Stupid comments ....
Comments
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jilly59... I'm sorry; I went through the same with my sister. She came to visit me, briefly, after my surgery then... nothing. No calls, no nothing. So I called her about half-way through chemo. She was going through a difficult time with her ex-husband and one of her sons at the time, and - immediately - launched into a tirade about how much her life sucked and that I couldn't possibly understand how difficult life was.
Really? I was terrified, thin, bald, weak, and very shakey emotionally and I COULDN'T POSSIBLY UNDERSTAND HOW MUCH LIFE SUCKED?!!?
I was gobsmacked. Then, when we were saying our goodbyes at the end of the call, she said, "... oh, by-the-by, how are you feeling..." (Like shit, how do you think I feel?)
Needless to say, I've slowly phased her out of my life. It's just better that way.
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Selena-when I get that 'woe is me' from people, I say "I'll trade ya!" That always shuts them up, and it's true; I will take the trials and tribulations of everyday life ANYDAY.
Purging toxic people from our lives greatly enhances our quality of life, IMHO. So sad to here about your sister, too. I think in some sick, perverse way, they're jealous...the attention they may have been getting is redirected. It's really sad but not my problem. Life is too short.
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My reply to "We all have cancer cells" Ok , you want to trade your cancer cells for mine?
Want me to wish my cancer cells on your most beloved?....mmmm seems different somehow doesnt it.
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Jilly
here is another. I have been told by others that I have had the tumor removed, the area radiated and am taking preventative meds. I was told that I no longer have cancer. Really? then why do I have to pay $$$ quarterly to get C25-27 blood work? They are looking for cancer. It may or may not be there but no one can say its gone. If that were the case I would not have another single blood test, mammo or take aother fu8king pill.
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Jilly59
I too get told that I'm "cured" since my breasts are gone. At first, I tried explaining to them but then I'd notice their eyes glaze over and I finally realized that all they want to hear is "yes, I am cured". It's like when people ask, "how are you?" and all they really want to hear is "fine". Sigh. I truly believe the only people who understand are the ones who have had cancer.
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RaiderGirl...yes, we are similar in our dx but why are you having tumor markers done? Just curious. My MO and BS said no surveillance for me; too many false positives with markers and scans unnecessary. He said just be aware of pain that's not my typical pain. Not sure I'm happy with that.
Gingercake...you are correct. No one except breast cancer patients themselves understand. I can't get my kids to understand I'm NOT CURED!
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This is a great thread!
When I confided in a close relative that I was scared about recurrence and worried about only getting physical clinical exams for surveillance, I was told, " Stop borrowing trouble, if it comes back it comes back, nothing you can do about it". OUCH!
I guess I just "borrowed" my cancer. sigh
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Caligirl - well, for heaven's sake, give it back! (eye roll)
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Hopeful: I know, right! I wish I could give it back:)
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Don't we all...
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jilly - I'm not being followed with any scans or bloodwork either...makes me nervous, too!
gingercake - I also agree with you that only those who have had cancer can understand. A previous manager of mine was talking about her friend who had surgery for breast cancer last summer and she seemed impatient with her that she was worried about a recurrence. She did the whole "she's cured" thing. I kind of cringed when she was saying it but didn't say anything. Maybe I should have, but it just seemed like it would be awkward.
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Anyone mind if I jump into this thread? Hello all.
Back when I first got diagnosed, I went to church one Sunday and one of the ladies came up behind me and hugged me.
Her: I heard you have cancer.
Me: Yes
Her: Where is it?
Me (uncomfortably whispering): my breast
Her: No, WHERE is the lump? Can you actually feel it?
She wanted me to actually point to it or something!! I'm thinking, "sure, let me just put on an exam gown for you and you can take a look for yourself!"
I'm intrigued by the talk of how people react by talk of recurrence. I have had similar experiences with people, especially family, who just want to hear me "be positive". Being positive is not magic pixie dust that will make everything fly away.
My MO won't talk about what's next in the plan. I have no idea what after care and testing look like. What I'm getting from reading here is that it really varies. It would seem I have some homework to do so that I'm ready for that segment of things.
