Diana’s Cancer Journey

30 Stories in 30 Days™ // April 2023

My name is Diana, and this is my story about discovering and coming to terms with my mouth cancer. It wasn’t, and still isn’t, an easy task to live with cancer. You would think it would be easier for me to manage this, because I was already diagnosed with breast cancer seven years ago, but I can’t say it was.

I never used to get preventive tests. I ignored getting a mammogram until I woke up one morning and just decided to. To this day, I don’t know why I did it. It turned out to be breast cancer in my left breast. I decided to have the most radical treatment and went with a bilateral mastectomy, because I didn’t want to worry about it in the future. I wanted it over with. Because of the way I dealt with breast cancer, I thought mouth cancer would be the same. How wrong I was!

A few years before my diagnosis of mouth cancer, I developed several sores on my tongue by accidentally biting it with my teeth. I went to a head and neck surgeon, who biopsied my tongue. Luckily, the diagnosis was dysplasia, and the surgeon did not remove any lesions on the tongue. I was so tremendously relieved. My dentist did some work on my teeth to prevent me from injuring my tongue, and the sores on my tongue improved. I never went back to this surgeon, and I no longer worried about the sores.

I always had some discomfort in my mouth due to my teeth, but one day I felt something unusual in my mouth, near my left cheek and behind a tooth. My first thought was that I had bitten my cheek, as I often did. I tried to look at it in the mirror, but all I saw was a red spot that looked sore. I wasn’t concerned until it didn’t go away. I never thought for one minute that it was mouth cancer until I searched online what mouth cancer looked like. I was shocked to see that what I had in my mouth could be cancer. My first thought was that it couldn’t be—I never smoked, I don’t drink, and I did not have the papilloma virus. I had no risk factors that typically cause mouth cancer. That relaxed me for a while. But when more time passed and the sore still did not go away, I went to my dentist.

Usually, my dentist always jokes with me, but as soon as he looked in my mouth, I saw his expression change. He took several pictures and told me he did not like the look of the sore in my mouth. I asked if it was cancer, and he said he did not know. But he scheduled me for an appointment the next day with a head and neck surgeon he recommended. 

The one thing about mouth cancer is that you can never forget that you had it. As soon as you wake up in the morning, it’s there. 

The surgeon was older than I expected, and his office was outdated. But he seemed knowledgeable, and after looking inside my mouth, he suggested a biopsy of the lesion. He thought there was a good chance it was cancerous, and he told me to return the following Tuesday to go over the results.

The biopsy was indeed squamous cell carcinoma of the retromolar trigone. The surgeon explained what needed to be done. I admit I hardly heard what he was saying, because I was so shocked. He gave me a list of doctors to see for pre-op testing, and told me he would schedule the surgery. I remember crying all the way home. I remember asking him how I could have mouth cancer when I had no reason to get it. He said there is sometimes no specific reason for developing cancer, and that it can happen to anyone.

I decided to seek a second opinion and I found that there were not too many choices of head and neck surgeons. Since I worked in the medical field, I asked some of the doctors and nurses I knew. They gave me a few names, but none of them specialized in mouth cancer. I was scared and discouraged.

My son-in-law works at an imaging center, and he told me about an excellent ENT specialist who would see me that same day. When I met with him, I was immediately impressed with this ENT’s knowledge and excellent care he provided. This doctor said he knew another tremendous head and neck surgeon he trained with. I was immediately connected with this new head and neck surgeon, and was told I will hear from him in a few days. Two days later, I heard back from my new head and neck surgeon. This felt like a miracle to me!

My relationships with my family grew stronger.

As soon as I met my new head and neck surgeon, I knew I wanted him to do my surgery. He explained how the surgery was performed and what to expect during my hospital stay. I told him I wanted the surgery done as soon as possible. He told his secretary to fit me in as soon as possible. I felt confident in him and his staff.

Two weeks later, when I woke up from the surgery, I was told everything went well, and my head and neck surgeon felt confident he had removed all the cancer. I remained in the ICU for ten days as expected. I couldn’t talk, but my doctors communicated with me by helping me install an app on my phone so I could type my questions. His team of doctors was excellent and told me I was making excellent progress. 

