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Patient Profile: Ben’s Diagnosis of Oral Cancer

Ben has an amazing story. It’s a story of resilience, determination, hope, and perseverance. A story about gaining knowledge and actively participating in the treatment and care of his cancer. In short, this is the story of an Empowered Patient and how he fought for his own life.   

Ben is a 35-year-old single male from New Zealand. A highly intelligent, successful professional whose storybook perfect life came to a sudden jolt in October 2018 when he was diagnosed with cancer of the tongue. He underwent the surgery to remove most of his tongue, along with a dissection of the left side of the neck. A pathology result revealed a squamous cell carcinoma of the tongue. It also showed that 2 lymph nodes in the left side of his neck were positive for cancer. Per standard treatment protocol, Ben was given radiation therapy after the surgery without a concurrent chemotherapy. There is a growing evidence in the literature that, in such cases where the cancer had spread to the regional lymph nodes, post-surgery chemotherapy given concurrently with radiation therapy reduces the chance of the local recurrence of the disease.  The obvious drawback being that, while this dual attack may be tougher on the cancer, it is also tougher on the patient.  It is my hope that, someday, this standard protocol may change. However, as of right now, it still is the standard of treatment to give just radiation following surgery as it happened in Ben’s case. Unfortunately, it did not work so well.  

Hardly six months after completing this treatment, he had a recurrence of cancer in the left side of his neck in the area of those positive lymph nodes six months ago So, his cancer had come back.  A second surgery was done to remove the cancerous lymph nodes followed by another radiation treatment.  His first radiation treatment was given to both sides of his neck as it should’ve been. This time it was limited to the left side of the neck. This time, he did receive a chemo drug but for 2 doses only 

While he was recovering, Ben came across the story of Dianaas posted on PEN website. Ben happened to know Diana and thought that since Diana responded so well to Keytruda (Pembrolizumab), he would take Keytruda himself. He decided to pay for it out of his own pocket since it was not covered by the health plan. Keytruda is a wonderful medicine, but it’s not a magic pill or a cure-all and does not always work and did not in Ben’s case.  About 4 months after finishing the radiation treatment, poor Ben had another recurrence of the cancer, this time on the right side of the neck. Naturally, he was devastated because he thought that Keytruda had failed him.   

 By this time, Ben and I had been talking about what he should do if the cancer were to came back again. Based upon the information derived from the literature, we felt that he had to have a full dose of chemotherapy concurrent with radiation, either without the surgery or following a surgery. Ben decided that he would like to have that lymph node removed and so the third surgery was performed.   

Following the surgery, Ben underwent a concurrent administration of radiation and chemotherapy. He received Cisplatin, which is a very effective chemotherapy drug in the form of 6 weekly doses while also receiving radiation 5 days a week for 6 weeks. Treatments were completed around March of 2020. 

 It has been about 10 months since, as of February 2021 and, as far as we know, Ben is still cancer-free. For him, this is the longest remission so far. He feels healthy, strong & energetic and is working full-time and enjoying his life. The only problem is that he is so scared of finding another setback that he refuses to go for a follow-up scan, that was due long time ago. I continue to work with Ben to convince him to have the scan done because if the cancer comes back, the sooner we find it, the better we can attack it. I emphasize that another recurrence, while quite unsettling, will not be the end of the road for him and that newer & better treatment options are being discovered all the time.   

Ben had to deal with a whole lot of other medical problems during the past couple of years. Problems that resulted from his cancer and/or his cancer treatments. He developed a great deal of difficulty with swallowing and speech after his tongue surgery, as expected. 

Following his second surgery, Ben developed a paralysis of his left vocal cord. He could hardly speak beyond whispersOur ability to produce voice is dependent upon the movement of the two vocal cords as they rhythmically move to midline to touch each other and then move apart.  When one vocal cord is paralyzed and cannot move to midline, a firm contact between the 2 cords cannot be established, thus an ineffective voice. 

Ben went to see an ear, nose, and throat doctor who injected a filler substance called Radiesseinto his paralyzed vocal cord. This is meant to thicken it so that the opposite & healthy vocal cord can make contact with the paralyzed one and produce sounds.   

