Cancerversaries and the looming shadow

[MelissaEppardCoach]

As a TNBC survivor, the 3 year mark feels significant. I will see my breast surgeon for my annual checkup next week. There is way less stress and re-traumatization going back there now as compared to that 1 year visit, and in a way it almost feels like this visit is perfunctory. Still, I can't help feel a little of that old tension sneak in. I'm wondering if the more senior BC survivors on here can tell me, is there ever a time when you feel like that shadow looming in the distance really dissipates, where you are no longer looking over your shoulder waiting for cancer to strike again?

[Hidden]

I don't make it my #1 worry. I have to go on living. I am retired and more concerned about enjoying life than thinking about BC recurrence. My sister worries about it all the time. I keep it tucked away.

[BklynCatwoman]

Congratulations on your anniversary! I don't think you ever stop looking over your shoulder but the fear gets less with time. I only have 4 years under my belt. But the only time I get really scared is right before a checkup.

[caren422]

Just hit my three year cancerversary in January 17. I know that I have had a smooth journey-[DCIS/Stage 0, lumpectormy, 15 days of radiation and deliberately decided against taking any "drugs"(AI or tamoxifen) I had a second lumpectomy at year 2 and she took the time to call me and let me know that she was sure it was scar tissue, but worried that it might be DCIS and wanted to be schedule a surgery to be sure ] Maybe my anxiety is lessened because I saw my surgeon every three months and had mammos every six months for the first two years. Now and for the rest of my life--I am in my late 50's, I will see her every 6 months and have treated breast mammos every six months two and bilateral mammos every year as well as bilateral breast MRI's every year. I just saw her on Wednesday of this week. She looks me in the eye and talks to me before her examination. I feel that she cares about me (asks how things are going and how was my spring vacation and tells me that her twins just turned 12 and how she is not looking forward to them turning into teenagers next year.) She takes pleasure in telling me that everything looks and feels fine (and at the end of our 15-30 minute encounter names the month she will see me next).

[MelissaEppardCoach]

Sounds like you are in really good hands!

[IGotSunshine]

I worried incessantly about a recurrence the first few years after my breast cancer diagnosis. Eventually, I got over it--when my parents had a cataclysmic health crisis: My mother had a stroke one morning and was hospitalized, and that afternoon when my father was on his way to bring her some things from home, he was hit by a bus. Ever since then, my focus has been on their health rather than mine. I don't recommend this as a solution, but it worked for me!

[MelissaEppardCoach in reply to IGotSunshine]

Wow, I'm so sorry to hear about your parents. What a heavy load to carry. I do feel like that fear has lessened over the last 2 years. It's like at first, every cold or toothache carried the additional fear of being cancer related, but then slowly that lessened, and now a toothache is a toothache, a headache is just that...

[CancerkickerKathy in reply to IGotSunshine]

Not exactly the same but my bunny has been pretty sick the last few months and shifting my focus there has taken the cancer off my mind.

[CancerkickerKathy]

I think my biggest fear is reoccurrence. Every time I see a post of someone's cancer coming back I think " that could be me" my surgery was less then 2 years ago. I am almost 1 year post chemo. I really don't know if I would go through all the crap again. Best wishes to you. I hope all turns out well.

[MelissaEppardCoach in reply to CancerkickerKathy]

And to you as well Kathy. Mostly my way of coping is to stay so busy and focused in the present, but that has a way of catching up to me, making me feel run down. I live like it's never coming back and like it's most certainly coming back, like nothing can be taken for granted and time can not be wasted. Does that make sense?

[CancerkickerKathy in reply to MelissaEppardCoach]

Makes perfect sense.

[Scarey4]

I think we have good days and bad days but as a stage IV patient, myself, it can be hard to not to be looking over your shoulder. It doesn't go away but I think the thought and then I come back to center and stay into today, one day at a time and today I am NED, no evidence of disease, and I am ok.

[MelissaEppardCoach in reply to Scarey4]

It really is and always has been one day at a time, but most of us don't know it. Cancer really has a way of striping that veil away. The illusion of impervious invulnerability is gone. May your tomorrows continue to be NED!

[kduck in reply to Scarey4]

Hello!! Are you still neds? What type of treatments are you taking? How often do you take scans? I'm sry for so many questions, I'm meds and trying to keep going for my children, I still hv good and bad days. I was dx Nov 2017 w breast cancer spreader to bones only. I feel great, I'm still working full time. I just feel like I can't put cancer behind me without wondering will or when will it come back.

[MelissaEppardCoach in reply to kduck]

Hi, I'm sorry I missed your message until now! I have no evidence of disease, and opted not to take Tamoxifen because my cancer was triple negative. I totally understand that looming cloud of uncertainty and know how intense it is juggling motherhood and work and self care. How are you doing now? For me, having the support of other cancer survivors my age has been so huge in normalizing and airing out my worries. I didn't have time for a support group while undergoing surgery and treatment, but post treatment and even still, I enjoy attending my local monthly Younger Women's Cancer Support group. There are online support group and coaches too. I do coaching work with survivors and previvors. I've done a lot of writing and reflection on my cancer experience, and you might enjoy some of these entries like this one. Sending you love! melissashealinghope.com/201...

