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When Your Cancer Experience Feels Marginalized

When your cancer experience feel marginalized.

A topic that often comes up in emails I receive from dear readers and in 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?

For example, you didn’t have chemo so you’ve been told things like, you got off easy 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 you’re lucky it’s “only” bone mets. 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!

(And what if you happen to be a man with breast cancer? You can bet they feel marginalized at times.)

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 wrote 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

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Linda Catanzaro Boberg

Wednesday 9th of June 2021

After my stroke, I was ssent to a cardiologist. Her first words were "You are so lucky." I screamed, "LUCKY!!!" I really lost it. I went on to tell her that someone who'd been through EVERYTHING to treat cancer, who had a 40% chance of it returning (which is did a year later), and who had a brain tumor removed is not lucky. How dare she!

Nancy

Monday 14th of June 2021

Linda, OMG, that cardiologist's comment was so out of line. How dare she indeed. Good for you for speaking your mind. I'm wondering now how she reacted.

GINA

Wednesday 9th of June 2021

I was told by oncologist #1 in my first visit with him on 11/9/2018 "it's not even really cancer" to which I replied "than why am I sitting in an oncology office?" I was then told by oncologist #2 in my 2nd visit with her on 12/9/2019(b/c I was crying)"your letting cancer run your life and you need to get a hold of this!" to which I could not even reply as I was just completely stunned hearing this from her. I left this visit and sat in my car for at least 45 mins crying on the phone with my best friend in Florida. What has been shared here by everyone with how they have been minimized and marginalized is absolutely shitty and completely unacceptable. God Bless all of you and thank you Nancy for being so very honest in your posts. I have been reading your posts for at least 2years now and so appreciate your telling it like it is.

Nancy

Monday 14th of June 2021

GINA, I can't believe such things were said to you by oncologists. I don't blame you one bit for feeling stunned. That was unacceptable. I hope you reported it. Thank you for sharing and thank you for reading these past two years. Keeping it real is always one of my goals.

Marlene

Saturday 20th of July 2019

I was diagnosed 4 months ago with BC, had mastectomy of my right breast, started chemo 2 weeks ago. I lost most of my friends, lost my partner and since 'I look so good, haven't lost my hair yet' nobody really takes my illness seriously. The doctors don't really know the extent of the cancer, they removed 9 nods and the whole right breast but since the parts got lost after the operation, I will need the heaviest treatment. 6 chemo and 25 radiation. I feel lonely, afraid but can't show it since my daughter is only 12 and I'm the only one she has left. I'm living in a foreign country without any support group and where most people don't even know what cancer is. I have to work, finacialy I don't have a choice so with nausea, fatigue, I get up in the morning and go to work. So yes, I'm struggling with my situation and with the fact that nobody takes it serious!

Nancy

Monday 22nd of July 2019

Marlene, I'm sorry you are struggling and that some aren't taking your cancer seriously. You are taken seriously here. You're not alone, though I know it sometimes feels that way. Good luck with chemo and beyond.

Marilyn

Wednesday 10th of April 2019

I too have felt marginalized, as if I have no right to be distressed by having cancer: - my cancer was discovered early- Stage 1 - lymph nodes clear - did not require chemo after surgery - only 16 radiation treatments were deemed to be enough - I am not young- 65 at diagnosis - I have chosen not to take endocrine therapy after having tried anastrazole, exemestane and tamoxifen with nasty side effects, and my oncologist is OK with my decision

I still worry and wonder what the future will bring. I know my cancer story may not be over, but I feel I have no right to feel fear and worry- I should just buck up and get on with my life, yet I live with one breast 20% smaller than the other, the fear of lymphedema and the ever present spectre of a recurrence.

Nancy

Thursday 11th of April 2019

Marilyn, I'm sorry you have felt marginalized. That shouldn't happen. Thank you for sharing.

Nancy

Wednesday 10th of April 2019

I have the exactly the same situation as you, Marilyn~~~only difference is I tried 4 endocrine therapies before I told my oncologist I chose to stop ~~with her support. I watched my mother suffer from severe osteoporosis and that was one of my deciding factors for my decision ~~~~among many other side effects. I was diagnosed a year and half ago when I was 65.

Lisa K HAir

Friday 8th of February 2019

I feel that way when someone presumes that since I had cancer, it was automatically Breast cancer. They act ass if I'm less ill with Uterine cancer than if I'd had the more "popular" type! Our local mall has had the nerve to reserve a parking place just for "Breast cancer" patients and survivors. I park in it anyway, just almost begging someone to ask me which breast I had it in. I'm wanting them to stare at mine, and actually make a choice on where my cancer was removed from!! Then, I can tell them to stop trivializing ANY form of cancer. Breast cancer patients go through hell with treatment, side effects, hair loss, and femininity issues. But at the end of the day, we are all just cancer patients, trying to make the best of a bad situation. No bravery, no "gift", no special treatment except human dignity.