When Your Cancer Experience Feels Marginalized

When Your Cancer Experience Feels Marginalized

A topic that comes up fairly often in emails I receive from you, my dear readers, and in the Facebook groups I’m in is this one – feeling marginalized, regarding your cancer experience. This can happen regardless of your stage, btw. Has this ever happened to you? Have you ever felt your experience is being marginalized?

What do I mean by this?

For example, you didn’t have chemo, so you’ve been told things like, well, you got off easy then or, I hear radiation is a breeze. Perhaps you’ve heard things like, you only had to have a lumpectomy. Or at least you still have one breast left. Or you’re only stage 0 (or 1 or 2). Or whatever the case might be.

And of course, many of us have heard, at least you got the good cancer. 

There is no good cancer!

Basically, saying something that makes someone else feel marginalized implies, just suck it up; you don’t have it so bad.

Talk about no validation. 

Of course, we all fully realize there will always be some who have it far worse than we do, as well as some who have it far better. Such is the case with life in general, right?

Again, do you ever feel as if your cancer experience is being marginalized?

I posed this question on Facebook and sifted through some emails and decided to share some of the comments with you, my dear readers. Perhaps a surprising thing (or perhaps not) are ones from metsters. We’ll get to those. But first, here’s what Donna had to say:

Even in the BC community, I feel as though I’m not enough of a “sister” because I didn’t have burned skin, chemo brain or lose my hair. But I did have cancer, I did have a mastectomy, I am on hormone therapy that interferes with my quality of life, I did have additional surgeries all related to BC and I live every day with the same fear of recurrence.

It’s sad that even within the breast cancer community some of us, unintentionally or not, marginalize experiences of others. Come on people, let’s try harder not to do that. And yes, I’m guilty of doing it too.

As Sue shares, even some medical professionals are guilty of marginalizing:
My nurse said, it’s good news… it’s not stage 3!! I was gob smacked… Nothing about diagnosing cancer at any stage is good or lucky!

Taking this even further, I had a doctor suggest that perhaps I should be more grateful. I am paraphrasing, but his words were along the lines of, you’re alive, aren’t you?

Kerri had said this to say about the “good” cancer:

I’ve been told many times that I have a “good” cancer. At first, it felt so minimizing, but five years on, I understand that these folks were trying to encourage me. Still, ranking our diseases is a hurtful thing to do.

Hurtful, no kidding. Again, there is no good cancer! And guilt, including survivor’s guilt, rears it head pretty frequently.

Nancy had this to say about guilt:

I know so many who have had more extensive surgeries, more intense therapies, and who have died from breast cancer. I sometimes feel guilty that I didn’t have disfiguring surgery, that I didn’t have to go through chemo. So it works both ways. People think I “got off easy,” and I don’t argue the point, even though deep down, I know I will always live with the fear of a recurrence.

Elaine expressed similar feelings of guilt:

I had a lumpectomy, no need for recon or prosthetics, sentinel node clear, no lymphedema, made it through chemo and rads, and really have minimal side effects from arimidex. I don‘t know who thinks it was easier sometimes…them or me. And I do feel some guilt on occasion. All through treatment, the deterioration of my knee was a bigger bother. Of course, I constantly compare my experience to my mom who died of mbc. But it is a weird thing.

Julia had this to say about “BRCA world,” and it’s important (and troubling) because if she feels this way, others do too. This topic is worthy of a post all its own down the road. If anyone else has experienced something similar, please comment or send me an email. I want to hear from you.

I happen to have a genetic situation about which little was understood until recently, a deleterious PALB2 mutation. In function, PALB2 is in a continuum with BRCA 1/2 – some think it should be labeled BRCA3. And yet, there’s no point in attending meetings of support groups such as those organized by FORCE because they’re dominated by those who are BRCA 1/2 affected, and there’s little interest in going beyond. The general attitude seems to be that this is a special club for “BRCA Babes” and all others are interlopers.

