I changed my mind about Pink awarness month-here's why:
I talked with two (2) VERY intelligent, business owners this past week. I was amazed with their take on breast cancer.
The first was a shop where I purchased a " save the ta tas" car magnet. Started a conversation with the owner who admitted that she had found a lump but was scared to do anything about it! She HAD discussed it with her doc who told her it was probably a cyst, but had not tested it in any way. The shop owner was scared to get a mammo or u/s. HUH????
I referred her to this site and encouraged her to become educated, of course re: no pain with cancer, smooth edges were no cancer, etc.
The next were another smart gal, late 50's. She (on Prempro for many years and planning to stay that way) and her friends were concerned about their girlfriend who was "aging" rapidly--felt that this friend needed to go on hormone therapy to prevent "early aging". They felt (this included a couple of nurses) that since she's had ovaries and uterus out, that "all" she had to worry about was "just" breast cancer! HUH?????????
Okay, so --- breast cancer awarness month is a REAL need out there. Way more than I had ever imagined. We are living it here, ladies, and have no idea how ignorant those out in the rest of the world really are.
So=haul out those pink things and get out every message possible. Start mashing those boobs and lets get more women educated about this disease thats killing off thousands of us each year.
Comments
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Dottie---Brilliant! OK, I'm a believer!
I wore my pink ribbon pin for 2 years after dx.And regaled any nearby female with my tale, like the ancient mariner.Because yes, I believe we need bc awareness.And I know I was very unaware, and ignorant before dx.
And I agree that the most women who are educated about bc are here at this site:AFTER we have been dx.
And I agree that we need to do better.
I fear the "unstricken" women may still pay no attention.
Sort of like the 2 examples you gave.Appalling.
But I know such people are out there in droves.
When I meet such people and tell my story, what do you think upsets them most?
Hair loss.
It amuses me.Because when I was dx and realized I was sick enough to need chemo, hair loss was NOT tops on my horror list.Being bald as an egg didnt bother me anywhere near the way being a candidate for death did!
Love to you, thanks, and I'm with you.
j
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Seriously hate to admit this, but I was previously one of those "unstricken" women that paid no attention to all of the "pink", and was worried most about hair loss when dx'd. I didn't want any attention drawn to me and hair loss is so very obvious. I knew early on that there would never be any HRT for me, but was still in "denial land" thinking that BC was an "easy" cancer, until it struck me a decade earlier than my relatives. Don't get me wrong, thus far my rollercoaster ride has been a "kiddy land" one compared to many of my sisters here, but cancer is cancer is cancer (added the third because Gina always makes things sound better
), and none of it is pretty.Now that I "know" the truth, it sure isn't about the hair or the boobs, it is about early detection and being proactive, which thank goodness, I have been.
Dottie - I will work on getting the message out there. Thanks for the post.
lini
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Unfortunately I know too many women who are afraid of mammos, don't do self exams, think BC can't happen to them. I had one quote me yesterday 40% have family history. I said No, try less than 20%.
The education is very important. I have found even the handfull of ladies here are work who were diagnosed, don't no shit about there pathology status. Her2, ER/PR. I am amazed.
Janis
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This is what BC awareness SHOULD be about.
WE should be making other people aware with our real life stories. Not some marketing brochure or TV spot where the anchorette talks about BC but has no personal connection to it.
I think we need to have legions of us telling our tales to help our sisters who don't know this stuff.
I think you girls are brilliant!
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I think the one-on-one is what's important. I guess if all those pink ribbons make it easier to bring the subject up then they're OK.
I do have to say that I don't fault people who don't know the details of their pathology. It's not the way most of us here are, but for a good number of people it's the way they cope. I believe the psych term is "blunters" and they're the ones who would rather do ANYTHING but think about their illness. The other type (can't remember the term for them) has to have their dead cold fingers pried off their keyboards from googling every little thing.
My husband is a "blunter" and I have to say that he's happier that way. He goes to the Dr., they talk, and that's it. He gets his scan reports in the mail to take to his other doctor, and he never even opens them -- so figure!
Right now he's got something that ought to be treated in a trial, so he's having the look and them and decide, and it's really hard for him.
