June's Story: Squamous Cell Carcinoma of the Sinus

Recorded August 14, 2002

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My name is June, and I am 54 years old. I am an African- Caribbean woman living in St. Thomas, in the U.S. Virgin Islands. I'm single, no children, and my cancer was squamous cell carcinoma of the left sinus. It was discovered by my oral surgeon, maxillofacial surgeon, here in St. Thomas in February of this year, of 2002.

The discovery of my cancer was somewhat precarious, in that I had had discomfort in my left upper jaw since the fall of 2001, but because of my absolute terror of dentists, I have avoided dentists as much as I can for most of my life. So when I discovered that there was pain in one of my molars in my upper left jaw, I simply thought it would go away. I ate a lot of painkillers and hoped that it would simply stop after a while. I was also having tinnitus from a wisdom tooth in my lower left jaw, and so I thought, hmm. And then it happened over quite a period of time, and then it would appear to be going away. I thought it would go away, and it didn't.

I lost my job. I was laid off at the end of November, actually the Monday following Thanksgiving 2001. Then it was shortly after the holidays, after the first of the year that the pain became--I was eating more painkillers than I was comfortable with but still avoiding going to the dentist, until around the middle of January 2002. I broke my front tooth, and because I am as vain as the next person and didn't particularly want to look like a cartoon character, I went to a dentist friend who I had seen in the Virgin Islands prior to this.

I went to Kim and said, "Kim, I need you to fix my front tooth, but I really think that the reason I'm here is that the universe sent me to you because somebody needs to take a look at what is happening to my jaw, on the back of my left jaw." She said, "Well, we can fix the front tooth, but I need to know what you're talking about." She took one look at my gums, and with some alarm said, "Oh my goodness, you have to see an oral surgeon about that. That's some bad stuff happening back there."

She referred me to my oral surgeon, and she made the appointment for me immediately, which should have been, if I saw her on the 15th, she made the appointment for the following week. I changed the appointment, but I eventually did go. I met with him, and he determined that I needed to have a molar surgically removed, but that he's also seeing things on the Panorex, which was the X-ray that was taken of my jaw, of my mouth--panoramic film of my upper and lower mouth--that he needed to do some surgery. He asked me some very important questions. When I drank did I have anything--when I drink water or eat, did anything ever come through my nose? And I thought, no, no, what a crazy thing to ask me.

Nonetheless, we had scheduled the oral surgery for, I believe, mid-February, and when he did the surgery he removed one of the molars in my upper jaw. He told me that he would then have to clean the area of the gum that was, to my view, very severely infected at this time, and he removed the wisdom tooth on the bottom, and so when he performed the surgery, he told me that he would do a biopsy. I assumed that that was routine.

I didn't really question--I had heard of a biopsy, but didn't question why a biopsy was--it didn't occur to me a biopsy is to determine whether something is cancerous or not. I have no incidence of cancer in my family at all, and so I guess I didn't think any more of it until the week following when I went back for my check-up. He looked at where the surgery was performed. He looked at the whole surgical area. He thought that the area in my lower jaw was healing very nicely where my wisdom tooth was, but he didn't like what he saw in my upper jaw.

He made a comment: "Hmm, I don't like the way this looks." I then said, "Well, what's going on?" He said, "Let's wait until we have the results of the biopsy." I questioned him further. I pressed him, quite frankly. I said, "Come on. What do you think this is?" He said, "No, no. We'll wait until we get the results of the biopsy," and I said, "Uh-uh. [No] You're obviously having some thought about what you think this might be, and I really would prefer you told me what it was."

In the meantime, I had been doing some research myself and I shared that with him. I said, "I've been kind of looking at what I see in my mouth and what I feel in my mouth and what it could be." And he said, "Well, what do you think it is?" I said, "I think it's really bad periodontal disease," and I said, "What do you think?" He said, "Possibly." I said "Come on, come on," pressing him. He then said, "I think the worse case scenario could be cancer."

The Word "Cancer"

Now the word "cancer" at that point sends a chill through your entire being. This was the first time that I had heard "cancer" and "June" in the same sentence, and I thought, oh, no. We had expected---I saw him on Friday that week. That weekend was difficult because I kept thinking, cancer? Could I possibly have cancer? Can I get cancer of the jaw? What would that mean?