And as I mentioned, marginalizing happens among our stage 4 friends too.

Gail had this to say:

I was told that at least I had 3 years before it metastasized. I also feel guilty that I’m still here almost 8 years later and many with MBC don’t survive this long, so in that sense, I’m very fortunate.

Kelly, also stage 4, shared this:

Some people think those of us with “only” bone mets have it (relatively) easy.

So that’s a sampling of comments. And let’s not forget how those with metastatic disease feel marginalized during October and the rest of the year, too, because of the lack of attention and research dollars that stage 4 has historically received in awareness campaigns and such. For far too long, metastatic breast cancer were unspoken words. Literally. Unspoken.

As a reader with metastatic disease once said in an email:

The early stagers have significant and long-lasting collateral damage, too, along with ongoing risk of recurrence, but dying trumps (sorry, I hate to use that word) everything.

No one can argue with that. Still, walls, hierarchies of pain and suffering quotas remain unhelpful, do they not?

I’ve written about the walls in Cancer Land before and the hierarchies too. Perhaps I was too subtle! Some of that stuff cannot be avoided, I suppose. There is comfort in surrounding ourselves with those who truly get us. But this isn’t really about walls and hierarchies.

It’s more about respect and remembering every person’s experience is unique. 

It’s also worth noting, as Sue, Elaine and Gail pointed out, sometimes we do the marginalizing to ourselves. Often we are hardest on ourselves. And not just regarding cancer, am I right?

Bottom line, no one’s cancer experience should ever be marginalized, including yours.

NOTE:  So what should do you do when someone makes you feel marginalized? That’ll be a post for another day.

Have you ever felt marginalized regarding your cancer, or something else? 

Why do you think this happens, even within the breast cancer community itself?

What do you do when someone makes you feel this way?

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When your cancer experience feels marginalized

29 thoughts on “When Your Cancer Experience Feels Marginalized

  1. About feeling marginalized, shortly after diagnosis in a state of shock, my psychiatrist, a woman, who was dealing with my divorce from an abuser, said “oh, you’ll feel much better in a year”. Non-existent empathy or compassion.

    1. Erika, You’d expect a bit more of both from your psychiatrist. Sorry you have had to deal with a divorce on top of cancer. And abuse. You’ve been through a lot. Thank you for sharing.

  2. Very interesting post for me in a strange way. You see, I may be guilty of marginalizing my BC myself. Just this week, I was at my three month exam with my oncologist (Stage 1A, O-Node involvement, 2-year survivor, lumpectomy, radiation, Arimidex, fat-grafting to reconstruct my breast). I said to her – “I almost feel guilty saying I had breast cancer because, compared to so many others, I really got off pretty easy.” She is the one who corrected me, saying – “No, it was as scary and as serious for you as for anyone. This is always a serious concern.”
    I find myself not wanting to talk about my diagnosis because I so often feel that people want to hear about a much more horrible experience. With the fat-grafting, I actually have the same shape and form as before my surgery. The scar is pretty minimal. So far, I am lucky but, of course, no one ever shakes the fear of recurrence.

    1. Leann, Sounds like your oncologist is very empathetic and compassionate. You can talk about it whenever you need to in this space. Not the same as face-to-face discussion, but…I appreciate you taking time to comment. Thank you.

  3. I can absolutely relate to this. I had two neighbors that were going through treatment the same time as I was. One has since passed with S4 lung cancer, the other is doing great. When I told the one with lung cancer that I had BC, she said “Really”? That was it. Not another word. It was hurtful because I had driven her to treatments, taken food over, etc. But not even one encouraging word from her. Was she worried I would take away from her attention? I don’t know, but it was very hurtful. I continued to be a support for her, and offered to take her to appointments, run errands, etc. But absolutely nothing in return. Another friend with breast cancer chose mastectomy, I chose lumpectomy. My choice. She actually said to me that she had to have mastectomy because she had “ductal” involvement. Well, I had IDC and DCIS, stage 2, grade 3, 2cm, with an onco score of 29. I chose no chemo. She did not want to hear about my BC, only wanted to talk about hers. Sometimes we want someone to listen, without judging or comparing.

