The dumbest things people have said to you/about you
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iHEARTu ..WOW! That was REALLY inappropriate! But I have to tell you all that I have a young friend who has just had a BMX followed by reconstruction and she's struggling to find something positive about the entire experience. So a week or two ago SHE told me that not having to ever wear a bra again would probably be the only positive she could come up with. I applauded that from her since SHE is the one having to deal with it all. Coming from whomever said it to iHEARTu is just plain ignorant.
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Bon, copy some of these quotes to your "friend" to educate her on what this site has taught you and what we wish people would say! Wish I had done so to the friend who I let know that she hurt my feelings and she emailed that she didn't know what my little heart desired. Ex-friend or actually never a true friend.
http://community.breastcancer.org/forum/102/topic/750086?page=1
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Bon, I agree with your assessment of your friend's "looking for the good". When I was first dx and going through active treatment I would make myself feel better by telling myself "it's not the disease that's making me feel this way, it's just se's from the treatment" or else "so-and-so is in such a worse position than I am". However, if anyone had said any of those things to me I would have been hurt beyond belief.
I did have someone telling me (while I was going through rads) about people she knew who had gone through bc treatment and were fine now and she knew I would be too. I just smiled and said thank you, since it wasn't someone I was close to and she thought she was making me feel better. But, like Bon's friend, how did she know I would be fine? She's gonna give me a guarantee of no recurrence? Well, she couldn't, and here I am one year later with bone mets. So, Bon,you might want to tell your friend that it's very nice that she can say she"knows" you won't have a recurrence but, in reality, all you can do is hope and pray that you don't. And that's the real reason we all come here - we know the hopes and fears as no one else can.
I can't give anyone that reassurance either, but you all know that I pray you'll never have to deal with recurrence or mets.
Leah
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Granny- You are so right! Really, only those of us who have faced this disease will ever know the toll it takes on you emotionally. This entire website has been a God-send to me. I was told over and over again to stay off the internet when i was dx. None of my family or friends could understand how much the info and others personal experiences and insight has helped me through many dark hours! Information is power and all of us ARE sisters! Hugs to all of you!
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Bon- OK, I'm visualizing jagged-edged cliffs.......open manhole covers......and I'm throwing in a coyote with some TNT......HEY, it really works!!!
DiDel- Aw, thanks! You made my day!!!
grannydukes- So true about feeling what people say about our "sistas". Probably good we're all cyber friends, and don't know where any of these stupid people live, or there would be a whole lot of angry BC villagers with pitchforks!
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I know there is some really bad info on the 'net, but telling us to stay off the 'net is so NOT the way to go--they should teach us how to recognize a reputable site from a quack site, and they need to understand how valuable and helpful it is to 'talk' with other women in the same boat. What is the difference between these threads and a face-to-face support group, for instance, other than this is way more convenient and available 24/7? I often think that medical people are afraid of being shown to be behind the times, or just don't want to get into the harder conversations. It makes me FURIOUS! I would never have known about DIEP reconstruction if it weren't for this site. There are no PS's in Maine who do the procedure, and no BS, Med Onc, or Rad Onc who refers out of state for PS consultations. Thank God I found this site 3 years ago!
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Native Maine--you just reminded me of something.yea people said dumb things to me.you know what a lot of people told me...YOU ARE GETTING TOO INVOLVED WITH BCO...again ill say they dont have the slightest clue.If it wasnt for the sistas here i would still be with dr#1 who did everything ALL WRONG..A big huggggggggggggg to all of you.
K
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Ladies...I think we all have to become the ambassadors for this website and let everyone we meet know about www.breastcancer.org. I stumbled across it when looking for answers and I'm sure that it's how many of you came upon it, too.
Now I write an update of my 'conditon' to some 75 people who seem to want to know. And I never miss an opportunity to tell them how important www.breastcancer.org is to my physical and emotional wellbeing. I wouldn't know 75% of the info I really needed to know if I hadn't come to this website. My only regret is that I didn't find it sooner...like the day I was diagnosed. By the time I got here the surgery was done and I was faced with chemo and radiation. So by telling everyone maybe they will casually mention it to others and eventually someone who needs to get here will do so sooner rather than later.
When I meet new bc patients at the chemo center, this is the first thing I tell them about. Most have never been here before. But when I see them again,they usually say thank you. Maybe they don't post...but they read and learn.
I don't have time to drive to yet another appointment of any kind, so a local support group isn't going to fit into my schedule. But you are all here 24/7, from all over the world. This is the best information and support I can possibly receive. God Bless www.breastcancer.org! My next check for a charitable donation goes here. Think about doing the same when and if you can. Bon
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My Dr.'s also told me to not go to the internet. I know there is some bad info out there but this site has been very helpful. Actually my DH found it for me. I have never been one to go to a support group but enjoy the different threads of this wonderful group as a support system.
I also tell everyone I meet that either has already been diagnosed or recently diagnosed to come and visit. I just hope they stop by and at least take a peek.
