metastatic

A Turn of Events

Gilma Pereda, Cervical Cancer Patient

“You have a metastasis.”

These are the words that every cancer survivor fears – not only because they mean the cancer is back, but because it has spread to other parts of the body, which has the potential to make treatment a highly complex endeavor.

I was a couple of months shy of the 5-year mark of living cancer free when I received the scary news. And because life is funny that way, it happened right on Halloween, my favorite holiday. Since I received instructions to go to the hospital immediately for an emergency neck neurosurgery, I donned a realistic “ER Patient” costume that day, a neck brace and all.

How did I get there, you might ask? I went to all my 3-month, 6-month, and 12-month checkups. I followed all the post-treatment instructions carefully, from quitting alcohol and sugar to using the dilator mostly every night. I exercised regularly and practiced meditation. My last pap in October 2020 was clear.

It all started with acute pain in my right shoulder, which I thought was work-related tendinitis (I’m a graphic designer, and I use a graphic tablet daily). The pain traveled to my back, neck, and left shoulder – it felt like my joints were on fire. I started having high fevers and chills and woke up every night drenched in sweat.

I went to see my primary doctor, who diagnosed pneumonia. I finished the 10-day antibiotic treatment, but the pain continued. He then ordered special labs and scans. The inflammation markers were up high, and the scans revealed a large mass in the right lung. A more specialized CT scan showed many lytic lesions (bone cancer) all over my body, the more significant ones in a couple of cervicals, right next to the spinal cord. The delicate nature of those lesions was what prompted the surgery.

A lot happened after my Halloween adventure: I had a lung biopsy, a blood transfusion (due to dangerously low hemoglobin levels), and a few nightly trips to the ER that introduced me to opioids and the glory of morphine shots. But that way of dealing with physical pain destroyed my gastrointestinal system, so I ended up in the hospital for what felt like an eternity. Once there, I was on suicidal watch for a few days. But after my first chemo treatment, my oncologist was hopeful – my age qualified me to get a new treatment after chemo. Moreover, there was a good possibility that I could get into remission in a couple of years.

The doctors sent the lung biopsy to quite a few places for research. The results indicated it was cervical cancer. Again. I must confess I found it amusing that I had cervical cancer in my cervicals.

The journey has not been easy. The first thing I did when I was able to get out of my head was to contact a few of my Cervivor sisters. I’ve received greeting cards, care packages, soft hoodies and beanies that I wear all the time (Monterey is chilly!), and loving support, even from sisters who don’t even know me! I’m forever grateful to this wonderful community of strong women who encourage me to keep going.

I’m not officially cancer free yet, but I no longer experience the excruciating pain that comes with bone cancer. After eight rounds of chemo, most of my lesions are getting healed, and the lung tumor is shrinking significantly. As a result, I went from being bedridden to walking with a cane to going on light hikes and walks. I love my new eyelashes, eyebrows, and pixie haircut. In addition, I’m receiving immunotherapy every three weeks, so I now have the energy to go back to school, keep up with my work as a freelance designer, and enjoy quality time with my family and friends.

As October is officially here, I’m starting to plan my Halloween costume. This year I refuse to wear a scary one – I want something inspiring and hopeful. Maybe I could be a “Cervivor Advocate.” It’s payback time.

Gilma Pereda is a metastatic and recurrent cervical cancer patient located in sunny California. She is a graphic designer and translator who wants to lend her skills to a good cause – an effort to educate women and men about HPV and what they can do to prevent it, to promote vaccines for children, and to motivate women that are living with cancer today to feel empowered.

Days to weeks, months, or years?

I was first diagnosed with early stage cervical cancer in October 2012; I was only stage 1b2.  I was supposed to have a surgery and be finished with cancer.  It was supposed to be a one-time concern, no chemo, radiation, or additional treatment.  I was supposed to be okay.  Guess what?  Things don’t always work out the way they are supposed to.

In 2014, I had my first recurrence.  The doctor was optimistic we could treat the cancer and get rid of it, if we attacked it aggressively.  So, I went through multiple types of chemo and external radiation.  I had a PET scan which showed I was cancer free.  I could go back to my life.  However, that was short lived.  Three short months later I had a routine follow up scan and we found that the cancer was back and had metastasized.

