The dumbest things people have said to you/about you
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Dlia--insurance
won't pay for the BRCA testing because he's male?Really?When a history of male bc is a Huge indicator of a BRCA mutation?Good Lord, talk about gender
discrimination.Genny--tell the
pharmacy assistant to check with the pharmaceutical company that makes her
Dad's drug, most companies have programs to help with the cost and sometimes
even provide free medication for people who can't afford the med.His doc's office can often help with that,
too.Too scary to go off something that
is controlling such a terrible disease.Monis--"I would
rather have saved up money for a boob job than lose 3 years of my life to
treatment complications and going bankrupt."0 -
i'm really stunned about the male BRCA thing. Often they encourage the testing of a diagnosed close relative first and there are cancers besides breast included in the syndrome. What if the only suspicious relative is your dad?
I can remember when I worked in health insurance back in the 80's some states had started mandating coverage for male breast cancer. I remember it because we did the underwriting for the entire country and none of us had ever seen a case.
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Isn't breast cancer linked to prostate cancer?????
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What other cancers have been linked to mutations in BRCA1 and BRCA2?
Harmful mutations in BRCA1 and BRCA2 increase the risk of several cancers in addition to breast and ovarian cancer. BRCA1 mutations may increase a woman’s risk of developing fallopian tubecancer and peritoneal cancer (7, 8). Men with BRCA2 mutations, and to a lesser extent BRCA1mutations, are also at increased risk of breast cancer (9). Men with harmful BRCA1 or BRCA2mutations have a higher risk of prostate cancer (10). Men and women with BRCA1 or BRCA2mutations may be at increased risk of pancreatic cancer (11).
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Melissa, I was also told to watch for skin cancer. I have an irregular "thingy" in my BRCA2 gene that they can't identify at this time. I didn't care to get tested, but my daughter and my sister can now get tested once I was.
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Monis-that is disgusting and ridiculous!!0 -
Any history of male breast cancer IS a huge red flag. I had it in the gene pool four generations ago. Honestly I think my genetic doc was pretty excited about it. Dila - maybe your friend should speak to a genetic counselor. Also my DIL's mom is BRCA 1 pos, so DIL was able to test for the one gene (?) instead of the full panel. The cost was like $550 instead of the $4000. So if anyone in the coworker's fam has a positive BRCA test they can zero in on that gene.
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Just found this thread. My dear friend Maddie directed me-she and I bonded during the July 2012 chemo train. I have laughed @ the really really dumb things said.
I work in health care. I am a RN currently serving as a dean of health-so I work with health care professionals. That does not stop stupid. A couple of days ago @ a health care facility I had 2 people ask me how much time I had left. Yep. As if I had a ticker plugged in someplace with a countdown moving constantly. I could not begin to formulate an answer. The second person followed with-well I know you did not get to finish your chemo so I though maybe you were given a time frame. Nope. Sorry. Yep. Toxic on Taxol and moved to Taxotere. Toxic on it. Herceptin-20 of 52 weeks and heart failure. But no email from a higher power as to when to expect the drop dead date.
I have been asked if I still have cancer. Lets see @ that time I was bald, bloated, vomiting, chemo chair every week, ghost white. Nope. Am good.
Had the usual-be strong, be patient, you are so strong, no god would take a person as strong as you. Right.
The day my port was placed in July 2012 my @#%%^ ex husband (who was husband then) walked out. He was a dedicated breast man. Moved out of our house and moved in with another woman. The day I was diagnosed I signed a contract for a new job @ 1000, had the mammogram @ 2:00 and found out he had an active match.com web site and had a date that night. He had cheated for years. Final straw. The day he walked he offered to stay and see me through to the end-which he thought/hoped would be soon. I said he did not deserve to be part of my life living or dying. But-he might want to rethink his plan. He would get more pussy (sorry-but that is how I put it) as a sad widower than cheating on a dying wife. Divorce was final a year ago. Working on the settlement now. In NM a divorce can be final almost by touching heads and spitting in a cup and waiting 24 hours. The settlement can be finalized over the next 18 months. He was morbidly obese and had a gastric bypass prior to walking and was impotent and had a penile implant also prior to walking. I have not seen him but apparently has lost 200 lbs. An extremely tall skinny person who cannot hold his body upright scouring the SW for women. As he seems to be dumped often. Something about cheating and lying. So beware. My friends and I hope for pump failure and fleas.
