What to say?

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seof
seof Member Posts: 819 Member
edited March 2014 in Breast Cancer #1
Bill's posting the other day started me thinking, and I still have not come up with an answer for myself. What should I say to those who ask things like, "did they get it all" or "are you in remission now". My Drs. have not used those terms (Knowing the Oncologist, he may never, because he can't guarantee it). After my first round of chemo they could not find any sign of cancer on CT scan or ultrasound (for any "normal" person that would mean they had nothing to worry about, right?). They did bilateral mastectomy and found a few cancer cells in the tissue they removed. I did another round of chemo (which should kill any remaining cells in the whole system) and radiation (which should kill any in the specific area that survived the chemo). I am currently doing herceptin treatments (this should prevent the cells in my body from going crazy and turning into a cancerous growth again), to be finished in Feb. Then I plan on doing recosntruction. I know there are no guarantees, but after all the treatments, with everything apparently going extremely well, I think it would be safe to assume success. I feel like I should say that I HAD cancer, because there is no reasonable reason to think otherwise. Also saying HAD cancer would feel better to me and those around me, so why is it such a hard thing to say and believe?

So....here's my question...an opinion poll, as it were:

What do y'all think...if you were in my place, would you say you were cancer free?

Thanks for your input. seof

Comments

  • mgm42
    mgm42 Member Posts: 491 Member
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    I'm in the same boat. After a lumpectomy, chemo and in the midst of radiation, I asked my radiation onoclogist "when" will someone tell me I'm cancer free. His reply was - "you are now. We have nothing to indicate that you still have cancer." That was it! Convincing? No! I was happy to hear his words, but did I believe it? Absolutely not. I still feel like I have breast cancer and I always will have breast cancer.

    Although life is getting better each day and I'm enjoying myself once again, the awful thought lingers in the back of my mind. As long as that horrible mechanism that can start cells running wild in my system is not decommissioned, I feel like I will always have potential cancer. I don't mean to sound like a downer because I'm not. But, you hit on a point that bothers me everyday. So, in order to satisfy my own weird thought process and answer peoples' questions honestly, I say that I was treated for breast cancer and am taking medication to reduce my chances of recurrence. By the time they digest that mouthful of words, they don't ask anymore questions. LOL. But, if someone can come up with something more positive for me as well as those people who ask, I'm all ears. Thanks for an interesting posting. You've made my day because I've wanted to talk about this for ages. Hugs, Marilynn
  • kit45
    kit45 Member Posts: 89
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    Good question seof, as I read your post and Marilyn's it made me wonder what will I say myself when I'm finished treatment. I honestly don't know that answer yet. I'm anxious to read other thoughts. Kit
  • KathiM
    KathiM Member Posts: 8,028 Member
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    Absolutely. But, if you feel uncomfortable about that...say 'I have finished all treatment, and just on prophylactic drugs to keep it gone' until you do feel ok about using the 'cancer free'....

    That's my take...I'm 2 years post treatment, and, if questioned, I say (when I have a burr under my saddle..lol) 'I have as much chance with cancer as you do'....

    Hugs, Kathi (always the big mouth..rofl)
  • kbc4869
    kbc4869 Member Posts: 159
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    Hi Seof,

    I gave your question a lot of thought before posting. It's such a complex question because the answer has so many aspects to it -- attitude, physical evidence, emotional and of course, WHOSE asking it!

    The obvious answer is physically, we have no way of knowing if there are some cells in our body that are cancerous. We know that we've done all the treatments and if are scans and blood work are coming back clear, we have to go with the evidence we have. With that in mind, an appropriate answer to the question is "I HAD cancer."

    Now, as we answer that question, we don't know without a doubt whether or not there are cells multiplying and floating around undetected. We just have no way of knowing. With that thought in mind, the answer could be "My treatment was agressive, and I'm optimistic that it got rid of the cancer." Personally, I've never liked the term "Remission." It brings to my mind the beast still hiding inside of me some where like a sleeping giant. And if I'm too loud or move around too much, I'll wake him and he'll jump up and go back to work.

    And you could take that question even deeper still. Once you've had it, it seems that there's this permanent seed planted into your brain. It sprouts fear and doubt, and that maddening ever-present question of "What If it comes back?" And I believe that question has physical and emotional tolls on us. Fatigue, depression, unexplainable (and explainable) aches and pains that make us feel sick even when we are told we are not. Are these symptoms there because we still have cancer? Are the symptoms there because so much emotional energy is expended on worrying about cancer that is starts affecting us physically? Are the symptoms there because of what we went through to get rid of the cancer? When someone asks me if I have cancer, if they're asking me on a deeper, more emotional level. To be honest, I think my answer right now is "Yes. I have cancer, but it's in my heart." This is a bit of a morbid and maybe not accurate comparison, but I sometimes imagine what it's like for someone that lost a child. And after losing the child, someone asks them unknowingly, "Do you have any children?" The person could say that physically no - they don't have children. But in their heart they most certainly do and always will. That's kind of how I feel about the cancer right now. It has had such a profound effect on my life. Maybe this won't always be my answer. I hope not.

