The Next Time Round

Sometimes I forget that there are actually people out there who do not understand that metastatic breast cancer is usually fatal. Laurie Becklund’s video, in which she mentions how someone gave her a “get well” card upon hearing of her metastatic recurrence, reminded me of an upsetting incident that happened last summer. (For anyone who does not know, Becklund died Feb. 8.)

I’ve written often about the ever present fear of cancer, that I’ll never be “over” cancer, and how that sometimes that fear is a bit more pronounced. Last summer, after a “suspicious” mammogram that led to an MRI, and various other symptoms, I was in a state of higher anxiety about recurrence than usual. When discussing the fear, someone said to me that it would not be as difficult the second time round, because after all, I knew what to expect.

I was unable to respond. In the back of my mind, I was afraid I would sound like my usual self, always determined to see the bad side of a situation. Now I could kick myself for that. I think everyone views me that way anyway, even when I choose not to express my “negative” thoughts. But more importantly, I regret not taking the opportunity to explain what causes me fear. And yes, this person, given their profession, should’ve known better than to dismiss any fear.

It is so odd that anyone would think a second round of cancer would be easier, simply because a patient has been through it before, and knows what to expect. I want to say “yes, I HAVE done it before, I know what to expect, and that is precisely why I am so anxious—because it was horrible!!!!” I remember reading an article while in treatment, written by a caregiver, who said that over time, all the memories of chemo and its awful side effects fade. True, I don’t really “remember” how awful I felt, only because I’ve never felt so bad/sick/tired before or since. But the knowledge that it was the worst over-a-year-long experience of my life has not faded at all.

At any rate, recurrence will probably not be much like the first time round. I expect there to be variables. If it is a simple, early stage recurrence of the same cancer in the same place, I’d have a mastectomy—very different than the lumpectomy I had last time. That’s just for starters. There would be no radiation. And what drugs would get used—and would they impact me differently, given my body is not as healthy as it was going into cancer that first time? Those are just the thoughts off the top of my head.

The biggest issue is that recurrence can be in a different place, because the cancer would have metastasized. That is a completely different scenario. Metastasis is real possibility, and it troubles me that 1) some folks refuse to acknowledge or are simply ignorant of that and 2) treatment and outcomes for metastatic cancer are NOT comparable to the first cancer experience. Sometimes I wonder, with all the positive survivor culture that saturates everything, if some people mistakenly took home the message that breast cancer at least, never causes death.

For me, the fear, obviously, is death. Right now, even though I’ve had cancer, I can hang on to the idea that maybe I won’t get it again, and that I will reach an old age and die of something else. Metastatic cancer would put limits on that idea. Would I have to abandon the idea of reaching age 80, 70, 60, even 50?

Yes I’m aware of the anecdotes, of the many women who have lived well beyond that five year from metastatic diagnosis mark. And I am aware that many would prefer not to be viewed as a dead woman walking—would prefer to concentrate on living. I’m not discussing that, merely stating that I know such a diagnosis would severely limit the likelihood of reaching old age. Because I think there are so many who do NOT know this.

I do not know how I would handle a metastatic recurrence. One of the socially UNacceptable lessons I learned from cancer is that it is useless for me to say I’d know what I’d do or how I’d feel if a situation were different. I do know that I do not want to know.

I think this knowledge of limited life span should be enough for anyone to understand why a recurrence is such a huge fear, such a cause of anxiety. It should also explain why I cannot count on previous experience. The idea of “you’ve done cancer before, so you know you can do it again” concept does not apply to a metastatic recurrence scenario—at least for me.

Of course there are many other differences that I am thankfully only aware of because I read other bloggers who describe them. Differences like, frequency of doctor visits and scans, being in treatment permanently, switching to a new drug every time the current one stops working, and I’m sure there are more. How can these things even compare to that first cancer experience? For me, they do not.