[kduck in reply to MelissaEppardCoach]

I'm doing good, like you I work full time and I'm a mother of 2, I don't have time to do support groups and I might text on a topic. I do call share when I'm having a bad day. I'm in remission but my mind still wonders. I've been reading about the vaccine, I'm so excited about that. Thanks for responding to me. God bless you

[BklynCatwoman]

I always try to focus on the positive even with anniversaries. They're both happy and scary--I tend to remember blow by blow, step by step, where I was on a certain date: April 25, the date of my diagnosis, Mother's Day, the last one before my surgery when I was "whole," May 15, the date of my mastectomy, July 8, the date of my first chemo, September 9, the date of my last chemo. As BC survivors, we can't help this.

But I try to rejoice in the fact that I'm still here. Even with the fear. I'm hormone positive, not triple negative but I think the feelings are very similar.

I'm going to repost below an essay that appeared in Ravishly couple of years ago called "Ticking Timebomb" about my wrestling with these emotions. I hope it helps. I was brutally honest about my feelings and fears in it.

Here's the link: ravishly.com/2015/07/07/tic...

And here's the essay in its entirety:

Ticking Timebomb

by Catherine Gigante-Brown

(Posted on Ravishly, 7/7/15)

Sometimes I feel like a ticking timebomb. I know I shouldn’t, but sometimes, late at night, in the pitch black, when I can’t sleep, I do.

I know it’s better to think positive, and I’m pretty good at being my own personal cheerleader. But two years and counting since my breast cancer diagnosis and surgery, and 18 months after my chemotherapy ended, I can’t help but think, over think.

I’ve taken all the precautions I can. I’ve become more conscientious about my diet and exercise. I religiously pop my Arimidex every morning to keep my estrogen level at bay since it was this girl-hormone that fueled my cancer in the first place. I take lots of vitamins. But still, that’s no guarantee.

I go for checkups when I’m supposed to: every three months to the oncologist and every six months to the breast surgeon. I go to SHARE support group meetings to bolster myself. I try to get enough sleep, even with the occasional sleepless night of dread.

I don’t have any symptoms, but still, I didn’t have symptoms when I was first diagnosed. I couldn’t feel the lump, smaller than a dime, even after it was pointed out to me. It turned out that I had not one but two types of breast cancer (DCIS—ductal carcinoma in situ—and invasive carcinoma). When my surgeon very prudently removed the entire mass during the biopsy, the margins still weren’t clear. Then I had a mastectomy with a chemo chaser for three horrific months, just to be sure they got it all. P.S. they did.

For the most part, I feel confident. I’m a one-woman breast cancer survivor pep squad for others as well as for myself. I proudly flash the cherry-blossom tattoo I got more than a year after my surgery to mask my pancake-flat left side and cover my mastectomy scar when reconstructive surgery failed.

To inspire others, I’ve posted pictures and my story on Pinterest as well as on Why We Ink. George Takei called me “creative, courageous and truly beautiful” when he reposted “15 Tattoos That Transformed Breast Cancer Scars Into Artwork.” (I’m # 9, by the way.) Plus, I’ve written extensively about my experience for sites like Ravishly, The Huffington Post, The Mighty, Better After 50, and Australia’s The Glow, in the hopes of helping my BC sisters across the globe.

But in the back of my mind, there’s always the “what if” factor: what if it comes back?

Being diagnosed in Stage 1 like I was, the stats tell me that my chances of recurrence are only 14 percent. Only. At first glance, that seems like pretty good odds—until you imagine standing in a roomful of 100 women and picture 14 of them disappearing.

Mine is not an idle fear. It’s a reality. It seems like every other day I hear about breast cancer recurrence or worse, someone dying after their second bout. A family friend I grew up with…my haircutter’s mother…a neighbor. When breast cancer comes back, it comes back with a vengeance, almost like it’s pissed off about chemo. Often it isn’t discovered until Stage 4 and has gone into the bones, lungs, and beyond.

The five-year cancer-free anniversary is a huge milestone but for many estrogen-positive women faced with recurrence; if it comes back, it generally returns right under the five-year threshhold. Will I be one of them? There’s no way of knowing.

Instead of curling up into a hard ball of anxiety I’m doing just the opposite. I’m throwing myself into my work, writing at a breakneck pace. At 55, there are so many books I still want to do, so many stories I need to tell. I want to live to see my son graduate from high school, from college, dance badly at his wedding, hold my first grandchild…

When I wonder if I should get those crazily expensive Patti Smith tickets (she’s not getting any younger and neither am I!), I usually just say “Screw it!” and go for it, remembering how simultaneously drained and wired I felt getting a chemo infusion, how I promised myself that I would deny myself nothing if I lived through this.

Sometimes I feel like I’m dancing as fast as I can, trying to outrace cancer, to outpace it, in case it tries to visit me again. Maybe this time, I can outsmart it. Maybe this time, my body won’t be such an agreeable host.

I try not to live in worry. I try not to dwell on it. But there are times when I feel like a ticking timebomb. I guess I always will. But that’s better than the alternative—having the timebomb explode and not being here at all.