I went back and forth, and I got on the Web and looked it up, and of course didn't know what cancer to look for. I looked at all cancers. I looked at--certainly some of the symptoms fit. A lot of prayer and a lot of sleepless, complicated nights, and eventually on the Thursday following, I thought---I called him, and he said, "Yes, the results of the biopsy have come back," and I said, "Tell me." He said, "No need. Come into the office," and when I hung up, I thought, uh-oh, this is not going to be good news.

I called a very dear friend, my friend Raul, and he picked me up and accompanied me to the doctor's office. When I got there, the minute that he came around and sat in the chair next to me instead of across the table from me, I realized that the news was indeed not good. And he said it was cancer, that it was a malignancy called squamous cell carcinoma. It was in--at the time he didn't know where, and that he needed to perform a CT scan in order to determine where it was, the size it was, what areas of my body had been impacted, if it was just in the jaw, and just what we were up against.

All things considered, I suppose at the time he expected me to be hysterical, and I wasn't. I was, in retrospect, rather collected. My friend Raul said that he still doesn't understand how I took the news as calmly as I did. I realized that this was something that needed to be dealt with, and I needed to know what, how, how soon, what he needed to do, and what he needed me to do. And that was exactly what I said to him: "What do you have to do to make this OK? What do you need me to do and how soon?"

We scheduled the CT scan for the following Tuesday. When we had the CT scan on the following week, it was discovered from the results of the CAT scan that the cancer was located in my left sinus and that it had not impacted any of the other areas around. It had grown from the sinus down into my jaw and into my gum, hence the impact through the tooth.

When I questioned what would have to be done, he referred me-- because we did not have on our island at that time an otolaryngologist--an ear, nose and throat specialist--and so I was referred to his alma mater, a teaching hospital in Washington, D.C. I needed to go by Dr. Ross's so that I could travel to Washington. He immediately mobilized a team of physicians and EMTs. We had an also a dental unit also set up at the hospital to which I was referred.

By way of backing up for a minute, let me share an interesting twist to the story. I host every day, six days a week, a radio talk show. And on the Tuesday after my oral surgery, after my surgery here, I entertained a guest who I had not met before. He came on the show---when I got to the show he was introduced to me as a physician, an oncologist, a radiation oncologist. But it turns out that he was the head of the very same radiology department at the very same teaching hospital in Washington.

So then, once I got my diagnosis, he was quite frankly the first person that I called, because I was being referred to the same teaching hospital. Just by coincidence, on the way that the universe works, I choose to believe that it is the way that the universe works and this is why my life is the way that it was. When I spoke to the radiation oncologist, he named the very same surgeon that the oral surgeon had named as the best person to perform my surgery. So, in short, the team of physicians in the Washington, D.C. area was mobilized even as I was mobilizing to leave to travel, to have my surgery.

Surgery with Good Results

I left St. Thomas on Sunday. My surgery was performed on March 13, 2002, which was the next day, which happened to be two days before my 54th birthday. Not a fun way to spend my birthday. When the surgery was completed--the surgery was done at about 5 in the afternoon on a Wednesday, and I was discharged on Thursday at approximately 3:00 in the afternoon and became an outpatient of this particular hospital for about--I remained in the area for about five weeks before coming back home.

What they discovered was, thankfully, that there was no--they also performed a neck dissection where, during the time of my surgery, they removed 58 lymph nodes and tested them, and there was no cancer found. So my team was satisfied, because there had been no spreading of the cancer and no metastasization, as it were, for which I was very grateful.

What has happened, however, since then my neck resection has formed keloids, which, for those of you who don't know, is where there's a tremendous scarring which is sometimes very itchy and is sometimes very painful. But each time I itch or each time I have to kind of press against it to kind of stop it from just feeling uncomfortable, I am reminding myself that my cancer will continue living in my oral cavity.

Now the challenge: as a talk show host, what am I doing with my mouth every day for 90 minutes, every morning Monday through Friday and for an hour on Saturday? I could not do my show, and my dear, dear friend Raul, who had accompanied me to receive the news of my cancer diagnosis, stepped up to the plate and took over my program for me and hosted the program while I was gone.

When I returned after five weeks in Washington--well, let me go back a little bit. During the time of the surgery, I was fitted immediately with what is known as an obturator, which is a prosthetic device which in essence plugs the rather large hole that was created in my head. Because half of my hard palate was removed aside from a portion of my soft palate which was also removed; and the upper gum on the left side from the second molar, the tooth right after my incisor, all of that has been removed, and removed in one piece. My surgery was done, remarkably, from the inside of the mouth, so there is no scarring on the outside of my face. It was determined that I did not need chemotherapy, but that there was a positive edge that was microscopically found, so that radiation would be necessary after my surgery.

