1. What is MBC?
Metastatic breast cancer, or Stage 4 or advanced breast cancer, is when breast cancer cells that start within the breast start spreading to other parts of the body such as bones, lungs, liver, or brain. These cells have the ability to break through the breast wall and spread through lymph nodes or the bloodstream. You could be diagnosed at any stage and still be metastatic if it has spread to distant organs. Ex – you can still have Stage 2 breast cancer and metastatic disease.
With the spread to other organs, it is still called breast cancer and is treated by a breast oncologist.
While metastatic breast cancer is not considered curable, there is a possibility of experiencing periods where tests show no evidence of disease, often called NED. One could experience NED periodically and be in a stable state. I have understood so far that at stage IV, it is difficult to entirely remove cancer even with Chemo, surgery, and radiation because the cancer cells eventually stop responding to treatments, which is why it has re-occurred in the body.
The treatment goal during MBC is: to control and slow the cancer growth for as long as possible with the highest quality of life.
2. Do genes play a role in MBC, and do you know your mutation?
When the breast cells grow out of control because of a mutation (error) in cell DNA, it causes them to reproduce without stopping, making the cells malignant or cancerous. Mutations in genes can affect a person’s susceptibility to breast cancer.
Specifically, two categories of mutations — germline and somatic mutations — may increase an individual’s risk of developing breast cancer.
BRCA1 and BRCA2 – are well-known germline mutations that one could inherit from parents. On the other hand, Somatic mutation cannot be inherited and are changes that develop after birth.
I have the TP53 somatic gene mutation. TP53 is a gene known as a tumor suppressor that works like the brakes on a car. The mutation means that the gene cannot control your cells’ growth, and uncontrolled cell growth can lead to cancer. About 50% of cancers are due to this gene mutation.
An Analogy Describing the TP53 Gene
A very simplistic way to look at the TP53 gene would be to picture yourself as the TP53 gene and a plumber as one of the proteins you can control. If you have a water leak and you are “functioning properly,” you would be able to make a phone call to the plumber. The plumber could then come to your home and either repair the leaky faucet or you could remove it completely to stop the water leak. If you were unable to make the call (analogous to a faulty TP53 gene), the plumber would not be called, and the leak would continue (analogous to cancer cells dividing). In addition, you would not be able to turn off the water, which would eventually flood your home.
Once your home is flooding, the faucet may then take on a life of its own, preventing you from turning it off, preventing other plumbers from getting near, speeding up the flow of water, and adding new leaky pipes around your home, including some that aren’t even connected to the initial leaky faucet.
https://www.verywellhealth.com/the-p53-gene-its-role-in-cancer-2249349
3. Did you do a genetic test, and how did you learn about your mutation?
After my initial diagnosis in 2021 for breast cancer, I did do genetic testing. My test was negative for the BRAC genes and many others. With my cancer reoccurrence, my biopsy was sent for foundation medicine testing to look into the mutations inside the cancer cells. These tests use comprehensive genomic profiling to find the mutation, which can help the oncologist treat cancer in an advanced stage. TP53 has a poor prognosis to Chemo medicines, and one of the reasons why the cancer cells could resist the treatment from last year and re-occur in my case.
4. Where has your cancer spread and What is your current treatment?
I am undergoing a combination of chemotherapy and immunotherapy. The most common locations for MBC to spread are the liver, bones, lungs, and brain. For me, cancer has spread to my peritoneal layer in the abdomen, liver, and some areas on the backbone. I also get bone-strengthening medication periodically to keep the bones strong because of the spread to the bones. I hope to be strong enough to take the medications as long as possible and control the side effects of the potent medications.
I am prone to infections with low immunity, so I also take antibiotics depending on the infection. Ex- with Hysterectomy, I am susceptible to UTI and have already been hospitalized twice.
5. How many more rounds of Chemo? When will your treatment end?
With stage 4 – I will always have cancer; there is no end to treatment. There will be ongoing treatment to keep it under control. I may look fine, normal, fitter than ever, but my body is fighting daily to survive. The picture on this page was taken 10 days back on the day of my birthday, and that night ended with me throwing up 4-5 times. I get fatigued doing small tasks and need a lot of rest to return to regular activity. Mood swings due to anxiety and medications also adds to it. So even though I might look like myself but not feel like myself.
My team of doctors includes – breast Oncologists, a urologist, a general surgeon, a gynac oncologist, a radiation doctor, a Gastro-Intestinal specialist, and a lymphedema physiotherapist for now.
