A toothache which turned out to be mouth cancer. Kashyap Dalal, 60 from Ahmedabad and his wife Hemal recall how he found out about his cancer during a dental check-up. A decade into his diagnosis and multiple recurrences, he now spends his time teaching school children about the harms of tobacco, and counselling other oral cancer patients with the ardent support of his wife and children.
Please tell us a bit about your condition. Can you describe it?
It was Stage 4 Head & Neck Cancer with 4 recurrences.
When were you diagnosed?
First diagnosed was in 2014
What were the early symptoms? What made you go to a doctor?
I had tooth ache and some pain between my molars on the left side. The pain would increase when I tried to eat anything hard or chewy. I called a dentist after a few days. I was travelling at the time so I used a painkiller for relief but that relief would be temporary. There was no sore or ulcer but I could feel a swelling. The dentist told me to go visit him after I returned. The dentist referred me to another orthodontist who suggested I get a biopsy done.
Listen to our podcast featuring Kashyap and Hemal Dalal
What tests were done? How did the diagnosis come about?
The biopsy was suspicious, and the dentist asked me if I knew any Oncologist. I went to a cancer hospital and showed an oncologist there. More tests were done and it was confirmed that there is cancer in that jaw. Finally, a PET-Scan was recommended to see how much the cancer had spread.
What was your reaction to the diagnosis? How and when did you break it to your family?
We felt very low in spirits when we heard. We had disclosed the diagnosis only to our respective brothers. Since the surgery for Head and Neck cancer is so cosmetically scary, we did not know how people would react. We did not want negative comments about his appearance or cancer, so we did not tell friends or relatives at that time. Also we did not want unsolicited advice from people. I did not tell my own mother who is aged and didn’t want to get her upset, so we told her after getting discharged. Closest friends were told after the Ryles tube was removed, which was about 10 days after surgery.
What happened next? (specialist referral, course of treatment etc.)
The oncologist told us that the left jaw will have to be removed. Since this was such a massive surgery, we decided to go for a 2nd opinion and that confirmed the same diagnosis and route of treatment. So we went back to the first oncologist to proceed with the surgery. However, by then 10 days has passed and the cancer had now spread even further. This really depressed us again. He told us the cancer is in 4th stage but there are chances of removing it completely. He explained that to avoid future recurrence in the jaw, it would be best to remove the entire mandible(jaw) on the left side. It was a hard decision because I realized as a foodie, I will not be able to eat properly ever again. My wife explained that this is important and gave me the moral support I needed at that time. The surgery occurred in June 2014 with reconstruction (muscle flap was done).
Post the surgery, 32 radiations were given. After the first few Radiation sessions, I started driving myself to the appointments. But I had to be careful because I could lift my left arm and shoulder due to the stitches on that side. I could not turn my head to the left side either, but I managed.
Were there any complications from the primary condition?
I have had 3 recurrences after that.
In 2014, during a regular follow-up, a lesion was found and was excised with a laser procedure. However this left a hole in the upper palate and I was told to wear a mouth obturator, which is a customized prosthesis that would cover the opening. Overtime, the constant removing and wearing of the obturator caused a lesion and this turned to cancer. This 2nd recurrence happened in 2017. I had to undergo another surgery.
My last recurrence was in May 2019, this time on the left cheek. My wife and I just sat down in defeat when we heard the news. My Oncologist really counselled us at that point. He told us it would be a minor laser procedure again to remove it. We both started crying because we were mentally exhausted. My speech was affected after that procedure.
Since recurrence was repeating every 2 years, in 2021, we were very afraid of it happening again. My wife was very anxious yet positive that it would now not reoccur.
What exercises were you advised
Immediately post-surgery, I would walk 5-10 minutes initially, sometimes sit at the terrace and do some pranayama (yoga breathing exercises).
What was your tobacco history?
I quit chewing tobacco in end of 2010 when my children got on my case. I used also smoke cigarettes since college days and then occasionally at social events.
What kind of specialists (including Physio/ Occupational therapist/ Psychiatrist etc.) do you consult and how often?
Post surgery, exercises were given to ensure widening of the mouth. This included bundle of sticks, shoulder & neck exercises, steam etc. Lot of emphasis was put on cleanliness; I had to gargle after every meal or every few hours with betadine or salt. The dressing inside the mouth had to be removed and applied back after gargling which was very cumbersome.
What changes have you made to your lifestyles because of this condition?
I have had to make many changes. I exercise more regularly now. Except Sundays I wake up at 6am daily to go for a brisk walk or jog. I love to go for long drives and we often go driving on small holidays. I also go to counsel other patients at the hospital where I was treated. I also counsel people to quit tobacco.
How has your family supported you? Who has been your biggest support/companion through it all?
Family support is most important. My wife and two kids have been very integral to my recovery.
What were some of the challenges you faced?
