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Uzma Educates About Stage 4 Breast Cancer: Video

[This video was a stand-alone Facebook post of Uzma’s in 2017 on October 13th, Metastatic Breast Cancer Day. Read this to understand my approach to turning some of Uzma’s Facebook posts into blog posts. Below the video, I have included Uzma’s message, for which I took a transcript of the video and edited and formatted it for ease of reading and clarity. Watch the video and share Uzma’s message about metastatic breast cancer.]

Hi! My name is Uzma, for those who don’t know me. I am making this video to talk about metastatic breast cancer day, which is today, October 13th. And the reason I am choosing to make this video is to spread more awareness about metastatic breast cancer.
First of all, let me explain what metastatic breast cancer is. When people are diagnosed with breast cancer, the name means having cancer in the breast. Sometimes breast cancer goes into the lymph nodes in the armpit called the axillary lymph nodes. Based on that, cancer is given a stage.

Metastatic breast cancer is when cancer has left the breast and the lymph nodes in the armpit and has spread to other organs in the body. Breast cancer, as a disease, tends to spread to the liver, lungs, bones, or brain. Those are the typical four places where breast cancer cells tend to go.

The other name for metastatic breast cancer is secondary breast cancer or stage 4 breast cancer. With metastatic disease, the treatment goals change. The oncologists stop trying to cure cancer. Now they just want to keep it under control and manageable.

Once somebody has been diagnosed with metastatic breast cancer, they tend to stay in treatment. The only exceptions are people who have done incredibly well on treatments for 5, maybe 10 years. Then their doctors may decide that they are in remission, stop treatment, and continue ongoing monitoring.

Since there is no cure for stage 4 breast cancer, most people stay in treatment as long as they are alive. Treatment can involve oral chemotherapy pills, targeted therapies, or chemotherapy infusions. So in some way, shape, or form, the person is consistently in treatment.

The other thing is because doctors know that cancer is present, there are ongoing scans. A person goes through scans every three months. Scans may include CT scans, bone scans, PET scans, or some combination of these. The oncologists really want to see is the cancer is growing — the term they use is “progression.” Or whether it is getting smaller — they call it “regression.” Based on whether there is progression or regression, the doctors determine whether the person’s treatment is working.

The typical course of metastatic breast cancer is that whatever treatment is started will stop working at some point. It could be nine years, it could be one year, or it could be nine months. Then the patient gets transitioned to the second line of treatment.

Cancer mutates. Because it is part of the pathology of the cancer cell to change and mutate, it is tough for one treatment to work for a really long time. Now, there are metastatic breast cancer survivors who have lived 15, 17, even 20 years. There’s actually a study going on in UW-Madison where they are trying to study these super-responders to see precisely what is different about them that stay alive for so long.

The median survivor for metastatic breast cancer is three years. That is half of the patients are dead by 36 months. But there is significant variation in survival based on where the metastatic lesion is and how the disease is responding to a particular treatment. People who have just bone metastases tend to survive much longer than people who have soft-tissue metastases. By soft-tissue, I mean lung, liver, or brain.

Essentially, metastatic breast cancer is an incurable, terminal disease. And there are ways to slow down the progression. But on a day-to-day basis, knowing that you live with cancer in your body is very hard. It is a daily exercise in patience and gratitude in taking care of yourself, in reframing how you think about life. Because living with a diagnosis you know is eventually going to kill you is not a very pleasant thing.

Also, people who have metastatic breast cancer cope with fatigue. They deal with multiple side-effects. As you can see, I have got a little hair growing. It is because I am on a particular medication that doesn’t cause hair loss. But my scans may show progression, and then I will get transitioned back to chemotherapy. And I may not have hair again. So having hair or not having hair has nothing to do with whether a person is doing better or not. It just means that they are on a particular kind of treatment that allows a person to have hair.

For example, when I was on Ibrance for nine months, I had my hair. I didn’t lose any hair because Ibrance or palbociclib is a very targeted treatment, and it doesn’t cause hair loss. Then I ended up with IV infusion chemotherapy with Taxotere. That causes hair loss. So I had lost my hair again. Now I am on Xeloda, which is oral chemotherapy. And I get to keep my hair or at least grow them a little bit.

The reason I am talking about this is that people who don’t have cancer really don’t want to hear about terrible cancers. And people who have had breast cancer don’t want to think about becoming metastatic because it is terrifying. The return of cancer is emotionally stressful, scary, and devasting, especially to a young person.

Nevertheless, all of us must come together to advocate for more research funding for metastatic breast cancer. When there is a cure for metastatic breast cancer, it will no longer be scary. It is not the fault of the cancer patient if her cancer returns or spreads to multiple organs. It can happen to anybody, irrespective of the initial stage. Patients do everything their oncologists tell them to do, and still their cancer returns. It is the nature of cancer to mutate and recur.

The most famous celebrity example is that of Olivia Newton-John, whose cancer recurred after 20 years. Some cancers are very slow-growing and may recur after many, many years. Or some cancers respond to treatment completely and never come back.

Today, on Metastatic Breast Cancer Day, it is important for us to learn about metastatic breast cancer so that we can join together and push for research into cures for stage 4 cancer, or at least into treatments that can stop the progression of metastatic cancer.

I have friends whose cancers are not responding to treatment, and they are now transitioning to palliative care in hospice. It is tough because, in terms of statistics, we lose 40,000 women every year to metastatic breast cancer. That is, 113 women lost every day to breast cancer. That’s a significant number. As a community, we need to do better.

