The dumbest things people have said to you/about you
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Goldfish 4884 -actually, our diagnosis are different, if your profile is accurate. Yours was ER+/PR+, HER2- IHC. Mine was single-receptor ER+/PR-/HER2- IDC - that progesterone-receptor-negative makes a very big difference. However, I'm glad you responded because I went looking for my source and can't find it; maybe i misinterpreted something? I'll keep looking because I was sure that my early risk of distant recurrence was lower than later on, after 3 years. But, as I always say, I COULD be wrong!
I have read that prognosis for single-receptor ER+/PR-/HER2- is similar to Triple-Negative.
If anyone can enlighten me as to the early and late risks of distant recurrence for Single Receptor ER+/PR-/HER2- IDC, I'd appreciate feedback.
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Stawzie, I know this is belated, but one thing that has troubled me deeply is the awful things one of my supervisors has said. Things ranged from "How will you do your work?" when I told her about my cancer, to "Well, you look healthy," earlier this month. Gosh, let's move on, okay?
Yep, no clue about nail problems and ongoing fatigue. I spoke with a counselor, and that helped me develop some "tools" on how to deal with her.
Also, fed up with everyone saying, "You just need to be mindful and positive. Chew your broccoli with love." I'm really not down or anything like that. I guess I am...pragmatic? Hopeful yet rational. LOL.
Best,
Dee
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"Chew your broccoli with love!" That made me giggle.
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Yay! I'm all up for a good giggle.
BTW, loved what you said to your work team.
Dee
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I am rather new to this telling people that I have BC. I have found, so far, that I tend to want to protect people from the news. I buffer telling them with a softening mention of how far treatment has come in recent years, to it is JUST a lumpectomy. Like any of this is JUST anything. Like I want to protect them. It is an interesting phenomena that I am working through at this early stage. I am minimizing. They therefore show a trend in their reactions. There is a lot of minimizing of the issue that happens with the newly informed saying anything from "Well, good thing you caught it early" to "oh, if you need a mastectomy you get new boobs!" Seriously?! Or my personal favorite: "Good thing that is all it is". What does that even mean??
I have felt supported yet minimized in the diagnosis. Many people offer sage advice that I know they feel must make me feel better, and perhaps I am being overly selfish, but just because your cousin's husband's mom had a lumpectomy and went back to work in 2 days , doesn't mean I will have that process. In some ways they make me feel weak, like if I don't recover as fast as your cousin's wife's mom, I have failed or I am not strong.
All of this is so new, and I know I am super sensitive right now, especially as the treatment plan is still developing. These are just my random experiences and how I am processing people's words right now.
Catherine
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Hi Catherine. So sorry you are going through this. I found the beginning exhausting. In fact, I ended up designating certain "communicators" because telling people was so draining that after I told my parents and my kids, I just couldn't face it.
It got better with time and as people got used to the idea. And it got better once the treatment plan was set and I had some concrete steps to take and to communicate.
One practical thing that I found very helpful is I set up a site on Caringbridge.org. It's a place where you can post updates in one spot, rather than having to tell the same story over and over again. I did have some resistors at the beginning who seemed to feel like I owed them a person call every time something happened, and I enlisted my husband and mom to set them straight. I like it because now people know where to go for information and I can update the site on my terms and my timeline. I also set up my husband and my sister as authors so they can post updates on my behalf. For example, when I was out of surgery my husband sent one text to my sister and she updated the site for all concerned.
Another practical step we took was to set up a site on mealtrain.com. We were getting deluged with offers of help and food and getting a bit overwhelmed. It helped us manage the various offers and also get some control over what people made. As you start treatment, you might consider it. In my case, my chemo days are Friday. I asked for one meal on Fridays and one on Saturdays, so at least I knew that my family was fed on a day I wasn't going to feel like eating, let alone cooking!
I actually found the beginning of this whole crappy process the worst part. The uncertainty and waiting was terrible. While I won't lie - chemo is kinda sucky - once I started treatment I felt emotionally better and more in control.
What I wished I'd known to say in the beginning when we were almost overwhelmed with offers of help is "I don't know what I need yet, but I promise I'll tell you as soon as I do." I thought I would not need the help, but I'm grateful for it now.
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I have to say, “Chew your broccoli with love” is one of the funniest things I’ve ever heard. I think that would warrant a “what the fuck are you taking about?” response.
Kber, that expression is common here in the south, too. Once I heard a funny extended version: “God willing, creek don’t rise, and harelip the Devil.”
