Chiara: How I Survived Triple Negative Breast Cancer

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I found the lump on my birthday, October 25th, 2014. It wasn't a happy 43rd. August 2014 I had my routine mammogram and a week later the letter from the hospital arrived; everything was "normal." Apparently, I have dense tissue in my breasts so the mammogram didn't detect the lump. (Ladies, if you have dense tissue in your breasts – ask your radiologist - don't stop at just a mammogram!) As soon as I felt it, I knew the mass didn't belong in my body; fear enveloped me.

A mammogram, an ultrasound, an MRI, a chest and abdomen CT scan, a bone scan and a few biopsies later, I received the diagnosis of triple negative breast cancer, stage three. Triple negative means my cancer is not fueled by any hormones: estrogen receptors, progesterone receptors or human epidermal growth factor receptor 2 (HER2); it is fast growing and has a higher percentage of reoccurring in other parts of my body.

The thread throughout my cancer diagnosis was fear. It gripped me tightly in its hands and whirled me around until I was dizzy and exhausted. I felt alone in my terror; friends and family would try and ease the pain by saying "There's a cure!" "Breast cancer is the best kind of cancer to have!" and "You'll be fine, my sister/cousin/hairdresser had it and she survived!" I politely nodded my head, thinking to myself, "You're not God, you don't know if I will be that small percentage of women that die from breast cancer – it happens!" I was being realistic. I wanted my fear to be acknowledged; I longed to be heard, and held, not patronized.

The steps I took that got me through my cancer diagnosis and treatment:

  • I clearly asked for what I wanted, whether it was lentil soup, a foot massage, silently being held on the couch or phone calls from friends; I didn't assume people knew what I wanted.
  • I was my own health advocate, making the necessary phone calls to my insurance and doctors: I scheduled many appointments, second and sometimes third opinions.
  • I accepted offers from friends, family and acquaintances for accompaniment to appointments; if no one offered, I asked. Even if it was a simple test I could clearly go to by myself, I needed their company to distract me from my catastrophic thinking.
  • I got a copy of every medical report, scan, test, x-ray, etc. that was done to me. I made sure I understood what was happening, asking my doctor questions along the way.
  • I kept a diary of all of my appointments; what was done, where, and who was the ordering doctor.
  • During chemo, I relied heavily on the nurses – they provide all the caring and a wealth of knowledge and tips.
  • I threw cancer parties: a "Fuck Cancer" party after I received my diagnosis, and a "Boob-bye" party the night before my mastectomy. I'm the kind of person that needs support from my friends, so I made it happen.
  • I wore my natural looking wig when I wanted, and replaced it with hats towards the end; the wig was annoying. I did have fun at one point and bought an array of different colored wigs: I felt like a rock star when I wore them and got many compliments.
  • I posted on Facebook (that's my way of communicating to many people, but there's also www.caringbridge.org) that I encouraged phone calls and visits, and then I received them - that made me happy.
  • I made sure to get out every day, whether to run an errand, have a meal with a friend or see a movie with one, getting out and hearing people talk about their lives was refreshing.
  • I watched a lot of television, which is unnatural for me. It took my mind off of myself, and during chemo, it helped me to relax; I stuck to comedy and romance.
  • I watched Kris Carr's Crazy Sexy Cancer movie. It scared me, but it also made me feel like I am not alone.
  • I spoke to other survivors I knew and met up with them for coffee. When I felt overwhelmed, I took a break.
  • I made my cancer accessible: I answered people's questions about my health and diagnosis then I'd change the subject.
  • I bought several breast cancer books and flipped through them, with a friend, when I had a specific question; reading them alone was too scary.
  • I joined Facebook groups for triple negative breast cancer and the likes, and when I got overwhelmed or scared, I stopped reading the posts.
  • I limited googling information about my type of cancer.
  • I brought the same friend with me to each important appointment; she took notes and learned the breast cancer vocabulary alongside me. I turned to her during my decision-making process.
  • I called a cancer support hotline in New York City, SHARE, and spoke at length to a survivor on the phone. I was relieved - I finally felt heard, understood and supported! I keep in close contact with SHARE and still go to their cancer support groups.
  • Cancer support groups are monumental in my recovery: I learn a lot from the facilitators and the survivors, and I can speak my mind in a safe environment, where I am unconditionally loved and understood.
  • I was afraid to attend support groups for fear of hearing horror stories. When I was ready, I gave it a try. I listened to each woman and learned, reminding myself that every woman is different and her story will not necessarily be mine.
  • I attended breast cancer support groups in various different locations, and only returned to those that have a well-trained facilitator; some are too big or disorganized.
  • I found a local, reputable hospital that offers free classes to cancer patients and attended their weekly Mindful Meditation class, Stress Management class, Art Therapy class and Chi Gong class. I could relate to the people and I benefitted from learning techniques to relax my body and mind.
  • I attended weekly therapy sessions with my therapist, sometimes more than once a week.
  • I spoke to the oncology social worker at my hospital as often as needed.
  • I saw a psychiatrist and got on anti-depressants and anti-anxiety pills; at first I felt ashamed, but once the pills took effect, I was relieved.
  • I cried when I felt like it – for me, it came out all at once when I arrived home from the hospital, post-mastectomy: a breakdown.
  • I visited a holistic healer weekly, the energy healing was nurturing. I yearned for healing hands on my body, not those that poked or prodded me.
  • I got massages or facials regularly. At the time, someone was helping me financially, but massage and Reiki can be found free for cancer patients at your hospital.
  • I rested when I was tired, sleeping as much as needed, guilt-free.
  • I accepted help and asked for it when wanted (not just needed.)
  • I aimed to walk an hour a day; it felt therapeutic to breathe fresh air and circulate the blood in my body.
  • I drank a lot of Fiji water.
  • I ate healthy- lots of protein, greens and fruit, limited sugar and dairy intake.
  • I posted on Facebook that I wanted soup, and got containers of delicious homemade soups delivered to my door for weeks!
  • I learned which family, friends and acquaintances are there for me and which aren't. I was shocked in both good and bad ways, accepting the results.
  • I did a lot of journaling.
  • I created a cancer fashion blog, www.beautythroughthebeast.com and blog regularly.
  • I'm now giving back and reaching out to women who are being diagnosed.
  • I surround my self with positive affirmations.
  • I rid myself of toxic people and environments.
  • When I want to do something and hear a doubting voice in my head, I take action anyway! Today, I go for it. I don't know what tomorrow will bring, so I make the most of today.