Having my port out soon. My MO doesn't think a drug will surface that is not cardiotoxic to replace Herceptin. Am on Femara which I hate due to the SEs. Have floated between Femara, another AI, and tamox trying to find something that doesn't cause horrid bone and joint and muscle pain.
I was told today that at least my hair is growing back. Really? My toe nails still crumble which is crazy-none of the tax sisters for a year. I have gained a toddler since starting the estrogen blockers/suckers. I still have nausea and some vomiting. Pain ranges 7-10. I have no boobs. Plastic surgeon and breast surgeon won't talk to me about reconstruction until 2-3 years after diagnosis and I am health wise close to where I was when starting. So I carry around fake ones that weigh 2.5 lbs each. I have threatened to throw them @ people. My surgeon is excellent-but my chest does look a bit like Edward as in Scissorhands took a swipe or two. And the hair fell out 3 times and appears to be thinning again. Or the male pattern baldness is certainly prominent!
My kids are grown and on their own except youngest who starts law school in the fall. Live alone with an obese rescued lab mix. Read, quilt, avoid cooking, sleep. Work a lot-but love my job. Very much. First grand child-Cora due in 3 weeks.
Not a NM native. Moved from TX. But grew up in Iowa and Southern California. College in Texas. Lived in Baltimore a bit then back to Texas. Then to NM about 12 years ago.
A bit of my convoluted story. Sad, desperate, and incomplete. I need a wife to do things for me. A gay guy (I know that is not politically correct-but I do because I have always had a gay best friend except here) to be my best friend and go to movies or watch movies on the couch. And a pirate. Because I think a pirate as a friend would be so very amusing. No hooks for hands though. My skin was so wonderful during chemo. After rads my chest is skin is thin and awful. My face skin is weird. So am afraid the hook might hurt my skin. A peg leg is fine. Of course for most the first pirate that comes to mind is Johnny Depp in the pirates movies. That is probably too high of a reach.
Am glad Maddie directed me to this thread. A good place to find laughter and new friends.
Susan
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Susan, you have been through the ringer to say the least. And, given me some great comebacks for the boneheads out there who think they know the answer to all of what we're going through. They are so CLUELESS. As my grandfather used to say "they're so dumb, they don't know they're dumb". Welcome to our club. Can't wait to hear more!
Sue
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Susan: Your story is so candid, honest and funny that I so wish I could share Johnny Depp with you (but he is all mine)!
And I too am so glad that you found us
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Susan - I'm still laughing over pump failure and fleas!! Thanks for that!
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Farmer-I got the fleas from my dear friend Maddie. She lives in the UK and has the best little sayings-and soup recipes. May the fleas of one thousand camels live in his armpits. Good huh! Maddie has become my therapist, sister, and more-from the thread.
Mile-my daugher is going to Boulder law in August. She is much like her mother. Strong and willful. And she pulled a Legally Blonde move last July. She graduated in May with a degree in communications and anthropology with honors. Realized she could not support herself with communications and looked @ anthropology as her hobby. Her senior year she provided enrichment to a 700 lb gorilla @ the zoo every week. After a couple months he quit charging @ her. Nice. So--she was spending some time in Texas with relatives. Called in July and said she thought she would go to law school. I said why. She-well I took some questions on-line and they are the kind I like and are easy. I want to work non-profit (my usual jobs are non-profit and academia is certainly non-profit) and if I have a law degree and pass the bar I can do the legal work, support myself and take my dog to work. So the truth came out. Take her dog to work. In my division of health the first thing I did was get dogs in the building. So--she studied a month, took the LSAT, made a 165 (91%) and applied to Boulder-the school she wanted to go to due to the concurrent masters in public administration. I recommended to apply to more. She-nah. I might after I get back from this trip Called 22 Dec screaming. I got in! And a wonderful scholarship. She applied to University of Texas just to see if they would take her. She is waitlisted. But won't accept. Going to Boulder in April with her dad (not the %$%$%) for tours. Anyway-mile I digress-which I do so very often. I will be driving through or flying in-maybe we can meet. I have not met anyone on the boards yet. I wanted to plan an anniversary with the July group to a spa with hot and cold running cabana boys but only a few of us stuck around after finishing. I am old, not dead and a fan of hot and cold running cabana boys. And maid service.