It was weird having a tracheostomy tube. In some ways, it was my security that I could breathe. When the time came to remove the tracheal tube, I was very apprehensive. I was especially frightened about going home. However, I was given so much reassurance that I would be fine, and my head and neck surgeon said I was doing well.

Though my recovery went well, I hated that the left side of my mouth was swollen because it was difficult to talk and swallow. My speech-language pathologist was a tremendous help to me. She reassured me that this was normal, and taught me some swallowing exercises to help me swallow better. My surgeon told me that my neck lymph nodes all came back negative for cancer, and that was very reassuring. I felt confident my cancer was gone. However, he said I should still have the radiation treatment. He scheduled me for proton therapy, and I began my radiation just a few months after surgery.

At first, radiation wasn’t so bad. At about the fourth week, however, I told the doctor how painful it was to swallow. He prescribed a mouthwash and medication to help with the pain. It helped for a while, but my pain worsened by the fifth week. My neck was burned. I looked like I had been burned in a fire. I was given a cream that helped. I spoke again to my doctor about my difficulties swallowing and not drinking enough. He ordered IV therapy for me to avoid becoming too dehydrated. He told me I could take a break from the radiation, but I would have to finish it. I decided to continue the radiation, as I just wanted to get it over with. By this time, I could hardly turn my neck and could not swallow even drops of water. I finished radiation in March of 2022.

My family members have encouraged me to try to enjoy life everyday. It isn’t an easy thing to do. I know how much they love me, so I am trying really hard.

My problems with swallowing continued, and I was not getting any nutrition. I could not swallow the Boost I was taking, and consumed very little fluid. Two weeks after I finished radiation, I had severe pain on my side and terrible chills. I felt really weak. I was laying in my bed shaking, couldn’t get up, and when I tried, I passed out. My husband was concerned. The next thing I remember was waking up in the hospital. 

Apparently, I was so dehydrated that I was septic. The doctors told my family that I might not live through the night. My husband told them about the pain in my side, and my daughter told them that I had kidney stones in the past. Immediately, they did an ultrasound & found a huge stone blocking my kidney. My severe dehydration coupled with the radiation caused the stone. I also had a severe urinary tract infection, causing me to have urosepsis. 

This also affected my heart. I was very sick and spent two weeks in the ICU. During this time, they were feeding me by IV. The speech therapist at the hospital said I was not able to swallow. It was recommended that I have a feeding tube put in, so I began tube feedings. Miraculously, the sepsis was resolved, my heart returned to normal, and I was discharged with instructions for the care of the feeding tube.

I spoke often with my speech-language pathologist during this time. She felt it was important to have the tube removed as soon as possible. She worked with me to help me swallow, and soon I could swallow the Boost drink, soup and applesauce. She told me to decrease the amount of tube feedings and weigh myself to ensure that I was maintaining my weight. Once I could go two weeks with no tube feedings while maintaining my weight, I was told I could have the tube removed. Soon afterwards, I had the tube successfully removed.

My advice to patients is to ask more questions about radiation therapy and its side effects.

When I look back on my radiation experience, I feel somewhat angry. I feel that not enough time was spent discussing what to expect and the effects that radiation would permanently have on my body. I still felt there was no choice but to have the radiation. However, if I had known about all the side effects, I may have chosen not to have it. My advice to patients is to ask more questions about radiation therapy and its side effects.

Six months after completing radiation therapy, I had a routine PET scan that showed some lit up areas, likely from the radiation. My head and neck surgeon advised me to have a CT scan, which showed a small nodule on the lower lobe of the right lung that had not shown up on the PET scan. This totally surprised me. I never thought anything would show up, especially after all that radiation. I proceeded to get a biopsy of the nodule, after which my lung collapsed. I was hospitalized, and a tube was placed to help inflate my lung.

While I was in the hospital, the biopsy came back as squamous cell carcinoma, but there was uncertainty whether it was a metastasis or a new lung cancer. I had the nodule removed in mid-2022 by a thoracic surgeon, and he assured me that the lymph nodes were all cleared. While he felt all the cancer had been removed, he ordered molecular testing on the removed nodule, because the type of tumor had similarities to the mouth cancer. I asked my head and neck surgeon how this could happen, since nothing had shown up on the lymph nodes. He said the cancer could spread through the blood. I couldn’t believe it. 

