The dumbest things people have said to you/about you
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My sister (in Ontario) had the BRCA genes test following her ovarian dx. and received the results about 5 months later. Her criteria included mother (BC), sister (ovarian) and paternal aunt (uterine). It was done prior to my dx and was negative. She was worried for her daughter and grand-daughters. Not surprising that it was neg as we are not Ashkenazi Jews, nor do we fall into any of the other groups in which the genes seem more common.
But I certainly believe that we probably all share a gene or two which has yet to be discovered. And yes, I know several researchers who are diligently working on finding them. The genetics of BC (and other cancers) is still in its infancy.
I agree with Barbe -- teach breast health and BSE in high schools, and give your donation dollars to organizations which provide critically needed research grants to scientists. I support the Canadian Breast Cancer Foundation, which has funded many such projects.
BTW my one sister is a 15-year survivor and the other one is a 6-year survivor!
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Stopped by McDonalds for some lunch the other day- got to the pickup window and the lady told me to "Have a Happy Mother's Day". Even if I didn't have cancer I don't have any kids.
Is it expected that every female on the planet is a mother??
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I used to bug me re. Happy Mother's Day since I don't have kids and even more so since I wanted some. But I think of me being a Mom to my cats. And I have a Mom so I extrapolate it to her.
It's like I'm always called Mrs... -- why not be safe and just say Ms. It's kinda interesting --- all my medical people call me (and everyone) Mrs Blah-blah and in the US it was Elizabeth. My onc here refers to himself by his first name though... etiquette and manners, sigh...
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Barb and Lindasa are right. Although mammos are useful I think people get a false sense of security from them. In England women only get a mammo every three years from age 50. And now I've been diagnosed they need to be more vigilant. We need to be pro-active with BSEs and not just rely on mammos. If every mother made sure her daughter knows about BSEs and it is taught in "health" at high school, then all that money spent on awareness can be put to better use.
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Gill
In NZ mammograms are free every two years for women 45 - 70 but my onc said to tell everyone I know that they should make sure they have an annual screening as early detection is the key. I have found however, even though they know I have had BC, that you can warn women until you are blue in the face but some just don't want to know. BSE is meant to be taught in high schools here as part of the health curriculum but teenagers are notorious for thinking they are invincible and the possibility of getting it must seem so far in the future that I wonder if the message will get through or stick.
Konakat
All my doctors use my first name and I use theirs. I like it because it personalises me - rather than me being a generic patient.
Enjoy your day ladies
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notself.....both Komen is about 75% and the BCRF about 75-80% of the monies go to the cause...they are both highly rated by the group that rates charities (can't think of the name).
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I had the BRCA testing when I was first Dx and I had my results within weeks (not months). Yes the testing was expensive, but I started with the multi-site 3 which is much more affordable. Those results were negative, so I didn't do any other testing, per my onc's and genetic counselor's recommendation.
Kittycat...I also volunteer for my local Komen affiliate. They just gave out close to 3 million in grants for 2010-2011 to several non-profits.....these organizations provide, free or low cost mammos, meals etc....I would have to go back and look at the list to check more details. Many of the goody bags that Komen gives out are donate free of charge to Komen. The local RFTC raises over 60K annually and 80% of the money raised goes to the cause. I chose to support Komen with my time and my money.
We all make choices on who and where we donate our money and time. We each need to do what is right for us...
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Heavens, I don't think you'd be able to talk about breasts in Utah public schools. You can't even mention those other topics here Barbe. Let's avoid it, is this state's idea of education.
Leah--is your sassy Raquel wig like mine? I'm Voltage. I get lots of comments about my cute hairstyle when I wear it, and I just smile and say thanks.
I was out at dog shows the last few days among friends, and am a bit weary of the "but the prognosis is good, right?" I don't want to explain the uncertainties of triple negative to everyone. They are well-meaning, but since they don't know the answer, I wish they wouldn't ask.
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Rae - you also are right - kids do think they are invinvible. Although English, I have been living in the States for 25+ years. However over the 2008-09 winter here, DH and I spent almost 5 months in NZ and got to skip winter altogether! Where in NZ are you?
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Retrievermom - your comment about state education having its head in the sand brings to mind an example of the opposite here - one day my twin girls who were about 15 at the time, came home giggling like crazy and when I asked what was so funny they said they had been trying to put condoms on bananas in health that morning so they would know what to do when the time came
I was speechless for a while after that - things had definitely moved on from when I had health education!!!! Some private schools here choose not to cover certain subjects though mainly because of religious convictions ie evolution and sex education.The puppy in your avatar looks sooooo cute. Do you show dogs? My BIL and his wife are right into dogs and shows and they are invited to USA to judge from time to time. They breed and judge English pointers and red setters.