TB90. Apparently there is a pirate convention (or some such event) in Miami every September. I looked for a conference there last year. Am starting to look for one this year. I would find that very entertaining. I am not sure why-and do not need to know. But a very very large number of pirates in pirate costumes. Great fun. Good rum.
If any of you have had the herceptin heart issue. It does no good to call the company and offer to sign documents to relieve them from legal remifications from the drug, offer to take half doses, bribe the PharmD person who sounds about 12 by asking him if he would treat his mother this way depriving her of needed medication, offering to be a single woman clinical trial to the research group. Nothing worked. I am getting gifts-notebooks, journals, cookbooks. Called and told them to cease the gifts. I was not going to sue just because my EF dropped to the low 30s high 20s. But I would be a much nicer person to talk to if they would just let me have the rest of the course. Declined. Offered to send bread. From my > than 100year old sour dough starter. Declined. Told them to quit sending things and to quit calling me. If i was dead they would know it because I signed a release to have access to all my records. Tried to talk my MO into it first. Thought he was going to faint ethical little darling
I promised to sign anything-as above. He felt so guilty anyway-had never had a case like mine ever. His wife and i have gotten to be friends. We have planned a dinner and i will clutch my chest. Yes. She is a nurse also and has the same warped sense of humor. More of my saga and side winding road through the 10th circle of hell known as breast cancer.
Did I mention I HATE Pinktober. Used to enjoy it. Before got the Big C and found stickers on my Taters. And onions. And everything.
s
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Susan, I'd love to hook up. Great story you've shared. I swear I know someone that could be your daughter's twin. Actually I know several.
I'm dealing with lovely lymphedema in both legs along with a newly diagnosed blood clot in one. I'd have to find a cabana boy who can do lymphatic massage around the long vein in that leg. Hmmm. This could be interesting. I have a good friend in Phoenix. She and I planned to meet half way between there and Denver. Now awaiting for winter to really be over. Catch a UFO and join us.
Sue
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Sue. Lymphedema. So very sorry. How long has it been a problem? Do you go to a trained lymphadema therapist? i have sleeves for my arms-for just in case. I wear them when I fly-if I remember. I had 8 nodes in one armpit and 23 in the other.
Sarah-my youngest is quite the young woman. While she was doing enrichment with the gorilla she did some with the big cats. Then she did some for her guina pig, rabbit, and hamster in her apartment (where she and her roommates were not to have pets-they did not count these as pets because they were little-nor the "little" dogs) and for her big dogs at home. She did an internship at an animal humane where everyone brought their dogs to work-thus her bringing her dog to work. And-we have to dogs in my building. I wanted to put chickens in our courtyard this spring-but the chicken coop put me off. I thought they could nest on the ground. When she was in HS she did concurrrent enrollment @ the university for film and got to work on a couple of major films. She met George as in Clooney during Men Who Stare At Goats and the other big name stars. She turned 18 during the filming and I told her she was no longer too young for George and to please bring him home. She said he was beautiful. She wasn't star struck-I would have drooled. She would come home and tell me she spent time with the actor who played Juno's dad (can't remember his name) during lunch, hung out with the oscar winning musical score director who talked current music trends with her. And who she gave rides to their hotel.
I have 3 others who are full grown and haired over adults. My oldest Malia teaches first grade in Texas. She loves those little ones and generally has ones with problems. Big problems. She is kind and patient and loving. Not married but has a SO who is wonderful. She was my rock during chemo. Was with me for both surgeries. My son is next. He is a border patrol agent in Larado. A place so bad I am not allowed to visit. Matt is tall, broad, works out, bald, and in uniform, a force not to mess with. He does not stand at the border asking what country you reside. He is of the scary variety. We have a deal. I pretend he is at the border asking what country. He tells me he is safe every day. Next is another daughter, Anne. She is married and lives in the Dallas area. She and Ace have been married 4 years this June. Anne is a social worker by education but has been employed as an event planner for Scottish Rite for almost 5 years. Cora is due in about 3 weeks. I need to finish her quilt. My three big kids as I refer to them were born within 3 years. Malia was 3, Matt was 15 months when Anne was born. I was a crazy breast feeding lunatic who was my own car pool. And, yes I knew how to prevent pregnancy. As a nurse and worked family planning. And had an IUD, was breast feeding Matt-he was not getting any other food AND it was hunting season in Texas. I knew date time minute and second I got knocked up. Would not trade Anne for anything ever. When my ob/gyn removed the IUD it broke in half and the top part imbedded in my uterus. The drug company referred to me as the client and the alleged pregnancy. I offered to send some of the alleged vomit. How is that for TMI?