So I"ll say a word in favor of being tolerant of those who aren't "into" the whole disease thing, that's just the way they are and they're happier being that way. If it's not about being happy then what is it about?
Lucky for hubby, he's got me and I'll think about all those blades-of-grass.
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I was dumb about breast cancer before dx. Thought it was an "easy" cancer. How stupid!
Thought I'd NEVER get bc. Had no family history. When I left after my mammo and/or ultrasound and found out there was no bc found I felt very comfortable with that. Well, mammo didn't find bc.
I too took prempro, but not for "anti-aging." Where in the hell did anyone get the idea that prempro would stop aging. Have they not heard that it can cause dementia, heart problems and that's not counting bc? I got off the stuff as soon as the "bad" report came from the trial. It was bad enough that the trial was haulted!
I have no problem with the "pink" stuff. Many women got very upset about the, if I were your sister I would tell you that bc can come back. Why? I believe once we're diagnosed we know that. However, most other ignorant people like myself before dx didn't know. And if a newly dxd woman hears that the worst that can happen is she'll get anxious (just like us), and talk to her onc about it. It's scary, but it's true. On the other hand many women get angry when our treatment is compared to a walk in the park.
I think I'll go out and buy a new magnet for my car, wear my pin (if I can find it or will buy another one), and hope it will bring up the topic of bc to some woman so I can share my story.
Thanks Dottie for reminding us that other women who cross our paths need a little educating.
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Thanks, Dottie. I guess you're right....we're here living this disease, but for the seemingly healthy public, it's just something that happens to someone else. I'm glad that you raised my awareness today!
~Marin
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Welcome to the other side!!!!!!!! This month is a great opportunity to reach out to people on both a large scale and small scale basis.
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We are the 'poster children' for breast cancer. we must educate the healthy public about what cancer can do and methods of early detection. Even if we don't like the 'Pink Ribbon campaign'.
Sheila
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I imagine all the frilly pink stuff makes people think bc might be "easy", but once we're on this board we know it's survival but also a killer. I wear my pink pin outlined in gold during october when I remember. I sometimes wish it were outlined in black as a reminder that it's survivable, but also can be deadly. I'm not sure all the pink is taken that seriously by the uneducated or uninitiated. As Dotti and others point out, we sure can help educate.
I had my 3 years out mammo today--I'm good to go!
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The early detection thing is a bad joke for people like me. So far breast x-rays have given me a false positive on one side, and missed 3 tumors on the other side. They don't work for 20-30% of women. Period. If you have dense breasts they are simply a waste of time at best and a false reassurance. Now I tell everyone I meet about that side of the story.
The breast industry pretends that if you get a clean breast x-ray you are ok. Could not be farther from the truth for me.
The other issue I have with the early detection mantra is, how about cleaning up the causes such as the environmental toxins that we eat and breathe every day? I would like to see more talk about the prevention so the "early" detection didn't have to happen.
Joanne
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Joanne,
I'm so sorry that the usual detection methods failed you. And I agree with cleaning up the toxins in our environment.
I just had my 3-years-out mammo yesterday and the first one that was digital. Wow, what a difference in clarity. They say the digital will help with dense breasts and from what I saw there's vast improvement.(I looked at my old films of last year and the digital ones this year and there's no comparison.) I know many recommend the digital for dense breasts. The bottom of every mammo report I've ever gotten states there's a 10% error rate--comes with the territory, nothing's perfect--and the mammo result needs to be confirmed with clinical breast exam. Unfortunately, both can fail.
There is something in the American environment or diet that must be predisposing us. On bc.org main page is a research report--I haven't read it yet--that states young Asian (or Chinese?) women are now showing increased incidence of breast cancer.
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I had a digital mammo. It did not pick up my 8.5cm tumor. I don't have much faith in mammos for premenopausal women.
Bugs
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I also had a digital mammo - missed 3 tumors in 1 quadrant.
I understand their rate of false negatives is 20-30%. MRIs are much more sensitive.
The biggest problem with breast x-rays is they give a false reassurance to women like me who wasted their time for 15 years getting them. Just tell me they show nothing - just do an ultrasound if that is what it takes. I am postmenopausal and not one radiologist ever suggested an alternate test. They also failed me.
