When people ask "how is the treatment going?"
Hi ladies,
I noticed that a couple people that are concerned about me kept asking how the treatment was going, and I'd usually tell them I was doing well overall although having lots of uncomfortable side effects. They'd seem puzzled and ask "but is it working? What does the doctor say?" and I didn't know what to say. I think I finally figured out what they're asking. They're imagining the doctor is going to tell me whether I'm going to be cured or not. I realized that I've learned a lot about BC, particularly ER+ BC with multiple nodes, and I understand treatment is all about statistics. The doctors are not going to know whether the chemo, surgery, rads, and hormone treatments will "cure" me or not. The oncs aren't even going to use that word. It's all about reducing probability of recurrence. I know I'll never get a clean bill of health, even 5, 10, 15 years out. I realized the concerned people don't understand this!
I am not really sure whether to break it to them or not. For a coworker, I just evaded the question. For a relative, I finally told him that you just go through treatment and then wait to see if it recurs. I'm not sure how he's going to take that. For myself, I'm annoyed when people want to be in the "oh I know you'll be fine" camp, and I'm also annoyed when relatives overly stress about me. I'm never going to be able to honestly reassure them, yet I don't want repeated worried inquiries.
How about you? Are you honest to these types of questions? Do you try to educate people about the reality? Do you fib a bit and tell them all is clear?
Comments
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Ann,
This question used to total unhinge me. Come to think of it, it still does. I know folks want to hear that the ordeal is over and that we are fine and that life goes on as usual. But that question was so loaded for me. The question would always remind me of the situation and my dx. Then I immediately go to that dark place that we all know so well. My thoughts would fly to "Am I well?" "Will I be well?" "Will I always struggle with living with the unknown?" I actually spent time talking with my therapist about this question. I learned that depending on the person, I don't have to answer. I'll say things like: Everything looks great. The doctors are pleased. I feel great. I'm hanging in there. I've learned to just live in the moment and right now life is great. Let's not talk about it, I don't like reliving it. And, I choose not to talk about it...let's change the subject. I guess what I'd like to say is ...crap, do any of us know how we REALLY are?
I have to admit, I find the "is it working" question so offensive. I would get that question from teary eyed co-workers in the middle of chemo. I got it immediately after chemo when I actually started to breath a little and wham I'd be in fear mode. And, I get it still -- how was your appt., do they know if you're REALLY okay? I'm two yrs. out from dx and I'm still so raw...particularly when I see other women on the board, my role models, facing scans and mets -- so that question has the ability to bring everything up.
I can say that as you move on down the road, fewer and fewer people will ask those questions. It has made me wonder what came out of my mouth before my own dx. I truly hope I wasn't like that.
This is truly a journey.
Best to you.
Rachel
IDC, BRCA2+ , node+, er+
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If it was a casual aquantaince, I would just give an "OK, it's not a picnic, but it's manageable", and now just give a "good, everything is fine for now". For closer relatives or friends, I was more honest with the ups and downs. I am 3 years out and had BMX, chemo & rads. I now tell them I am NED (No evidence of disease), that I did everything I could to prevent a reoccurrence, and I hope for the best. (for my closest friends, I have said, if it does come back, I hope it is far enough in the future for treatments options to continue to improve.)
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Rachel1, I am going to reserve the right to say "crap, do any of us know how we REALLY are?" at some point. Thanks for understanding my feelings.
GottaloveNED, those are some good ways to put it. I think I can use "good, everything is fine for now" quite a lot.
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My response is 'I can't fix yesterday, I don't know about tomorrow, but today is a good day'. It's true. I didn't want cancer but I can't change it and dwelling on it is depressing. I don't know what tomorrow will bring - I can hope all the treatments are successful for the long term but - that's tomorrow, I cannot control it and dwelling on it is frustrating and scary. But, I can say today is a good day and really mean it.
I will answer questions openly with family and close friends since they are my life and my support. It's been more than a year since my diagnosis, I've had surgery x3, chemo and radiation. There is more to life than BC and I'm ready to move forward. Cancer does not define my life - it was speed bump.
That said, I realized cancer didn't just happen to me but also to those around me. Early on, I sent out email updates and shared the information I felt was shareable. My email group grew to 130+ people but it is a great way to get the same information to everyone and I didn't need to repeat myself.
Find what is comfortable for you. I'm not sure it gets 'better' with time but I can honestly say sometimes I 'forget' about my BC when I meet someone or go somewhere and just enjoy the time.
Hugs to you - it's not easy but you will find your way.
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My standard response is, "Well I will never know really until I die of something else first, and I am counting on going out in my sleep, with a way too young and good looking guy's cowboy boots under my bed
Giddyup!!!!
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I am usually honest, which makes most people say, "Oh, don't be so negative!" Uhm, I am really not, but this is my reality. Still trying to come up with a different way of explaining, but not really sure how to get across that I am fine, but not "cured."
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I love the way you say it, ohio4me. That is so true. Think I'm gonna adopt that as a standard response.
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I just say I'm fine...because you know what? unless or until it changes, I AM fine. Breast cancer sucks, and it really sucks that it happened to me. But, I am not morphing into "Breast Cancer Girl". It's out of me, I'll have my exchange surgery soon, and that's it - I'm done with it. I refuse to live my life worrying about it coming back, because if I do, then it won. And it's not going to win.