    1. JC, Sometimes others aren’t able to see beyond their own experiences due to a variety of reasons. I’m sorry you felt marginalized. And you’re so right, sometimes we want someone to listen, without judging or comparing. Thank you for sharing.

  4. This post really hit home. Upon hearing I had been diagnosed with BC in my right breast (20 years after treatment for stage 2 BC in my left breast), my son-in-law (a family physician) told me how happy he was to hear the new cancer was stage 0. I was shocked and terribly upset by his comment, and he could not understand why I reacted this way.

    1. Karen, I’m sorry you felt marginalized. I’m sure your son-in-law’s intentions were good, but instead his comment came across as upsetting to you. Perhaps you’ve since tried sharing how you felt/feel. That’s up to you, of course. I appreciate you sharing. Hope you’re doing alright now.

  5. I feel I could write a book about this. I certainly need to write a blog entry or something to try to shake off the remainder of the anger I feel about this. My sister, the one person in my family that has stayed in touch, for the most part, refuses to hear anything about my diagnosis or treatments. She calls a lot , but took me a year too realize she REALLY only wanted one responses: I AM FINE. She has minimized everything I’ve been through, including telling me (she loves to pontificate if it is something she knows nothing about)) that if “chemo had collateral damage, the FDA wouldn’t approve it. Anyway, she is the BEST of the family – most have ignored me, so I am supposed to be grateful for her (I appreciate some of it,but really am angry to be minimized and she will not discuss it. That was only the tip of the iceberg for me ! More another time.

    1. Ellie, I am sorry your sister has left you feeling so marginalized. It’s understandable that you feel angry. I hope at some point, she will be more open to discussing your genuine feelings, but sometimes that’s just not in the cards. Your idea to “write out” your anger might be a good one. I always find it helpful. Thank you for sharing.

  6. I marginalized my own BC when diagnosed at 32, in 1984. I had a mastectomy, reconstruction, and no other treatment. I figured so many women had to go through so much, I was just lucky. I did have fears of recurrence, but I guess I didn’t really expect it to happen. One year after my husband died of cancer, I was diagnosed with bone mets. I had radiation, and went on hormone blockers, but my oncologist told me that I could only expect 5 years. He provided minimal care, but treated me like I was already gone. Finally, after 5 years with no more problems, I asked him if it was possible that I could live a lot longer, he shrugged, and said “well, sure, you can never know”. I went on Medicare and could choose my own oncologist. She was so positive, she said I could live for years and years, and that I was doing great. She said she wished all her Stage 4 patients were so healthy. And all of a sudden, I got my life back. I had been living with a deadline, and it was gone. I hate the AI I’m on, but after trying all 3, I’ve chosen to stay with the one I’m on. I wish I’d fought my HMO harder to get another doctor, but I felt defeated. Now I know better, and I no longer marginalize my cancer. Life is precious.

    1. Vicki, That is quite the experience you describe. Some oncologists are lacking in compassion, among other things. I’m glad you now have one that takes a different approach; sounds like she’s a much better fit. It’s wonderful you feel you have your life back. You didn’t mention how long after your first diagnosis you had the recurrence. Guess I’m curious about that. I’m very sorry yout husband died of cancer. You’ve been through so much. Thank you for sharing about some of it. Take care.

      1. I was first diagnosed in Feb 1984. MBC diagnosed in 6-2012. Forget the 5-year mark! Or 10- yr. It was 29 years, and boy, was I surprised! Thanks for your kind words.

  7. My mother said, “Well, your cancer must not be bad if they are only doing chemo every other week. Your father had to have treatment every week.” (He had lung cancer)

    1. Debby, Oh my. Sometimes mothers say the wrong things too. Her comment must’ve stung. I’m sorry your father had lung cancer. I didn’t know that. Thank you for sharing; it’s good to hear from you.