I waited for Sarah. Malia was 12. Best thing i did as an old woman was have a baby. Three older siblings and their friends to help raise her. My friends had baby fever and begged to help. My nursing students begged to baby sit. Perfect.
UFOs. I have to be supportive as the money tourists spend in massive during the UFO events. But the museum is a sad little place with tin foil hats and newspaper clippings. A UFO "body" mock up in a plastic case. Lots of T-shirts. Insurance cards in case you are abducted. Car stickers-Aliens-They Taste Just Like Chicken. During the UFO event in the summer people travel from other countries, dress in costume (star trek, etc), have costume contests for humans and dogs, speakers from across the universe on the "truth". I zip in to buy a sack of kettle korn-if I find a convenient parking slot. If not,-never mind. The last couple of years there have been film contests at the same time-for alien films.
Am off to bed soon. Have to proctor EMS exams tomorrow before my sweet girl arrives. For readers-The Wives of Los Lunas. Good book. Novel but has the real names follows timeline.
Sweet dreams from a woman with no cleavage. Oh yes-I was asked if I would have cleavage after my 2nd MX. Uh no. will not have breasts. None. Zippo. I did answer Yes. Butt and toe only.
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You didn't hear this from me, but tuna oil in the airfilter of the car can be fun
Glad you still have humor. I think you should get an extra boob and just use it one day as a projectile. 0 -
Susan, I never thought I'd say this but Your ex-husband makes mine sound like Price Charming, I mean mine was an ass, but yours?? Holy s**t, I hope his pump explodes, he gets a million fleas under his armpits AND an anal fistula… what scum-sucking piece of s**t! But your kids sound great, at least there's that… I have my 1st grand baby, 2 1/2 months old and I look at her and realize the ex was at least a good sperm doner. Anyway, have you thought about writing as a hobbie? You remind me of my best friend, she's an RN as well. Sorry about all the shit you went thru, wow it sounds rough. Welcome to the thread!
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Thanks Genny and Fairy. Fairy-I have thought about writing about this experience. The title would be "And Unfortunatly". Because during my week of testing in July '12 I had a missed call from a hot shot radiation oncologist who evaluated some of my biopsys. He left a voice message on my phone telling me the news--types of cancer, number of biopsies with cancer from that day (had 9 punch biopsies that day-on my birthday), and finised with "And unfortunatly, you have metatstatic nodes in your axilla that were not present three days ago. If you have questions you can call me." Ass. I called. He was playing golf. I asked for clarifiication to the mets statement. He said-well you have axillary mets. Period, done and none. About a year later I had one of the supervising radiologists listen to the message. Pointed out I could have been driving, could have had my daughter listen, could have been psycho and found him and run him over with my car.
And-very glad to report I did NOT genetically reproduce with this piece of scum.
I have so many days I feel like Weezer in Steel Magnolias and just want to punch someone.
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susan you have really been dealt the bad hand in the game of BC haven't you.. My doctors have all been so wonderful, from my PCP to my surgeon to my onc, to the radiation onc which I just met last week. I will tell you that they all work out of the same little sattelite office several day a week and they are all WOMEN.... That's right, all 4 women, and they are part of University Hospitals here in Cleveland. I guess you have just made me see another silver lining in this whole mess... I feel so blessed to have them on my side. Sorry it didn't go like that for you...it sucks
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Hi Ladies- I see my dear friend Susan has passed on the curse. This is the full curse-" A pox on you- you scurvy knave! May the fleas of a thousand camels infest your armpits"! I LOVE the scurvy knave bit!
Hi barbe- how are you doing? Has anyone been lucky enough to employ you yet? Hope all is well your side. How is your back these days?