If you want to give a non-answer answer, just explain that sometimes the tumor shrinks, sometimes it doesn't, but what chemo is really intended to do is to make sure that any cells that escaped the part they're going to remove surgically (or did remove, if you had surgery first), get zapped. There's no way to tell, because it's more like a future preventive action when it comes to breast cancer. That the surgery gets the actual tumor, and then radiation gets any cells that might possibly have been left behind in that specific area. So, all your bases are covered.
It's all true enough and ends any follow-up questioning, unless they're really rude.
And if they say they know you're going to be fine? A simple "thank you" works well.
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Ann, I know it's difficult when you're going through tx to believe the fear of recurrence will ever go away, but eventually it gets a lot better, so that while it's still there, it's not uppermost or constantly on your mind. Of course we all know that bc can and does recur, but I honestly don't think that's what our friends, acquaintances and work associates want to hear. They want reassurance that you're going to be okay, which is the kind of dialogue we and our doctors should be focusing on. So I honestly think the best thing we can do is to wrap up whatever progress report we offer about our currrent status (like an honest comment on how you're feeling that day, for example) with something like, "... but my doctors say I should be fine after I finish my tx." Of course, this isn't the whole story, but I personally think it's important for several reasons -- (1) because the odds for most of us with early stage bc (and you say you're Stage II or III) are something like 85% (and I realize that stat will be different for some Stage IIIs) that we won't have a recurrence, so why dwell on what hopefully won't happen?; (2) because unless they've been through bc, they won't understand anyway; and (3) because not knowing your prognosis or not knowing you have a good prognosis makes people very uncomfortable and will probably provoke talk and rumors that may not be true and could affect your job stability.
And as far as your immediate family ... while you obviously need to share your deepest feelings with them, I think they'll also appreciate a positive outlook as much as possible because they already totally get and are living with the life-long threat and fear that bc has created for you and for them.
I know sometimes it's really hard to put aside our fears and be really hopeful about the future, especially when you're still going through tx. But it honestly does get better, and I think a positive, reassuring answer is the better approach to those awkward questions, especially in the workplace. Deanna
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DLB, I do appreciate what you are saying and you are probably right. I must bicker on a small point though, it is not a matter of how I feel really, but a matter of what the truth is. How I feel about it doesn't change anything.
I know my mother, for example, is looking for rainbow poop and sparkles, but she has had cancer herself and her sister is stage IV, so I also feel that I should be able to tell her the truth in a straight forward fashion. I find it very tiring and annoying to have to fudge and evade all the time.
With my daughter, I do keep info mostly positive, unless she asks specific and direct questions. She is only 20 and has better things to think about.
With my husband, I really do feel that I need to remind him every so often that this stupid disease may well kill me one of these days. He is such an eternal optimist that he tends to gloss over unpleasant realities.
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Momine, thank you reminding me that every family situation is unique. I didn't mean to suggest that we should be less than genuine with close family members, or that we should always try to put a positive spin on things for them. I was just thinking about my own DH who reminds me when I've shared with him that someone I know has had a recurrence, for example, or that I'm concerned about an unexplained ache or pain, that he doesn't need to be reminded that my bc could come back -- that it's a fear he lives with too. I guess I was trying to suggest being aware of that, which I don't think I really was until recently. I guess I thought I was carrying that burden alone -- because my DH is also a very self-reliant, determined individual, But I now realize it will always be there for my family, too. Deanna
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OK, I see better what you mean. Those things I don't usually discuss with my DH, or anyone else for that matter. I will tell him, if it is something I decide to call the doc about.
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Momine...the one person in this world who will refuse to believe the "truth" IS your mother...she cannot imagine her baby being sick, or God forbid, dying before her, so you might want to give her a little break on that. She's earned her rainbow sparkles...
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Itsjustme, I guess, but it just brings home to me that I can't have any kind of real relationship with my mother.
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Ann,
We get to answer those questions with the answer that makes us feel comfortable. There's no good canned response because how we choose to respond is a reflection of who we are -- and we are all very different people.
If a casual aquaintance asked me then I would keep my answer short with the hope that they get the message that "I'm handling it, it's OK and I don't want to talk about it". If they tried to ask more I would again give them a short answer. This worked well for me -- those people didn't pursue it further.
For my friends and family I laid it on the line so they'd know where I was coming from. If the treatment was bothering me, I let them know. As for prognosis or the future, I'd make it clear that this get rid of the cancer for now but it's not like other cancers where you get to ring the "all clear" bell after 5 years. I wanted them to know that this was going to be a part of my life from this point forward and that it would shape my priorities and my plans.
This has worked well for me. So now that I'm having issues with my elderly parents, my brother is really stepping up and trying to minimize the load for me because he knows that I will keep taking on more and more until the stress makes me take a hard fall. And when I ask my kids to come visit me, rather than me going there, they understand that it because I don't have the energy and not because I'm just being lazy.
What has really bothered me was the number of people that have asked me "what did you do???" when they see me with my arm wrapped for lymphedema. Now we're talking total strangers. I'm so tried of telling them "it's nothing -- it prevents swelling." Makes me feel very self-concious of all the times I have seen people in casts or bandages and asked what happened. I've learned to keep my mouth shut unless it's someone close to me.
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I have friends who keep wanting to know if I am/will be cured. I finally started telling them, "we'll know that when I die of something else." They usually quit asking at that point.
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