You’ll have to agree with me that when diagnosed with a serious illness like breast cancer, you need a positive attitude to get through it.
It's a huge physical struggle getting through breast cancer treatment, and for many women that challenge goes beyond just the physical. The sheer amount of mental hurdles that we face can drag us down at any stage of the journey.
So when you've just been diagnosed, how do you remain optimistic, when the reality is you’ve been diagnosed with the aggressive type of breast cancer - Triple Negative Breast Cancer.
For 7 years, knowing there were long term survivors for TNBC was one of the key things that kept me positive. It was the one fact that I could cling to that kept me going when things were tough.
You see, when I got that diagnosis I knew it was serious.
The emotions I felt during those first few weeks were the darkest I've ever felt in my life.
A part of me believed it was a death sentence, but the survival part of me began searching for real-life proof that it wasn't so.
Even though I'm a scientist by training, I didn't want stats. I needed a human living kind of proof.
So I searched google and found an Australian breast cancer forum (this was before the advent of facebook groups)
I quickly signed up and in the forum I called out...
"Are there any long term triple negative breast cancer survivors out there???"
But no one responded.
So I thought to myself:
"Does that mean none of them survived?"
Finally, after a couple of weeks someone chimed in and mentioned there was a 15 year TNBC survivor - but she wasn't active in the forum anymore.
That was my "AHA" moment. The lightbulb switched on in my head.
Well of course no long term survivors were gonna be in the forums - they had gotten on with their lives!
Even though I didn't manage to contact that particular survivor, knew her name or seen her face, knowing she was alive helped me immensely. Because I knew that if she could do it, then I can too!
That mindset switch ... was powerful. From death sentence to finally seeing a glimmer of hope that I can survive this, was one of the fundamental things that saved me from despair.
Fast forward 7 years later, I am a long term survivor.
I knew that I wanted to share the same inspiration with someone who's newly diagnosed and those who are afraid.
Today, I want to share my story and five other stories from women who are long term triple negative breast cancer survivors. All of us are alive and well. Some of the women, have just passed their 5 year mark, whilst others are approaching their 10th year as a survivor.
They've also kindly and selflessly shared their words of wisdom along with their pathology, treatment regimes and outcome. Even though every women's journey is different and unique, there are some things that we as survivors all share.
There are some truths that we can all relate to.
So, let's start with my story...
My journey with breast cancer started when I felt a huge lump on my breast when I was showering one night. I went to the doctor and the next day my general practitioner felt the lump and told me not to panic as it was probably just a benign lump and lots of young women had it. I wanted a mammogram to confirm and I didn't take no for an answer. This was probably the first time that I found my voice and understood the importance of being my own advocate.
I happily drove to the imaging clinic and again I was reassured there was nothing to worry about (because I was young) and all I needed was an ultrasound - no mammogram. So after the ultrasound was complete, and they told me I had to stay back for a mammogram - I knew I was in for some bad news.
I was diagnosed with TNBC in September 2010 with a 2cm lump shown on mammogram and scans showed an enlarged lymph node in my armpit. I underwent neoadjuvant chemotherapy consisting of 6 rounds of 3-weekly Docetaxel, Doxorubicin and Cyclophosphamide (TAC).
My lump had noticeably shrunk after the first round of chemo and by the 6th round, I couldn't feel anything. I had a single mastectomy which pathology showed a complete pathological response to the chemotherapy. I was also given a choice to have radiation and decided to go for it. I had a prophylactic mastectomy on my other breast during reconstruction because I tested positive for the BRCA1 mutation.
Truth #1: No matter what, when receiving your diagnosis, you'll feel blindsided.
So when I was diagnosed, I was happily planning my wedding.
No matter who you talk to - their breast cancer diagnosis always came at the worst possible time.
What was suppose to be a happy moment became a nightmare. Instead of trying on wedding dresses, my life suddenly revolved around doctor's appointments, scans, multiple hospital visits and people praying for me.
I mean who at 29 think they're about to get diagnosed with cancer? Cancer wasn't even on my radar.