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kayb - I think you are right and that these tests do sometimes come down to the choice of the individual doctor. My MO also did not recommend Tamoxifen for me, but I see a lot of other stage 1a ladies on these boards who are taking it because they are ER+. On one hand, I also get a little nervous not taking it, but on the other, I am very happy to not be taking it. I had 4 tiny invasive tumors...largest was 3mm, smallest was .8mm. The MO said there is not a lot of data on tumors that small and what happens with them so I think I didn't fall into any category that required any specific tests. I was a little startled when at my 6 month check up with the BS he made some comment about scans and then said how insurance wouldn't pay for it for a lower stage patient. That seemed a little crazy to me if that is the reasoning behind not doing it. I would hope that wouldn't be the determining factor, but I do know it was a challenge getting the MRI done, even with my doctor talking to the doctor at the insurance company. I will also be curious to see what is done at my 1 year check-up. I hope the nurse doesn't ask me again when my last mammo was - that was a little weird at my 6 month check considering I had a bilateral mastectomy without reconstruction. I would think there wouldn't be anything to squish!
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How would they do a mammo after mastectomy? Seems like that nurse's question could be added to the list in this thread.
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MombieZombie - Yes, as I was typing the nurse's question, I thought the same thing...it was really STUPID and definitely goes with this thread!
I've already decided I will say something to her about it if she asks me again in July!0 -
Mel - tell her what I tell nurses who ask that - "I have no mammos to gram."
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Good to keep a sense of humor about these things. But I feel a little righteous anger too. They should be looking at your chart and being sensitive. I am always thinking, "why are you asking me that when it's in my chart?"
I only had lumpectomy but I dread the mammos because my tumor was deep and low. The tech has to use two hands and tug and tug my breast into the machine. I have to remind them that the darn thing doesn't come off!! I think they forget there's a person attached when they have to concentrate like that. This whole process often leaves us feeling like a piece of meat under scrutiny.
I agree with Nat--you need a witty come back if you are ever asked that again.
I still like my lady at church that wanted me to show her where my tumor was. People just don't think. It makes me hope that I've never done something gauche like that in years past.
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Now that's just silly. Here's your yearly reminder that you don't have boobs anymore?!!!! In this world of high tech abilities, it strikes me that the real reason they don't fix it is because it seems not worth the trouble. I think a lot of people don't get it. I want my rads tattoos taken off. My DH looks at me and says, "they don't even show" Well I see them. And they remind me of stuff. I'm sorry the won't fix that for you. Can't they enter a bogus date into your chart so the pop-ups will shut off?
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I'm an IT system administrator. It really irritates me when someone throws up their hands and says something is written into the software and there's no way to override it. Computers aren't independent thinkers - people programmed those computers to spit out those reminders, and people can go right back into the programming and create a filter in the software so the reminders don't go to someone with a BMX noted in their records. If that's too much trouble, Mombie is on the right track too - it may be possible to do a workaround by entering a bogus date or something similar.
Anything can be done with software if someone cares enough to put their mind and effort to it. Computers aren't uncontrollable entities - we tell them what to do, and we can tell them what not to do.
That's why we need more women in IT!!!!
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I think blaming the computer is easier than actually admitting that they don't know something. After all, doctors are not exactly known for saying, "I don't know how to do that."
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Hi Natsfan, not sure if that is the #1 for Doctors, or if "that is not a side effect from chemo" should be #1.
Maybe we should write a Top Ten list of things Doctors say, but it would be way longer than 10 things!
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Beach--I love that. Friday I got told that a rash was not a side effect of something in my treatment and that I'm really experiencing bug bites. Hmmm....no one in my family has them. I don't have bed bugs. We had the house checked before moving in. We have no pets. It's too early for mosquitoes here. Hmmm...I don't think it's bug bites. I shrugged, went home and stopped using the creams and bandaging they gave me. Guess what? Bumps going away. "But that's not a side effect of my treatment". Yes, that would be a funny book. I'm sure others with other ailments could chime in.
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I had a nasty rash right after my first TC infusion and the oncology nurse told me it was Athlete's Foot.....in my cleavage and decolletage no less! I just laughed at her and walked off. Fortunately I didn't have this reaction with subsequent infusions, but I am sure that this was an allergic skin reaction to the chemo.
