I have a condition that has been plaguing my health for the last five years.
I have a soft tissue sarcoma growing in the tissue of the lower left side of my neck called a Desmoid tumor. It currently sits atop my left clavicle. The tumor goes into my neck, deep enough so that last year it was becoming uncomfortably close to my carotid artery, esophagus, and larynx.
I have been saved by my use of a drug named Nexavar. It is a drug used in chemotherapy. It has successfully been making the tumor smaller. I began taking the drug on January 6th of 2021. Subsequent MRIs have shown a marked decrease in size. If it had not worked, I may not have been here over a year later to write about it.
Timeline
2016
In April of 2016, I first noticed a lump on my neck. I thought it was an inflamed lymph node. I was training for my first triathlon so I did not want anything to get in the way of that. It did not hurt at all so I did not think it was an emergency.
I went in for a needle biopsy and the pathology report stated that it was a Desmoid tumor. My ENT (ear, nose, and throat doctor) had no experience with such tumors but said that it was non-metastisizing, technically a “benign” tumor. We scheduled a surgery to remove it on December 22 of 2016.
This photo was taken right before the surgery.
My surgeon was the same ENT that diagnosed me. After the surgery the doctor said that the lump was the size of a lemon. He also said that it took longer than expected, and most concerning was that he wasn’t sure that he got all of it out.
I talk about the events of this first surgery some more in this blog.
2017
I took another MRI soon after the surgery and the results were that there were suspicious little bits of the tumor still left in my neck. I was advised to begin radiation treatment to radiate the area to destroy any remaining parts of the tumor that weren’t removed from the surgery. I began six weeks of radiation treatment in March and April of 2017.
It was not fun. During radiation treatment, I saw up close how devastating cancer can be. People before and after my appointment were really suffering and in immense pain. They struggled to put on their gowns, grunted and groaned with every movement, and needed assistance from loved ones to get on top of the table for their treatment. I talk about this experience in two parts here, and here.
After my radiation treatments, my MRI showed my neck to be clear. I was relieved, for now.
2018
It began to become harder and harder to turn my neck. Something was wrong. I was recovered from my first surgery and over the fatigue from the radiation treatments. We moved to Monrovia from Glendale and we had an early arrival of our son, Ethan in October of 2017. I look back upon this time as a very busy, very trying time in our lives.
My health and wellness took a back seat and I wasn’t ready to deal with any more health issues. In April of 2018, I noticed a lump on my neck. It came back. I was not done with this.
I got a referral to Keck at USC. I wanted to work with an Otolaryngologist who could really get this out. I was in the mindset that the more drastic the surgery, the better the chances I could get this thing out of me once and for all. The doctor was young and confident. I scheduled the surgery for June 7, 2018.
This picture is graphic.
Taken the day of the surgery
It was a harsh surgery. The tumor they took out was the size of a grapefruit. I talk about this surgery in this blog post right here.
After the surgery, my MRI showed no signs of the tumor. In my follow-up visit, the Dr. told me that the pathology report showed that they got all of the tumor out. It was a wonderful relief. I thought I was finally through this.
2019
It was a long recovery from the surgery. I was told that there would be scar tissue after such intense surgery. My left neck looked deformed as it does to this day. I had suspicions that the tumor may recur but the MRI report I took that year showed nothing.
My neck began hurting, it felt like this recovery was taking way too long.
2020
The unpleasant neck pain was not letting up. Through the pandemic, I began working exclusively online. The pain was constant so I asked my Primary care physician to get me some remote physical therapy.
I began physical therapy in September of 2020. We did all kinds of stretches for my neck, shoulders, and back. After several weeks I found that although the physical therapy helped somewhat, it wasn’t making the chronic pain go away. My physical therapist recommended that I see my ENT just to check on how I was doing since the physical therapy was leaving much to be desired.