This was also true for Hilary DeMitry-Perez (5 year survivor) who just gave birth to her second son a month before her diagnosis in February 2013.
She was having difficulty breastfeeding her baby when she noticed a lump. Initially her doctor thought it was a blocked milk duct, but since it didn't aspirate easily, her doctor sent a sample to be biopsied.
Unfortunately, her results came back and she was diagnosed with Stage 2 TNBC. She had a lumpectomy followed by chemotherapy which consisted of AC followed by dose-dense Docetaxel and radiation.
Hilary has no family history of breast cancer and is BRCA negative.
"There are many long term survivors who are doing well after cancer treatment. We're not always active in support groups because we're out living our life."
It's not easy getting through cancer treatment, and it's even more challenging when you have little ones to take care of. Here are Hilary's tips for managing treatment and taking care of young kids...
"Ask for help when needed. Be specific about asking what you need as often there are people who want to help but don't know what's needed. Also, manage your own expectations - it's ok to order pizza or dinner out, it's ok for the kids to watch TV if you're tired, it's ok to let the housework go until you have more energy. Do what you need to take care of yourself."
Today Hilary spends as much time as possible with her husband and two boys age 5 and 10. She works full time as a social worker and travel as much as possible. She loves going to see live music, theatre and playing Texax Hold Em Poker. She was just chosen to walk in the Survivors Parade at Churchville Downs in Louisville, Kentucky.
Hilary's words of wisdom...
"Living life is essential - spend time with supportive friends and family, engage in the activities you enjoy and do something you've always wanted to do. And don't be afraid to ask for help if you need it including seeking out mental health or spiritual counselling."
Truth #2: There's going to be speedbumps along the way - anticipate the setbacks.
Scherri Woodard was diagnosed with Stage 3 TNBC in March 2009 at the age of 43 after finding a lump in her right armpit during a breast self-exam.
Scherri had a previous history of cysts so her doctor wasn't too worried about the lump, until it grew to the size of a golf ball.
Her surgeon tried to drain the cyst, and when that was unsuccessful, they sent some samples to be tested. She was diagnosed with TNBC a few days later.
For her treatment, Scherri underwent neoadjuvant chemotherapy which consisted of 4 rounds of AC and 4 rounds of Docetaxel.
She had a double mastectomy after genetic testing revealed she had the BRCA1 mutation.
Herr pathology came back positive for residual disease in 9 out of 26 lymph nodes. Her breast tissue was clear.
When I asked Scherri how she felt getting the results of her pathology. She said:
"I wasn't too worried since I knew I was going to do radiation. I guess I just had faith that I was in good hands and would be okay."
As Scherri approaches her 10th year since her diagnosis, she has this to say to those just starting their treatment.
"Celebrate even the smallest of milestones like when you're halfway through chemo or a quarter of your radiation treatments. Go do something for yourself. It doesn't have to be much just do something for YOU!"
"I got through the tough times by laughter... lots of laughter. I have a very strange sense of humour and that is the one thing that I could count on to get me through the worst of it."
I couldn't agree more with Scherri!
My husband, then my fiance always tried to make me laugh the whole time I was going through treatment. He made me promise to him in the beginning that I was going to be a "happy cancer patient". It's true what they say that the journey is just as important as the destination. Breast cancer is a serious disease, and we can't predict what the future holds for us, but if we can still bring joy and laughter at even the most stressful of times, we can be more resilient than ever.
Jade Richards also had some setbacks during treatment but she was able to remain optimistic through out. She was 33 when she was diagnosed in February 2012.
Her tumour measured 2.8cm and positioned up high on her breast. She opted for a lumpectomy, however it turned out the surgeon didn't get clear margins and the pathology showed 2 out of the 4 nodes were positive for cancer. Her medical team went in for another round of surgery, but the second attempt to get clear margins also failed.
The two failed attempts was due to the cancer growing so quickly so her doctors decided on chemotherapy right away. After chemo (FEC + Docetaxel) Jade underwent a single mastectomy and radiotherapy. She also had a DIEP reconstruction and reduced the size of her contralateral breast.