After the surgery, when I first went to the bathroom and saw my face, I was so scared to see my myself in the mirror. I did not know how I would live with this face now. It would affect my work too, because I visit clients and client sites. I thought, I will not be able to eat anything and being a foodie, that hurt too. Mentally and physically, I was very down, felt there was no support.
Initially I could not open my mouth much, so getting any dental work was not easy. Once after a recurrence, a sharp tooth had to be filed. My oncologist had suggested a dentist who used an instrument to open wide and do the needful work. Using a straw is a great hack for patients. When I go out with office employees or at work sites, I used to feel awkward to drink tea/coffee, because it would take me a longer time and spill on my clothes. I would make excuses but then I started carrying a steel straw. In total, I only have 7-8 teeth now, but I do manage to eat almost everything.
What is your advice to patients who face similar challenges?
There are lots of myths floating around regarding cancer. Many patients are wary and unwilling to undergo chemo or radiation chemotherapy. My wife and I often counsel them that these are required treatment protocols and can be managed with good care. Some patients think sugar is bad and immediately stop intake of sugar. During PET scan, the dye that is injected highlights all the parts where glucose is accumulated. People don’t understand that it could also be due to carbohydrate intake, and it does not mean that sugar should be completely stopped. Gluten and dairy are also avoided by many. There is no evidence that wheat causes or increases cancer. There is a lot of focus on dry fruits and nuts - that does not provide full nutrition. Patients are not given yogurt and buttermilk because it is sour but in fact, they lose out on probiotics which is important for gut health.
I also suggest that everyone should get a psychiatry evaluation during the course of treatment. It is equally beneficial to caregivers and family members. Patients have to take care of themselves; they have to work hard!
Wife Hemal’s account:
When I first heard about the cancer diagnosis, I was shocked. My two kids were small, younger one was in 8th grade and older one was in 1st year college. “What will happen now?” was a question going through my mind. Cried a lot for 2-3 nights, started getting negative thoughts about what I will do if anything happens to Kashyap, especially since I am housewife with no income of my own. We realized I had to accept what it is and try to handle it one way or the other. On the 3rd day, we had to be normal again, mostly for the children. We had not revealed the diagnosis to my younger one, but one day she happened to glance on the medical file lying outside. Till then she knew, it was a dental issue, but now she googled the file contents and found out. She was upset that we had lied to her, I was also shocked when she said she knew about the cancer. We placated her and she turned out to be an unprecedented source of strength and courage for us.
Before scheduling the surgery, we requested the doctor give us a week’s time to prepare.
Kashyap wanted to wind up pending work and I too needed time to stock the house while I would be at the hospital post-surgery for a week. Most importantly, Kashyap sat me down every night to inform me about his work and financial matters. Regarding the kids, I had to give them instructions about managing the house and kitchen and mentally prepare them. In addition, I had told them how to clean and sanitize the bedroom when we got discharged for home.
How did you manage food intake and changes?
During the time he was on Ryles tube, I would mix different vegetables every day and puree them. I would make boiled dal, milk with egg, fruit juice with protein powder, makhana powder etc. I would keep an alarm for 2 hours and give him a feed on time. In fact, he gained 2 kilos of weight during those days. Since he has diabetes, I would make sure the feed was measured to 200ml. I used to measure his blood sugar before every feed because he was put on insulin for those weeks. After the Ryles tube was removed, he moved back to tablets for his diabetes.
When food was started, Kashyap was mostly on semi solids. It would take 30 mins to chew a small sized thin roti. He had difficult chewing because the right jaw now felt unbalanced. Sometimes, he would get so frustrated that he would upturn his plate of food but we insisted that he chew no matter how long it took. Post radiation, there was a lot of stiffness in the mouth and neck area but forcing the chewing movement helped him increase his jaw mobility and prevent fibrosis. To motivate him, I would prepare a colorful plate of food with small portion of various items that he could be tempted to eat. I also made sure that we all ate the same food and did not differentiate his as being specially prepared for a patient. Now he can eat most things except spicy and really hard foods like nuts etc.
We followed all the advice and instruction provided to us by the doctors and never slacked on exercises etc.
How did you support each other in decision-making?
During the first diagnosis, we had a medical insurance of just 3.5 lakhs. The private hospital had told us that half of that would be needed just for the surgery. Some people had suggested we do the surgery at a government hospital to save costs. After visiting one such government hospital, I told Kashyap that we must do his surgery at the private hospital and not take any chances with poor treatment. I did not want any guilt later of not seeking proper treatment.
How did you mentally/emotionally cope with it all? Did you see a counselor for support?
I would often research online regarding his cancer and different aspects of care. I read that psychological treatment is very essential for cancer patients. After the first surgery, I sought the Psychiatrist at the hospital and made an appointment. That really made a lot of difference in his mood and thinking. I used to go with him and then he would go alone.
