Feelings about breast cancer awareness month
Comments
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Well worded post, Shetland!
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I'm looking for the like button, Shetland. I hate that people think I should be happy because I got a boob job and tummy tuck from my recon. Really? I would trade the "new" body for the old body, sags, bags and droopy skin, in a heartbeat if I could just be cancer and lymphedema free.
I also hate the sexualization of our disease. Do we have events to save the bladders, or the kidneys or the pancreases? Nope. Just the Tatas. God I hate that term. So freaking trivial. And demeaning.
Rant over. I'm doing my best to educate others about the realities of living with breast cancer. That's my way of saying piss off, pinktober.
Trish
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Spot on Shetland.
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Thanks, guys.
P.S. Thank you to BCO for providing this discussion board. It is truly helpful.
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Trishlya, I had breast cancer AND kidney cancer last year. I'd take 10 lumpectomies before going through a nephrectomy again - which I can't because I need my remaining kidney to stay alive. I DETEST the whole breast cancer awareness crap, partly because if anything's gonna come back to bite me in the ass, it'll be the kidney. Just finding a semi-decent forum for kidney cancer was a chore. But even though the kidney cancer was, for me, a bigger surgery and scarier experience, mostly the reactions I've gotten have been, "Uh-huh. But you've had BREAST cancer!" like it's some freaking sorority I joined. Grrrrrrr.
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Yesterday I was driving home on the interstate, and passed an advertisement for a regional cancer center, which consisted of nothing more than the name of the Center and a photograph of a very attractive woman gazing into the distance as the breeze blew through her hair, with a smile on her face, and the tagline: "New Patients Always Welcome".
Really? whatever happened to even pretending the goal was to wipe out this disease? In what universe is this an acceptable way to market your services? Not in mine.
So yeah, for all the reasons others have expressed more eloquently than me: I hate Pinktober. Want nothing to do with it, and am angry that it taints one of my favorite months (beautiful fall weather, my wedding anniversary, Halloween, fall colors...)..and pink: Yuck.
Octogirl
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Oncogirl,that billboard well sums up the casual nature many charities, institutions and businesses have towards this disease, particularly in this month. It's as if you might just turn up for treatment after diagnosis, have a few procedures, then you're all done and dusted. We all know that's not the case.
Anyway, here's my mansplaining Pinktober rant in PDF form. Feel free to share the link with your friends and relatives.
http://malebc.org/wp-content/uploads/2019/09/GenderBiasTowardsMenWithBreastCancer.pdf
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I hear you. Alice. Not to downplay breast cancer, because mine was kind of a crap diagnosis, but for some reason other cancers scare me more. Lung, colon, pancreatic, brain. Kidney is no walk in the park, either.
People seem shocked when I talk openly about having breast cancer, as if it's something to be embarrassed about. Bugs me.
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I hear you. Alice. Not to downplay breast cancer, because mine was kind of a crap diagnosis, but for some reason other cancers scare me more. Lung, colon, pancreatic, brain. Kidney is no walk in the park, either.
People seem shocked when I talk openly about having breast cancer, as if it's something to be embarrassed about. Bugs me.
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On one hand there's the "Breast cancer! Breast cancer! Rah rah rah!" craziness, then there's the ol' puritanical avoidance of the word "breast." It's a weird dichotomy of adoration and embarrassment that doesn't seem to happen with other body parts. I guess the overall emotional and mental age of a good portion of the world's citizens is about eleven.
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I was a bit surprised at everybodys reactions to all the pink stuff and bc awareness promotional ads etc. About my only thought on all that stuff is that i dont feel it is depicted realistiically. They could really give everyone a better education anout mbc. Most are quite ignorant on it.
That leads me to a bit of a dilemma. I am speaking to a group of 50 women next week. Casual acquaintances really at a social club. Great opportunity to remind them to get the girls checked. How much do i say? Is it inappropriate to say anything at all. I dont care what they know of my circumstances but thats not the topic on the agenda. Maybe just a few words? Any suggestions?