I returned to St. Thomas in, I believe, April. I don't know a date, but I came back to St. Thomas on a Sunday and rested on that Monday and determined that I needed to share my information with my audience, and I did. I returned to my show on a Tuesday, and immediately as I was back I shared that show with Raul, who stayed on as my co-host, and shared with my audience that I had been gone because I had been a cancer patient and that I had had cancer surgery.

I think you could almost hear, because I live in a very tiny Caribbean community--the Virgin Islands is comprised of three islands, and my program is heard in a major part of the world in the Caribbean. I have listeners as far away as Puerto Rico-- Fajardo and other cities in Puerto Rico--and as far down-island as Antigua. On any given day, because it is live and call-in, I have callers that call me from the neighboring islands, including St. Croix, St. Thomas and St. John. I think you could almost hear a collective gasp, first of all because it was cancer and it struck a chord of fear, and usually it happens with muted tones when you talk about someone having cancer. Certainly nobody to my knowledge had ever come out publicly and said, "I have cancer." I thought it was important for this community to have cancer have a name and a voice and a face and I offered mine.

The response has been overwhelming. Overwhelmingly positive, in that this community from the average man in the street all the way to the Lieutenant Governor and senators and Attorney General and members of our community who are business leaders, and just the ordinary Joe Blow in the street first of all applauded the fact that I went public with my diagnosis. And as I told them, I feel that I am on assignment, and this is my journey and this is my assignment.

Part of my assignment and my journey is to share my story and to share my journey with those who hear me every day. Because I felt it was important to take the sting and fear out of the word "cancer" so that those people in my audience who maybe have something in their bodies or who are considering having their tests done on an annual basis would indeed go and get tested so that like me they would have that kind of prognosis if indeed something were wrong and it could be caught in a very early stage. And they would get the necessary treatment so they could continue to live healthy and productive lives.

I needed them to go through this with me and grow through this with me, and indeed that is the journey that I embarked upon when once I came back. It has been an interesting journey thus far, because the two and a half weeks that I remained at home, I hosted the show every morning. [I] went to the studio and hosted the show every morning, but when I went back to the Washington D.C. area for my radiation treatment, I determined that I wanted to host the show long-distance every day. My studio and general manager equipped me with the kind of equipment that allowed me to broadcast from Washington every morning so that I did my show every day.

Doing Double Shifts: Radiation and Radio

Now, I didn't realize what a challenge that would be. Did not have a clue as to what "radiation" meant. I knew technically--you read that it is radio radiation that will be beamed into your head, and there would be essentially burning of the tissue in order to remove and kill any microscopic cells, malignant, after my surgery. I began the radiation treatment in May, and I must say that when the treatment started I was treated--the determination was made by the same head of the radiation department who had been my guest--he told me--he took me under his wing, as it were. I became his little sister, as it were, not that he's that much older than I am, but he took personal care of my face. He was very hands-on.

It was determined that I would be treated with 6,000 rads cumulatively, that I would have five waves once a day, or 200 rads a day. I was fitted initially with a mask, and the process of fitting the mask was rather challenging, in that it is this piece of plastic that is warmed and then molded to your head by lying on the table and they mold it to your head, and if you're claustrophobic, you have a problem. Thankfully, I am not claustrophobic. Then once it cools, it hardens into this plastic mask that is then marked in the areas where the radiation is to be administered.

On a daily basis, the mask was put on me. And I was locked in the same position every day so that the radiation would be administered to the same place where they wanted it to be given so that there was no deviation. That was what the mask did so that I had no marks on my face, but the radiation doses were administered in two directions, through my left cheek and frontally so that they were able to get to the soft palate and the back of my throat.

The difficulty of fitting me with a mask lasted about an hour on the first day, while I laid still on this table while they made their measurements, looking at the X-rays--the new CT scan that was done following the surgery while I was in Washington. That was probably the most difficult part, the part of lying on the table, because of being immobile and having to hold your head immobile for that long period of time with this mask that was closing on you. It is very, very close on you was difficult.

However, that was done on the Thursday, and on the Monday following, I began radiation treatment. The first week of radiation was a breeze. I was able to go through that without a problem. However, I need to say that the prosthetic device that I was fitted with at the time of my surgery had been replaced, or needed to be replaced with an interim prosthetic device, because as my tissues healed that prosthesis needed to be changed.

