Breast Cancer Recurrence, Let's Talk About It

Breast Cancer Recurrence, Let’s Talk About It

When Olivia Newton-John recently announced to the world her cancer had metastasized, the spotlight, temporarily anyway, turned to metastatic disease. This is a good thing and at the same time, maybe a not-so-good thing. It’s always good to bring attention to reality, the reality that even when diagnosed at an early stage, breast cancer can and sometimes does recur, sometimes many years later. The not-so-good part is, why does it take a celebrity’s announcement to get people talking about metastatic breast cancer?

Though I often write about metastatic breast cancer, I haven’t written a whole lot specifically about recurrence. Not sure why this is.

So, let’s talk about. 

There continues to be confusion about breast cancer recurrence. Some still cling to the myth about being out of the woods once that magical five-year marker is reached. Some still have doctors who suggest they are cured, when in fact, they are actually NED (no evidence of disease). Some claim to have “beat” cancer, a statement that always mystifies me.

What is a recurrence exactly?

For clarification purposes, recurrence and metastatic breast cancer are not necessarily the same thing. A recurrence can be local, regional or distant.

A local recurrence means the cancer has come back in the breast, or in the scar (in case of mastectomy).

A regional recurrence indicates the new cancer is in the lymph nodes of the armpit or in the collarbone area.

Metastatic breast cancer means the cancer has spread to other organs of the body typically the bones, lungs, brain or liver. This is also referred to as distant recurrence.

A diagnosis of any of these is, of course, devastating though treatment and outcomes are not the same for all. It should be mentioned that 6% of breast cancer patients are stage IV at time of diagnosis. 20% to 30% of patients diagnosed at an early stage will develop metastatic disease.

Learn more about recurrence and metastasis here.

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One thing’s for certain, after a woman (or a man) is diagnosed with breast cancer, she/he thinks about recurrence. Not talking about it does not mean not thinking about it. Of course, the frequency and intensity of such thinking varies from person to person. A lot.

I don’t actually think about recurrence all that often.

Does this surprise you? 

Sometimes I wonder myself why I don’t worry more about it. Perhaps it has something to do with the fact I am a procrastinator. Perhaps I am a procrastinating sort of cancer recurrence worrier too.

The way I figure it, why worry about something that is out of my control?

I’ve done, and am still doing, what I can to prevent a recurrence. Beyond that it’s pretty much a crap shoot.

If applicable, does your family talk much about recurrence?

Mine doesn’t.

While we do not talk about recurrence much in my family, everyone knows way too much about it because we all remember my mother’s experience. She was diagnosed at an early stage. Low grade. Her cancer still metastasized.

Broadly speaking, the greatest risk of recurrence is during the first two years following diagnosis. Certain more aggressive breast cancers are more likely to metastasize early on, before the five year benchmark. Others, like my mother’s and mine (ER+,PR+), are less likely to metastasize early on, but can and sometimes do many years later. A reader (thank you) shared this piece, Understanding the Risk of Late Recurrence of Breast Cancer.

The bottom line is, there’s no guarantee.

The five-year benchmark suggesting you’re cured is a myth that has been perpetuated for years partly due to Pink Ribbon Fantasy Land hype.

Many women (and men) do struggle with recurrence worries.

Perhaps adding to this worry (for me anyway and perhaps for you, too) is the fact that generally accepted oncology guidelines suggest not doing any scans or tests without symptoms.

This is hard for many of us to adjust to partly because for years it’s been pounded into our heads that early detection is the holy grail when it comes to “beating” breast cancer. Again, this is in large part due to pink ribbon culture messaging hype. It’s not quite that simple.

Now, we’re told the opposite. Early detection isn’t so important. No symptoms. No scans. No tests.

Talk about a major shift, right?

Now it’s more of a wait and see attitude. No wonder we stress about this!

This is why being told, just put it (cancer) behind you and move on, isn’t fully doable.

