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

Use it or lose it – Dilators

There are lots of things about cervical cancer and HPV that the public doesn’t know and understand, things I didn’t know about before I was diagnosed. I strongly feel that if people understood what cervical cancer treatment “looks” like and the long-term side effects of treatment, women would be lined up to get Pap and HPV tests and parents would be running to get their girls and boys vaccinated. When I was diagnosed with cervical cancer in 2016, I had friends and even a nurse say to me, “Well, at least you got the easy cancer. You can probably have a hysterectomy and be fine.” There is so much wrong with this statement that it’s hard to know where to begin. It is true that an individual’s treatment plan could consist of a radical hysterectomy. The implication that any cervical cancer treatment is easy and has no significant impact on women is hurtful and untrue. Further, treatment often consists of many more procedures such as chemotherapy and radiation. These treatment procedures are often damaging to the entire pelvis and leave life long side effects.

One of the treatments with significant life altering side effects is brachytherapy, or internal radiation, sometimes referred to as HDR (high dose radiation). Many women will have several rounds of brachytherapy as part of their treatment plan. The radiologist will place a ring in the cervix that will stay implanted until all brachytherapy rounds are completed. Personally, I had five rounds and was fortunate that my radiologist put me under for each round, as the procedure is several hours and includes the administering of the radiation and CT scans before and after to check on placement and tumor size. Brachytherapy is very effective when treating advanced cervical tumors that have not spread to any other major organs or lymph nodes. However, it comes with life long side effects that I would have never imagined.

So we all know that radiation shrinks things, right? I mean that’s why we do it, to get rid of cancer. However, while it’s shrinking tumors it’s also shrinking other tissue, like your vaginal walls. Unfortunately when treatment is over, radiation continues to work it’s magic…a blessing and a curse. Many women who have had brachytherapy will be given a dilator at the end of treatment by their radiologist. I will never forget the radiology nurse coming into the room on my last appointment and handing me what looked like a white candle stick. She looked at me very sternly and said, “Use it or lose it!” My oncologist had mentioned prior to treatment that I would need to use a dilator afterwards, but honestly that was a blur. I mean, prior to starting treatment I was a deer in the headlights getting set up for port placement surgery, going to chemo class, getting a chemo doctor, getting set up for radiation, getting a radiologist, etc. So, my gynecologic oncologist did mentioned this, but, I had not given it much thought. Here I was on my last day of radiation, getting ready to have this momentous occasion of ringing the bell, as it was FINALLY my turn, and all I could think about was the dilator.

After treatment, I did okay with using it. My radiologist encouraged using it every other day and to continue using it even if I was having regular sex. He insisted that without stretching the vaginal walls, that the radiation would continue to work long after treatment and the vagina would begin to close. What? I had never heard of anything like this in my life. Of course I went home and googled and sure enough there it was! Why had I never heard of this before? I made the decision then, to get cozy with the dilator because I did not want my vagina to close! Who wants that?

My post treatment scan was positive, there was still cancer present. After taking biopsies to ensure that it wasn’t a false positive, my doctor immediately scheduled a radical hysterectomy. This surgery was coming with potential risks, since I had pelvic radiation just months prior. In spite of the risks, my gynecologic oncologist was adamant that this was my best chance at being cancer free, long term. After the surgery, healing was very slow and I ended up hospitalized with an abscess in the vaginal cuff, on the verge of sepsis. While hospitalized, I had several tests to check on my bladder and kidney function. Most of these included being catheterized, which after all I had been through was really not the worst thing, but definitely not the most comfortable, especially since so much of my pain was in that entire area. The first night I was in the hospital, the nurses missed my urethra while trying to catheterize me. They stuck the catheter it in my vagina instead, right in my abscess. I had felt a lot of pain up to this point, but nothing could have prepared me for this kind of pain! These were nurses who knew me well since I had been in and out of the hospital since my diagnosis, and they felt terrible. I forgave them but, on my gosh, that was some of the worse pain I have ever felt and continues to effect me.