The treatment cycle is ongoing with medications, scans, managing diet, etc. My calendar sometimes is busy managing the appointments. We do not have a single patient portal to get all the information, so reviewing different portals after doctor visits and keeping a tab on them is also time-consuming while Robin manages all the bills.
I detest entirely saying this because I have always been a problem solver. I wake up daily with a positive mind, but it’s terminal, and I will not always be strong enough to fight and win it. It all depends on how the disease progresses – slowly, quickly, or in a stable state.
6. What was your reaction when you heard about your MBC state?
Devastating, the sky is falling, my whole world started crumbling, etc., would all be an understatement. We were unprepared once again to know what was coming our way. The doctor did everything right in letting us know the outlook as a patient in stage 4. I wanted to cry my lungs out but found some strength to ask my doctor dumb hypothetical questions like how I should share this news with my 13 and 10 yr old girls, my aged parents, and sisters. It was heartbreaking to see Robin, my partner in crime for 29 years, cry in front of the doctor. He is usually the more composed person between the two.
I am thankful, though, that eventually, after a few days, Robin helped me scream at GOD, the universe, to release my emotional turmoil, and he was just so so strong and listened patiently when I vented it out.
I also shared with family and friends that evening, and tears did not stop rolling down that day. The fear of leaving behind a world of loved ones made me call them, and my expectation to deal with my situation spontaneously has been one of my most insensitive random acts to date. My sincerest apologies to my family and friends for my immature conduct.
7. How is your spouse Robin doing?
As a caregiver, it’s a never-ending job; he has no off days. He is always on top of things with me, the kids, and his work. I believe he suffers silently, and I am pretty sure he is stressed and exhausted about my condition, but we don’t discuss this often. I also suggest reaching out to him to know about his well-being – don’t ask him again about me. I have been transparent about my health and mental condition through my blog and messages. A hug or a happy hour outing might go a long way when you meet him.
8. Do your children know about your condition, and how are they doing?
We have always been transparent with our kids about my condition. They were honest about their fears, which helped us address them to the best of our ability. Although it was a difficult day when we shared my new diagnosis with our kids, they are also giving us the strength to fight this war with cancer. I am very proud of how they handled the news and continued support.
9. How are people around you reacting to your situation?
I was told that at most times, I may be in the situation of comforting others. I have also realized, trying to help them at times can be emotionally exhausting for me, and I have learned to say – This is not helping me right now.
Although it is uncompromising news, I must say that my parents have handled it very well. My mom continues to give me her inherent strength to fight, and my dad shares his optimism. Seeing the positivity, rooting, and outpour of love and prayers from my sisters, Robin’s family, cousins, and friends have been unreal.
Some reach out to me with questions/concerns, while some find it tough to engage with me. I hear they just do not know what to say or ask. I do not have any expectations and would recommend they reach out to me just like before and not ask anything about my health or anything that makes them uncomfortable. Lastly, I take it as a sincere offer when someone tells me they are there to help and we are already taking or will take their help as needed.
10. Are you in grief about life with your condition? How are you coping with it?
I am not sure if it is grief or a feeling of unsettling. The first thing I did, along with discussing my treatment options with the doctor, was to take a leave of absence from work. I fear losing my independence, energy, and the possibility of not being around for life’s important events. With the metastatic news, cancer definitely has become the central point of focus. My priority has shifted to managing my health – SELF-CARE, balancing my time and energy.
I would say the grief started for me with Guilt. That’s when my doctor comforted me by saying I had this cancer because I am a woman and have breasts. I also learned that it is common for one to feel sad, angry, scared, or lonely, sometimes simultaneously. The grief is usually short-lived for me, and again I am normally good the entire day, but some nights, I am afraid, depressing thoughts come to my mind, and on those nights, Robin has been terrific support in helping me manage my emotions.
I feel better when I express it rather than holding it up. I have a support group where I do share my feelings periodically. Also, with my current condition, the threshold for happiness is low – I just want to be Alive and Functional!
11. How do you spend your time?
Family time, doctor appointments, and reading about cancer articles, diet etc.
Watching late-night shows by Trevor Noah, Stephen Colbert, John Oliver, and Jimmy Kimmel.
Listening to music, reading books, write my blogs, catch up on the news, and catch up with friends, colleagues, and mentees.
I do my peloton workout 4-5 times a week and cook some of my family’s favorite meals during my good days.
Going for grocery shopping with Robin, visiting our family favorite restaurants ( I stick to my diet though) and on good weather days, to watch the soccer games of my girls.