Regardless of stage, we all get on with the business of living and enjoying our lives, but getting over cancer isn’t a realistic expectation. And of course, it’s an impossibility if you’re metastatic.

Personally, I would love to be sent through a scanner once a year to see what the heck is going on in there. But this isn’t how things work.

In an upcoming post, I’ll share strategies and suggestions to help you (if applicable) cope with recurrence worries. I would love to hear from YOU.

As I mentioned in my newsletter, send me an email or comment on this post sharing how you manage recurrence worries. If you’re metastatic, we want to hear from you, too.

Learning and sharing how others cope with recurrence worries helps us all. So…

Let’s talk about it.     

If applicable, do you think about recurrence rarely, now and then or a lot? 

Again, if applicable, how do you manage recurrence worries? Specifically, what do you do?

Have you had a recurrence?

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Breast Cancer Recurrence, Let's Talk About It

 

41 thoughts on “Breast Cancer Recurrence, Let’s Talk About It

  1. What a timely posting. Six months ago I worried very little. I was living in the San Diego area and had a osteopathic oncologist and a naturopathic oncologist to give me advice and support me in all my decisions. After moving to San Antonio in December that has been flipped on it’s head. I worry all the time. Texas doesn’t license naturopaths so no help there. I could only find one osteopathic oncologist in all of San Antonio and he’s more “pharmaceutical” than “natural” so there goes that. I had a double mastectomy with chemo. My new oncologist scared the crap out of me when he said he wouldn’t have recommended chemo and if cancer comes back there’s no treatment available since I already did chemo. Did not know this before so I’m pissed I wasn’t warned of this when making decision initially. I was 99% estrogen and progesterone positive and HER2 negative; post-menopausal with 2cm tumor. So I guess I’m high risk for recurrence. I’m angry every day and just want to say forget it and do whatever I want while I can. I was referred to a great research article on PTSD for cancer survivors and my symptoms/emotions hit all the marks for meeting the criteria to be diagnosed with this. I never asked why me until now. The move threw me for a loop because I moved away from all my social/emotional support. I loved the support group I attended in San Diego and haven’t found one in San Antonio. I’ve gone to exercise classes with survivors but just haven’t connected with anyone because they weren’t there when I was going through everything. I’m actually in San Diego for the next week to attend a seminar and visit the naturopath I was seeing before moving. I’m attending my old support group today and hope some of the survivors that attend can give me some tips. I feel I’m at a crossroads of where to go from here.

    1. Laurie, I’m sorry you are struggling after your move. Remember, a move is a major life change, so give yourself time to get used to things. You are trying to make a lot of adjustments – some of which are not cancer related and, of course, some are. This will take some time. If you feel you have PTSD symptoms, I’d suggest finding a therapist to talk with about this as there is help for managing it. Many cancer patients certainly relate and are dealing with it too. As for your oncologist saying you shouldn’t have had chemo and that there’s no treatment if your cancer recurs, that’s just not accurate. Chemo is done for those with advanced cancer. You likely would not have the same drugs, but there are chemo treatments for advanced cancers, too. And him second guessing your past treatment decisions doesn’t sound helpful at this point. Glad to hear you’re back in San Diego for a seminar. I hope reconnecting with your old support group helps and I hope they do indeed offer you some tips. Good luck with things and thank you for sharing.

  2. When I read about Olivia Newton-John’s recurrence, I was hopeful that it would shed light on metastatic breast cancer. I hoped that people would learn more about it through her experience. Then I read the People magazine article, where they keep saying she is staying strong and will beat this. They mentioned it was incurable once in a side bar. Very disappointing. I wish her all the best though, because she is now one of us.

    1. Amy, I did not read the People magazine article, but I did hear about it via social media. I am so weary of the platitudes and saying such things as you mentioned doesn’t help people understand reality of a metastatic diagnosis, that’s for sure. I certainly wish ONJ all the best, too, but glossing over reality helps no one. Thank you for sharing.