MsP
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MombieZombie, Really?? So after reading a ton of info, and reading all of the threads, just what is a side effect of chemo? I have neuropathy, heart damage, shortness of breath, dry cough, missing toenails, no hair, missing eyebrows and eye lashes, weight gain, dry skin, rads "sunburn", dry mouth, blurry vision, high B6, low vitamin D, joint degeneration, heartburn, disrupted sleep, hot flashes, and oh forgot the no boob. Sigh............
I love to rattle off the list, and then I get the glassy eyed look. Then the Doctor will say "how long have you had that"? Uh since I started chemo...........ugh!
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Beach--True! I think the docs come to a point where if it's not in their book of listed side effects, then it must be something else. I can handle sometimes being told that it's not the chemo, the meds, the radiation cream, whatever, but I hate it when they insist that they know what other thing IS causing it. That nurse and I had a funny chat over those bumps. The whole time, if I was talking, I referred to the rash and her replies would insistently be using the word bug bites. It was like a test of wills with each of us looking each other in the eye to see who would cave in.
You keep right on rattling off that list. It's quite impressive and you have earned the right to wear it as a badge of courage. Military people get purple hearts. Maybe we should get a purple something? A purple boob? Too weird? LOL
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Nope, I would take the purple boob, then I could have a pair, must have been a surgical side effect!
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I'm stuck in bed feeling beyond lousy today. You are making me laugh. I like your way of thinking!!
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NatsFan - I love that comeback! I will have to remember it in July!
I also cringe when my electronic medical chart pops up with my mammo reminder and I agree with all the comments that they definitely should take the time to fix that. I've had a similar experience regarding the question "when was your last period?" That's when I have to say "2003 when I had a hysterectomy." Again, the issue is the chart is not being read. Used to be the paper chart, now its the electronic one they don't read. I spent a very long time inputting all the answers to the patient profile in My Chart before my surgery only to find out later the surgeon's office had not even opened the file.
Beach - Also in agreement with the whole "that's not a side effect" comment - oh goodness, I have heard that a lot over the years! I didn't have chemo, so it was never in regards to that, but I don't do well with drugs and have a number that I am allergic too. Same issue for me - they think it's not possible to have the reaction, but then when I stop taking the drug, the reaction goes away. <Sigh> how frustrating!
MombieZombie - I got a chuckle out of the "verbal showdown" between you and the nurse! Too funny! I hope you feel better soon!
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Jilly
I hear you on the marker tests. The second opinion MO said he does not do cancer marker tests unless patient has symptoms to justify the test.
Florida Cancer Specialists , which is my current MO Group . This group is all over Florida insists on quarterly marker tests but he did say that the test alone is not an indicator of mets but only a diagnostic tool. Positive marker tests are repeated, checked against symptoms and then possibly followed by scans.
Whatever, so long as insurance pay for it.
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I have a few interesting/stupid comments from my MO during my last visit with her in which I was trying to explain that some of the side effects of tamoxifen were simply getting the better of me:
1. "There is simply NO WAY to know if someone is post-menopausal." (ME: really, because I thought there was a blood test that would measure 3 indicators of menopause. HER:" oh right.").
2. "You are not post-menopausal because you have been on tamoxifen so your lack of a period is due to that." (ME: "I've only been taking tamox since December. I haven't had a period since June.")
3. "This sounds a lot like it is actually menopause causing these issues." (ME: "But I stopped taking tamoxifen 3 weeks ago and the symptoms are gone. Plus, you just said I wasn't in menopause!")
4. "There is NO OTHER option for staving off estrogen other than having your ovaries out. You can either stay on tamoxifen or schedule surgery." (ME: what about the SOFT and TEXT results?")
5. "It is not possible for me to explain to your insurance company why you failed tamoxifen. AND why you failed anastrozole without even trying it." (ME: Whatever. I will pay out of pocket. I am not taking that drug anymore. I could just go with nothing....yes I turned into a teenager but I won...)
6. "Is there a time when your work won't require these things so you could go back on tamoxifen?" (ME: I actually need to be able to think pretty consistently in my life.)
6. "People who complain about tamoxifen are not able to handle any other medication either."
GRRRRRRRRRRRRRRRRRR.
And I should throw in two from "a friend" who recently described my experience, in the same conversation as "a cancer scare" (like it was a false alarm!!!) AND as my "brush with cancer" (like It just grazed me!!!).
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