I appreciate you listening to me and learning a few things about breast cancer.

Thank you so much.

 

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I am sorry I didn’t beat cancer

Yep, sorry, my apologies, with a diagnosis of metastasis four months ago, I didn’t beat cancer.

Every one said, “You are going to beat it,” some said, “If anyone can, you can!!” They cheered me on as I endured one treatment after another and I kept fighting “like a girl.” I was told I will kick cancer’s ass and will show cancer who is the boss. I rode the wave of positivity and determination. I believed that I will beat it too. I thrived on the fantasy of the cancer submitting to my will and strength.

Songs, inspirational quotes, memes, greeting cards and stories, all led to me to the one endpoint — “beating cancer.” Being very much a type A personality, I accepted the challenge, I said to myself “I will beat cancer.” Except for one open book exam, I have hardly failed at something in life. So why would I fail at this!

However, two and a half years after my first breast cancer diagnosis, I was diagnosed with metastatic disease in the lymph nodes in my chest and some spots in my liver. Shocked and traumatized only begins to define of what I experienced. It was a very hard and exhausting process to come to acceptance.

Broken and beaten, I felt like a failure as if I let down everyone who thought I would “knock the shit out of cancer.” I was no longer the example of how stage 3 can be a success story and inspiration.  As a doctor I understood that it was nothing that I did, to bring back my cancer. But I still felt a sense of shame.

Statistics indicate that 30 percent of those are diagnosed with early-stage cancer will develop metastasis. I had just held on to 70 percent much more dearly. Medical science currently doesn’t know the exact mechanism through which cancer cells find home in other organs of the body.

The time had come to let go of being a “survivor” and on to a “thriver” or a “lifer,” the terms preferred by metastatic community since we ultimately end up not surviving the disease.

When I was diagnosed the first time, one of the things that helped me very much was supporting others with breast cancer. I did this so their journey could be easier and smoother through the knowledge and experience I had. I wrote blogs and participated actively in online groups.

Since the recurrence happened, I often wondered if I scared other survivors, if they looked at me and worried about getting metastatic cancer and sometimes I even wondered if they actively avoided me. I, the face of incurable metastatic cancer, everything that everyone diagnosed with breast cancer is worried about. The fear of dying of this terminal illness that has no cure. I have no cure.

Having metastatic illness is an emotionally isolating experience, and a lot of women I know tend to withdraw from others after metastasis because it is hard for others to understand our subjective experience…the experience of living life with an incurable, relentless illness with never-ending treatments. It is so overwhelming for others; they don’t want to hear much as it reactivates their own fears of mortality. I have experienced that from some of the survivor friends who want to keep the distance from me but I understand that they want to contain their anxieties of ending in my shoes. I didn’t want to horrify others.

I often wondered what people think when they look at me, and if and how sorry they feel for me. I imagine something to the effect of…“Oh this poor young woman with young children who has this illness that has no cure.”

Me and my metastatic cancer.

I remembered when I was newly diagnosed. The word “metastasis” used to send chills up my spine. I used to dread my Facebook feed on Mondays, which are  #metsmonday. I did not want to be reminded that my cancer could metastasize, although at stage 3 with high grade cancer cells, I knew inside that the odds of it happening are very high.

One of my stage 4 friends has lived with bone metastasis for 11 years. She gave me hope. But I still would at times try and block her out of my mind for my own sanity, so I could worry less about me. It sounds selfish but the fear of recurrence is haunting.

I also wanted denial so bad…deny that it could happen to me. I convinced myself that I am doing everything possible to reduce the chances of my recurrence. From good diet to exercise to supplements and yoga, lowering stress and getting enough sleep, and all the medications and treatments. I did all possible to lower the chance of cancer taking root within me again.

But as time went on, I also worked hard on accepting what having cancer meant. It meant accepting a life that you have no control over…a life that transitions between sweet fantasies and harsh realities. I got used to those ups and downs. I saw my friends with stage four cancer kick each day in the butt, and beat cancer on a daily basis. My denial softened gradually and I thought, “if it (metastasis) happens, I will be okay.” I celebrated every clean scan and a good oncologist visit, but the fear of metastasis lingered.

And then it happened. I got another, “I am so sorry” call from my doctor, and I was devastated. Besides coping with my illness, I was sad that I lost my “credibility” as a cancer warrior who had “beaten” cancer.  I was no longer a “success story”.

During all of the angst, I received this message from a fellow survivor whom I got to “know” via Facebook.

It said,

“Until I “met” you, I could not think of stage 4.

I’d panic, hyperventilate

Start to decompensate.

Then I met you.

You are showing me, with grace, passion and humor how this can be done.

You are something of a role model to me.

Doing this stage 4 before I do, if I do.

I’m not so afraid anymore. I have someone doing this ahead of me and I know how to do it.

If I ever get metastasis, I will have someone to emulate…and I will think of you the whole time.

Forgive me if this bugs you or hurts you. I just admire you so much and thank you and God for putting me in my life, but I am also so very, very sorry for your cancer.”

And then I realized I really don’t need to “beat cancer.” I have to however beat life at its game, one day at a time.

I am sorry I didn’t beat cancer but now it really doesn’t matter because I am busy kicking life, and showing others how to reconcile with stage 4 breast cancer.