In 2015, when I was diagnosed with my second recurrence, it was deemed that I was incurable.  I would live my life with cancer.  I would live knowing that my cancer would never go away.  It is something that is hard to comprehend.  Honestly, I still have family and friends who just don’t get it.  They still think that any time I go in for a checkup or scan we are going to hear that I am cancer free.  It is hard to have to continue to explain to them that the cancer isn’t going away.

Last month I had a PET scan to see how the cancer was progressing.  I shared out publicly that I was going to be having the scan.  I received a lot of encouragement via social media and there were still people who were hoping for a clear scan.  I was just hoping for a scan that showed the cancer had not spread into new areas.  Unfortunately, what I hoped for is not what happened.  My scan showed that my cancer had grown and spread.  The scan showed an increased size of the mass in my pelvis (involving the rectum) and on my supraclavicular lymph node (near my clavicle).  Additionally, there are new growths:  one in my neck, one on my trachea, and multiple on my liver.  This is not what I wanted to hear.

Meeting with the doctor was the next step after my PET scan.  I had a few days between my scan and my appointment to sort through things mentally.  When I met with the doctor we went through all of the treatments we have tried previously:  surgery (twice), Carbo/Taxol/Avastin, Cistplatin, external radiation, Avastin alone, Carbo/Taxol (again), Topetecan, clinical trial immunotherapy CX-072, Carbo/Taxol (again).  As you can see we have tried many options.  These options are not without side effects.  They are not easy.  Many times, these treatments would result in me having to be placed in the hospital for multiple days due to complications, infections, and blood transfusions.

Taking all of this information into account the conversation with my doctor moved to determining what we should do next.  How do we treat this incurable cancer?  Well, the answer is that it might be time that we don’t treat it.  We have exhausted our options.  At this point the treatments could shorten my life instead of extending it.  The treatments would absolutely reduce my quality of life, as proven by my many hospital stays.  I am a 33-year-old mother and wife.  Although I am not ready to die I know that I do not want to spend my remaining days ill in the hospital due to treatments. 

As we continued this conversation my husband brought up the idea of an immunotherapy which was recently approved for cervical cancer:  Keytruda.  My gynecologic oncologist said that it was an option, but it would not be without side effects.  We would also need to do a biopsy to see if I was a carrier of a certain tumor marker to determine if it was a treatment which would be a viable option.  I will be having my biopsy soon.  This treatment isn’t something that would cure the cancer, but, maybe it could slow it down.

One of the hardest parts of the conversation with my doctor was when I asked something I always said I would never ask: “How long can I live if we don’t do treatment?”  I never asked because I really didn’t want to know before, however, I felt like at this point it was a key piece of information when deciding what to do moving forward.  Dr. Callahan said he liked to break down the answer into three parts: days to weeks, months, or years.  We discussed that I am not at the days to weeks point, but, I am not in the years category either.  Imagine that.  Picture sitting in your doctor’s office as a 33-year-old wife and mother hearing that you are going to die without treatment within a year.  Remember that as you

are sitting there you know you have exhausted your treatment options and the best way to have a fulfilling quality of life is to stop treatment.

Honestly, I fully expected to hear that the recommendation was no further treatment.  I am pretty well versed in cervical cancer at this point; I have been dealing with it for over six years and have been advocating for awareness much of that time.  I have spoken with specialists from around the world.  Met fellow patients from around the world.  I have attended funerals of friends who were in the same situation I now find myself in.  I knew what was coming; I knew we were out of options.  It is never easy to hear though.

This was a hard message to share out publicly.  I have had to mentally prepare myself for the responses.  There are people who are going to push me to find religion.  There are people who think they are experts and know how to cure cancer without standard treatment.  There are also those individuals who will still think I will be okay.  It is hard to break the news to people.  I know people want to help but don’t know what to say.  I don’t know what to ask for.  It is challenging all around.  As far as the time I have left goes, I am going to continue living my life until I’m gone.  I hope you will join me!

– Erica Frazier Stum