Shortly after being sent home from the hospital, I developed a vesicovaginal fistula. The general public has no idea  what a vesicovaginal fistula is; many individuals who have experience with a cervical cancer diagnosis do not know what this is.  I think it would be beneficial for people to be aware of. The fistula formed between my bladder and my vagina as a result of the receiving a radical hysterectomy post internal radiation. The tissue was not healthy enough to heal properly, especially due to issues with my bladder post-radiation. This resulted in a hole in my bladder, that caused me to urinate through my vagina, instead of my urethra, with no urge “to go,” meaning it was a constant flow. My doctors explained that rushing me off into surgery was a bad idea. She wanted to give my pelvis time to rejuvenate and with a vesicovaginal fistula, urologists want healthy and healed tissue to work with before moving into surgery. What this looked like for me, was 3 and half months in adult diapers every single day. As a reminder, urine is acidic, so having urine go through the vagina and irritating it for three and half months was extremely painful. The surgery to correct this ended up being an abdominal muscle grafted to my bladder, to repair radiation damage. In addition, more of my upper vagina was removed and I had skin from my thigh grafted to replace the radiated vaginal tissue.

Here is where we get back to what my radiation nurse told me, use it or lose it. Due to the radical hysterectomy, complications after, and this surgery, it a year before my gynecologic oncologist gave me the go ahead to start working with the dilator again. After this year, my vagina is so short and small that my doctor has to use an infant speculum for exams! The combination of radiation and multiple surgeries has caused my vagina to nearly close.  The vaginal opening is coming in at a whopping 4cm! She has given me hope that if I continue to work with my extra small dilator, consistently, that I can move up to the small and perhaps even move up from there. All of this depends on me, using it most days, and being consistent.

Consistently using my dilator is a struggle. I wrestle with several issues. One, is that I have anxiety about anything going in my vagina at all. It is painful and I have a rational fear of damaging and possibly reversing the reconstruction that saved my bladder. During my last appointment I had a very honest conversation with the physician’s assistant at my gynecologic oncologist’s office, who has been by my side from the beginning. She assured me that enough time has passed that I will not reverse my surgery and that with consistent effort, I can stretch the vaginal opening “some.”  This means we are not sure if it will ever be able to hold an entire erect penis for penetrative sex, but it could get better than 4cm with consistent use.  Using the dilator makes me so anxious that I often skip doing it because I just don’t want to have to deal with it. It’s so overwhelming and can feel like a huge task in my head. So, she helped me to set some realistic goals. I committed to using the dilator three times a week for the next three months, until my next appointment, and reassessing at that time. In order to help with my anxiety, I have some rituals that I have implemented. For example, I like to use my dilator after I shower and feel relaxed and always lying down, propped up on my bed. I also like to watch something mindless to divert my attention from pain and discomfort. (I like to watch New Girl or Fuller House, since we are being totally honest here).

So, what happens if I don’t use my dilator as instructed?  Well, if I give up my vagina closes, and I move on. Truthfully, in some ways that sounds fine with me. I’m kind of done on a lot of levels with this thing. However, deep down I don’t want to give up. I want to at least give it the best shot that I have, to make it better. I know that it will never be “normal.” The hope is that it can at least be better, that is keeping me focused and consistent.

When I tell people about these things and what my reality is after cervical cancer they are usually shocked. Women don’t talk about these intimate issues. I understand that it can be uncomfortable and embarrassing. Up until today, not many people knew that my vagina is 4cm. If we are not bold in speaking about these things, other women suffer alone in silence and a cancer that can potentially be eradicated will senselessly move through another generation. Early detection and prevention are key! The Pap and HPV co-test are wonderful tools that we now have for cervical cancer screening. We know that HPV is ubiquitous and causes most cervical cancers, in addition to vaginal, anal, vulvar, penile, and oral-esophageal cancers. Thankfully there is a safe and effective vaccine to protect males and females, before they are even exposed. I wish that I had known what I know now. I wish that I had heard someone talk about cervical cancer and the importance of screenings, even when you “feel fine.” I wish that I had heard women speak out. I can’t go back and change my experience, but I will work to change it for other women. I will tell my story in order to make a difference for someone else.

Holly is a two year cervical cancer survivor and Cervivor Ambassador. Read Holly’s Cervivor Story here.