12. What does your diet consist of now?
This diet is based on my research and contains no spices or fried food. I also stick to minimal seasoning. I do not know how much it is helping me manage cancer, but it gives me enough energy to carry out my daily routine and deal with the side effects of Chemo. With the chemo treatment and hysterectomy, I am also in a post-menopausal state, and this diet helps me manage the hormones going suddenly wacky.
13. Have you taken a second opinion?
Yes, at Memorial Sloan Kettering in NewYork and MD Anderson in Houston. Both the oncologists from these hospitals are in touch with my oncologist in Austin.
14. Have you considered alternate medicine? What about clinical trials?
I have not opted for alternate medicine yet. Clinical trials are experimental, so switching to clinical might be appropriate if one doesn’t respond well to proven medications. There are a couple of ongoing clinical trials in that I could be a potential match, but the doctors would first like to see my response to the current second line of treatment.
15. How has your life changed? How are you managing to stay positive?
A few months back, my focus was on balancing home and work. Being a mother of young girls busy with after-school activities and having a full-time job with a lot of travel kept me active. Breezing in and out of airports worldwide came naturally to me. With my health condition, I could do only one task at a time during my recent flight travel. If I am well rested, I can engage with my kids to learn about their day when they return from school. My daily routine is to monitor my bowel movement, check my weight, and measure my abdomen line daily to ensure the liver is not producing ascites. I need about 10-11 hours of sleep on most days. That’s the hard truth, but I have a life; I am mobile and have a functional brain to track all these, and writing about it is my instantaneous success for the day.
16. What troubles you the most during the entire breast cancer journey?
There are 17 types of breast cancer and multiple different mutations and stages. It is the most researched cancer with high survival rates. 30-34% of breast cancer, be it at any stage, will eventually come back as metastatic, and there is still no cure for MBC. Still, in most cases, one does endure an extended treatment plan with Chemo, surgery, radiation, and ongoing medications for multiple years. Everyone’s body reacts differently to medications too. While one can choose to live without boobs, breast cancer is a visible organ for someone to lose, and even with reconstruction, it is never the same. Most people know someone involved with breast cancer and have probably even seen them recover. While the positivity helps, many generalize and say – You’ll be fine, without putting much effort into understanding the condition of the woman they are engaging with. It is consequential with changed priorities for me and my immediate family. I am sure it is the same for so many out there battling breast cancer.
17. What not to do when caring for a loved one with metastatic breast cancer?
I believe the response differs for each person depending on their financial, mental, and support system. My recommendation would be to do some reading to help your loved one depending on where they need help.
18. What would you like your friends and family to do for you?
Life has changed, but I still enjoy some gossip, a lunch/dinner outing, and talking about movies and online shows. It helps when other things stay constant. Sometimes, even with everyone around, it feels lonely because the conversation concerns cancer and my treatment. Many times, people ping me asking about my health, but when I ask them about their life, now they don’t feel they should share it with me. Please do not feel guilty about sharing your holidays, parties, headaches, or colds. These are the things that got us connected. I would appreciate it if I was not viewed only through the lens of breast cancer.
19. How are you comfortable sharing your experience? What is making you write about your journey?
A firm believer in having just one life to live and living it to the fullest – I have always been integrative and open to sharing my life experiences. Maintaining the privacy of my family and friends, although I share pictures, is a conscious decision to not use anyone’s name in my blog other than my husband, Robin. When I got diagnosed last year, I found very few Indian women who had shared their journey-making it difficult for me, family members, and Indian friends to navigate. I wish some of my closest people had shared their cancer experiences with me. Although I was heartbroken with my cancer coming back, I want to continue writing with the hope that it will help someone somewhere to manage their health and mind during one of the most challenging times of their life. I want my kids to be proud of me, knowing that their mom was a badass, sassy, and firebrand when they grow up and read my blogs.
20. About the blogs
I started writing my cancer journey blogs from June 2021. The opening page blog, coping with cancer, breast cancer diagnosis, waiting game – drinking from a firehose, bulldozing phase 1 chemo, chemo phase 2, preparing for mastectomy, Double Mastectomy, Radiation – all were part of my Triple Negative Stage 3 cancer diagnosis.
The FAQ and others are written during my MBC cancer diagnosis and treatment.
This FAQ was written on Sep 27th, 2022, and these are my feelings today. It could change based on my health, and I plan to update this page periodically.
Let me know if you have questions that I could address.
Breast Cancer Journey 