Gail Mary
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Alice, your post is so powerful, describing the differences between cancers. With all the promotion bc awareness gets, no wonder people seem to think its the holy grail of all cancers.
Traveltext, your article about men with bc is insightful. I saw the news yesterday that Beyonce’s father, Matthew Knowles, was diagnosed with bc.
gailmary, what topic is on the agenda where you’re speaking?
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I’ve seen some women with breast cancer go all in on Pinktober and I would never criticize that choice. My #1 issue with it is that so many companies cash in on it with a minuscule % of actual profits going to actual research.
I also take issue with the celebration like events, with catch phrases alluding to our taking a “journey”, this being a new start or beginning. I for one didn’t need to get this shit disease to appreciate my life and family. I didn’t need this “fresh start”.
My cancer center last year had an event for women of all stages which included talks, massage, lunch etc. I hung out with a very young woman whose breast cancer was misdiagnosed for like a year. She was newly married. Ended up she was stage4 - bone and brain mets. Her husband left her soon after the diagnosis. She was bald and had trouble walking and was just so thrilled to be at this event, because she didn’t get out much. Many of her friends had “moved on”. Her dad was picking her up after. I went home that day, got in the shower and bawled my eyes out.
This is breast cancer - one of the many many intolerable stories. But this isn’t as marketable
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As a recently diagnosed bc pt I am acutely aware of how the efforts to “heighten bc awareness” falls short to say the least. Until my diagnosis I (and most of my friends and family) didn’t know that bc is not ONE disease. I do not donate to Koman for the same reason I don’t donate to United Way.....too little is designated for actual care and research. And stop all the “prevention” talk. There is no way to “prevent” breast cancer. Many women with genetic mutations have prophylactic mastectomy believing it will prevent bc.....it reduces the risk but they can still get bc on chest wall, etc. All those stupid slogans are degrading and trivialize these horrible diseases that killing women every day. So, I won’t be wearing pink this month as a “statement”.
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I've shared this before but I was diagnosed with melanoma about 18 months before I was diagnosed with breast cancer. I'm not thrilled to have breast cancer but candidly the melanoma scares me far more because it's a sneaky FAST nasty cancer.
The enormous difference between the level of support I've gotten from my medical team and from society for breast cancer compared to melanoma is staggering. I basically got nothing except come in have it removed, here are the next steps for the next five years, k thx bai on the melanoma.
Don't get me wrong, I appreciate the support I'm currently getting (and I'm using nearly all the resources). But wow what a difference.
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i want to encourage the need for creating awareness often, not just when we are in the month of October. There is need to spread the preventive approach to cancer, make it well known. Must importantly its good will talk about diet and life styles that will predispose one to cancer. I also encourage free training of health caregiver and other individuals who are interested on knowing new innovations regarding breast cancer.
I want to support and encourage all breast cancer survivors.
October is here again let's keep talking about breast cancer!!!⁴
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I think that it depends on what we mean by pink celebrations. I watched GMA yesterday, since BC.org members were there. Personally, I enjoyed seeing survivors celebrating the number of years that they have been surviving. Just because many women and men die of this disease every year should not take away from the joy of surviving and celebrating that, every year. Does it need to happen in October, no. However, there is a great sense of community that can be fostered by coming together to think about our gratefulness in surviving, motivating women to take their risk of breast cancer seriously by getting checked, and motivating others to donate directly to research initiatives--not necessarily via a purchase of a consumer good, but directly. These are all possible outcomes of the attention during a singular month.
Regarding community, I actually felt better hearing that Robin Robert wished that some one had told her that she would face depression AFTER treatment. Some women don't come here and don't seek help via support groups. Maybe they saw Robin Roberts and felt better, too. GMA and the media-reach that Robin Roberts has is very useful to what I think is a worthy effort.
Does more need to be done beyond awareness? Of course. However, many of the behavioral outcomes that we want often start with awareness.
Do we need more research on MBC? Yes. Does that mean that survivors without MBC should not celebrate? No.