That procedure was less than satisfactory for Ben. His doctor recommended a bigger procedure, a surgery, called Medialization of the Vocal Cord. This involves pushing the paralyzed vocal cord towards the midline by stuffing something behind it. The doctor explained to Ben that he was not sure if this surgical procedure would work any better than the temporary injection of a fillerLuckily, I was able to help Ben. I agreed with his doctor that this surgery may not give a satisfactory result.  I suggested that he should consider getting an additional surgical procedure, called Arytenoid Adduction.  I had been through something similar. The problem with Ben’s vocal cords was not just the paralysis of the left vocal cord, but that both vocal cords were situated at an angle. So, when the doctor fattened the paralyzed vocal cord, it still could not make a firm enough contact with the healthy cord. Arytenoid Adduction surgery straightens the angle of the vocal cords and, combined with the medialization procedure, restores the near normal voice. However, it seemed that Ben’s ENT doctor was not very familiar with this procedure 

So, while he was dealing with his other medical issues, Ben and I were working to find if there was a surgeon in New Zealand who would do the Arytenoid Adduction surgery. Finally, after Ben’s third surgery, when he seemed to be in remission, he decided to tackle the problem of his voice. He found the right surgeon and went for the surgery. It did not go well. 

A most unfortunate complication occurred while undergoing anesthesia and Ben stopped breathing. He had to be resuscitated and an opening was created in his trachea to enable him to breathe.  Obviously, the surgery was abandoned with the recommendation that it be attempted again after a few weeks or months. 

 Ben, being very smart personwondered if now would be the better time for the surgery while he still had the opening in his trachea to prevent a similar complication.  I wholeheartedly agreed with his reasoning and suggested that he present it to his doctors. So, he had the second surgery done within 10 days. There were no complications with his breathing this time because he already had an opening in his trachea. The surgery was successfully performed. The trachea opening was closed and Ben has a nice and clear voice now which he is very happy about.   

His bad luck did not stop though because somewhere along the way, he also developed a severe stomach issue called Gastric Dumping Syndrome due to a possible nerve damage during the neck surgery.   This condition causes nausea, bloated feeling, abdominal pain and diarrhea. Luckily, as it often happens in these cases, after some time, his stomach regained its function.   

As is often the case in cancer patients, Ben has suffered from periods of depression. He has handled it very well by seeking the professional help and taking antidepressant medicines. He has valiantly fought through all of his challenges with his intelligence, determination, knowledge, and persistence.  

I think that we all need to admire Ben’s tenacity and his never-ending hope. Recently, he has had genomic studies done on his cancer. Based on the result of those tests, we know that there are certain mutations of the cancer that can be targeted if and when it rears its’ ugly head again. We have options if needed. 

 So, this is the story of a truly empowered patient and how he has changed his prognosis and the course of his illness often as a result of his own initiative Not only by cooperating with his doctors, but becoming more knowledgeable about his illness and actively participating in his treatment decisions.  This activism as a patient has often led to a better treatment outcome.   

This is what Patient Empowerment Network is all about. Hope, determination and knowledgeRemember, the knowledge is your superpower.   


Disclaimer: Sajjad Iqbal, MD is a retired physician and rare cancer survivor who routinely supports, mentors and guides other patients through their perilous cancer journeys. Any opinions, suggestions, or advice provided is solely from Dr. Iqbal’s perspective as a well-informed and knowledgeable cancer patient, not as a physician. The patients must discuss their health with their own doctors and follow their advice.  

Tips For A Smooth Recovery From Oral Surgery

An estimated 51,500 adults in the United States get diagnosed with oral and oropharyngeal cancers each year. Many of these people require oral surgery as part of their treatment. Oral surgery itself can present problems, such as damaging teeth and gums, causing pain and swelling. Dealing with these before and after surgery can help to speed up your recovery time and improve your comfort throughout, getting you back to life as soon as possible.

Caring for your teeth

Many cancer patients lose their appetite during treatment or struggle to eat after oral surgery. They are encouraged to have high calorie drinks for nutrients, but these often contain a lot of sugar and can be very damaging to teeth.Oral surgery for cancer can be done after doses of chemotherapy or radiation, which can weaken teeth and gums. If you have any teeth that are damaged or vulnerable you should consider having these extracted before surgery as bone necrosis can occur afterwards, particularly if you’ve had oral radiotherapy. Once you’ve recovered, lost and damaged teeth can be replaced with dentures or dental implants to give a natural look and feel, helping you to live a normal life again.