I returned to my oncologist, who was following up on the molecular study, and ordered another CT scan for eight weeks later. The CT scan came back with no new growth in the right lung, but now found a small nodule on the left lower lung lobe. How could this be happening? I was so frightened and discouraged. The molecular test was inconclusive. It could not be determined if this was a metastasis or new cancer. She said often people with mouth cancer also develop lung cancer.

My oncologist advised me to have another scan in eight weeks, and the results of this CT scan were the best I have ever had. My oncologist was so happy to say she felt I was now cancer free! There were no more nodules on my lungs. The one they had seen on the left lung was no longer there. I felt like a miracle had happened. She told me to go home and enjoy my life being cancer-free. She ordered another CT scan in three months.

I was beginning to feel confident that this nightmare was finally over. During my recovery, we moved to an over 55-year-old apartment complex, and I became involved in many activities that my apartment complex was offering. I still feel very insecure because my speech is different, and I often drool. I am never comfortable going out to eat, because I cannot swallow many foods. Even though I have these insecurities, I became somewhat like my old self. 

I met many great people and explained to them about my speech. They have accepted me the way I am. The one thing about mouth cancer is that you can never forget that you had it. As soon as you wake up in the morning, it’s there. Your mouth is so dry, and the damage from radiation is always with you.

I was forced to retire because I was out of work for six months. How naive I was that I thought I would be back to work in a few months! I am 70 years old, so it was time to retire after all. But I loved my job and was used to being busy all the time. So I quickly filled my days with activities, and channeled my energy into planning parties and meeting new people. I started to feel confident that I was returning to life, and I even felt happy. For the first time, I felt stronger than I had in a long time.

I felt like a miracle had happened. She told me to go home and enjoy my life being cancer-free.

Soon after, it was time for my next follow-up CT scan. I could see my test results before my doctor called me. Regardless, I always tell myself not to look as hard as it was not to. Since my last CT scan was good, I felt somewhat confident. I couldn’t believe what I was reading. The good news was that there were no new nodules on my lungs, but it showed that the duct next to my pancreas was slightly dilated. My immediate reaction was “that’s it—I’m finished if it’s in my pancreas.” 

I had my appointment with my oncologist the next day. I was so scared to hear what she would say. She came in happy and said what a great CT scan I had again—six months and no new nodules on my lungs. I couldn’t believe she was so happy. I asked her about the dilated duct in my pancreas. She said she also has a slight dilation in her pancreas, and the pancreas itself had no lesions. It could not be determined if there was anything on the head of the pancreas, so an MRI was recommended to me. I had the MRI done in early 2023. 

The MRI showed the dilation, and another test was recommended. My oncologist assured me that she did not believe I had pancreatic cancer. She recommended a gastroenterologist, who specialized in diseases of the pancreas. In April of 2023, I went to have the test done. The doctor was concerned because I could not open my mouth wide due to the radiation. The anesthesiologist and my gastroenterologist said they would try their best to insert a tube through my mouth to see my pancreas, but they were unable to get it down all the way. I know they tried their best. My gastroenterologist believed this was not cancer, but she could not promise me. I went home and slept the rest of the day because of the anesthesia. That was a good thing, since I don’t know how I could cope with this.

For the first time, I felt stronger than I had in a long time.

The next day, I heard from my oncologist. She knew how upset and disappointed I was. She assured me that both herself and the gastroenterologist did not believe this was pancreatic cancer, but that they must do all they can to ensure there was no malignancy. I am currently scheduled to have a PET scan, and from then on, who knows?

There are some positive changes that cancer brought to my life. My relationships with my family grew stronger. My family members have encouraged me to try to enjoy life everyday. It isn’t an easy thing to do. I know how much they love me, so I am trying really hard. Sometimes I feel I no longer want any more tests or scans. I know this is foolish, but test results always seem to reveal something bad. I have to accept that this is the way it will be for the rest of my life. I wish I could say my journey with mouth cancer and additional complications is over, but unfortunately it is still going on. I will be returning in a few weeks. The one thing I know is that I have full trust in both my head and neck surgeon and speech-language pathologist, both of whom I will return to visit in the next few weeks. Additionally, I am confident that my medical team will lead me in the right direction. I’m praying that I will see the day when my journey with cancer is finally complete.