Did Michael Strahan and Mathew Knowles perhaps inspire more men to check themselves for breast cancer, having told their stories on GMA? Probably. This is especially true for the Black community where more attention is needed.
Oh, and speaking of the Black community, do we need more efforts dedicated to reducing the disparities in health care access, treatment and interactions with members of the medical community? Absolutely. Does this mean that we can't celebrate our wins until the world is perfect? No.
So, in the end, why waste time being angry about what is a well-intentioned albeit imperfect effort. Why not channel our anger toward the real enemy: Cancer. That's what got us here in the first place.
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I have had it twice. My oldest sister died after her second time resulted in the loss of an eye and went to her brain. One of our cousins died from breast cancer.
October should be the month to remind everyone to have a manmogram
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No one is victorious after treatment for breast cancer. My sister and I both had it twice. I am cery much aware I could still die from it
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Pamela, I see that this is your first post on this site. Do you have breast cancer?
What awareness do you want to create? Everyone knows about breast cancer. To Shetland Pony's excellent post, it's in the details where the awareness is missing. Is this the type of awareness you are referring to, because it's not what I see in most of the October activities (or in your brief post) and it's not what we need extended year around. We need real education of the real facts about breast cancer.
Are you aware that most breast cancers are caused by factors that are completely outside of our control? It's been a while since I've read up on this, but I believe that only approx. 15%-20% of breast cancers are caused, indirectly, by lifestyle and environmental factors. Some of these factors are outside of our control, people who had rads for a childhood cancer, for example. Almost all lifestyle and environmental factors that increase breast cancer risk are in fact only indirectly linked to breast cancer development and are not specifically causal. For example, while regular exercise, a healthy diet and maintaining a healthy weight do reduce risk, many women who exercise regularly, eat a healthy diet and maintain a healthy weight nevertheless are diagnosed with breast cancer. Of course for our overall health it's important to maintain a healthy lifestyle, but you are misleading women if you tell them that a healthy lifestyle will prevent the development of breast cancer. To some extent you are also 'blaming the victim' by implying that those of us who developed breast cancer perhaps caused it because of our lifestyle choices and by not taking a "preventive approach to cancer".
What "new innovations regarding breast cancer" are you referring to?
Wondering if your post was a one time thing to promote breast cancer awareness (as if those of us here don't already know about breast cancer), or if we will hear from you again.
Scrafgal, I only watched GMA for a few minutes yesterday, but what immediately turned me off (in addition to the overload of pink and the rah-rah approach) was that they had all these women with signs saying how many years they have been "thriving". The implication to me was that everyone with breast cancer thrives. I guess therefore if you have breast cancer and are not thriving, it means you are doing it wrong? I don't see the connection between breast cancer and thriving. Yes, many of us do thrive in our lives after our breast cancer diagnoses - this is called moving on with life. This is not unique to breast cancer but it's what you would hope most people are able to do after having a serious illness or life changing event. Some women thrive while going through breast cancer treatment, but that's probably not the majority. Many women have a difficult time, physically and/or emotionally, through treatment, and then have difficulty adjusting to life afterwards, because of the long-term side effects of their treatments. And of course, women with mets are never done with treatment. I found the focus on "thriving" to encompass the miscommunications and misunderstandings about breast cancer. Yes, hopefully we all thrive in our lives, but it might take a whole lot of work and time to get there, and it's likely despite having breast cancer rather than because of having breast cancer. For most breast cancer patients, there is this period between diagnosis and thriving that just isn't that much fun. I did not stay to watch the discussion so maybe that was discussed by the BCO members who were there - I hope so. Without that, it's just a message about how breast cancer is easy to get through and overcome. True for some, not true for many.
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Beesie, you wrote:
For example, while regular exercise, a healthy diet and maintaining a healthy weight do reduce risk, many women who exercise regularly, eat a healthy diet and maintain a healthy weight nevertheless are diagnosed with breast cancer.
Were you introducing me?