Joanne
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Joanne and Bugs, I know exactly how you feel. I walked away feeling reassured that my dense breasts were just fine. I even had two or three ultrasounds. They say this stuff's been growing for years. Why then didn't the US find it.
MRIs? After my neoadjuvant chemo I had an MRI on my breast. It showed how much the tumor had shrunk. However, it did not pick up the 1 cm tumor in a different quadrant of my breast. It was there before chemo..caught on the PET/CT scan. Therefore, instead of opting for a lumpectomy (not know if the cancer was still there) I said take it off.
I go to Duke. From what I understand they are not doing MRIs because they say too many false positives, it still can miss a cancer. But I say, do the mammo AND MRI.
Shirley
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Speaking of pink...I went for the annual mammo today. I moved out of Houston a year ago and have slowly been transferring my medical to this lovely small town. There is a hospital here and they do mammos there. The hallway was pink, the dressing room was pink with pink seating and pink bags in which to store your purse and clothing. The cape you change into was pink, the mammo machine had pink trim. The nurses wore pink scrubs, the pens were pink, the tablets were pink and the forms that were filled out were pink.
I realized I had worn a pink and white striped blouse...lol! It was truly a pink day!
What I loved about the service here was this, as a person who already had breast cancer they did more mammo slides and the radiologist read ALL mammos on the spot! I was very impressed!
Mine came back all clear and all in all it made my day! Albeit my pink day!
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Layne, I definitely agree that women should have mammo even though they have dense breasts. I have A dense breast now.
I go to Duke and they too read the x-rays right then and there. So, I always (or thought) knew the answer before I left. Then I'd go see my gyn.At the radiology place I had my bone density done and an MRI they use CAD also. I don't know if Duke does. I'll have to ask that question.
I'm glad they found your cancer early.
Shirley
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If breast x-rays worked for dense breasts I would be happy to get them. They do not. I have had cancer in a dense breast which they missed even as they biopsied a non-cancer in the opposite breast. Let's face facts - they fail women with dense breasts, they are 50 yr old technology. Give me a couple false positives rather than tests that miss 3 cancers for years and years. They suck! They are the biggest con of american women and gave me a false sense of security. I recently told my surgeon's secretary I did not want one, how about an MRI and ultrasound, anything with a remote chance of working. THEY HAVE FAILED ME MISERABLY! MY TETE WAS CUT OFF DUE TO THEIR FAILURES.
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Great points everyone! Joanne_elizabeth, I have to agree with you. I have dense breasts. DCIS wasn't picked up by regular mammos until it had spread throughout my breast - even though I was being screened every 12 months. I am thankful that I had no invasion but I still lost my breast. It would have been nice to have found it when it was a fraction of the size it was! Now I have to decide whether to ask for a referral to a larger clinic in Sydney to have digital and maybe MRI. Is that being over the top?
I have conflicting opinions regarding the pink month of October. On the one hand, I wonder if breast cancer is a bit of an "industry" and I hope all the funds generated by pink electrical gadgets, pink soap and pink planes end up in the right hands and is used in the most beneficial and efficient way. On the other, no matter what might be happening to the funds, I still think I should talk to people about my experience - the good things and the bad things. Eg - Good: it was found before it became invasive. Bad: it was found too late to save my breast. But then - this might have a counterproductive reaction. Women might think that it's pointless going for regular mammograms if they don't have a high success rate in detecting bc. And will they be they be treated as though they are hypochondriacs if they demand more thorough screening?
gb
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So sorry Joanne-elizabeth! Loosing a breast is so traumatic, especially when you were doing what was recommended and testing failure occurred.
One paradox, mammograms can't see through dense breast tissue, and doctors don't always recommend the next step up in testing (MRI, ultrasound, scinti-tomograpy), and the same density itself reflects a dramatic increase in breast cancer risk (?reflection of high hormones, or more susceptible breast background tissue, called stroma, or other).
For dense breasts, a different test than mammogram should be automatically added nowadays, imo.
On Pink month, seems people are somewhat saturated, fund raising is a tad harder, friends not connecting with October and breast mammogram, etc...