Looking for more information about triple negative breast cancer?

Author

Chiara

Chiara is a triple negative breast cancer survivor.
She blogs at Beautythroughthebeast.com

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  • Maureen

    Hi Chiara, I just read your post. My sister has been diagnosed with triple negative breast cancer. I would love to send her this post however, would it be appropriate? I sometimes feel like I'm walking on egg shells, not knowing what I should say or share with her. I know this is very scary for her, but it is also scary for the people that love her. Your opinion would be greatly appreciated.

  • Beauty Through the Beast

    Debbie, Nikki, JoJoCap, Maureen and Christie, I apologize for only following up now to read comments, and thank you for reaching out!
    Feel free to email me at [email protected], I'm happy to give back any help that was generously offered to me, we are #sistersurvivors and here for each other!

    Debbie, how are you feeling?

    Nikki, I'm happy to hear I've given you hope, normal people are not aware of the different breast cancer diagnoses. You don't have to go through this alone, SHARE has offered me tremendous help via their helpline and support groups.

    JoJoCap, I'm glad you pursues your medical treatment and got the lump diagnosed, following your gut! I hop you are fairing well through your treatment, and enJOYing every second of this life we still have!

    Maureen, how is your sister? I appreciated when people were honest with, so consider saying to your sister "I don't know what to do or say to help you, please let me know." I think sending her this link, and made even my blog url may help: http://www.beautythroughthebeast.com, it's positive stuff.

    Christie, I got two to three opinions from various oncologists and breast surgeons, that helped me in my decision making. My doctors are all in NJ. I also went to stress management, art therapy, mindful meditation, yoga, chi gong, reiki, massage, accupuncture, nutrition classes, support groups to help me with my feelings and stress. All of these were free through organizations like SHARE cancer Support, You Can Thrive, Cancercare, Livestrong Foundation and local hospitals.