    I'm sorry if I've made this more complicated than it has to be. Maybe that's my problem. But our lives have certainly got more complex. I think the answer depends on whose asking. Or maybe what's really important is the answer that we believe in our hearts.

    Much love,

    Kim
  • base61ball
    base61ball Member Posts: 125
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    Although I am not halfway thru chemo yet and still have radiation to go - I usually answer that the cancer is gone and I am going through preventative therapy to hopefully eliminate any future problems.

    The truth is, we didn't expect to get cancer in the first place - even tho our innocence on this subject is gone - I prefer to think that they got it all and it isn't coming back. If it does, I'll worry about it then.

    I absolutely refuse to allow cancer to rule my life - I will not be a victim to it. If it comes back I will deal with it. If it doesn't then good for me. I have too much other stuff going on in my head to have one thing taking over too much space.

    It could be because my mother died of colon cancer August 1, 1966. I took care of her throughout the illness and guess my view is take the good when you can and don't allow the bad to interfere.

    Life is a one way trip and we only have today. For today, I don't have cancer so that would be an honest answer.
  • Jadie
    Jadie Member Posts: 723
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    Although I am not halfway thru chemo yet and still have radiation to go - I usually answer that the cancer is gone and I am going through preventative therapy to hopefully eliminate any future problems.

    The truth is, we didn't expect to get cancer in the first place - even tho our innocence on this subject is gone - I prefer to think that they got it all and it isn't coming back. If it does, I'll worry about it then.

    I absolutely refuse to allow cancer to rule my life - I will not be a victim to it. If it comes back I will deal with it. If it doesn't then good for me. I have too much other stuff going on in my head to have one thing taking over too much space.

    It could be because my mother died of colon cancer August 1, 1966. I took care of her throughout the illness and guess my view is take the good when you can and don't allow the bad to interfere.

    Life is a one way trip and we only have today. For today, I don't have cancer so that would be an honest answer.

    Hi base61ball

    I am a 5 yr survivor and I too lost my dad to lymphomia in 85

    I so feel the same way you do that I could have written your exact words.

    We need to take today for what it is worth and tomorrow will take care of its self.

    Seof when some one ask me if I am cancer free I just say I hope. We always have hope. When theres nothing else we have hope.
  • I think your point that we have no guarantees could be the basis for our reply to the 'how you doing' questions people ask and well as our attitude toward the future.
    Any one who asks, 'are you cancer free?' could be carrying cancer cells in their bodies as well as we could (God forbid), so my stock answer is, 'Who knows? But I am doing great right now, thank you.'
  • chenheart
    chenheart Member Posts: 5,159
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    Great Posting, seof! For myself, I simply say, ( with a smile of course!) that TODAY I don't have cancer!! And TODAY I can say that because I just got back from my 6 month oncologist visit, and all labs are good, and there is still NED! Tomorrow? I have no idea about, of course. But Today, I do not have cancer....

    Hugs,
    Claudia
  • mgm42
    mgm42 Member Posts: 491 Member
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    chenheart said:

    Great Posting, seof! For myself, I simply say, ( with a smile of course!) that TODAY I don't have cancer!! And TODAY I can say that because I just got back from my 6 month oncologist visit, and all labs are good, and there is still NED! Tomorrow? I have no idea about, of course. But Today, I do not have cancer....

    Hugs,
    Claudia

    CONGRATULATIONS ON GOOD CHECK-UP! NED IS RIGHT! I have my first mammogram since my surgery in December, and I'm apprehensive, to say the least. I'm hoping NED will be there for me, too. Hugs, Marilynn
  • Joycelouise
    Joycelouise Member Posts: 482
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    As I wrote to Bill, I say I HAD cancer. If life makes a liar out of me, I will deal with that later. It is sort of like when you are pregnant and want to buy things for the baby but people caution you (what if you have a miscarriage?) and my take on that was...If I lose this child, G-d Forbid, I will be so sad that wether or not I have to return the layette will be the least of my problems. In the meantime I am not going to miss out on the fun of planning for success and joy!
    Also, I say I HAD cancer, because it seems that most people who are asking are really asking something else...are you normal and will you live. Damn right on both. If saying I HAD cancer makes them see that, hallelujah.
    love to all you exes, Joyce
  • Joycelouise
    Joycelouise Member Posts: 482
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    kbc4869 said:

    Hi Seof,

    I gave your question a lot of thought before posting. It's such a complex question because the answer has so many aspects to it -- attitude, physical evidence, emotional and of course, WHOSE asking it!