  3. I had HERS2+ invasive breast cancer treated with 2 lumpectomies, TCH and radiation. I have had a hard time getting information about recurrence rates for my type of cancer. I think about recurrence several times a week before I go to sleep. Not in a panic state but more in a planning mode. What would I do, how would I treat it and where would it return.

    1. Holly, Your best source of info should be your oncologist, so keep pressing for stats, if that’s what you want. You’re certainly not alone in having those thoughts before you go to sleep. Lots of us relate to that, as well as to the planning aspect you mentioned. Thank you for sharing.

  4. I am (er+,pr+) , had a lumpectomy and radiation, and yes I think about recurrence at times, especially when I have my twice a year cancer checks. My way of dealing with the thoughts are practicing mindfulness (doing something that takes lots of concentration) or if I am in bed I concentrate on my breath, both of those things help me to calm my mind.
    I have thought being sent through a scanner once a year might be a good thing too but being exposed to even more radiation than we need to be might not be all that great.

    1. Laura, Thank you for sharing how you deal with thoughts of recurrence. It’s common to think more about it before those checkups. I still wish I had the option of having a scan once a year or once every two years. I had one oncologist who didn’t even do blood work at followups. And at the time I was having symptoms. She and I had other differences as well, so I switched doctors. The one I have now does basic blood work and that’s it. I understand this reasoning, and yet…

  5. Nancy, like you, I honestly don’t worry about recurrence. I thought I was weird, but now I know we’re both weird. 🙂 I just don’t worry about things that may not happen unless they do. That said, occasionally I’ll feel throbbing or something weird around the scar tissue. When that happens, the fear races through me. It takes me by surprise because I generally don’t think about recurrence.

  6. Well-articulated post as always Nancy. Thank you! I don’t worry a lot about recurrence either. I try to do what I can to make healthy choices, and this is also where faith comes in for me. I try to keep tuned in to my body and address concerns when needed. I do sometimes wish I could have a scan every couple years too, but I understand the philosophy behind not doing that, and the extra anxiety and false positives that can occur. My sisters and I don’t talk a lot about recurrence or metastasis fears, but we do talk some. Now that a 4th sister has been diagnosed with cancer (hers is endometrial, the first 3 of us had breast and one of those 3 also had a primary lung cancer), fear and discussions have come up more. But those are healthy fears and good discussions. I try to keep up on the latest research and recommendations, and I try to appreciate each day for the gift it is. Cancer or no cancer, today is all any of us get. Thanks again Nancy!

    1. Lisa, It’s hard to imagine not having discussions among your family members about cancer related topics since there’s so much history. I read about your sister’s diagnosis on your blog and was sorry to hear about it. I like how you called fears, healthy fears. That is such an important point. Healthy fears generate healthy discussions. Doing our best to do what we can is all anyone of us can do. Still, I do wish I could get that scan periodically. I sort of have scansiety in reverse, if that makes sense. And I don’t mean to trivialize those who deal with frequent scans as mbc patients. Thank you for sharing, Lisa. I hope your sister is doing okay. I hope they all are and you, too, of course.

  7. I also wanted to add that I have extended family, including 14 nieces, who have to deal with the family history their aunts have given them. I just spoke to one niece recently and she was going in for check-up appointments. I hear the fear and the questions in her voice. I encourage vigilance, and my mindset is I would rather know if something is going on so it can be addressed. Ignorance may be bliss, but it doesn’t last. Everyone has to be comfortable in their own approach. Any conversation I can have with a family member or anyone else where I can be open about the reality of cancer and how it continues to impact my life, our lives, is a good conversation to have. Thanks!

    1. Lisa, Thank you for your additional thoughts. My family is pretty quiet about the hereditary component. Worrying about our extended families does add another whole layer of worry, that’s for sure. I’m sure yours appreciates your open-ness very much.