Even worse, the incident last summer reinforced for me the awareness that most people do not even understand that treatment for Stage 4 (when a cancer has already metastasized by initial diagnosis—see note below) is vastly different for those of us who “caught it early”. The experience is different for ALL the “metsters”, regardless of if metastasis was found the first, second, or third time round. Thankfully I am not in that group, so I do not have the right to try and describe it. I’m guessing anyone who reads my piddlin’ blog already reads blogs by those who can articulate the experience. (Anyone who has other blogs or sites communicating the metastatic experience, feel free to leave links in comments, if you are so inclined).

I wish I’d brought up all these points to the person who tried to assure me that since I’d done cancer before, I knew what to expect, and that should reduce my anxiety. It only heightened my anxiety. That person is no longer in my life (for other reasons). I’ll make sure all those who do remain in my life, or enter it in the future, understand that the next time round, would not be the same for me, at least. Metastatic cancer is a completely different animal in CancerLand, and I’ll try to do my part to make that clear to those who just do not “get it”, to the best of my curmudgeonly ability.

Note: See here for explanation of difference between Stage 4 and metastatic breast cancer. Also find in this article information about how statistics and data do not accurately reflect metastatic recurrence. Another note about deaths not always being attributed to MBC: “Another quarter-million Americans are estimated to be waiting in the wings. I say “estimated” because no one is required to report a metastatic diagnosis. Death certificates normally report symptoms such as “respiratory failure,” not the actual disease. We are literally uncounted.” from As I Lay Dying by Becklund.

Addendum: I rarely write about MBC because I can only speak for myself, and only write from my POV–so I never want to come off as someone worried & whining about what MIGHT happen, when those with MBC are worried about what HAS happened. So I hope everyone with MBC who reads this understands that is the spirit behind the post.

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Author: Cancer Curmudgeon

Oct 2010 diagnosed with Stage 3, HER2+ Breast Cancer. Completed treatment Jan 2012. Waaaaaay over pink. Applying punk rock sensibility to how I do cancer.

37 thoughts on “The Next Time Round”

    1. Another one to disappoint. The never-ending comments made by people who have no clue about what it feels like to be in cancer world. Personally, I am tired of excusing these people by using the phrase, “people just don’t know what to say.” (I am working on a post myself about this. I also question whose job is it to educate…and when.)

      There has to be a line people aren’t allowed to cross, but first they need to be aware of what that line is. And they need to understand why. It would help if people started to ask themselves the question, “how would I feel if someone said that to me?” A statement that should be applied to life in general.

      A recurrence sounds very scary to me. Mets scare me even more. Will I be stronger the second time around? I probably won’t be in shock like I originally was when I was dx at the age of 32 but it would def. hit me hard for many reasons, in addition to already knowing what could happen.

      It feels as if we aren’t part of that other world anymore once we are dx with cancer. You know, who we used to be. There’s this separation because of the lack understanding and education on cancer. I am just not sure how we can close the gap.

      Perhaps it’s the “denial” in people that makes them act that way. After been diagnosed, I feel denial is no longer part of my life so we are more inclined to see things for what they are. We don’t lie to ourselves.

      Rebecca

      Liked by 1 person

      1. Closing the gap on the education, yeah, that’s the trick isn’t it? And yes, it is unfair that the task of educating about cancer, and what to say to patients falls on patients themselves. But then I ask myself, who better to do the educating? But yes I get sick of doing so, and maybe a little bit of motivation behind this post is me reminding myself to speak up more, with patience (not my strong suit). Thanks as always!

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  1. As someone who has had 3 recurrences, your experience unfortunately was not unique. It seems the more recurrences I have, the less people worry about my health. It is assumed I will be just fine as I’ve always been just fine. It doesn’t get easier each time around. It gets harder on the body, emotions, and especially the spirit. So far I’ve been lucky with no Mets but my luck can’t hold up forever. It’s like playing Russian Roulette. The bullet is in there somewhere. Thanks for addressing this very important topic.