I went to see my ENT, the same one who operated on me in 2016. He felt my neck and was concerned over a small lump he felt on the lower left side of my neck. I knew about the lump but was assured by my primary care physician that it was just scar tissue. He was going off of my 2019 MRI that showed no recurrence in the tumor.
I took an MRI in October of 2020. The lump was not just scar tissue. The tumor was back.
I went through a biopsy and then was on a search for an experienced Oncologist. My wife found an Oncologist at Keck USC named Dr. Tseng. I met with him and laid out my situation. Dr. Tseng had experience with Desmoid tumors and was the first person to let me know that surgery on such tumors was not always the best option. Surgery on Desmoid tumors can often aggravate them and make them grow back, often more aggressively. The first approach you take is a “wait and see” approach. These tumors sometimes go away by themselves. If they keep growing, it is often better to treat these tumors medically rather than surgically. This information was completely new to me. I had no idea.
This Oncologist was a Surgical Oncologist. We already know that surgeries weren’t working. He referred me to another Oncologist, a medical Oncologist out of Santa Monica named Sant Chawla.
I went to see Dr. Chawla in December of 2020. What he told me shocked me. He said that what I had was extremely rare. If he saw 1,000 tumors, maybe 1 would be a Desmoid. A neck Desmoid is even rarer. He said that the best person I found this entire time was Dr. Tseng, then himself. He laid out what I went through.
This is the picture that Dr. Chowla drew out to explain my situation. Note the “fingers” that stick out from the drawing of the tumor. This makes it very hard to get all of it out.
The surgeries hurt me. They made the tumor worse and caused them to grow back. This time, we were going to treat the Desmoid medically. He prescribed me a drug called Sorafenib, this is a drug used in chemotherapy. (Nexavar and Sorafenib are the same things). This time I had a doctor who knew how to treat my situation. I was so relieved.
2021
On January 6th, I went in for my first MRI of 2021. The same day I began taking the 2 pills of Nexavar. Two pills a day, 7 days a week. This drug had side effects that accumulated in the body. At first, the dry hands and diarrhea were tolerable.
In February, I was in pretty bad shape. I was fatigued, my wrists hurt, and I had high blood pressure. All of these symptoms were a result of taking the drug. I got my blood drawn every 2 weeks to make sure my levels were okay. I was irritable, tired, and miserable. My online teaching was taking off at this point and I was busier than I ever was before.
I would wake up, take care of the kid’s breakfast, get ready to work, and sit behind the computer all day. By the time I was done with my day, I was toast. I could not get enough sleep. At night I would have stomach aches and diarrhea. My fingers would get arthritic symptoms and make it hard to play the bass or piano.
Eventually, I became used to it. I got into the groove of taking these two little pills. My poison, my poison which would cure me. All hope was relying on these pills.
In April of 2021 I had my first MRI since January, The results were this.
Mild decrease in size of tumor
1.8 x 2.1 x 2.4 in January
1.8 x 1.9 x 1.9 in April
It was getting smaller. Thank God and modern medicine.
Keep going, keep going keep going. I can be uncomfortable, I can handle the side effects. I just need this drug to make the tumor smaller. It’s all I need.
Today
As I write this, I have several appointments this week. I see my Oncologist on my birthday to discuss the results of an MRI I had last week. I get my blood drawn on Thursday. I had a hassle with my insurance last month with continuing my Nexavar treatment. It has all been straightened out, hopefully. It was stressful and not anything I want to go through again. It is unusual to have this in my life. I dislike it immensely but I won’t complain about it because I have a family that needs me here and complaining won’t help.
I’m 43. I have somehow managed to make it this far and this is my life. I have struggled through, mangled, disfigured, and scarred but still standing. I won’t quit. It’s not in my nature.
Some frequently asked questions are:
Is it Cancer?
It depends on who you ask. One of my Oncologists, Dr. Tseng thinks that it is.
