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

Give Today For #GivingTuesday

#GivingTuesday is a glob day of giving. Today only, Facebook and PayPal will match donations up to a total of $7 million. We need your support to continue our work of eliminating cervical cancer. Our work changes the lives of those impacted by cervical cancer. Will you donate today to help us continue this important work.

Our community is the heart of our organization. Cervivor Ambassador Morgan shares how we helped her find her place.

 

“Finding My Place” 

Dear Friend,

There is nothing worse than hearing the words, “You have cancer.”  This is hard for anyone and it is especially hard to hear at the age of 24.  

There is something special about finding a community after surviving this disease not once but two times.  This community is available thanks to caring folks like you.  I hope you’ll take the time to read my story – it might even save the life of someone you love.  I’m not a fundraiser, I’m a cervical cancer survivor.  

I was your typical twenty-something just starting her life out.  I went in for my yearly well-woman exam.  I never missed my preventive visits.  The doctor’s office called me to let me know my Pap test came back abnormal for the very first time.  I went through several tests only to be referred on to an oncologist.  It was then that I received those three life-changing words, “You have cancer.”  My family and I were shocked and scared.

I went through treatment including chemotherapy and radiation.  I made it through all of it and at a routine scan appointment they told me there were suspicious lesions in my lungs.  More tests were done, and a recurrence of cervical cancer was confirmed.  Chemotherapy was started once again and after five long months I was considered all clear from treatment.

I never thought I would out live that second round of cancer but I’m glad I did.  I found an incredible community where I fit in.  Cervivor has given me the gift of using my experience to help others.  I have gained credible knowledge from various professionals to educate and prevent this disease for future generations to come.  

Today, I have purpose in life after cancer.  I have remained in a no evidence of disease diagnosis.  I’ve been given the gift of Cervivor to share my story and make a difference.  I’ve had the opportunity to sit on discussion panels to educate providers from a survivor’s point-of-view.  I’ve lobbied on Capitol Hill to ensure we have proper screening guidelines, and I’ve incorporated the knowledge I gained from Cervivor School of the human papillomavirus (HPV) into my career as a dental assistant.  I feel extremely fortunate to represent Cervivor!

I’m hoping you will join me in helping to provide this same support for women like me.  Please send a gift to Cervivor today so we can educate and prevent this disease.  As a cervical cancer patient who almost lost her life twice, I can tell you that your contribution will make an impact on others.  You will give them an incredible gift.

Sincerely,

Morgan S. Newman

2x Cervical Cancer Survivor 

Cervivor Ambassador

Cervivor Champion 2018

Donate to Morgan’s #GivingTuesday fundraiser today via Facebook or directly on our website via PayPal.

Your donation supports our entire community of cervical cancer patients and survivors – a place where we provide learning tools, advocacy resources, and an online community for women who are looking to network and thrive. Some women will choose to connect for sisterhood, while others will choose to become advocates for early detection and prevention of cervical cancer. We are working hard every day for these women who need our support now more than ever.
 
In fact, to date, Cervivor has:
  • Supported 206 women through our Cervivor School program
  • Held 10 Cervivor Schools, our most recent having taken place in Cape Cod this past September
  • Ambassadors in 7 countries, with more being added after each Cervivor School
  • Supported, inspired, and empowered 10,000+ women via our online platforms
This year alone, 13,000+ women in the US will be diagnosed with invasive cervical cancer; and 528,000 worldwide. Even though cervical cancer is now fully preventable through vaccination and regular health screenings, more than 4,000 women in the US and 266,000 globally will die this year of cervical cancer. For us here at Cervivor, that’s 4,000 women too many. Through education and advocacy, we hope to be the generation to end cervical cancer. With your continued support, we believe we can do just that.
Thank you once again for your friendship, your donation, and for supporting the mission of Cervivor.