Maybe it's time to change the approach, like many here have suggested, more to BC IS A CHRONIC NATIONAL LURKER AND KILLER, every day of the year.
Nationally highlight the needs of advanced-disease patients, by way of shining the limelight on real daily struggles, need for coordinated, single place care an d treatment if possible (some movement that what with comprehensive cancer centers, but some insurance problems on payment) and more money to NCI, and maybe OPEN TRIALS to newer drugs sooner etc. A mind-frame shift in breast cancer month to breast cancer day to day....
Perhaps by emphasizing the day to day reality of the disease, women and men may see more clearly that prevention and early detection work greatly to their benefit and doctors be reminded that every step in a women's care must be done correctly and with diligence to reduce errors. Owning one's body and tests must also be the recommended rule, because others aren't us. Helping those who struggle with tests and results is so generous....
Just my thoughts, thanks.
Tender -
Do any of you remember the poster of a huge haystack and the the saying "Breast Cancer is like finding a needle in a haystack", or something like that? I feel fortunate that despite my dense dense breasts that my yearly mammos were checked vigiliantly from year to year and a minor change in calcifications were noted and followed up by a digital mammo, then a stereotactic biopsy, then an excisional biopsy (lumpectomy), and eventually the removal of both my breasts for, yes, a 4 mm ILC tumor on my left side. My right side had areas of ADH and an area of LCIS, never suspected or picked up my mammogram. Sometimes it's just a crapshoot, how sad at as it might seem. You just never know what's lurking in there. That's why it's called the beast, so I still say if you've got breasts, get your mammo yearly, no matter.
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I think I will refuse any more breast x-rays. As I said they found a false positve and missed 3 tumors on the other side. They have successfully exposed me to needless radiation for 15 years however.
Lets face it, the insurance industry save too much money using mammograms instead of routine ultrasounds and possibly MRIs.
People, including one MD, are shocked when I told them that nothing showed up on my x-rays. This needs to be out in the public - the very high rate of missed cancers by mammograms. It is the biggest lie perpetrated on American women that they are safe with digital or other mammograms. If I had known how faulty they were trust me, I would gladly have paid for MRIs rather than go through this hell while I line the pockets of pharmaceuticals and doctors and hospitals and wonder how much this has cut my life short.
Forget the race for the cure and race for some prevention and at least a
screen that works.
joanne
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I guess I will add my 2 cents about mammo's etc. I have (had) been getting regular yearly mammo's, ultrasounds and biopsies when needed. I was also a chick with very dense breast tissue. I think I had regular exams for at least 12yrs before my breast cancer was finally found back in Dec/04. I was diagnosed with Mucinous Carcinoma, very rare and thankfully not very agressive. The downside to all this is...it was a very large tumor, 5.5cm x4.8cm.
The surgeon told me this...This is such a slow growing type of cancer, it would have taken it about 8-10yrs to have reached this size. I was in shock! I had a steriotactic core biopsy in that exact spot 1 year prior and the results were benign changes. So....moral to the story....no test is perfect or fail safe but they are better than doing nothing at all. I was pissed when I heard that the cancer had most likely been there through all of my mammo's (but fortunately it was found eventually)
If pink gets the message out, I am all for it. (I am not the pinkest girl in the world but a little bit pink)
best wishes, Tina
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Losing my breast was not the worse thing that's happened to me. I don't like it, but I can deal with it. And, I am now 61, dxd at 58.
The worse thing with the diagnostic tool used for me (mammo) is that it didn't find it, it had already spread to my nodes WITH extranodal extension. I had very agressive treatment. I trusted my mammos and clinical exam and ultrasound when necessary.
Yep, we can die from anything from heart problems to getting hit by a bus to other diseases. We intellectually know that. However, I didn't sit around worrying about it. I don't worry everyday that bc is going to metastasize. But it's there in the back of my mind. I'm proud of myself when I do something that will last beyond today and not think about bc coming back. But then there's those days I think, why am I doing this. It may come back. Like having loads of expensive dental work done.
Medicine is not a perfect science. I will continue having my mammos. At Duke they are not doing MRIs for us who think we need them. However, I could always have my pcp order one (I suppose).