A Desmoid Tumor is a non-metastasizing soft tissue sarcoma. “Capital C” cancers metastasize other organs surrounding the growth. Those types of tumors are deadly serious. What I have does not metastasize other organs, thank God. It stays localized. So is it a benign tumor? Technically, yes but that’s problematic. Benign tumors can often be treated by surgeries. I had two surgeries to remove the initial growth. One in 2016 and another in 2018. What is not well known is that surgery can often cause the tumor to recur and grow back more aggressively. This is what happened to me.
What I have is incredibly rare. Desmoid tumors usually occur in the abdominal wall. Having a neck tumor of this type is one-in-a-million. I was not informed of the proper treatment for this illness. I worked with surgeons in 2016 and 2018 who knew how to cut. What I needed was a medical Oncologist with experience with Desmoid tumors, not surgical Oncologists.
I don’t walk around saying that I have cancer. I don’t see it that way because I went through radiation treatment and saw people who did have cancer. I saw the misery they were in. I saw the utter human tragedy surrounding it. I have friends and relatives who survived cancer, I am not in league with their strength and resilience. I have a condition. I have a survivable condition and most importantly a plan for treatment that is working.
Does it Hurt?
Yes.
I hate the words “benign tumor”. What I am dealing with is not benign. Although the tumor is shrinking the pain in my neck is daily and persistent. Every day my neck tissue feels like it is strangling me from the left side. Some days it takes an incredible amount of effort to get out of bed. I am not well. I have a pain management doctor who is helping me. I am not taking anything addictive. I have a Gabapentin prescription, some muscle relaxers for the evening, and extra strength Tylenol for when I need it. I use a neck massager daily and I stretch as much as I can.
My neck tissue is a mess from the scar tissue resulting from my 2018 surgery. I deal with it every day. If I miss my Gabapentin dose, a dull pain begins that I cannot handle for very long. Some days are good, some are bad. I manage to make it through each day, though.
Out of Character
A few months ago I attended a party at my friends’ house. I shook hands with my friends’ father who has been going through terrible health problems. He shook my hand and said “You’re my hero.”
I was baffled. I was always friendly with him but I never knew that I made such an impression on him. I asked him why I was his hero and he told me, “After all you’ve been through!”
We sat and talked about hiking and bike riding. After he left the party I told my friends about what he told me and they looked very surprised. It seems that it was out of character for him to say that to anyone.
My friend told me that it was probably because after his own health crisis he went very dark. He was very negatively affected by his own struggles. He saw me as being an example of how to rise above a struggle because he saw that I had a positive outlook on life even after my bike accident and surgeries.
So, if even one person sees me as being a positive example, that turns into a sort of responsibility. My children are watching, which is an even bigger responsibility.
I have kept this to myself and my close family members because I did not want to burden others with my struggles. I dislike people making a big deal about me. I have opened up about this because at this point it is irresponsible for me not to inform anyone who can listen.
This is what I want from each and every one of you:
If you or someone you know is diagnosed with a soft tissue sarcoma, especially a Desmoid tumor, tell them to go to a “sarcoma specialist” Do not opt-in for surgery right away.
This is all want for my birthday. I want you all to know the information above.
I do not need money.
I do not need you to make a big deal over me and my story (PLEASE do not do this). Your support and acknowledgment are well appreciated though.
I need you to remember the information above and say it to anyone you know who tells you they have a “benign tumor”. If I had known this, my situation would be different.
For more information look up The Desmoid Tumor Foundation
There is a Facebook group that I joined called “Desmoidian (Desmoid Tumor Support)”. These people are struggling, in pain, all hoping that their treatments work. I was lucky that Nexavar worked on me and is continuing to do so. We are trying to raise awareness and support for this illness. People have died from this, I could have died as well.
I’m here though. I will play music. I will teach kids the piano. I will take my children to cool places around the world. I will share memes, make jokes, and LIVE. Eat, drink, and be merry.
Live with unstoppable joy for all your days on this earth
-Phil Romo
2/22/2022