    Love you ladies! #carpediem

  • Nikki H

    Love, love, love this article, it's as if I could have written it myself. You've helped me feel like I'm not alone in my worries and fears, people are well meaning but they often don't understand the Triple Negative aspect and how it differs from what they know about breast cancer. I'm just starting my journey but you've given me hope on a day when I really needed some positivity from someone who's been there and conquered. Thank you

  • Anonymous

    Hi Chiara. This the first article I've stumbled upon and the only place I got information about feelings-walking around with the terror. I started chemo this week, 11 days before my birthday. There us some relief in that though.
    I still want a second opinion from msk in Nyc or Johns Hopkins who has some recognition for triple negative. Any suggestions? Still trying to accept and prepare My lifestyle and fitness are great. Stress in my marriage,and with a neighbor for three years, and with the social service agencies I deal with caused this I believe, because I felt shooting pain in my right breast, and that is where the problems are. Better stress management, clearer communication, loving words, positives, are my goals for myself now. I'm relieved to hear your story Christie

  • JoJoCap

    Dear Chiara,
    If I may say, you are the poster child for handling a very serious medical situation with grace and a joie de vivre that is pretty rare….
    I am a stage one HER pos. survivor from a March 2013 diagnosis. I found my cancer before it was visible without a diagnostic mammogram, by feeling a lump that doctors were kind of thinking I had imagined, because it was so deep and small. Lucky me, I guess. I went ahead with a BMX due to the fact that my one side was what they called 'hyperactive', with multiple cancers. This caused a kind of soreness that many people were confused by because, "cancer doesn't hurt". Like hell. It can, so I will never be fooled by that thought. That soreness saved me from a later stage diagnosis.
    The multiple cancers (DCIS, LCIS, ILC, more IDC) were found after the lumpectomy, in the lab results. How angering that was! Here I thought the lumpectomy and some radiation would do the trick. Cancer is full of surprises early on…. and I did feel like my immune system had wimped out on me! That's why my docs thought is wise to do the bi-lateral. There is a slight improvement to non-recurrence, if no statistical difference in overall survival. My thought for me, is get healthy, slimmer and improve overall survival. As I know the current trend is 'too many unnecessary mastectomies!' , in some cases, they really are necessary.

    I am similar to you in at least one very important way: I had to had information about my disease. I knew I had it before the diagnosis, based purely on research. But my understanding is many women can't go that way; they just want to work with the doctor and get their info in small doses, and kind of work it thru a filter over time. I can't do that. Like you, I needed to be my own counsel first. I learned from early childhood to depend on me, so it was a natural process to do that. Thank God, my friends and family abided by my wishes there. They waited for me to ask for help. I too was surprised on occasion by those of my loved ones that stood up and those that were unable to. I tried to look at it from their perspective and I think it helped me understand better. People are terrified of cancer, period. As a friend of mine said, after I told her it was a strange thing to find out I am not immortal, after all, : 'Well, the rest of us don't really believe that.' And speaking of nurses, who are fabulous in this process, I totally agree-one of my friends is an LPN and she did more to comfort me with rational thinking, than anyone else. That's the thing about cancer: You know something that those that have never had it do not. It doesn't make you different; it just gives you knowledge people without it do not have. So their ability to help is limited. It really is up to us to say what we need. So bravo to you!!!

    The club none of us want to belong to is rarified, indeed. I now know what to do if I'm ever asked for help. Just listen, and be there for any practical requests.

    I also learned that individual stories, especially those that may be terrifying, are not statistically relevant, however much they do matter. So they are less scary to me because of that. Because cancer, though we know fundamentally what it is, still reacts uniquely to each unique individual. Even medical labels, such as stages, don't matter nearly as much as they used to. It seems to me we now know we can impact it much more within our individual lifestyles and mindsets. Tumors can somehow get destroyed by the immune system quite on it's own, without chemical assist. The immune system will someday be taught-I really believe this-via chemicals, to always recognize those cancer cells for what they are. If there is a cure, that will be the key to unlocking it, IMO.

    Your lifestyle and mindset both sound amazingly positive. I have a gut feeling you'll defeat the 'negative' for good. I only hope if I face this again, that I can have the same strength as you. Go with God and thank you for sharing. I was blown away at how powerful your will is and how positive your approach.
    Best, Jo

  • Debbie

    You are amazing and I appreciate how you reached out to me.

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