Home > Collective Diary > 1 year of TNBC survivor
Disha P. on September 6, 2016
I was Diagnosed with:
Triple Negative Breast Cancer
Employment Status:
unemployed
Gender/Age:
Female/30
Type and Description of Treatments:
“Triple negative” breast cancer refers to the prognostic factors of breast cancers whose cells have tested negative for hormone epidermal growth factor receptor 2 (HER-2), estrogen receptors (ER), and progesterone receptors (PR). Approximately 10-20 percent of breast cancers are triple negative, and it is more likely to affect younger people, with BRCA1 gene mutation. Fortunately, I escaped from BRCA 1 mutation and felt great relief for my daughters being safe and not genetically mutated. Thereafter, I was acknowledged about the treatment for TNBC – 6months of chemo(FEC-T), Lumpectomy followed by 6 weeks of radiations.
How do you feel today?
My name is Disha Patel, a young mom of a two beautiful daughters, I was healthy throughout my life-vegetarian diet, exercise and yoga were part of my daily regimen to stay healthy life. I was in the seventh month of pregnancy with my second baby and was happily waiting for her to deliver as scheduled in December, 2014 to share her birthday with my first daughter and Husband. November 14th, 2014, something was unusual about that night, while taking shower, I found a lump in my left breast. First thought came to my mind was frozen milk ducts as explained by mom but who would guess a bump with a lump, especially “when you are in your 20’s you think you are invisible”. However, I called my gynec, the very next morning (Nov 17th,2014) and went for an ultrasound. I was told at that moment that everything looks fine however they referred me to a breast surgeon. I drove back happily calling my husband and mom on my way home, suddenly I took ramp to nearby parking lot and stopped my car, ‘wait a minute’, sometimes you have to listen your instinct, yes I called the BS (breast surgeon) to schedule an appointment but was told to wait until my due date and then see her. I still remember my counter argument of getting the soonest appointment possible. I saw her next week on Tuesday, BS examined me and asked me to do biopsy and ultrasound same day itself.
Once I was done with the biopsy and ultrasound, I left hospital and was informed that it will take couple weeks to get my biopsy result but within 24 hours you should be expecting a call regarding your ultrasound result. Ignoring the fact ‘Anything is Possible’, I headed towards my husband’s office to pick him up, I was waiting in parking lot and received a call from BS, her voice was in grief, ‘Disha, I am sorry but you have a breast cancer’. That moment I felt setback worrying for the baby I was carrying, suddenly tears rolled down my face and my husband came asking me,” Are you okay”. I told him, “it is the ‘C’ word”. We both were utterly shocked by this news, just cannot accept it. “how is it possible? No! Not you baby” he replied in shocked. With lot of COURAGE we went back to see oncologist, she explained in detailed about the size of tumor being increased from last week ultrasound I had with my gynecologist. On comparing, it was assured to be the most aggressive cancer with third grade which crossed from stage 1 to stage 2. Pregnancy hormone is food for cancer and was asked to schedule a C-section by tomorrow to deliver baby. I called home to inform about the cancer but being frolicsome and prankster, they hung up on me saying. “what nonsense?”. I went home and showed report telling them the whole scenario, staring at me my mom and sister thought why I have to face all the odds of the human life… I called my dad and in-laws back in India that I am scared and just not ready to accept this situation. All of them flew to states in 2 days, meanwhile here I had a c section delivering my beautiful and healthy baby Reyna. All thanks go to almighty, who had shown the mercy on my child. Looking at her first sight I felt some extravagant energy going through my body indeed the feeling was miracle and life savior. I took her in my arms and decided to knock down this fight just for my daughter. I got discharged and the very next day while doing CT scan of my body at west Houston hospital, I started shivering and shaking my whole body, director of laboratory came watching me in the camera saying, “R u cold? Do you need blanket?” My husband thought I am playing one more prank and asked me to stop embarrassing him. I literally started shaking my whole body again and passed out in half an hour, I was rushed to hospital with 106-degree fever, was in ICU until I was diagnosed with sepsis, I had almost 15 cycles of shivering, fever spikes to 106-8 degree and black out. All this time caregiver told my husband, “she might not survive” we have started treatment but let’s hope. Meanwhile, I was crossing from stage 2 to stage 3 and was told urgently to schedule chemotherapy in order to stop my cancer from spreading elsewhere, that was day we were waiting for result and another slap on face when my Oncologist told us that, its ‘Triple Negative Breast Cancer’.
