Dear Abby: breast cancer survivor?

[cereta]

DEAR ABBY: One of my co-workers, "Liz," lost her mother and an aunt to breast cancer. She had genetic testing done and found that she carries the breast cancer genes. As a precaution, she had a double mastectomy and a hysterectomy.

Since her surgery, she has been attending Relay For Life events and has been walking in the "survivor lap." There has been a huge backlash here in the office because people think Liz is misrepresenting herself as a cancer survivor. They are being cruel and calling her a liar, not so much to her face, but all over social media. I wonder if you think it is appropriate for her to call herself a survivor? -- CONFLICTED IN CALIFORNIA

DEAR CONFLICTED: Considering her family history and what genetic testing revealed about her chances of suffering the same fate as her mother and her aunt, what Liz did seems prudent to me. That her co-workers would trash her on social media is appalling. What horrible people they must be. I think the woman has suffered enough to walk a victory lap without being criticized for it -- don't you?

Comments

[cereta]

Note: I tagged this with bullying because, IMHO, whether you think the woman is appropriative, I don't think the other people are behaving well, either.

I am genuinely conflicted about this, so I'd like to see other people's responses.

[jadelennox]

She lost a mother an and aunt, and had more than a 1 in 2 chance of catching the same variant and likely dying, so she lost both breasts and a uterus. I might not have chosen to walk with survivors, but I'd punch in the face anyone who was a prick about it.

[cereta]

Yes. That's pretty much where my thoughts are going.

[kaberett]

... I think I'm honestly at "this entire thing is enough of a mess that according to one's own conscience be it"; obviously "Liz" hasn't been through emergency surgery/chemo/radiotherapy, but with that family history the chances of her developing cancer are very high, and sensible as preventative surgery may be that doesn't mean it's necessarily any less traumatic. (Everyone responds to traumatic events in different ways, etc.)

My personal take is -- well, I don't carry the family bowel-ovarian gene (great-grandfather, grandmother, and mother have all had related cancers), so it's not actually a set of decision I've had to make: but while I was waiting for the genetic test results to come back, I'd basically already come to the conclusion that if I were a carrier then I'd be having an elective hysterectomy before I turned twenty, as I also have endometriosis (which... raises your risk of ovarian cancer; in my case it would also have made the hysterectomy much more major surgery than usual, but I'd much rather have had complex open surgery without cancer in the mix that with it present). I'm pretty sure that I wouldn't have ended up describing myself as a survivor of the ovarian cancer at that point (and would have had to keep getting regular screens for bowel cancer), but I think this is also the kind of thing where terminology, and how to think and how to grieve and what space we make for people, hasn't quite caught up with medical advances yet -- so.

[cereta]

*nods* My feeling is that people are arguing over semantics, which are very important in their place, but which don't justify treating this woman like crap. What she's gone through is not trivial, and if that lap is the only thing that makes her feel like she has a community, well, she should run that lap. But regardless of how anyone feels about the labels, berating her in the way they're doing is not helpful to anyone.

[recessional]

I am deeply confused as to why her coworkers think it's any of their fucking business, why they assume they have enough of her medical history to make a judgement, why they think they have the RIGHT to, and what the fuck they think they're helping here.

Well actually I'm not. I'm quite certain that it is a grade A case of social dominance games and people looking consciously or not for a chance to establish pecking order and what social consequences apply, because that's what hairless plains apes DO, but I can pretend.

[the_rck]

The question of who can be considered a 'survivor' can be pretty nasty in the breast cancer community. Some people wouldn't consider me one, in spite of a tumor, surgery, and radiation, because I didn't need chemo. Some people wouldn't consider my sister one, in spite of the double mastectomy with at least three distinct cancers, because she didn't need radiation or chemo.

All of that inclines me to be a heck of a lot more generous in terms of who I consider a survivor. For some women a mastectomy, single or double, is utterly devastating, and reconstruction (a) is only an option for some women and (b) comes with its own huge host of problems. My sister is having to have a second reconstructive surgery (for three surgeries in the last year) because the first one didn't take her body type into account, just the original size and shape of her breasts. It turns out that implants the same size as her old breasts do pretty nasty things to her body.

And that's without addressing the question of a hysterectomy.

I'm of the opinion that survivorship is about pain and loss and fear. The woman in the letter dealt with all three.

[cereta]

You know, as someone who is (a) so glad to find support for my various nontlifehreatening ailments and who (b) gets that medical issues are different for everyone, I cannot imagine what a waste of time that is. I mean, LW's co-workers issues. They're seriously excluding women who've actually been diagnosed with the disease? Wow.

[the_rck]

I think that some of the gatekeeping comes from fear that, if people who have had milder courses of treatment are included, other people will assume that breast cancer is no big deal. So only people who have suffered 'enough' by some weird metric should be counted.

[the_rck]

My sister told me, when I talked to her a few days ago, that there are actually survivor groups specifically for women who've had a double mastectomy and/or hysterectomy based on genetic test results without having a diagnosis of cancer.

[amadi]

On the basis of "words have meanings" to be a cancer survivor, one needs to have had and survived cancer. This woman didn't. She's been through a trauma but not that trauma and her behavior is appropriative.

Should people behave in a cruel or bullying manner toward her? No. But there are no clean hands here whatsoever.

[delight]

I am way too tired to comment on anything besides that the coworkers are shits, but I can say that as a major participant in Relay ... the survivor's lap is also the caregiver's lap. I walk in it. I have walked in it since 2009. I walk with other people who lost parents young, who took care of their dying parents. We're survivors of a different kind. My job right now is 24/7 care for my parent with terminal cancer. (This one's pancreatic. My mother, who is a survivor, had breast cancer. Nobody gets to tell her she isn't one because she only had surgery and chemo and not radiation, by the way. She doesn't tolerate it for a second.)

So it is literally sanctioned by the organization that she walk in the lap she's walking in, provided she helped care for her mother and aunt and was emotionally affected by it, you know, at all.

[cereta]

Thanks for this bit of information. It casts an interesting light on things.

[vass]

LW said "they are being cruel and calling her a liar all over social media," and then the question LW is asking Abby is "do you think it is appropriate for her to call herself a survivor?" Not "do you think it's appropriate for them to bully her?" or "how should people caught between the bullies and Liz respond to this issue," but about whether Liz is in the right here. That's a funny priority.

The other thing that comes to my mind is that the disability police, especially the disability police who don't have the disability they're policing, seldom know as many of the medical details or as much about the condition itself as they think they do.

I'm thinking of all the people who report their neighbours to social services or the city council for pension fraud or disability parking permit fraud, because they KNOW this person is faking their disability, they know what REAL disability is like and that their neighbour doesn't have THAT. Their neighbour, meanwhile, was thoroughly assessed by qualified and had to provide evidence of that when applying for the pension and the parking permit, so social services and the council are perfectly aware that she's able to stand up or take a few steps, and that she still needs that permit and pension.

Probably the people who actually have the right to gatekeep Liz -- the Relay For Life survivors -- already know what her circumstances are, and have the context to decide if they think it's appropriate for her to walk with them.

[likeaduck]

That is indeed a funny priority.

[cereta]

Of course, now in the comments, people are speculating that she MUST have been a diva about being a survivor. I kind of feel like if there had been more aggressive assertion about it, the LW would have mentioned it. The only behavior she mentions is that lap. So, yeah.