What you can eat after oral surgery

Your surgeon will offer you advice specific to you, but there are some basic guidelines you should follow. Once any bleeding stops and for the first two days post-op you can eat soft foods and liquids, such as yogurt, soups and smoothies. Include foods that are rich in vitamins A and C as these help to speed up recovery from surgery. A study from the National Institutes of Health gave patients 500-3,000 mg of vitamin C, which is 8-50 times higher than the RDA. All patients were recovering from various types of surgeries, including oral surgeries. They found that the high doses promoted new collagen synthesis, which helped wounds to heal faster. Research from the University of Michigan also found that high doses of vitamin C before surgery reduced the risk of excessive bleeding, so upping your intake before and after can be beneficial.

Dealing with pain and swelling

Unfortunately, after almost any oral surgery you will experience some pain, swelling and possible bruising. Many surgeons will advise you to regularly put ice on the area to reduce swelling, however recent research indicates that ice can stop the immune system’s natural response and actually delay healing. Ice can be a natural pain relief though, so if you choose to use it, apply it for 5 minutes at a time with 20 minute breaks in between as this is less likely to stop the body’s natural response. You’ll probably receive pain medication too, make sure you take this as instructed, even before pain occurs as it can prevent it.

Recovering from oral surgery can be painful, but it can also be a step in the right direction for your recovery, helping you to lead a normal and happy life. Pain and swelling are to be expected, and consuming soft foods and plenty of nutrients and minerals can help with this.

Moods of Oral Cancer…A Patient’s Journey

Real patient experiences shared privately at www.TreatmentDiaries.com.  Read more, share if you like or join in the conversation.  Making sure you feel less alone navigating a diagnosis is important.  Connecting you to those who can relate and provide support is what we do.


I’ve been even deeper in dissociation than usual lately. Normally, I have a habit of walking through life with a general sense of disconnection, forgetting most events, even some important ones. But lately–within the past few days I think–things have been a bit worse. I’m often feeling dizzy, having trouble translating talking into words, hearing everyday noises “echoing,” having a hard time making myself communicate with proper human body language and tone of voice, etc. I also feel even more dreamlike and can’t get my eyes to focus on anything for long. Pretty sure my depression linked to a life of living with oral cancer has something to do with it all, especially because I often feel like I lack the energy to act normally.

I think I remember feeling angry and invisible earlier today, but I can’t remember exactly why. I’m not sure if I want to remember. I can’t stand the idea of having to be reminded of recent events I should remember, but I don’t know if I could handle knowing them. It just might be too much.

I got the usual restlessness and anxiety when I got home today. It felt like I needed something to happen–and fast–though I couldn’t work up the courage to talk to my “friends.” And I don’t know why I have to put “friends” in parentheses. These people haven’t done anything wrong, and I’ve known them for years. I think I’m just so scared to get close to them and become my idea of their friend. I want to be able to run away when I start to care about what they think too much, and that’s not what people usually consider as friendship. “Friend” means commitment. “Friend” means deep caring and consideration. Those are things I can’t really handle right now, especially because of how often I slip up and how devastated I get when I do feel like I slip up. Those two things don’t mix well.

I guess I also don’t think they consider me as a “friend.” And my brain seems to think that being the only one in a relationship that considers the other person as a friend is annoying. I already feel so annoying and I blame my cancer diagnosis most for the loss of friends in my life.

I probably just overthink the meaning of friendship. After all, I’ve been told that several times. Even so, I’m still scared of intimacy and commitment and what people think, so the idea of friendship feels really overwhelming. I’m already overwhelmed enough.

Anyway, since I felt the need for something exciting/different to happen, I ended up playing a game with those people. The idea was scary, though, but I couldn’t think of another option, so I ended up taking Xanax before doing so. I think it helped a little, though the only person I had the courage to call was my partner (basically my safe person). I ended up feeling doomed about something that happened that night, though I can’t really remember what it was. Of course, the emotions I felt were expressed as anger at and avoidance of my partner, meaning he had to put up with even more drama. (He has to deal with this at least once a day…) Eventually, thanks to his help, I calmed down some. Really wish he didn’t have to be the one dealing with this every time, though.

Later that night, I think we messed around, and I was able to relax. I even felt like I was snapping out of that disassociation feeling a little – I truly don’t want to associate myself or my life with cancer, but I do. I want to be able to laugh and joke around at the end, but I’m slowly “disconnecting “more and more as time goes by, though. Xanax seems to do that sometimes. I’ll calm down some, but then I remember I have cancer and my life is not the same.  I’m pretty sure I got really emotional over at least one small thing today, though I can’t remember what it was. Cancer sucks – especially my cancer.