  8. Just recently passed the 2-year mark with no further cancer detected in breast. I do worry, though, and pretty much regularly. Since my CA diagnosis and treatment (lumpectomy, chemo, and rad tx.) I have had tremendous increase in joint pain (back, hips, knees, ankles, hands) and low endurance for physical activity, along with extreme fatigue. I am also on Arimidex, so think some of it may be due to that. I find myself worrying about any new little aches or pains, thinking it may be metastasis. I continue to make myself try to stay involved in outside activities at church, as well as my usual home maintenance activities (housecleaning, lawn mowing, gardening, etc.), but it never takes my mind completely away from the possibility of reocurrence.

    1. Donna, Glad to hear you passed the two-year mark. Worry is normal; the key is to keep things in balance. You raise an important point about the issues that often come with the AIs are often severe enough to generate recurrence worries, too. I had a horribly stressful exchange with a prior oncologist about this very thing. Needless to say, she’s no longer my doctor. Bottom line is you know your body best. If an issue bothers you, bring it up and go from there. I know what you mean about it sometimes taking extra effort to make yourself stay involved and to keep doing activities. It’s important to stay active for many reasons, as you well know. But again, it’s about balance. Like always, right? It’s impossible to totally reign in one’s worries about recurrence. Thank you for sharing.

  9. Hi, Nancy. After my second recurrence, I was terribly fearful my cancer would return. I wanted to be scanned often because I believed catching a stage IV diagnosis “early” –there is that word again– would give me a better chance of surviving longer. (I have learned that isn’t typically the case. Turns out you just know you have the disease longer–lead time bias.) When my oncologist decided not to scan me anymore, I was mad. After all the chemo and radiation I had received, his telling me he wanted to limit my exposure to more radiation I thought were words stated simply to stop my asking about it. I figured he also knew my insurance wouldn’t agree to another scan. I soon decided that waiting for symptoms was going to be the only recommendation for me and others like me because if stage IV happens, I am screwed so scans no longer mattered. Within the 3 year time span that Her 2 positive is known to recur, there it was: a swollen lymph node at the base of my neck.
    The advice I would give for coping with stage IV is to keep setting goals. It might be to finish that quilt you started years ago, to write that book you have wanted to write but kept putting it off for so many reasons, become an advocate, volunteer, or organize every single room in the place of which you live so everything is the way you want it before you no longer can. I have pets, but if you don’t, consider a puppy. Find something, anything, that you must get out of bed to do because it means something to you, and because that goal must be done before you can’t. Hide under those blankets for a while, I did, but then set those goals and get to work.

  10. I think about it periodically, but try not to worry over it. Like you, Nancy, if I’m doing what I can to prevent it, there is little to be gained to giving up positive light in the present for the threat of a future, unknown, perhaps never-to-arrive darkness in the future. As I took an alternate path, with surgery but no radiation, no chemo, and no hormone therapy, I am faithful to clean, organic eating, daily exercise, naturopathic estrogen blocker use, as well as regular imaging and lab work. Recently I received CA test results which were excellent, and that was great. However, when I look at my bucket list, largely scheduled for retirement years, I hope I’ll have enough time for a goodly number of those experiences. Perhaps like many, I wish there were more tests for guidance. Anyone have recommendations from providers? If so, please post, as my peepers are poised!

    1. Maggie, Thank you for chiming in. I’m not sure I understand your question. Do you mean what do other doctors do regarding tests and such? As I mentioned, mine only does testing if symptoms present. Although he does order blood work every time. One of my previous oncologists did not order that. So what oncologists do, does vary. I did include a link to generally accepted oncology followup guidelines in my post, in case you missed it.

  11. I was diagnosed with Her2+ breast cancer in 2008. I had a lumpectomy followed by chemotherapy, radiotherapy and a year of Herceptin. There was no nodal involvement. Fast forward to 2014, following 5 years of clear mammograms, I am called back for a scan. They discover a hormone receptive tumour in the other breast! So not a recurrence but a shiny new version! Another lumpectomy followed by radiotherapy and now on Tamoxifen for 10+ years i am led to believe. Some days i forget I’ve even had cancer, never mind twice! I only worry about a recurrence now just prior to my annual mammogram. Life goes on.

