I want to see bridged too.

    Liked by 2 people

  10. Abigail,
    I applaud you for sharing your truths. The way you were treated was/is horrible. No one should be forced to follow some script, take on a label they don’t want or be shunned from a support group because of stage or for any other reason for that matter. If I’m going to be candid, I admit that reading the title of this post and a couple of your sentences made me bristle. I don’t see it as early stagers vs late stagers. And as you likely know, I don’t sugarcoat and have been called negative and too angry more than once because of this. Sometimes I feel like a misfit as I often don’t feel I belong in either camp. I do know there are many early stagers who do understand the things you speak about and completely shun the pink myths, but you’re right, there are many that do not as well. Call me naive, but I still believe we are all in this together – even if some don’t yet realize it. Thank you for sharing your voice. You’re going to make an impact for sure.

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  11. I know people think if they got it all in surgery that is the end of it but we live our lives knowing that may not be true. I am so glad there are people like you that stand up for all of us and try to keep others informed of the way things actually are!

    Liked by 2 people

  12. Great word – THRIVER! I am going to use it. I was diagnosed Stage 3, ended treatment in July, 2014. I can never figure out the Survivor date thing and people actually argue over it! Also, one of my husband’s cousins just died of Stage 4 in her liver; another is in the hospital with it in her ribs. It does NOT go away. I struggle to find peace because it freaks me out that there is little they can do.

    Liked by 2 people

  13. Being diagnosed at stage IIIB with inflammatory breast cancer I’ve always been in that ‘advanced’ circle and while no longer in active treatment I shun the term survivor and don’t see myself in those terms. Language is challenging and words do matter. It’s especially difficult because not everyone feels the same about that language and what words are acceptable….a bit of a mine field. A third of IBC patients are metastatic at diagnosis with another third having disease spread at some point. It’s important that our community be involved in promoting research that addresses advanced disease while noting that some will not face that. The bottom line: we will make more progress if we can figure out a way to work together to end this crummy disease for everyone!

    Liked by 2 people

  14. Thank you for sharing ! I think I could have written this ( minus the modeling) same thing happened to me at my cancer center when I went to my first support group no other “thrivers”. And they all stared at me when I told my story, definitely could feel the “ I don’t want to be you looks” I never went back and found a METAvivor support group .

    Thank you for supporting research and not just awareness !
    From a fellow Thriver !

    Liked by 1 person

  15. Thank you for this! My bestie passed away from stage 4 breast cancer and her doctor never even told her the truth to begin with! She thought she was curable!

    Liked by 2 people

  16. Abigail, I am sorry that people acted so insensitively to you, especially organizations that are known for supporting women with breast cancer. Your blog post put the situation in persepective and why everyone needs to be more aware and sensitive.

    Liked by 2 people

  17. I was ‘only’ stage 1… I HATE when people say it that way… diagnosed Sept 1, 2016 – went through surgery, chemo, radiation and now meds. I survived treatment and I say I am a ‘survivor so far’… with an emphasis on so far. Cancer sucks and it is smart. I don’t dwell on the possibility of metastatic, but I also am smart enough to not deny the possibility. My Oncology NP was clear with me during my last visit after treatment — if it comes back, it is treatable, not curable. Scary words. Of those who tried to mold you into their mold, or blocked you on social media – they are clearly NOT in it for others… only their agenda. Their responses sound self-centered to me. Find the support YOU need. I’m a pray-er and you are on my list! Godspeed.

    Liked by 1 person

    1. Thank you for the prayers!! I very much appreciate it. Yes, I agree, the reactions of others was all about them, not me; at the same time, I think it is important to draw attention to the experiences I had since I all too often hear of others going through similar issues. It’s so sad and demoralizing at times. We need to work together!!

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  18. I too was diagnosed stage4 after about 11 years after my first stage 2 diagnosis. Yes I get the same reaction most times- the I don’t want to hear it or if you are with some others oh you can beat this so most of the time I just don’t say anything . It’s just easier right now .
    I went to a fashion show last year where it was all survivors and I almost lost it but most were my friends so I couldn’t be upset for them but did say something because it isn’t fair to the ones that are not surviving . It’s like we have to hide .
    I m sorry you had to go through this as well !