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My surgeon pooh-poohed the internet as well...until I was diagnosed with Papillary Carcinoma and HE had to Google it! He presented me with 4 sheets of paper off a website when I ws in the green room outside of surgery!
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If it weren't for the web I would have never found out about nipple sparing MX. My first surgeon never even mentioned it existed to me because, as I found out later, she wasn't trained in the procedure (which still pisses me off). Had I listened to her my nipples would have ended up in a landfill somewhere. I fired her and found a new BS (who did my NSM) and she actually recommends this site to all of her new patients. Like Bon, I tell everyone about this site (even making them write it down) because you never know who they will pass it on to. This is the best support site out there because it runs 24/7, I don't need gas in my car to get to it and I can (and usually do) show up in my pajamas!
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I heartily concur. I've heard the "do you think you spend too much time on those boards?" from well-meaning friends, and couldn't disagree with them more. It's here that I've learned my SEs were SEs, and what might help lessen them. Although I've read of jaw-dropping comments on this thread, the come-backs have lifted my spirits on more than one occasion. My primary care doc's nurse has a very rare pre-cancerous condition, for which she had to have her colon removed, and she understood completely that in these online forums you have a worldwide support group.
Thanks to all of you.
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me too - it has been quite helpful to find how very not alone I was going through the whole thing. My twenty something son found the sent and sent the link to me early on.
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My MD said the same thing (stay off the internet,) and she went through a year of Herceptin. I have been the one to diagnose all of my nerve entrapment injuries via the.....(drum roll please) INTERNET and by speaking to fellow patients. I have fought many battles with MD's over the years, and I was right many times. Not because I am smarter, but because I took the time to educate myself. I took the time to empower myself as pain is a great motivator.
I am fully capable of conducting my own research, making my own list of questions and learning about my disease. This is just an easier way of going to the library in some cases. I had no clue about the nipple sparing surgery...because I foolishly followed my MD's advice to stay off the internet after getting diagnosed with BC. Now mine are at the bottom of a landfill (well put Kate!)
I expect my MD's to be open to new information, be up to date on the newest research, and to be able to tell ME something I don't know, or I have not learned on my own.
My BS didn't tell me about my triple negative status. I asked her in my appointment..."what is it?" Maybe my phrasing wasn't clear, maybe she was waiting for the Oncologist to break the cheery news. Well, I sorted it out on my own, on the internet, while holding my path report in my hand. Then my heart fell.
I think we are all intelligent, and we lift each other up in terms of general knowledge and up to date treatment options. Knowledge is power, and MD's need to spend a little more time surfing with their patients. Or just admit they don't know and be willing to "look it up." I know I learn something new everyday here, and then some.
Thanks for listening to my rant....but this is a topic very close to my heart.
Traci
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I love this site! I found out that most of my innermost feelings weren't something new. Others felt them too... hating the color pink, "you look good bald", or feeling incomplete. The more I read your experienes the more I understood that my feelings were shared with others. I felt better. Even though I don't say much or post it, I love you guys. Unknowingly, you helped me along this journey.
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Can't remember which doctor told me about brestcancer.org. My onco recommended NCCN which has a lot of technical information but no feedback from actual patients.
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So a woman I know on Facebook posted today saying that "there is no solid evidence that mammograms save lives. She said adding a annual mammogram to a careful physical examination of the breasts does not improve survival rates over just getting an exam done. And that the radiation from the mammogram will actually increase your chances of BC". WTF?!?! I wanted to reach through cyber space and bitch slap her. I thought it completely irresponsible on her part to post such a thing. Needless to say, I "de-friended" her on the spot.
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Just feel the need to add that my Breast Surgeon recommended BCO to me on the day I was dx. I had be seeing him for over a year "watching" my active breasts. He is one of a rare breed. He is super knowledgeable, kind, patient and very easy to talk with. He has never been condescending to me and appreciates a patient who is well informed. He was my third BS and none of the others possessed so much professionalism and confidence without arrogance. I feel so blessed to have him on MY medical team. He led me to a super PS who has most of the same qualities. If anyone in the Providence, RI area is searching for a top notch surgeon feel free to PM me for names. Believing in your Dr. makes this difficult process so much easier to navigate.
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Kate....Don't you wish that when you de-friended her, our virtual trap door would open up? Seems like the act of de-friending on Faceboook should not go unnoticed. It should have some drama associated with it. Like the sound of breaking glass or a door slamming shut.
What was her reason for the post? Why on earth would someone take Facebook space to post something like that? I remember reading that they weren't going to recommend annual mammos to women under 50 anymore. Well, take a long look at the ages of the women we communicate with every day on this website. There are so many under 50...heck even under 40, that it's mind numbing.