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    1. Thank you Sharon — reading your blog was definitely one of the seeds of this post, as thought back to that incident last summer. And yes, I hear you on the luck. No doubt, people around you must think, “oh well, she has always been fine”. That’s the hard part, I bet.

      Liked by 1 person

    1. Thank YOU for reading and commenting. Given that I’ve only been once around, I was concerned how those such as yourself, who’ve had multiple diagnoses would take this. Am comforted that it is resonating with folks.

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  2. Thank you so much for this post. Recurrence is something I worry about. And though I try to keep it in the back, rather than the forefront of my mind, it’s always there. I am grateful that, for now at least, it remains only a concern, but I am saddened that is not the case for so many, and that there’s so little understanding of what it means. Thanks again.

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  3. A wonderful post. A few things really struck home for me. First of all, a second cancer is in no way easier than the first. I have had two completely different ones with completely different treatments more than 25 years apart. Cancer the second time in some way made me able to be more confident in decisions to take care of emotionally but just because I had been down that road before, it didn’t help in a lot of decisions.

    Also, if one more person says something to me about a treatment that will make me better, I might have to resort to violence. I have RA, fibromyalgia, two cancer diagnoses, and other degenerative conditions and my health is never really going to get better. A treatment can make me feel better for a bit but I am never going to be cured.

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    1. Yep, I can see how you’d wanna resort to violence. That’s the thing isn’t it–people are so used to a beginning and end, so when things like metastasis or chronic life-long conditions that will require never-ending treatment come to their attention–well, it is just beyond their scope. Thanks for commenting.

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  4. Great post. I had childhood bone cancer at age 14 (treated with chemo and surgery), with no evidence of cancer for over 20 years. Then, in the summer of 2013, at age 37 I was dx with metastatic lung cancer. Is the second time easier? Ha. I was petrified when I got my diagnosis, because it felt like “welcome back to hell!” That said, the experiences have been totally different, largely because treatment for stage IV is totally different, as you explained so well in your post. The one upside is that treatment has changed over the past 20 years, we are making steps in the science. Regardless, that person who said it will be easier had no idea what they were talking about! I don’t think it is ever easy to be told you have terminal cancer!!
    If you are interested, I blog over at http://lil-lytnin.blogspot.com

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    1. How awful to get sucker punched after so long! But you are right, the treatments are better since 20 years ago.
      Yes, I think most people who do not have cancer have no idea–and the thing with this person, terminal did not enter her mind. It does not seem to occur to people that it can be different when it returns. The assumption is that if it was early stage before, it will be that way again. I guess that ignorance is what gets me. Sigh.
      Thanks–and thanks for sending the link I can check out!

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  5. Thank you. Your insight is wonderful. I’m a metster.
    People, even family, try to put my cancer out of their thoughts, but daily meds and side effects never let me truly do that. (But, you can’t dwell on it constantly either.) Every new recurrence seems to shock them – “but you were doing so well!” (sigh)
    Whether your metastatic treatments happen to be physically harder or easier than the first go round, it is always emotionally harder to realize there is no end to those treatments, that you will miss life events for children or grandchildren others take for granted, that your death will come years sooner that you once expected.
    I’m having real problems with the trend of calling metastatic breast cancer chronic. I have a thyroid condition. It is chronic and progressive, but I just stay on top of it with blood tests and take my med. People live into their 80s and 90s with it. I know people with RA. It progresses. If they run out of effective meds, it disables.Definitely worse than my thyroid problem, but they still get to see their grandkids grow. But, MBC, you live a few years, go through a progression of meds, and then it kills you. That just does not fit my picture of chronic.

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    1. Once again Elizabeth J., you’ve made a wonderful thought provoking comment. I’ve read a few other similar frustrations with the idea that mets is classified as a chronic illness. I can see the reason why it gets bundled–both require treatment for the rest of life. But, yeah, most chronic illnesses even if they progress, are not fatal like metastatic cancers. And yep, bundling the two together with this crucial difference is another way people get confused about the real result of metastasis. Thanks for commenting!