    The obvious answer is physically, we have no way of knowing if there are some cells in our body that are cancerous. We know that we've done all the treatments and if are scans and blood work are coming back clear, we have to go with the evidence we have. With that in mind, an appropriate answer to the question is "I HAD cancer."

    Now, as we answer that question, we don't know without a doubt whether or not there are cells multiplying and floating around undetected. We just have no way of knowing. With that thought in mind, the answer could be "My treatment was agressive, and I'm optimistic that it got rid of the cancer." Personally, I've never liked the term "Remission." It brings to my mind the beast still hiding inside of me some where like a sleeping giant. And if I'm too loud or move around too much, I'll wake him and he'll jump up and go back to work.

    And you could take that question even deeper still. Once you've had it, it seems that there's this permanent seed planted into your brain. It sprouts fear and doubt, and that maddening ever-present question of "What If it comes back?" And I believe that question has physical and emotional tolls on us. Fatigue, depression, unexplainable (and explainable) aches and pains that make us feel sick even when we are told we are not. Are these symptoms there because we still have cancer? Are the symptoms there because so much emotional energy is expended on worrying about cancer that is starts affecting us physically? Are the symptoms there because of what we went through to get rid of the cancer? When someone asks me if I have cancer, if they're asking me on a deeper, more emotional level. To be honest, I think my answer right now is "Yes. I have cancer, but it's in my heart." This is a bit of a morbid and maybe not accurate comparison, but I sometimes imagine what it's like for someone that lost a child. And after losing the child, someone asks them unknowingly, "Do you have any children?" The person could say that physically no - they don't have children. But in their heart they most certainly do and always will. That's kind of how I feel about the cancer right now. It has had such a profound effect on my life. Maybe this won't always be my answer. I hope not.

    I'm sorry if I've made this more complicated than it has to be. Maybe that's my problem. But our lives have certainly got more complex. I think the answer depends on whose asking. Or maybe what's really important is the answer that we believe in our hearts.

    Much love,

    Kim

    A sensitive answer, Kim. Yeah, it is in my heart too. So lets do some heart chemo...and get that *&*#$ out of there! Heart chemo...big doses of hope, love, trust. Not heart chemo...people asking you if you will live. Sometimes I wish those people would just spend their time asking their spouses "Are you cheating on me?" you know the type. Love to you always, sweetie. And trust and hope. Joyce
  • mmontero38
    mmontero38 Member Posts: 1,510
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    Hi all: I agree with Kim, Sometimes deep in my heart I have that little seed of doubt of whether I am cured of the beast. Though, I try not to dwell on the matter, every now and then there is a little niggle of doubt. When people ask, I always say I had. I think it also makes me feel better saying it. Love, Lili
  • Bill.S
    Bill.S Member Posts: 177
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    Really good reading here.
    My Dad died from multiple cancers.Lung kidney,intestine,brain,liver.(OR he had 1 type that spread to all of those parts) It was horrible near the end seeing him like that. He died at home with Hospice care. Never forget the last time I saw him the day before he passed.
    Anyway he fought to the end and lost. WE are not going to loose. Weather I HAVE or HAD isn't as important as where do I go from here. We follow our doctors orders, do our chemo and rads and hope for the best. I'm only 57 (AUG 13 and I want a cake) and have another 30 or so years to enjoy. This has been a wake-up call for me and when I'm feeling good I intend to try and enjoy life more than I have in the past. I don't know where my BC came from, it just appeared out on thin air and now that it has been surgically removed I don't want it back. BUT I don't control the future either, so I'll just have to live each day to the fullest that I can.
    LOVE being here with you.
    Bill S 56 11/12 yr young BC survivor
    don't forget the Bday cake
  • kbc4869 said:

    Hi Seof,

    I gave your question a lot of thought before posting. It's such a complex question because the answer has so many aspects to it -- attitude, physical evidence, emotional and of course, WHOSE asking it!

    The obvious answer is physically, we have no way of knowing if there are some cells in our body that are cancerous. We know that we've done all the treatments and if are scans and blood work are coming back clear, we have to go with the evidence we have. With that in mind, an appropriate answer to the question is "I HAD cancer."

    Now, as we answer that question, we don't know without a doubt whether or not there are cells multiplying and floating around undetected. We just have no way of knowing. With that thought in mind, the answer could be "My treatment was agressive, and I'm optimistic that it got rid of the cancer." Personally, I've never liked the term "Remission." It brings to my mind the beast still hiding inside of me some where like a sleeping giant. And if I'm too loud or move around too much, I'll wake him and he'll jump up and go back to work.