Triple negative breast cancer does not respond to hormonal therapy, such as Tamoxifen or aromatase inhibitors, or other therapies that target HER-2, such as Herceptin. However, my concerned was, unable to do more to fight breast cancer recurrence. Researchers are investigating new medications and therapies for this type of cancer. My only hope was my research on cancer experiences either in person or internet, I googled and came into interaction with several survivors and met families who lost their loved ones from TNBC, one thing I came to knew that Cancers that are HER-2 negative, and ER negative and PR negative can be more aggressive and more difficult to treat. They are more likely to spread and reoccur. The size of the invasive component of the tumor and the number of lymph nodes with cancer will greatly influence your prognosis and chances of survival. Doctors told me another bad news that if I survive I had an 80% to 90% chance of being sterile after my treatment (have to lose my fertility). I really wanted more children. Maybe hoping for a son to carry on the family name. I still remember that night when my husband explained me to think logically,” how a daughter is the happy memories of the past, the joyful moments of the present, and the hope and promise of the future”. Yes, they will be your reflection no matter what happens. That’s it, I make up my mind not trapping and restricting from any peer pressure(society).
What has been the most challenging thing about having cancer?
Truly speaking, if I go back and think back those 10 days going through sudden shocks of knowing cancer, delivering baby next day, getting body scan, staying in ICU for one week and then whole therapy, gives me goose bumps already. January 5th, 2016, the first day of my chemotherapy. I was petrified looking at others going through chemo around me and my heart started pounding like a horse. I slept entire chemo of 6 hours due to high dose of Benadryl. Came home with drowsy effect and felt nothing especially hearing after stories from others. Next morning I woke up with jolt of pain all over my body, bones and joints pain was like 90 year old women feel, heat in my head was about to burst like lava, I was screaming ,shouting and feeling in an exile as my hair started falling, beauty started fading away, slowly killing me physically as well as emotionally, The sun comes up and goes down, the moon comes out and fades away, I go to hospital for chemo, cuddle my kids, take them to parks and playdates , eat, work out, sleep, love my husband, but it is all different now. I have this ‘other thing’ doing all these things with me – my cancer. Wherever I go, whatever I do, there it is, always with me, my baldness, obnoxious behavior and Sadness. My last thought when I go to bed at night, and my first thought in the morning, ‘it was Inescapable’. There was only HOPE (Nothing last forever), keeping up the spirit with my support system (family, friends, relatives and well-wishers), name it and I can count on them. My mom spent sleepless night to raise my little one and toddler and my dad struggled getting several opinions from the best doctors he could approach to see her daughter alive. It’s strange having cancer, nothing around you changes, and yet, everything is different – for me. Almost 5 months have passed by and I am about to finish my chemo therapy but my body stopped responding last month, blood work seems to be sticking to its low figure not willing to go up despite of eating blood making food and there comes next psychological effect with all ambient feeling followed by great depression.
Keeping up with social life seemed to be difficult. I asked my husband to take me away from this place where I can connect myself to nature, he arrange little trip to Grand Canyon for my birthday. Looking at the abundance of beauty around I felt different for a while but my mind was still haunted by fear, and nothing seemed to be interesting. We came back thinking this to be our last trip and suddenly my ears and nose started bleeding by the time we landed to Houston, Texas, I was rushed to the emergency, I passed out with no consciousness. On waking up, I denied to recognized my husband, awkward moment for him to convinced them being my spouse. Suddenly my family came and convinced staff of me being related to all of them. They started blood transfusion based on bloodwork report. I think by now, director of Methodist Hospital came to know me, I was in his thoughts and prayers and was given excellent care. I received almost 11 calls from religious centers globally to keep my FAITH as blessing and prayers were done on name every Saturday until I survive. Reiki practitioner starting sending me reiki from all around the world. All these seems to be superficial for time being but when I look back I felt humanity and experience - universal power, since then, till date I never forget to pray and believe in this power.