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My onc congratulated me on having annual mammograms and said I had given myself the best chance to beat this disease by finding it early. Here in NZ women aged 45 - 70 are entitled to a free biannual mammogram. It used to be 50 but statistics showed that the numbers of women under 50 being diagnosed were increasing and after many years of agitating by breast cancer groups the age was lowered about 4 years ago. My onc said an annual mammo 40 - 60 then biannual 60-70 would be better but we all understand that the govenment dollars can only go so far so I guess something is better than nothing.
kate33 - I was interested in nipple sparing bmx until my BS told me nipples were breast tissue and if I was going to have bmx to rid myself of breast tissue why would I keep my nipples? - seemed a reasonable arguement to me so they went but eeeeewwww - I hope they aren't buried at the bottom of a landfill!
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Bon- She has her own business teaching and selling holistic health products but takes it to the extreme. She actually told another friend of mine, who had late stage ovarian cancer, that she should quit chemo and just follow her regime of vitamins only.
raeinnz- Actually new research shows that NSM, when done by an experienced BS, has exactly the same rate of recurrence as regular MX. During surgery the BS will scrape the inside of the nipple and test it right then and there for cancer cells. If any are detected the nipples would be removed at that time. So leaving your nipples does not put you at any higher risk than leaving your skin which is now considered to be standard operating procedure when doing MX.
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kate33 - skin doesn't get breast cancer though, it gets skin cancer - recurrance occurs from breast cells that weren't removed at MX and nipples are large areas of breast tissue. Each to her own though, as it is with every decision we make about our treatment in trying to rid ourselves of BC.
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My friend's young niece made a comment on Facebook awhile back that people choose to have illnesses. She also said she was choosing a healthy life for her family by going organic/ vegan/ whatever. I sent her a message explaining how wrong she is and suggested that if she truely wanted her family to be healthy she would get rid of her car and move out of the town she lives in which is very industrial and over-populated. Then I unfriended her. I live in an eco-friendly, vegetarian-friendly, health conscious town and our incidence of bc is higher than the national average. Women need to understand that not being diagnosed (because you didn't get a mammogram) doesn't mean you will avoid the disease. People hear statistics and read what they want to hear into them. It's like the statistic for the 5-year survival rate -- bmx has the same survival rate as lumpectomy+radiation but they don't tell you how many patients of each group were in treatment again during that 5-year period (just how many were still alive). There is just no right or wrong answer that you can extract from a survey... we all have to look at the whole picture and decide what is best for us. My mother was diagnosed at 45, her sisters were younger. There is no way I was going to wait until I was 50 to get a mammogram. There are many of us who are not yet 50 years old and I resent our being deemed an "insiginificant" number by a survey. Ok, I'm preaching to the choir. Maybe I shouldn't have unfriended the girl... at least I could have kept an eye on her...0
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I guess your friend's young neice has some learning to do.
Before I got my 'suspicious mammogram' at age 51, I thought that the only women who get breast cancer are the women who ignore their lumps. And I'm a pharmacist. See what I knew.
Blaming the patient makes the neice feel like she is protected against cancer, but it does the patient no good.
People hear statistics and read what they want to hear into them. Hear, hear!
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A very dear friend suggested BCO to me when i told her a little bit of what DR#1 did to me.Had she not told me to go on here i could have been dead.THE SISTAS ARE THE BEST...DR#3 loves this site.To me that says she knows her stuff and not afraid...a SHE.
I love my sistas.God bless.
Another dumb thing people say is YOU ASK TOO MANY QUESTIONS. anyone get that one???
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I do feel fortunate that when I was dx I was given a huge notebook with information on a variety of topics, but it also included support and other resources, including this site. I don't know that I would have found the site without being directed first.
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AStorm, my niece is an organic farmer with her own place and doing extremely well. I do not adher to all that as much as I'd like (I love meat), but I did do BRAC testing and I am BRAC 2 positive. This is my sister's daughter. I am concerned about her as she does abide by doing all organic and she thinks she is immune to any of these problems. I pray this to be true, I wish no ill will or health on her, but I am concerned she, here sister and her mom do not take a serious look at their likelihood of getting this. No one is immune.
I agree. I give this website to everyone sitting in the onc office waiting room. It truly saved my sanity.
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I got the "TMI" reaction from my DH. His approach to things is to hire professionals and respect their decisions. In my profession, I'm the professional... different mindset. When you are looking at treatment for bc, it's not the time to abdicate authority. I continued to do my research on all the options, including reading posts on BCO from women who faced the same decision. I just informed DH when I reached a decision and that was fine with him. Some patients probably prefer to have their doctors tell them what to do but I was really glad I made my own decisions. It was much easier to live with the outcome.
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When we put on a huge back deck and added an addition to our house, I certainly hired a professional to do it and respected what they said, but I never let go of my huge "gene" of common sense. Nor did I when I was diagnosed and treated. I constantly research things and ask lots of questions. I'm sure my chart at the cancer hospital is flagged, because I am very outspoken and don't take crap for people who are just giving me crap. I'm a social worker by profession and a bull dog advocate at heart. I am also very understanding and forgiving. I work hard to keep my life in balance.
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BON I love the idea of a virtual trap door on Facebook. That would be awesome.How about the sounds of a crackling fire and screams. Sorry, It has been one of those days.
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