  12. In my third year! NED! Enjoyed reading others concern and ideas. I have a good ONC. I try not to worry, keep up on what is happening in the Her2+Cancer arena! I don’t ignore what could happen, I just live each day as it comes. Thank God for everything in my life!

  13. Hi Nancy,
    I think about recurrences more often than I want to. I feel like the moment I stop thinking about it, that is when the bc will come back. It is unintentionally superstitious in my part. Now, I do have moments when I don’t think about it at all. For instance, right after a clear scan. I am able to relax for some time after that. Then when I approach any tests, that’s when the anxiety is at its worst (or when I am experiencing aches and pains for longer than two weeks). The thought of a recurrence never leaves our minds completely and it all sucks. I was told that “it gets better” after some time, but I find it gets worse for me. Maybe because I am too aware now. I continue to try the one-day-at-a-time approach. Some days are easier than others. I wish we weren’t dealing with this at all. xoxo

    1. Rebecca, Patients are often told, it will get better, regarding a lot of things. Sometimes this is true and sometimes, not so much. I’m sorry you worry about recurrence so often, but I certainly understand why you do. Sometimes I feel like I know too much, too. Oh well. Keep on keepin’ on, right? Thank you for adding to this discussion. xo

  14. I think about recurrence a lot 2 years after dx of er+pr+ low grade invasive ductal cancer. I live in France and there are no scans without symptoms here, or at least with my drs. I have anxiety peaks every 6 months when I have blood tests and even more at my yearly mammo. I was told my cancer was gone after 2 surgeries and radiation, with very little being said about the recurrence risks. I take Aromasine and will for 5 years but I have the idea that when I stop that treatment, the recurrence risk goes up…does anyone know about that? To cope better I am exercising more and trying to eat healthier, trying to reduce stress (changed jobs, which isn’t helping…may have to change again) and doing and planning things I enjoy as often as possible.

    1. Meredith, I am on the same AI. Often doctors don’t like to talk about recurrence risk. Of course, no one can see the future, so there’s that. I can’t answer your specific question about risk going up after stopping the AI; I don’t think it does, but the risk never goes away. It sounds like you are doing your best, and that’s all any of us can do, cancer or no cancer. Thank you for sharing. My best to you.

  15. I think about recurrence every day, particularly since I’m in my fifth year of aromatase inhibitors, am ER/PR+, early stage but high Oncotype risk score (I did chemo). My new oncologist (I was forced into an HMO by employer) seems more intent on going through his checklist on visits and would not discuss the articles I brought to my last visit including the now famous NEJM article that showed 10 years of AI’s (slightly) reduces recurrence risk. The article comments were informative from clinicians who pointed out the death rates were the same, and the recurrence referred to was local or regional, not distant (mets). And other articles I brought including a post from Dr. Len’s ASCO blog and Karuna Jagger’s article that questioned whether there was sufficient evidence to justify 5 more years of “low grade misery” when the percent difference of recurrence was so low (around 3%). I have had a slew of side effects, the latest being tendonitis after normal exercise so now I can’t even do that, and I was relying on occasional exercise to help boost my mood. The only thing that was keeping me going was thinking if I could make it to the finish line of 5 years I’d be done with this damned drug. Now I feel like if I don’t continue on it and get a recurrence, it will be my fault because I didn’t do enough. But if I continue I know I won’t have sex for another 5 years (a contributor to my low mood), my brain fog will be so bad I’ll be forced to retire before I wanted to, and I will not be able to get back to running, enjoying life and not waking up and going through the day feeling like I’m 90 years old. I was a vibrant, energetic professional, past marathon runner, and someone who enjoyed the challenges of life. Not anymore; I feel like my future is very limited, between fear of recurrence and wondering if I should resign myself to 5 more years of misery for a limited chance at stopping a local recurrence.