  8. First a weird observation–Sue says the nurse said “at least it isn’t stage 3”! I mean it sucks that Sue was marginalized like that, but now, as one DX as Stage 3 and who is currently enjoying NED status, that kind of thing freaks me out! So it kind of goes the other way around too, right? Hope no stage 3 patient was within earshot and thought “oh shit” when they heard this (like I am right now!). I am plenty crazy and worry-wart like on my own, I don’t need that kind of comment to make me nuttier–right?!

    Thinking back to your previous posts, and my own trilogy tackling the Disease Olympics, I mean, are we just banging our heads on the wall here? I still feel exactly the same as when I wrote about it and I definitely feel the same as when I commented on your post. Because of the rift between metsters and “early stagers” (and whatever we Stage 3 people are, argh), I have just bowed out a bit. I still interact with my carefully curated group and I am hesitant to engage more. Partly, of course, I am too busy with other things. But also, I don’t want the aggravation and that is a cop out, I know. Sure, dying trumps everything, that is true, but I’m not going to bother interacting with someone who tells me that and is obviously thinking less of me for my stage 3 status. I hope I can move above that, but I’m not there yet.

    1. CC, I thought of you when I first read that! And yes, I hope no stage 3 person was within earshot too. I often think we might be banging our heads on the wall about many topics in Cancer Land, but as you wrote recently, it’s up to us. So, guess I’ll keep banging. All we can do in engage when and where we can. Sometimes we’re up for whatever challenges that present, and sometimes we’re not. It’s okay to bow out, and it’s okay to jump in. That’s how I see it anyway. Thank you for chiming in.

  9. It is so contradictory, and confusing, when we are surrounded by so many cancer fundraisers which bring awareness (hopefully), and then people involved with those events, simply say “oh gee whiz, hope you are ok”, in response to your revelation you have cancer. The bottom line, a friend is a friend, and everyone else isn’t. You’ll know the difference by how they leave you feeling after you share your dx and tx.

  10. I liked this post and hearing people’s experiences. I did have someone say to me, “She’ll be fine,” when I told her you had cancer. “Trust me, she will.”

    She worked as a hair dresser, and her reasoning was that she had apparently seen “so many” women with breast cancer and they all survived, according to her. She made it seem like no big deal.

    Her comment sounds really stupid now but at the time it actually did make me feel better.

    1. Lindsay, I don’t think you’ve shared that before. Interesting how your feelings about her comment have evolved. Thank you for reading. I thought reading about people’s experiences and feelings about being marginalized was really interesting too.

  11. I’ve felt marginalized when people point out I’m alive and it’s in the past when I’ve suffered collateral damage that affects my qualify of life today. On the flip side, I know I’ve been guilty of marginalizing some who haven’t been through chemo. I’m certain I wouldn’t have been back to “my old self” if I could have avoided chemo, so perhaps I feel envious of earlier early stagers. Once I realized I was guilty of marginalizing, I stopped and made an effort to listen and validate those whose experiences were different than mine.

    I’ve actually marginalized myself to myself because I was triple negative and have never been on hormone suppression therapy. I just hear what others go through and realize I was lucky in that regard. How strange that I’d feel “lucky” because my oncologist, rightly so, thought I was not lucky in that regard. He’d would have preferred that medicine existed to support a non-recurrence for his triple negative patients.

    1. Eileen, I think we’re all guilty of marginalizing others, as well as ourselves. It does take a conscious effort sometimes to listen (really listen) and validate experiences of others. We tend to immediately compare, which is human nature, or habit. Not entirely sure which. Your oncologist’s thoughts on there being no AI-type med is pretty insightful and something for many of us, including me, to keep in mind. Thank you for for sharing, Eileen.