Because yeah, that's me all the way down to the dx!0 -
Thank you, Beesie! You are not a person who never lets the facts get in the way of a good story! I find your fact based, well thought out and articulate posts to be very helpful and thought provoking.
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I agree, Beesie, but don't think that my points were inconsistent with the points you are making. Could someone interpret things incorrectly from brief viewing of a single television show. Yes. However, the positive outcomes that I hypothesized are also possible as a result of such media attention. So, I feel no shame in feeling great about being alive and saying so. To your point, I worked as hard as anyone through that in-between period to feel this way. The fact that some will never end treatment and die from this disease should not silence me or others from giving hope to those whom might need it or benefit from it. As I suggested, those with MBC have a legitimate gripe about lack of attention in media and from researchers. However, I don't think that it is worthwhile to suggest that early-stage BC patients are not and have not suffered deeply. I don't need to try to compare the depth of suffering across types of breast cancer or other cancers. Knowing my own pain and progress is sufficient justification for me to celebrate where I am now vs. a couple of years ago. As I suggested, communication and clarification of understated points is something that we could all add to these conversations...if only we participate in those conversations.
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And, as for being healthy before BC...that was me! So, I know that there is no secret sauce to guarantee that we can avoid it! For goodness sakes, I was doing chemo next to a professional nutritionist, non-smoker, non-drinker, yoga-doing mother of 3 kids under 30 years old,who was in disbelief that she got BC!
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Me too. Nothing irritates me more than the healthy weight and exercise and proper eating will greatly reduce your risk. I was in excellent shape and have no family history or carry any known genes. I got it.
Until real knowledge is out there on why we get this and how to prevent it I think they should just STOP it.
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Totally in agreement with all of that. Unfortunately (...or fortunately, depending on how you look at it, I guess), there are studies out there that support that information re: exercise and diet. So, while I think it sucks that it makes it look like you have any control over getting this disease, if there is any truth to the research, then we shouldn't oppose advertising it...maybe just framing it differently? I don't know. I'm in the public health field and it makes me cringe to hold back on messages that encourage people to exercise and eat healthy. I think the messaging just needs to show both sides - yes all of this can reduce your risk, but some people get it anyway? Ugh, that's so not going to inspire people to lead healthy lifestyles, lol.
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Agree, Meow...not that I am perfect, but I already literally did everything that was recommended and have no genetic link to any cancers. The only good thing is (and admittedly, I am the glass half full person that people love to hate), most of the recommendations would have other general health benefits anyway...I do feel sorry for the people who started getting healthy JUST to avoid cancer. They feel duped when they get cancer! I was being healthy to avoid heart disease, which runs in my family. I never thought that I would get cancer.
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Yeah I don't live this lifestyle to avoid cancer (good thing, since that didn't work!). I do it because I feel good that way, I like to run and I like to go as fast as I can so staying fit and thin helps me.
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Scrafgal & Beesie, you both articulate your points of view so well that I can i understand where both of you are coming from with your differing perspectives. So I have to agree with both of you!
Yesterday I heard diet and exercise as being framed “How diet and exercise can help *reduce your risk* of breast cancer." Not saying prevention. I think some media is understanding the nuances involved in how the disease is presented to the public.
It varies, tho. Some news shows will say reduce risk and then some celebrity on a talk show may say diet and exercise preventsbc. It matters where people get their information.
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Bessie I was at GMA yesterday , and it really was so nice to meet other BCO members, we went out for breakfast later thanks to BCO and got to hear each other’s stories and what we’ve all been through, it was so good to meet these strong women. I had a sign 1 year thriver, today is one year since my Dx, and what an awful year it’s been. My lows during chemo when I wanted to give up we’re truly bad, but women here helped me get through it. I’m still not fully recovered from everything,chemo, surgery, radiation, I’ll never be the same, but I’m here so in that way I’m thriving, or at least I’m trying to every day even when it’s hard. I don’t agree with all the pink for one month but some people like Robin Roberts who spoke of depression after treatment really are trying to help
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