    1. Kathy, Only you can make these decisions as you know your body best and your tolerance level for the side effects from the AI. At lest you have an Oncotype DX score. I wish I had one. I understand your dilemma. Believe me, I get it. Maybe ask specific questions (based on the articles or whatever source) of your oncologist. Sometimes they do get turned off if you bring in articles. Getting specific might help. Regardless, your concerns should be addressed. Good luck. Thank you for sharing.

    1. Katherine, I’m no expert on TNBC, but there are TNBC readers who’ve left comments here and there. There are pages and closed groups on Facebook and elsewhere. Hope that helps.

  16. LOLOLOLOLOL! As a MAJOR procrastinator (see: no new posts on blog) I’m with ya….BUT I worry constantly about recurrence (every bump/bruise/hangnail means cancer is back). I wish my laziness/procrastination streak translated to not worrying, but…..

    1. CC, You’ll write a new post when you get to it. I tell myself it does no good to over-worry about recurrence and generally, I’m pretty successful at not over-worrying. Had no idea you were a procrastinator, too. LOL, indeed! Thanks for chiming in.

  17. In 2002, I had a lumpectomy on my left breast followed by radiation therapy. In 2003, less than a year later, I had to have a mastectomy on my right breast followed by chemo. Eleven years passed and I thought I was out of the woods. No so. In 2014, I had breast cancer again for the third time and had a second mastectomy on my left breast. In addition, I had malignant melanoma that year. I started going to monthly breast cancer support meetings. Each month someone new would be there and they had us tell “our story”. After a number of months, a discussion took place about whether we worried about the cancer returning. All of the women there said they never thought about it or worried about it. What? I said I did worry about it and they acted like I was weird. I said unless you have walked a mile in my shoes and have had breast cancer 3 times, you can’t possibly know how it feels. I stopped going to the meetings. I am the only one I know who has had it 3 times and it still here to tell about it! My oncologist doesn’t have any other patient who has had it 3 times. I worry about it a lot now. It’s isn’t a constant thing but a frequent thing. Every ache or pain that I have, I wonder if it is due to a recurrence. As you said, they don’t do routine tests or scans so it is just a wait and see attitude. It scares heck out of me and I am pretty convinced that I will eventually die of cancer, unless I get hit by a truck or something. Meanwhile, a friend’s husband had breast cancer several years ago. He went through treatments and was cancer free for a while but it returned. In addition, he got lymphoma. I just found out today that they are ending his treatments and he will have home hospice care. That is SOOO upsetting to hear. Life for me goes on but I do worry about recurrence often and I feel I am justified in doing so.

  18. I’m afraid of recurrences.That will be the worst nightmare.I had cancer few months back and survived because of my parents.I wanted to stop the cancer treatments but my parents continued them till the end.Thank you for publishing something like this.I learnt something from it.

  19. Hi Nancy,
    If you asked me three years ago, I would’ve said I thought about recurrence a lot. Now I think of it less, although an ache or pain sends me careening into fear. Sometimes I think I know too much about cancer and wish I was in my pre-cancer bliss. But we all know that this isn’t the way life works.

    Thanks for a great post!

    Beth

    1. Beth, Thank you for reading. Interesting how your perspective has changed, somewhat anyway. I just can’t worry about something out of my control. Most of the time, I’m pretty successful. Thank you for sharing.

  20. I had DCIS, so I had a lumpectomy and radiation. Didn’t worry too much about recurrence because the odds were so minimal (apprx 5% chance.) Then nine months later, I had a recurrence in my scar tissue. I’ve had a mastectomy and pretty sure I have PTSD. Planning on having a preventative mastectomy on the “good” side. I feel like my breast tissue is my enemy.

    1. Debra, You’ve been through a lot. PTSD is likely more common after a cancer diagnosis than we think. Have you checked out Beth Gainer’s blog? She commented here on this post, so scroll around. She writes about her struggles with PTSD. Good luck with things. You’re not alone.

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