It was only last January that Jade found out she was positive for the BRCA1 mutation. She recently had a prophylactic salpingo-oophorectomy and will soon have a preventative mastectomy on her other breast.
Even though Jade was diagnosed with TNBC as a young woman she was never offered genetic testing by her doctors prior or during her treatment.
"I wasn't aware if I was tested or not. I asked my consultant and he said I never had the test. I'm so upset because all the reconstruction I had is now ruined, I could have had the surgery all at once. I’m just glad it never returned after all these years, as I feel like a sitting duck..."
Jade is thankful to still be NED after 6 years and she has a message for those who are newly diagnosed with TNBC.
"Try to remain calm. Your diagnosis doesn't mean the worst so take time to digest what you're told. Buy a notebook and write down every single question you have. Write down the things you want or need to do. Find support, and if there isn't one you're not alone - try online support groups. They're amazing and understand your situation. Remember, we got through this and you will too!"
This leads us to our third truth.
Truth #3: Trust your intuition - be your own advocate.
I can totally relate to Jade's missed genetic testing during her diagnosis.
After the initial shock of finding out I had breast cancer, I brought up genetic testing with my own oncologist. He dismissed me and instead urged me to concentrate on the diagnosis at hand, and there'll be plenty of time to research the genetics side of things afterwards.
What he told me made perfect sense and even my breast surgeon said the same thing, but my gut was telling me to dig deeper.
I'm grateful that I trusted my intuition and sought advice from my general practitioner who helped me get a second opinion.
That second opinion saved me from having multiple surgeries.
You see, I tested positive for BRCA1+ despite being of asian heritage and having no family history of breast cancer. The outcome of my genetic testing resulted in my surgical recommendation changing from a lumpectomy with rads, to mastectomy with rads.
What I often hear people say, is that you have to completely trust your medical team.
But the truth is, the process of diagnosis and treatment is complicated. It's handled by a multidisciplinary team - consisting of many physicians, technicians and nurses, each responsible for their field of specialty.
It's not a perfect process.
Your job is not just be a good patient and follow "doctor's orders". You need to be a proactive patient.
Think of your medical team as your trusted advisors. But ultimately if your gut says that something isn't right with the advice, to speak up and be heard. Getting a second opinion doesn't mean that you need to switch doctors. It just means you're doing your due diligence.
So the important point to remember is to::
- Ensure you have all the information you need to make a decision
- Be thorough and ensure nothing is amiss from the point of diagnosis, treatment and follow up
Ask all the questions you need.
Remember, the devil is in the details.
Truth #4: We all fear a recurrence - but the feeling gets less intense with time
When treatment was over I booked a major holiday for myself and my hubby - a well deserved trip to New York City (I live in Australia so it was a big trip for us!). During the last half of the trip my ribs started hurting badly. I was devastated and hysterical the cancer had come back. Luckily the bone scan showed nothing and I was still NED.
After a couple of episodes of false alarms, I began trusting that my body was ok. It took a while for me but as time went on, I was gaining more and more confidence in planning out my life.
Marilyn Buchheit is approaching her 9th year as a TNBC survivor. She was 65 when she was diagnosed with Stage 3 TNBC in 2009.
"I do believe every survivor gets scared about this. Every year that goes by, my thoughts about a recurrence does diminish, but when you get a pain somewhere, the thought of cancer is in the forefront of my mind."
Marilyn opted for a double mastectomy with no reconstruction and the pathology revealed a 5.5cm tumour in her breast along with 1 lymph node involvement. She had adjuvant chemotherapy involving Doxorubicin, Cyclophosphamide (AC) and Paclitaxel (Taxol). She was also given an angiogenesis inhibitor Bevacizumab (Avastatin) and 6 weeks of radiation therapy. Marilyn is positive for the BRCA2 mutation.
Marilyn's words of encouragement...