Gill - I'm glad you got to visit our beautiful country. Hope you had a wonderful time and that we Kiwis welcomed you wherever you went. I am about 15 mins north of Tauranga on the way to Katikati. A country area but being so close to the city we have the best of both worlds.
Rae
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Last night I overheard DH telling a friend that I am "100% cured". I was so happy to hear that! now I can stop worrying...
I had the BRCA gene test done and my insurance paid for it. It was negative, but I wanted to know because it would have affected my treatment decisions. Not sure I would have been okay with waiting a year for results.
I understand that the courts rejected the "patent" that Myriad held on this test as Kittycat mentioned in an earlier post. Hopefully this will allow for some healthy competition in both R&D and pricing. In my mother's family 3 out of 6 sisters had BC, as do I, but I did not have the BRCA gene change so I think there are other genetic patterns that have not yet been identified. My SIL passed 3 years ago from ovarian cancer so I am really concerned for my daughters. Maybe some day BC will be preventable or curable. The more research the better -- I just wish more money went to research from the profits corporations are enjoying using the pink ribbon.
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Somebody wrote that the term, "breast cancer" is an umbrella term. That may be why the treatment is so hit or miss. We may have 300 different diseases that are breast cancer. Does that mean 300 different cures? Serious question.
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That is a sobering thought mathteacher. We know there are are several different types of BC and within those types there are different subtypes and there are many factors that will impact the treatment regime and the success of treatment so I guess 'umbrella term' is accurate and it could be said that everyone who gets BC does have a unique disease. It's a bit like fingerprints - we all have them and they are identifiable as fingerprints but no two are ever the same so I would think that no two cases of BC are ever the same even if it looks that way on paper.
Does anyone know why BC is never declared 'cured' even if you live for another 40 years after treatment? Why are we just NED for the rest of our lives? Other cancers are declared 'cured' after a time aren't they?
Rae
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Rae, I'm not sure that any cancer is ever "cured," even after years of NED.
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DH and I were at Walmart today. The cashier asked my husband if we were intimate enough that he made me a mother. He answered yes we have 4 kids and she wished me Happy Mother's Day. After we left I told DH that the cashier was so dumb phrasing it that way that he should have told her we were very intimate but had no kids or that he's never slept with me and he couldn't understand why I had a dozen kids. LOL
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Well, flyingdutchess, I guess you've shown all of us that people can be real dumb about stuff that has nothing to do with cancer.
Leah
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Why should we know of everyone who has breast cancer. My friend said, "Do you know Jane from the health club". I said, "No, I haven't met her. We probably work out at different times. Why?" "
"Because she has breast cancer, too." OK...let's line up all the women in my town who have breast cancer so we can all meet and talk about our disease!My boss had a mammogram that showed a shadow so they called her back to do another more extensive mammogram. I was the second person she talked to...after calling her husband. She came up to my office because she was scared it was cancer. I was helpful and reassured her that it may not be anything. They are just making sure, etc... I was glad that she could come to me to vent, etc.. But on the other hand, if I did not have BC she would not have shared with me at all. The token BC person at my work.
I have had the comments listed already: you are so positive, you are taking this very well, well you get to get perky boobs, good your children are older not little ones (which is true---but it is hard on children of any age), but you are so healthy, etc...
A friend sent a poem that said once you have breast cancer it never goes away. The cells are always in your body. The rest of the poem was nice and supportive. The sentences that said the cancer cells never go away was very disturbing. I don't think she even thought about what that meant to a person with bc. UGH...
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goodvibesonly: I know what you mean about the "bc person" since it seems once people know they tell you about someone else who had it, has it, and what happened to them. You don't want to know!!!!
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Jean -- your boss probably admires and respects you for how you coped with your own dx. I will never forget when one of my friends told me about her dx -- I was really upset for her but she was very calm and reassuring and she had such a good attitude throughout treatment. Just remembering that helped me cope with my dx. I know several women who have had bc and I chose to confide in those who had a good attitude. I would be honored if someone thought of me that way.
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The dumbest thing ever said to me was when a high school friend asked me "which breast is it?" I just wondered what difference does it make? And what would she do with that knowledge anyway?
Four years later she came up to me at our class reunion and said," you sure are puffy. Do you still have cancer?"
I told her some meds cause puffiness, that I feel well and then walked away. These are insensitive things to say. And anyone can get breast cancer, so she may have to face the breast cancer diagnosis some day.
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Re: BC charities, there is a site at
http://www.thebreastcancersite.com/clickToGive/home.faces?siteId=2
where you can click daily. Sponsors put their ads on site in exchange for donating a certain amount for each click daily. !00% of sponsor money goes to fund low-cost or free mammograms. There are clear links where you can see the stats: how many clicks, how much money was raised, etc. You don't have to even look at the ads. Just bookmark the site so you can come back daily, click on the big button and leave 10 seconds later. The sponsors still pay.