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  6. Hi CC,
    Wonderful piece. I love it. I know what you mean about hesitating to write about mbc. I have ‘sort of experienced’ mbc via my mom’s experience, but even with that, I wonder if I should be writing about it and sometimes worry if I’m saying something which might be offensive or hurtful in some way to those who are metastatic. But at the same time, I’ve learned that those who are metastatic, are actually some of the most supportive people of all of my efforts. They amaze me in so many ways. Thanks for the terrific post. Sharing too.

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    1. Thanks! It was hard to write. The addendum was added after Knot Telling mentioned somewhere how hard it must be for those of us with early stage/NED to have this hanging over our heads. It made me worry that I should not be complaining when I have comparatively less to complain about. That was definitely not my intention! So I am glad that so many have understood what I was trying to express here. Thanks as always!

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  7. Thank you for your insightful article. I run into a similar problem due to a broken back that doesn’t have me in a wheelchair. You wouldn’t believe how many people ask me if walking more would help. No, walking makes it worse.

    BTW, I had stage 4 cancer 16 years ago. Here is how I got rid of it. If you have any questions, feel free to ask them below my article.

    http://kelleyeidem.hubpages.com/hub/How-I-Cured-Stage-4-Cancer-in-Two-Weeks-For-Less-Than-The-Cost-Of-A-Night-At-The-Movies

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  8. Ah yes, it sure looks easier to onlookers than it feels to we who live with mets. Whether we call it chronic or terminal, metastatic breast cancer (the disease and treatment) comes with death’s companionship.

    Even those who achieve remission or stable disease recognize the possibility of progression. And, the longer we live in Cancerland, the longer our list of dearly departed.

    I’ve been living with advanced breast cancer for over 20 years and blog about it (and conscious dying) at http://www.mylifeline.org/stephaniesugars/updates

    Thank you for taking the time to imagine what it might be like to live with mets. We need all the allies we can get.

    And may you be blessed with health and well being!
    Stephanie Sugars

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    1. That easiness the onlookers have is the thing I am determined to upset by making sure I always say the D words (death, die…) so everyone knows exactly what is at stake. And yes residing in CancerLand means loss of friends made here (see Hamster Wheel post). Thanks for sending a link, and for commenting!

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      1. Thanks for pointing me to your hamster wheel post, CC!

        Yes, we must continue to speak to the big D&D and so many smaller dyings and deaths along the way – as body parts and functions fail, as treatments fail, as hopes die, as friends falter and die too.

        This cancer survivor stuff isn’t all it’s cracked up to be.

        And the idea of putting it all behind one…well, even those with “easy” diagnoses and treatments are changed by their experiences, as you so wisely point out.

        Thanks for being part of the larger conversation.

        warm wishes, Stephanie

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  9. Blog is poignant and rings true for many. I was diagnosed for a 2nd time last year, 4/14. Was told I was stage IV met. until they did further testing. I came home and started planning out my funeral songs lying in bed at night. Probably didn’t need to do that but that’s where it puts your head. One year later, fingers crossed I’m rebuilt having DIEP flap surgery in December 2014 after a double mastectomy in May 2014. I suggest we all consider watching “The Emperor of all Maladies” starting March 30 on PBS. It will give all cancer survivors of all kind some sense of where we’ve come with this disease over the years. Hope…. we must all have hope!

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    1. Sorry so late to reply–I’ve been slacking off a little!
      I DVR’d the PBS film–listened to the book on audible while I was still in radiation back in 2011 (which means I did not retain much–gotta give it a re-listen, haha). Hope you are rebuilt now! Glad they did further testing! If not stage 4, what is your actual dx?

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  10. Thank you, thank you, thank you for writing this! So much I totally agree with and needed to hear/read!
    I had ovarian cancer, twice now, and identify so much with the “metsters” – mine was IIIC – check out the survival rates ( 😦 ). And mostly nobody who hasn’t been there gets it. But you do. Living with the ever-present fear that it will come back, and it will kill you next time.
    Thank you.

    Like

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