"Take the time to cry and feel sorry for yourself. Then get up and start fighting for your life, rather than to worry. God has a plan for each and every one of us."
Truth #5: We do it for our family
I didn't have kids when I was diagnosed. And I share those same feelings of dread about chemotherapy affecting our fertility.
It's like we'll be damned if we do and damned if we don't.
I was fortunate to have a round of of IVF before chemo but I had a rare complication called ovarian hyperstimulation syndrome and was hospitalised because my kidneys had shut down.
Fluid had built up in my tissues and lungs and I wasn't able to breathe properly. I couldn't have been in the worst situation because now my treatment was delayed.
I'm glad to say there was a happy ending - I was able to conceive naturally five years after my treatment had finished and it only took one month of trying.
As a mom, our biggest fear is to leave our kids without a mother. With many TNBC patients being young women with young families, it's even more painful when you think you could be missing out on seeing your kids grow up. Our next survivor is Tammy Willmore and her story inspires us to keep fighting on so we can see our kid's achieve great things and experience their major milestones in life.
"My daughter was 11 years old when I was diagnosed and I thought I'd never get to see the day of her wedding. "
Tammy discovered a lump on her left breast after her Labrador retriever jumped on her chest. After a couple of days of burning pain she had a mammogram and a few days after her biopsy, she was diagnosed with a 2.5 cm tumour, Grade 3, Stage 2b in May 2008. She started her treatment with neoadjuvant chemotherapy which consisted of consisted of 3 rounds of FEC (5-FU, Epirubicin and Cytoxan) and 3 rounds of Docetaxel (Taxotere).
She felt the tumour shrinking right away and by the end of chemo, she couldn't feel the lump at all. She had a lumpectomy and lymph node dissection which confirmed a pathological complete response. She also had 35 radiation treatments on the recommendation of her doctors. Tammy has no family history of cancer and is BRCA-negative.
Tammy's words of wisdom....
"Live life to the fullest and make memories. I was such a perfectionist before cancer that I was always so stressed because of course no one can achieve perfection. I never did anything spontaneous. I didn't know how to live in the moment - cancer changed all that! I took a trip to Florida by myself this winter and had an awesome time! I'm going to Cancun Mexico on a spur of the moment trip with my daughters. So live in the moment! My messy house will be there when I get home!"
Truth #6: Healing isn't over when treatment is done.
After cancer treatment, we often feel worse off than when we started.
To this day Tammy still battles with side-effects from cancer treatment. She has lymphedema in her left arm that's managed with physical therapy and compression sleeves. She was also diagnosed with osteoporosis a year ago due to early-onset menopause caused by the chemotherapy .
"I have days that I feel 20 years older - low energy, arthritis but I try not to give in to it. I ride horses, hike, and I kayak when the weather is warm."
For me personally, I've been fortunate enough to not have any long-term physical side-effects. It's easy to slip back into "business as usual" after treatment ends. But we need to find that delicate balance between living life to the fullest and being vigilant about our bodies.
Since day 1 of my diagnosis, I've made a deeper commitment to my health. Having a diagnosis of breast cancer woke me up to the fact that I needed to invest more time and resources into my health. I know that true health can give us the freedom that we desire in our lives.
I wasn't going to survive breast cancer and be diagnosed with some other disease at a later stage. And if the time comes that I did have a recurrence, I would be in the best shape of my life to withstand another round of treatment.
I prioritise my health above all else.
Even my family.
Because I know that the stronger I am, the stronger they will be.
I hope you enjoyed reading our stories.
Although every woman's diagnosis and journey is different, there are some things that we all share.
When faced with breast cancer, we share the same emotions, worries and hopes for the future.
It's what ultimately make us human.
PS: I've dedicated this article to the 100 women who responded to my poll in the TNBC Survivor Facebook group. I wrote this for you and to others that need a little inspiration. Now it's time for me to write another article and it would mean alot to me if you can fill out the survey below to vote on the topics you want me to cover. You can submit anonymously or if you provide me with your email, I can send you emails promoting new blog posts I've written, and other useful tools and resources.