I had to skip last 2 chemo due to low blood counts and being rushed to the hospital for blood transfusion each time after chemo. Considering this situation my oncologist decided to go for surgery without wasting time. Now option was for lumpectomy followed by radiation but every single person related to cancer professionally or personally asked me to opt for mastectomy, However, my oncologist was confidence choosing lumpectomy in my case. I BELIEVED her and opted for lumpectomy on June 4th,2015. As usual surgery lasted for 6 hours and recovery took hours longer than expected, finally my eye opened and felt another stabbing pain in left breast with burning sensation. My husband still reminds me of that moment, I being furious out of pain, started verbally abusing to nurses and care giver for not giving me enough dosage of pain medication. Somehow I overcome that pain and got recovered followed by few weeks. Result from surgery came to be negative and was finally cancer free. Happiness enlightened me and suddenly felt optimism.
Next on the list was radiation (explained as piece of cake by doctors and nurses compared to chemo and lumpectomy), it started July 14th 2015, I felt like playing monster game with transformers, lying on a giant machine taking me all the way up towards roof with nobody in the room and lights off, and start radiation passing for 15 minutes at each angle lasting for about an hour. If I moved even a 5 cm, radiation would crack my bone and affect my heart as tumor was located in between rib bone and heart. Damn, still remember lying on that bed with awkward position felt like an edge of sword, if this is really piece of cake then what about the dessert shop. Somehow first 2 weeks went well, didn’t really feel any side effect, so started doing yoga with my bunch of community members and felt strong, as the 3rd week passed by ‘boom’, left side became like charcoal, burnt like a fire and dried like an ash. Literally I cannot bear a piece of layer on that part of my body, stayed grounded for many weeks, despite of 6 weeks over, I still had to continue sleeping on one side(right) without keeping any layer on myself exposed to 62-degree f. I still remember kids shivering and my family was getting cold on and off. Trauma has its own agony if bear alone but loved ones suffering along, is not just painful but awful and devastating. I just wanted to recover from danger zone of ‘C’ world and survive straight for another 5 years without recurrence. Isolation was not solution, in fact that would affect me negatively and my demand for a separate residence was denied.
I was done here, is it? Nope, blocking estrogen from all the sources, in terms of diet or removing ovaries was next. In order to survive and live long I had to embrace menopause.
At age of 29, thinking of menopause itself was like nightmare, and my imagination started playing a quick 2-minute game ‘DEAL or NO DEAL’ with YUMRAJ. Of course I accepted this challenge, asking them to give me couple months before scheduling complete hysterectomy. The most difficult and challenging part came for my husband and people around me. Why them and not me because Menopause is depletion of hormones affecting every system of your body from brain to toe, which may have turned you from the best woman to the worst wicked witch. My oncologist scheduled a special appointment for them and explained in one sentences, “what if I removed your testerone hormone? how would you feel?” Same thing for a woman without estrogen is not just difficult but impossible to live with, so don’t try to judge her based on her physical or emotional behavior, rather support her and love her the way she becomes. It was eye opener lesson for the loved ones who are related to me. I felt secured and went through surgery on November 11th 2015. Oh boy! 3 surgeries fall apart in 12 months was back breaking with lot of emotions involved. Everybody thinks I have enormous STRENGTH to keep fighting any damn situation, is it really possible? I guess nobody knows Whatever I felt, being on this journey nobody would ever see that agony unless experienced.
What advice do you have for others trying to work through treatment?
I survived with all hardship and despite of this dreadful diseases conquering myself. I felt my daughters were blessed enough to be raised by their mom and I was reborn again. My mind, body and soul were totally rejuvenated with hasty memory of my past which will never affect my future no matter what. Estrogen blocking diet, yoga, meditation, bringing awareness and being proactive is hidden knowledge to live better life with trauma. Yes, CHANGE is the key, change your brain to mind your body, its excellent source of abundance, just train it and settle your perception in your subconscious mind and see the difference. Listen to your body and spare sometime for yourself, learn ways to satisfy your soul, all these took several months to recover from C-trauma.
Today as I write this blog in September, 2016, it has been almost one year being cancer free. Me and my family have gone through really rough time emotionally entire cancer treatment however I have started regaining my energy levels now and all my family members are less worried and happier about my progress. Everyone around me keeps saying that you have really made this fight easy one, and you are active as much as normal human now.
Anonymously being optimistic and keeping the will-power strong, I give hope courage faith belief and strength to all the women to thrive and provoked to fight back this deadly disease.