I believe this disease as robbed me from ever being "normal" again. Don't get me wrong, I don't think negative thoughts all the time, but there's those times....and I can't trust the mammo to find my cancer therefore, when I get one I really don't worry. I walk out of the clinic not really feeling any better than when I walked in.
Oh, we're suppsed to be talking about "pink."
I like pink. However, I really don't think it matters to the general public who has never known or been effected by this disease. It didn't me before bc.Okay, enough rambling.
Shirley
Joanne, I'm in the same boat as you and many other women are too. My onc said that mammos miss 40% of cancers. Don't know how true this is. However, as angry as you are I would encourage you to get that mammo and any other diagnostic test. I hate having MRIs, but I may just talk to my pcp to see if he'll order one if my onc at Duke won't. Sad, isn't it?
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Shirley,
I have read mammograms miss 20-30% of cancers. That is quite high. I did not know this fact until it was too late. They never advertise how faulty these tests are. Radiologists know this - lets at least get the truth out there. Had I known I would have gladly paid for MRIs every year. The biggest problem as I see it is the ACS pretends if you get these tests you are safe. Huh ! I am getting another MRI in Nov. I also hate these tests but at least they find stuff. I am 55 and have been irradiated for 15 yrs for nothing, nada, zilch !
I agree about the normal - normal for me now is if I don't think about it for 5 minutes (when my son is losing a soccer game) or have a day I am not running for a doctor appt or a test. They have stolen our sense of health for a long time if not forever. We can put people on the moon, but can't come up with a better screen? I don't believe it.
Joanne
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Joanne, I'm afraid you will NEVER see any "advertisement" that mammos do not find all bc. There are different kinds of bc and some that are very difficult to find. Then there's us with the dense breasts. I believe if they put the word out many women may stop having them. I suppose I could parade up and down a busy highway holding a sign announcing DO NOT TRUST YOUR MAMMOGRAM! LOL
My daughter is an attorney. Therefore, she wanted me to get my mammos. You know the mind set up attorneys. I haven't and I won't. There's not one darn thing I can change. I thought I was doing what I was supposed to do.
I will be seeing my gyn next month (haven't seen him since dx...too busy..then forgot). I will talk with him about MRIs. He too is from Duke. Will be interesting to hear his take on this subject.
Shirley
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HI Shirley,
I am not thinking advertising, I am thinking in the news, in women's magazines, real numbers about the efficacy and lack of efficacy of these antiquated tests.
Too many women are lulled into a false sense of security by clear mammograms. Better tests exist such as ultrasounds and MRIs, but it is just recently they are being recommended for high risk women. Who isn't a high risk woman is my question?
Perhaps the media needs to be educating women to demand MRIs. I know my surgeon just tried to order an x-ray for me and I asked for an MRI. Isn't it sad you have to have your breast chopped off before you know to do this?
Joanne
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Actually whenever I read get your breast x-rays (how did they come up with the cutesy mammogram name?) in magazines or the paper, I am sure to email or write the author asking that they advertise the false negative rate and urge them to tell their readers to seek alternate methods if their breasts are dense.
I have contacted magazines, WebMD and newspapers to try to start to set the record straight.
Joanne
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Joanne, the problem is that many oncs do not see the reaon for doing MRIs. They themselves think they're not "dependable." Well, neither is the mammo.
I was listening to Dr. Rosenfeld on Fox news one Sunday morning. He was telling women to have MRIs if they had a strong family history or dense breast. He even went as far to say that if you had had breast cancer to immediately get an MRI on the other breast. That was when the news first came out about the use of MRIs plus mammos.
Shirley
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I was diligent about having my mammos and due to dense breasts and cysts I usually had an ultrasound at the same time. Also had several fine needle biopsies of cysts. Six months after a "normal" mammo/us I was diagnosed. Turned out to be stage IIIC, borderline stage 4 and grade 3...very aggressive. No family history...so it was a big shock. Also, I didn't feel a lump...just felt a bit sore and thought it was another cyst since I believed the myth that if you had pain it wasn't cancer. I think testing is important but you can't really count on detection.
Liz
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