Okay - this the dumb thing that REALLY drives me up the wall! You have a real problem, and you tell your medical team about it, and they say "I've never seen/heard of this before" It makes you feel like a complete fraud, so you don't mention it again. Later you check with our dear sisters on the thread, and find hundreds of people have experienced the same thing. What's that all about!!
When the skin peeled off , and got really shiny on my reconstructed breast after chemo my PS asked me what it was. Say what!! I thought - that's what I am paying you for. How the hell would I know!!! I figured out myself it happened after every chemo, and that is what was causing it. Lived for 2 weeks in a state of terror. I thought the skin was dying.
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Holy crap, Maddie!?!? Your own PS had never seen that? I hope you educated him well.
I still have to find a lucrative job...sigh. The one I just took on gave me a sales commission figure that made me happy only for me to learn from the actual salespeople on the floor to expect HALF!! WTF!! Also, didn't expect to have to stand on cement for 9 hours a day - my back is almost as bad as when I went on disability and this time I don't have any insurance!! Crisis not averted....
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Maddie! Yeah! She also has good soup recipes-even turnip. Which is good! I know. Really is though.
I forgot (chemo brain) about the "no one else has this" from the MO or RO or surgeon. And then so many on the boards. The first time my MO suggested I might have fibro. That suddeenly appeared just as I was dx with BC and had chemo. Right.
Barbe-sales with half commission. Why bother and so rude.
So glad to find this link-via Maddie
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My most hated reaction from medical people was "that almost never happens!" I didn't care how rare the reaction was, I wanted treatment for it! Apparently if it's rare it doesn't get treatment. . . .
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I hate hearing "mild". Describe acceptable pain then, to me, please??? I don't CARE how mild a condition may be, if it hurts ME, it IS my concern and will shortly become yours!!!!
I also hate when you visit your doc and he walks in and says "How are you"? and expects you to say "Fine, how are you?" Those are words I NEVER use in sales. I hate coming in a store and someone says "how are you?" Do you REALLY want to know?????? I will always greet them in my own way, so they know who is going to help them, but I don't "do" the small-talk bull.
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not sure this is dumb or not but i have had a few guys say 'you are getting bigger ones right??' when i tell them about my double mastectomy... made me laugh anyway
people mean well but ya they sure have no idea what to say, already very tired of the 'be strong' advice and all the 'you will be fine' reassurances... people HAVE NO IDEA...0 -
im just waiting for someone to tell me it's my fault because i dont believe in 'God'
i was raised roman catholic and have lapsed i am more agnostic than athiest but i have been very outspoken about how i resent bible thumpers who fly planes into buildings and who want to teach our children that evolution is not real... or infringe on a womens right to the privacy of her own body...
ya i am liberal and i dont care who knows it...
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When I went in for my first chemo treatment I was told by the nurses and MO that I should expect SE's to kick in by 2nd-3rd day. Well, I was sick the first night...just completely ill. DH called MO that night because he was worried and I needed some other kind of ant-naseau meds. She says to him, This never happens...as if we were just making this up or something. So you're telling me that I'm the only patient in the whole world who has gotten sick the first night of chemo??? Really??
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And the "just be strong and have faith and you will be fine" So all those dead people with cancer were weak and without faith of any kind? Really.
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I do hair in a retirement home. When one of my clients called for an appt right after I got my dx. I gave her a date and told her of my dx explaining that I may have to change it for a Dr appt to which she replied.. "Oh breast cancer is no big deal, nobody dies from that anymore." Ha...true story, cracked me up. Don't know what I was making such a big deal about..
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genny: that cracks me up too ! Why do people think they know so much about BC?? Obviously they haven't dealt with it personally OR had a relative die from it.
Patti: I was also raised Roman catholic and very strict. I also don't buy into the phrase "everything happens for a reason". Neither does my Lutheran pastor. Some things in our lives just don't appear to have a purpose. I decided when I had children, that I would let them make up their own minds about religion.
susan: I know some "people of faith" too, that have not had successful outcomes with cancer. So hard to be positive and I truly hate it when others say that being positive somehow is a miracle cure.
Just sayin.....
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got another one the other day....someone in the medical field too....errrr.
had my sleeve and glove on and she asked me what I had done to my arm. I said that I had breast cancer and before I could say more she got a really smart tone and said...You had breast cancer.....in your ARM??? Doofus!!!!
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