  12. I wrote about this topic several years ago and I am so pleased to see you bring it up too. If we minimize our pain – or someone else does it for us – the natural follow on from this line of reasoning is that we can more easily pick up our lives where we left off and because we did not have to go through any surgical, chemotherapeutic or radiotherapeutic healing of cancer, we do not have to emotionally heal from it either.
    Whether these thoughts come from your own mind or that of others, it all serves the same purpose – it invalidates your experience. None of us truly knows the pain another person goes through when they experience a life-changing event, and by learning to not compare experiences, we are learning to practice some much-needed compassion both for ourselves and others. I can’t help thinking of Plato’s words in this regard “Be kind, for everyone you meet is fighting a hard battle”

    1. Marie, I remember that post you wrote. Your insights are so spot on on this, Marie. Comparing experiences is one thing, we all do that. And I think it’s actually healthy. It’s when we start weighing/judging the experience of someone else’s as not being all that bad, or whatever the case might be. Empathy goes a long way. Thank you for sharing.

  13. Hello Nancy and thanks so much for this. As always, I read your posts not because I have breast cancer, but because you write so much about the common experience of simply becoming a patient diagnosed with a life-changing condition.

    Heart patients like me discover pretty darned quickly that there’s what I call an unspoken hierarchy of heart disease, as beautifully illustrated the day I showed up for my first cardiac rehabilitation class. When an elderly man in class asked me ‘What are you in for?’, I started telling him that I’d had a stent implanted after surviving my ‘widow maker’ heart attack – when he interrupted me loudly: “I have THREE stents!” and then proceeded to tell me the far more interesting story of his own cardiac event. Suddenly, my own story of misdiagnosis and survival seemed pretty puny compared to his, hardly worth mentioning, really, as he rattled on in great detail.

    I often wonder about this pervasive urge to compare our own story with that of others, and why some people so often feel compelled to insist that their story matters more, while dismissing others who are just as scared, just as overwhelmed, and suffering just as much.

    1. Carolyn, I remember that story you shared in your book! Gosh, it’s that old disease one-up-manship thing all over again. You covered that so well in your book, as well as many other topics. I’m sure that elderly man’s comments made you feel pretty awful. Comparing is human nature. I like to think judging and determining others don’t have it as bad as we do, can be avoided. Suffering is a very personal matter and deserving of empathy without judgment from outsiders who never know the complete story. Thank you for reading and sharing your insights on this important topic, Carolyn.

  14. Hello Nancy,

    I got thyroid cancer a few years (the good one!) and minimised the scare as did some people around me. I did feel marginalised then when fear of recurrence or emotion of the scare swept through me but I was able to move on with life mostly as if nothing had happened.

    My first recurrence a few years later I did not take too seriously. Partly because I didn’t want to go into panic mode I knew from the original disease. The second recurrence a few months later was more of a worry but its thyroid cancer so what’s the big deal, right? Cut it out, do some radiation and move on with life. And I was determined to do just that.
    Later the same year I had metastasis in lungs (12!) and liver. My ‘good’ cancer turned out to be a ‘naughty’ one, one that is resistant to traditional treatment. I went on a new drug that was not yet on the market (I was lucky to get compassionate stock). I will have to take it for life. Since its new, nobody really knows what this drug does long term. In the short term, it has serious side effects and requires frequent medical check ups.
    Luckily, I responded well to the medication and it is a huge relief. Friends and acquaintances, however, expected me to be ‘so happy’ and move on with life as if nothing was the matter. Far from it. I am on the drug for life which means family planning went out of the window. Travelling overseas is extremely complicated. Quality of life is affected by severe side effects. I am exhausted and in pain. Few people want to hear of it. Maybe because it makes them feel guilty as they move on in life, get promoted have children, travel. Maybe because I disappoint them for not being ‘so happy’ about my reduced quality and quantity of life. I don’t want to sound bitter, but marginalisation for me means that cancer sets me apart in my own family, social and professional life. I have met new and amazing people, many of them also dealing with chronic illness and I remain optimistic that life has a lot more to offer than where I am at now. Cancer is hard not only on our body and mind but also on the social fabric we rely on.

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