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I think it's hard for people to find the right balance on what to say. There can't be THAT many naturally awkward people in the world. IF I should ever have a recurrence (or more likely, another new cancer with my track record), I don't think I'd tell many people. I did tell friends/family on FB the day before surgery, and a quick "I'm okay" after. I did a longer rant when I needed a radical nephrectomy for kidney cancer a few months later, with another "I'm okay" after. Then when I finished radiation in December, I apologetically shared the good news that I felt I could move on with my life. Family reactions were mixed - some posted "normal" reactions, others nothing to any of it. When we saw family over the holidays, some acted like they had no idea what I'd gone through - ha! I knew some of them had unfollowed me for other reasons, mainly political. But one told my husband "Yeah, she was all over FB with that stuff." Well, eff you, dude. This SOB posts every single move he makes every day! And my own sister told me I was too needy. Grrr. So if I have any future health issues, they can find out when they see my damn obituary, and I won't mention my health status at all until then.
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Yes recurrence for er+ pr- cancers are similar to triple negative, mostly all happen in the first 5 years. Not much is really known on the absence of pr receptors not that many in our"group". Studies done said er+ pr- occurs in older women like 75 years old. I was post menopausal but only 53 and my er % was very high. My oncologist seems to think my chances of recurrence are less than 10%, I will be 8 years NED in October 2019.
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Thank you, Meow13 - you and I are so similar (my ER+ is 95; PR- is 0); and like you, I was post-menopausal and older than you but way short of 75 (I was 67). I'm going to double check with my MO in June when I see him next; in the meantime, I'll go with your info that most recurrences for ER+/PR- happen in the first 5 years.
So glad you've been NED for going on 8 years. .
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Thank you for your ideas kber. I can totally understand when you say you almost felt more in control when chemo finally started. Right now I feel like I am taking a test, waiting, meeting another doctor, taking another test, waiting. I am actually looking forward to a plan/schedule ( not the actual treatments).
I will look into Caringbridge and mealtrain today
Catherine
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Alice,
I think people are truly stumped what to say. In order to make me feel better everyone seems to say it is all so easy and such a change in treatment from years ago and I should feel lucky.
I don't feel lucky right now. I am blessed to live in this era of scientific advancement for diagnosis and treatment, though.
I hope you never have to add another row to your bio.
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Patsy: did you get some answers/feedback about singke receptor negative? I had never heard what prognosis was at all.
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shelly56 - just what Meow13 posted above about the highest risk for ER+/PR-/HER2- being in the first 5 years. I see my MO in June and will probe more then.
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Catob1969 it’s so true that you’ll be relieved when you have your treatment plan in place. I kept the news-sharing to a very small and intimate circle until I had my plan. That way I was able to put a halt to well meaning people sharing recommendations and advice. I was relentless in that. Lowered my stress considerably.
Keep us posted.
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PatsyKB
I was never told that in our dx were alike in our prognosis to triple negative. - and was told I 'was a significant risk of dying from your disease' that was about a year ago . I am er 8/8 and Pr 0. I am coming up to 7 years soon. I could relax much more if I thought the main risk period of those first five years was now over. Sometimes I don't know what to think. I would be interested to hear what your onc thinks as I am now discharged from all care and do not now have any medic to discuss it with. .
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I’ll definitely fill you - and everyone else - in, wintersocks. It’s almost as though most MO’s disregard the single receptor thing which seems stupid, considering studies which show it has a very different prognosis than ER+PR+.
Stay tuned. Onward!
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Catob1969, Thanks. I think I'm too picky sometimes. I want to downplay what happened last year, but I'd still like an occasional "How ya doing?" from family or friends. I think because I dodged chemo with all my cancers (borderline but JUST under for the kidney, and close on the breast), it's considered "cancer lite" in spite of major surgeries. I have a PET scan in a few weeks. If that's all clear, I can consider myself an EX-cancer patient until proven otherwise, and what other people say or don't say won't bother me. I hope.
I heard one perfect reaction from a not-so-close old friend: when I ran into him in December at a group function, he said "I'm so sorry for the horrible year you've had," gave me a chance to respond, softly asked "Are you doing okay now?" and gave me another chance to answer if I wanted. He should give lessons.
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Meow13- I will be 8 years NED in August God willing.
Diane
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AliceB - just as some people are not good at this,some people are, and yes I also wish they could share their wisdom!
My sister in law could give lessons in how to talk to people going through tough times. I admire that about her tremendously.
Maybe we should start a new thread: what’s the best / most helpful comment you’ve heard to or about you
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wanderweg and astyanax — I’m laughing tears with the chewing broccoli and WTF are you talking about!
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Thank you all for the posts! Just had my mastectomy on Monday. I'll have to go back over and take notes on the best comebacks!
Kber, I agree with your suggestion "Maybe we should start a new thread: what's the best / most helpful comment you've heard to or about you"
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Hi All, just popped into retrieve a thread. This a very old thread. It was a hoot. People say the stupidest damn things. I'm sure they are still saying stupid and awful things. Ya'll might have some fun relating their stupid stuff :)
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