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riley702
I click first thing every day when I start up my computer. As you say, just click, wait for the 'thank you for your click' screen and leave. I started doing it before dx because a FW about it came into my inbox and I thought it was an easy way to help.
Rae
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Retrievermom - that's funny you mentioned not speaking of breasts in Utah. That's where Myriad (the company that does the BRCA test) is located. LOL.
My first dx was on an ultrasound. My second dx was found by myself. You just never know! Not to be paranoid, but women should know their breasts!
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Retrievermom - I am also triple negative - oh lucky us!!! Sucks!
So, I have some really dumb comments made today. Astorm told me I should post the one about my BS here - it's a doosie... I go in to have my drain removed today. My BS tells me that he doesn't have my path report yet. I told him my onco got the results from the pathologist over the phone, while I was in his office Friday. My nodes and margins were clear. So, my BS tells me that normally he gets the results before the onco and reviews them yada yada yada. He doesn't understand how my onco got the results, when he can't get a hold of anyone in pathology. Then, he tells me he's been "burned in the past... I don't want to rain on your parade or anything, but I will believe the results when I see them in person. I'm sure they're okay, but I'm just saying..." WHAT??? My husband said to me over the phone "What a d*ck" How nice of him to put me back into "worry about path results" state. Luckily I had taken a percoset and was feeling rather numb at the moment. I think his ego was more bruised than anything else. My onco pulled out his I Phone and called pathology while in the room with me.
Then I got another doosie... I got 3 cards from 3 different women at work to support me and said they found out I had breast cancer. I was in a training class last year and all 3 were from that class. None of them socialize with each other and they're all in different parts of the country. I sent them each an email to thank them. Then asked how they knew I had bc. Well, come to find out, our trainer (who I wouldn't tell last year what was wrong with me) sent an email to the entire training class (25-30 people all over the country) stating that I had breast cancer and that everyone should send me a note of encouragement. Then, I went back and read the email from the bottom up and he had an email correspondence with management about me, my surgeries, my sister's diagnosies, etc. THIS WAS ALL FORWARDED TO THE GROUP!!!! I'm sure his gesture was meant to be good, but I FEEL SO VIOLATED!!! The best part is that the training we had was on going into management. He must have been asleep when HR did their presentation.
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kittycat
I am sorry that happened. I'm sure he meant well but that doesn't excuse his carelessness. I am sure everyone who received that email will only be wishing the best for you though.
Gail
Lol, maybe people will start complimenting your DH on being 'positive' instead of you!
Rae
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kittykat--forward that e-mail with a note about how you feel to HR. That is a clear violation of your privacy, of course you feel violated! It is also a clear violation of even the most lax HR policy regarding personal information, not to mention that work e-mail is considered public unless it's encrypted within the system. I know the person intended to be helpful, but REALLY! The nerve!
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kittycat, I think a complaint to management is in order. They had no business telling the traineer without your permission, and he certainly shouldn't have sent the entire correspondence to the group. Of course you feel violated!
Leah
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And if he/she's done it to you he/she will do it to someone else. What if that 'someone else' has HIV? The whole company is at risk for a VERY expensive law suit.
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Oh, Kittycat, that was awful, and I agree, a violation of your right to privacy that should be reported. We just had our annual training where I work and I may post our lawyer to include that type of scenario in next year's training. I got blindsided at the dentist office yesterday. I don't like to discuss the particulars of my situation in a room full of strangers. The gal who does accounts is an old friend, but everyone in the waiting room? Sheesh.
Yes, the gene patent company is in Utah, and great BRCA research is being done at Huntsman, but woe to the teacher who brings up any subject related to sexuality or the fact that gay people exist.
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My manager sent a message back, just stating that I had surgery. I love my manager and don't want him to get in trouble. The way the email plays out, the timing was verycoincidental. I had a director ask me to interview for a management job. I told her I couldn't because I was dealing with some medical stuff (which was my hysterectomy). She assumed it was about breast cancer. She had a conversation with the trainer and told him I had breast cancer. He asked my manager how I was doing, how he heard I had bc yada yada yada. My manager replied that I was doing okay and was recovering from surgery. My manager fell into the trap because he probably didn't know the details of it all. The trainer asked him for my home address, so HE could send me a note. Well, HE didn't send me a note, but a few of the women in our class did.
I'm sure everyone had good intentions, but I'm a little shocked that this went out. I am going to talk to my manager today about this. My company has very strict HR policies. Funny thing is that our VP of HR is in town today!
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