    Liked by 2 people

  19. Hi, Abigail! I, too, am stage IV and a thriver, for a while longer. I was diagnosed in Dec. 2015 and was metastatic then. Since then, I have lived life to its fullest and not looked back. I have been frustrated at the lack of understanding and also at being called a “survivor” since my survival is only temporary, but isn’t ours all? You should look into I Care. It is a fabulous program whose primary objective is to pair up patient, doctor, and researcher(s) (all over the world?) to explore options for you. There is research being done that may benefit one or some of us in time to save our lives, but doctors want to keep doing the same thing expecting a different result. They are on autopilot, and insurance companies are worse! They honestly don’t care if we live or die. I do, and ICare does! There is so much going on out there that I had no idea about until I found ICare. Feel free to friend me and email me so we can talk more about what we have in common and how we can help each other.

    Liked by 1 person

  20. Thank you so much for sharing. I had stage 2 diagnosis in 2014, but it is always in my mind that cancer isn’t done with me. It breaks my heart that you were treated this way. I wish that I had been informed about metistatic BC at my diagnosis but it was never spoken of by my doctors. We have a right to be informed. I am grateful for your strength to advocate for those, who like myself need to know the reality of it all. I have learned so much through blogs like this and @stupiddumbbreastcancer.

    Liked by 2 people

  21. Hi, First sorry you were treated that way. I was diagnosed with stage 1 Grade 2 ILC in Nov 2017. Had lumpectomy, Chemo and Radiation. Just went for my first Mammogram yesterday. My mammogram came back NED. Doesn’t mean I am cured, just in remission. My friends were congratulating me on being cancer free. I know I am not, as it can come back. Only one friend said congrats on being in remission. His mom had cancer and he knows there is no guarantee it won’t come back.
    I will always worry when it is time for my next mammogram or MRI.

    Liked by 2 people

  22. I can agree with all that has been said though I too have never modeled. I have survived 510 different treatments of chemotherapy and 2 treatments of Y90 radiation since my MBC diagnosis 11 years ago! So I am a survivor of chemo! Every year I face people asking me how long have I been a survivor and I have never liked that because I am not…only was for a few years after my original diagnosis and surgery. I always say, ‘I am a patient still’ but I will try to use the word Thriver now! I love my Metastatic group even though it took me 8 years to join…I just was not aware of it!
    I am sorry Abigail for what you and others have been through! May God use you and your words to encourage other MBC thrivers!

    Liked by 2 people

  23. It just breaks my heart that you were treated this way. You are a thriver; that’s the perfect word for it. I’ve been following your blog for a while now but had to just respond to this one and tell you how proud I am of you for exercising your voice in such a clear and authentic way. Your writing is poignant, truthful yet inspiring. I am grateful to know you ‘before’ and to follow your journey now from a little farther away. Sending you love and light…

    Liked by 2 people

  24. It really hurt my soul that you were treated in such as way. Like Chemomom, it took me a long time to join a group because I didn’t want a gloom and doom group. I finally found the perfect fit. We do exercise, art therapy, writing workshops, nutrition and thats just a few. There are ladies with all stages of cancer. very positive vibe. Take care of YOU. 🙂

    Liked by 2 people

  25. Well said ! The words came straight from my mouth I have lost so much to this Cancer but I guess I’m still here but at what price ? My regards Angela Chapman

    Liked by 2 people

  26. I love this post, I have to admit I am a part of a couple of BC groups and I have “censored” my own responses to not let provide info that I am stage IV. Admittedly, it is because I dont want to greak people out and I haven’t been living with it long enough to feel secure as a thriver. I feel like you captured how I was feeling – thank you!

    Liked by 1 person

  27. Thank you for bringing this more attention. When we told people about my husband’s metastatic lung cancer, they often responded with something like “It will be okay. They are going to find a cure and he will be fine.” There seems to be a real lack of understanding about what metastatic means. It often felt very lonely. The fact that people who should know better are actively trying to suppress your voice is really appalling. Keep on talking ❤ facingcancerwithgrace.com

    Liked by 1 person

    1. Thank you for reading and commenting. Yes, cancer can be incredibly isolating and metastatic cancer, even more so. I know that it is scary to face your own mortality and the reminder isn’t always welcome. Love and light to you. 😘❤️

      Like

  28. I have to thank you for the efforts you have put in writing this blog.
    I’m hoping to see the same high-grade content from you later on as well.
    In truth, your creative writing abilities has motivated me to
    get my own blog now 😉

    Liked by 1 person

  29. I tell people all the time that there are so many politics within the Breast Cancer community. I find it so sad because I feel like we don’t support eachother because of some technicalities. We all have our own stories and they should be shared regardless of diagnosis. I am so open to everyone and I am so sad that people would not respect you or your feelings. Thanks for writing this post.

    Liked by 1 person

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