    And you could take that question even deeper still. Once you've had it, it seems that there's this permanent seed planted into your brain. It sprouts fear and doubt, and that maddening ever-present question of "What If it comes back?" And I believe that question has physical and emotional tolls on us. Fatigue, depression, unexplainable (and explainable) aches and pains that make us feel sick even when we are told we are not. Are these symptoms there because we still have cancer? Are the symptoms there because so much emotional energy is expended on worrying about cancer that is starts affecting us physically? Are the symptoms there because of what we went through to get rid of the cancer? When someone asks me if I have cancer, if they're asking me on a deeper, more emotional level. To be honest, I think my answer right now is "Yes. I have cancer, but it's in my heart." This is a bit of a morbid and maybe not accurate comparison, but I sometimes imagine what it's like for someone that lost a child. And after losing the child, someone asks them unknowingly, "Do you have any children?" The person could say that physically no - they don't have children. But in their heart they most certainly do and always will. That's kind of how I feel about the cancer right now. It has had such a profound effect on my life. Maybe this won't always be my answer. I hope not.

    I'm sorry if I've made this more complicated than it has to be. Maybe that's my problem. But our lives have certainly got more complex. I think the answer depends on whose asking. Or maybe what's really important is the answer that we believe in our hearts.

    Much love,

    Kim

    I definitely say I HAD cancer. Unless something happens to prove otherwise.
  • kbc4869
    kbc4869 Member Posts: 159
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    A sensitive answer, Kim. Yeah, it is in my heart too. So lets do some heart chemo...and get that *&*#$ out of there! Heart chemo...big doses of hope, love, trust. Not heart chemo...people asking you if you will live. Sometimes I wish those people would just spend their time asking their spouses "Are you cheating on me?" you know the type. Love to you always, sweetie. And trust and hope. Joyce

    Thanks, Joysis. Can you tell I was feeling a little sad yesterday? :) But today's a new day, and I feel better. And you know what? I don't have cancer. Love ya, Girlfriend!
  • seof
    seof Member Posts: 819 Member
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    kbc4869 said:

    Hi Seof,

    I gave your question a lot of thought before posting. It's such a complex question because the answer has so many aspects to it -- attitude, physical evidence, emotional and of course, WHOSE asking it!

    The obvious answer is physically, we have no way of knowing if there are some cells in our body that are cancerous. We know that we've done all the treatments and if are scans and blood work are coming back clear, we have to go with the evidence we have. With that in mind, an appropriate answer to the question is "I HAD cancer."

    Now, as we answer that question, we don't know without a doubt whether or not there are cells multiplying and floating around undetected. We just have no way of knowing. With that thought in mind, the answer could be "My treatment was agressive, and I'm optimistic that it got rid of the cancer." Personally, I've never liked the term "Remission." It brings to my mind the beast still hiding inside of me some where like a sleeping giant. And if I'm too loud or move around too much, I'll wake him and he'll jump up and go back to work.

    And you could take that question even deeper still. Once you've had it, it seems that there's this permanent seed planted into your brain. It sprouts fear and doubt, and that maddening ever-present question of "What If it comes back?" And I believe that question has physical and emotional tolls on us. Fatigue, depression, unexplainable (and explainable) aches and pains that make us feel sick even when we are told we are not. Are these symptoms there because we still have cancer? Are the symptoms there because so much emotional energy is expended on worrying about cancer that is starts affecting us physically? Are the symptoms there because of what we went through to get rid of the cancer? When someone asks me if I have cancer, if they're asking me on a deeper, more emotional level. To be honest, I think my answer right now is "Yes. I have cancer, but it's in my heart." This is a bit of a morbid and maybe not accurate comparison, but I sometimes imagine what it's like for someone that lost a child. And after losing the child, someone asks them unknowingly, "Do you have any children?" The person could say that physically no - they don't have children. But in their heart they most certainly do and always will. That's kind of how I feel about the cancer right now. It has had such a profound effect on my life. Maybe this won't always be my answer. I hope not.

    I'm sorry if I've made this more complicated than it has to be. Maybe that's my problem. But our lives have certainly got more complex. I think the answer depends on whose asking. Or maybe what's really important is the answer that we believe in our hearts.

    Much love,

    Kim

    Thanks for this. It is a complicated issue, no way around that. It is interesting you should mention having a child die...our first child was stillborn. We have 2 daughters living with us and a son in heaven, but when I am asked about my family, I generally say I have 2 children. As I get to know someone better, if an appropriate conversation comes up I talk about our son. So...as this relates to cancer, I think it would be OK to say "had", then if it is appropriate to the conversation later, we can go into the complicated details. I think you have given me a helpful way to look at it.

    Thanks. seof