I was referred to a prosthodontist in the Maryland area who has now become, as most of my physicians, part of my extended family because of the incredible service and the wonderful care that I was fortunate to have. He had fitted me with a device so that with the interim prosthesis I was able to travel home with. Then once I got back to resume my radiation, he needed to adjust it further and have another one fashioned, because as my tissues shrunk, the device became ill-fitting, as it were.

What is also interesting is that with the fitting of the prosthesis--which, for those of you who want to get a sense of what it feels like, put a giant shoe horn in your mouth, stick it all the way to the back of your throat against your uvula and try to talk, and that's essentially what it feels like. Those people who wear dentures, make the dentures larger than they are and stick them all the way to the back of your throat, and that is really what it feels like. My obturator prosthesis looks a little bit like a denture, but my prosthodontist, who I feel is an absolute magician, was able to fashion an obturator that allows me to sound like my original self. I didn't when I came home initially sound as I sound now. My voice has come back, as it were, and he has fashioned again another one that was fashioned just prior to my first week of my radiation.

What happened, however, during the radiation, is that I simply lost my appetite. I was fortunate in that I did not lose my salivary glands, even though the function was diminished some. I never had dry mouth like so many cancer patients who have oral cancer suffer from. So the result was that I lost a great deal of weight over the six-week period of my radiation, and I didn't weigh a great deal to begin with. I was a very small woman, a size 5, and I weighed at the time of my diagnosis 110 pounds soaking wet, and so by the end of my radiation, which my last treatment was on June 21st, I was down to about 88 pounds and not looking wonderful.

My skin visibly looked very burned, very burned. You could see the marks where the radiation had been administered to the front around my mouth, my top lip, and the exit point where the radiation had exited on my right cheek. My left cheek in the front was very, very dark. I looked quite disfigured, but I was very grateful for having the last treatment on June 21st, because what that meant was that it allowed me to come home in time to participate in our local chapter of the American Cancer Society's very first Relay for Life, which became an annual event. I was asked to become--I had originally been asked to be one of the mistresses, one of the MC's of the event, before my diagnosis, and I had planned before my diagnosis that I would have a team. I must say that at the time, at the beginning of the year before that I even knew that I was a cancer patient, I said to my friend, who had indicated an interest in being a part of my team, that I wanted to find somebody who had the experience of cancer to be on our team so this would become personal. Well, the joke was on me, because indeed at the time I did have a cancer growing on my head and I didn't know. I became the mascot for my team.

When I did come home, I was able to have not just one team, but two teams of people who were made up of friends, my sister, who-- the team was called June's Angels. The reason they were called June's Angels is because I believe indeed I had a band of angels. In my belief, both earthly angels and heavenly angels, who carried me on those days when it was difficult for me to carry myself, as they continue to be as I recover, and June's Angels were able to bring a great deal of relief.

It is a very tiny community, and in our very first go-round we were able to raise close to $6,000 to contribute to the almost $100,000 that was raised on that weekend event. I also was able to participate in the luminary service. I was able to lead the luminary service, but I must say this. We do not have in the Virgin Islands a cancer center. If someone needs chemotherapy, they do have medical oncologists on island that can administer the chemo. If you need to have surgery, depending on where the surgery is, we have surgical oncologists on island who can do that, but we have absolutely no radiation oncology unit on the Virgin Islands.

I have been for the past four or five years talking about the idea on my radio program, and otherwise, of a cancer center with a radiation unit for our citizens, not just for Virgin Islanders but for people in the Caribbean area. And again, that's why I think I am on assignment. I have since become--I mean, I was a champion of the idea of a cancer center before my diagnosis, but clearly now I have become extremely vocal and have essentially put my money where my mouth is by lighting a fire under the powers that be, to make the cancer center become a reality.

As a result, June's Angels, which was put together to take part in the Relay for Life, is becoming a not-for-profit organization which will make a mission and a goal of providing support to cancer patients and those who support cancer patients by raising funds to run fund-raising events and activities to assist the cancer center and to assist the American Cancer Society; but also to provide scholarships for those persons in the Virgin Islands who choose to pursue careers that will assist in working within the cancer center.

On Assignment to Help Others

And so out of all of this, if I may say, life has handed me lemons and I have chosen to not just make lemonade, but to create the best darn lemonade stand that I could, and to share that lemonade with those who are thirsty. That is why I feel very strongly that this is my journey, that it is my assignment, and indeed I am on assignment.

I continue to do my program from--I do my program every day. The first week that I went home, however, I did the show on a Monday and a Tuesday, but then the cumulative effect of the 6,000 rads of radiation essentially laid me down. I simply was too burned and in too much pain and discomfort. So that the rest of that first week, Raul had to step in and help me to do the show. I simply was not able to go on.

The response of my audience was interesting because they thought: well, wait a minute. All the time that she was having the radiation treatment, she was live, and we heard her. And we could tell the days that she was doing well, and we could tell the days that it was a little bit of a struggle. As I would have to administer Lidocaine--I mean, there are terms that my audience knows very well by now by sharing with them. I would have to administer Lidocaine, which is a numbing oral topical solution, to numb my tissue so that I could fit my obturator and be able to talk. They couldn't understand why, and I could almost feel the panic of, "Oh my goodness, what's wrong with her?"

So I devised my first show back after I came home to have my radiation oncologist and my prosthodontist both on with me live, so that they could explain to my audience that my reaction from the cumulative effect from the radiation was normal and that indeed it was not that I was any worse, but that it was like--and my radiation oncologist, who is wonderful and is really my friend, likened what happened to my being in a prize fight, and I went the full twelve rounds and I won the fight. I really beat up on the other guy and I was victorious in the end of the fight. However, once the fight was over, the telling blows of the fight put me down for a couple of days, and I needed to recuperate before getting back up again and continuing my recuperation and my recovery. A member of my audience called in and said thank God that they got that information, because indeed they had been worried and they were concerned that I was not doing well.

My prognosis is excellent, and I am now having my obturator adjusted by my oral surgeon, who was the person who made the initial diagnosis and from whom I have also received nothing but excellent care. I just have been very fortunate. My physicians have become friends. I understand that that is not the norm, but they check on me on a regular basis either by email or telephone call, from my prosthodontist up in Maryland or from my radiation oncologist out in Washington or my dentist, my oral surgeon, calling saying, "When are you coming this week?" Because he checks once a week to make sure that everything is healing as it should. I saw him yesterday, and he's very pleased with the progress.

What is going to happen is that I will travel back, when the tissues have healed completely, to the Maryland area to have what will be called the definitive obturator fashioned, which will be made from a combination of metal and acrylic so that it will be a very light material and it will fit, I understand, more comfortably. I look forward to that and hope to be able to do that in the fall of this year.

The process of this journey has been very difficult, very, very difficult. As a matter of fact, as I look back on it, you know, one does not assess damage when you're in the middle of a storm, but then once the storm has passed and you look back on it and you wonder how in heaven's name did I get through this. I think back on the day when I almost begged my radiation team, "Can you please give me a couple of days break in the treatment?" because I didn't think I could take any more.

I am so grateful for all of the prayers. I am not a very religious person, but I consider myself a spiritual being. I know and can testify to the power of prayer and the power of love that I was the recipient of, from people who knew me and people who I may never meet, who, because I put a name and a face to this disease, no longer whisper about "CA" as it was called, the "big C", and are now able to talk openly about cancer. There are people who have come out of the closet, as it were, and said, "I, too, am a cancer patient."

At the Relay for Life there were people who put on the Survivor's T-shirt proudly and walked, who I was in shock that came up to me and said, "Thanks to you, I am now able to say, 'I too have been there.'" The sharing of the information, "I too have been there," makes us now able to share with each other and be supportive of each other. And we have started a cancer survivor's support group, where both men and women come together once every two weeks, and we simply share. It has been wonderful, and the support has been phenomenal certainly, because from a very small family, I now feel that I truly belong to the family of mankind, a very large and wide and extended family.

I don't wish this on my worst enemy, but indeed cancer is not a death sentence. I think if my message is nothing else, I want it to be that. That early detection is the key, because cancer can be caught, and you can win the battle with cancer--and that, I think, is what I have learned.

I, of course, needless to say, am no longer afraid of the dentist. As a matter of fact, the joke is, when I told my audience when I came home, "I now have a rather large hole in my head," and I said, "For those of you who thought that I had a hole in my head all these years, now it's legitimate." The hole is the hole that has been masked by the removal of the stage IV squamous cell carcinoma. That hole has been plugged by an obturator that allows me to continue to function in my career as a talk show host, and I'm grateful.

I am ever so grateful for the support that is there, and for those of you who find yourself going through an early diagnosis, it's not an end, but rather I see this as the beginning of the second and another part of my life. And as I said earlier, I have chosen to keep the lemons that life has handed me and not just make lemonade but to create enough lemonade to share with those who may be thirsty, and I thank you.

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