Her father Ashwin Chinubhai Gandhi, 72 was diagnosed with Oral Cancer stage 3 in March 2024. As a physiotherapist working in the field of cancer, Nipa Shah navigated this condition armed with her professional knowledge and experience. Sitting on the other side of the table as a family caregiver, she experienced the emotions faced by patients and their family members.
Hidden symptoms and signs
The earliest sign that my mother noticed was reduced opening of his mouth. There was also bad breath (halitosis) and loss of 1 or 2 teeth. My father dismissed it but she knew something was not right, she thought it was some dental issue but my father was not complaining of anything. My father used to chew tobacco in his youth but had quit almost 30 years ago. It is likely that he was suspecting something but was afraid to express it. We think he was ignoring these signs and hiding them from us.
I first took him to a dentist, who on examination immediately told me privately, that there is an abnormal growth between the triangle of the jaw which was causing the reduced opening of the mouth. He told me to get a biopsy done right away because this growth looked abnormal. My father was fearful that his tobacco habit would come back to bite him and hence he was hiding these signs/symptoms. When I came out of the dentist’s office and informed my father that he needed biopsy, he became agitated. It took us a while to calm him down. At first, he blankly refused to go for the biopsy, I had to explain and convince him for a long time before he agreed.
Diagnosis of Oral Cancer
I took my father to get his biopsy done at a private hospital. We waited with agony for 2 whole days till the report came. We knew in our minds that it was malignant but still we had a small ray of hope that it would not be cancerous. When the report was positive for squamous cell carcinoma, I decided to gather my immediate family to reveal the diagnosis to him because it was beyond my sole capacity. Initially we downplayed the cancer to be a minor one and consoled him that it would all be okay soon with a couple of chemotherapy shots.
Extent of the cancer
The oncologist told us to get a Pet Scan done to assess spread of the cancer. His oncologist explained scan results that showed cancer had spread to 5 lymph nodes and there was erosion of the mandible (jawbone). Thus, he recommended neoadjuvant chemotherapy before doing surgery to reduce the size of the tumor because he could not operate on it currently.
Treatment
The main goal of the targeted chemo was to reduce the size of the tumor to make it operable. The chemo days would be hectic ones, but went off very smoothly with essentially no side-effects, my father was even able to drive his 2-wheeler after the chemo would finish. After 9 cycles, the Pet Scan was repeated, and we were given the green chit to undergo surgery after a gap of 20 days. Those 20 days were again taxing because we had to now convince my father for the surgery. I told him it would be a minor procedure but again he refused. During OPD visits, he had seen other patients with surgical scars and tubes which has set in a lot of fear. His oncologist was very instrumental in explaining and getting him to finally agree to the surgery.
Surgery was lengthy because it needed tumor excision, muscle grafting from the thigh, and removal of affected teeth and jaw. Tracheostomy was done keeping his age in mind and aid in breathing. A ryles tube (nasogastric feeding tube) was inserted and removed after 20-25 days. These did create some issues with feeding and suction, but a month post the surgery he had recovered. His vocal cords got paralyzed in the process and affected his speech and made it low pitched. I moved him to my house where my mother and I nursed him on our own and did not hire any extra help.
His doctor suggested radiation next. By then he was much better physically, the ryles tube had been removed and he was able to swallow soft and liquid foods. He again required a little convincing and had become very irritable.
Radiation brought on a lot many complications. He completed 27 out of the 30 radiation sessions because he just could not go on. He got a lot of mouth ulcers that seriously bothered him, and he was not able to eat. He was on total liquid diet (mostly milk, juices and whey protein powder drinks) for few days before slowly being able to eat crushed food again that had no spices. The mouth cleaning guy was called to apply cooling gel in his mouth that would provide some relief from the ulcers.
Another side-effect of radiation was loss of hearing from one ear, his oncologist has assured us that some of it will reverse with time. Gradually he lost hearing in both his ears.
Mental and physical side-effects
After the initial resistance towards getting tested and treated, post-surgery, my father became very quiet. He would just go along with the new daily routine silently, would not talk much or smile at all. He would not complain about anything either. His only complain was of pain in the neck due to the tracheostomy. I used to make him do all his physiotherapy exercises and manual lymph drainage which would ease the pain.
Appearance in oral cancer has major psychological effects on the patient. In my father’s case, face changes were fairly minor post treatment (thin cut on the neck which is not very visible) so cosmetically that did not change much. Retention of front teeth helped maintain shape of the face.
Motivating him to do the physiotherapy exercises was not challenging because he would obey and listen to my instructions. Plus, we started the exercises early on, so he got used to them. He didn’t care to speak and meet with relatives and would avoid them. My mother would entertain them in the living room, but no one was allowed to go into the bedroom to see my father. My father only liked to sit and talk to my son.
Overall, he has become irritable, lesser now than before but still he does not socialize much, prefers to stay at home. He steps out only for household chores and shopping. He does not like noise and wants his own space.
Physiotherapy Benefits
Post surgery, I used to call a ward boy to clean his mouth. He would come twice a day (and once a day later on) to cleanse his mouth thoroughly to prevent infections and maintain oral hygiene. This routine included cleaning with cotton and forceps, followed by gargling with warm saline water. Tongue strengthening exercises were done daily because of his vocal cords were affected. In fact, some of the tongue, neck exercises and mouth opening movements were started before surgery itself during his chemo, so that he got used to them and vastly helped in his speech and swallowing. Facial muscles also tend to become weak, loose/droopy lips and poor tongue movement further impair speaking and eating.
Due to removal of neck lymph nodes (supraclavicular, clavicular, mandibular and axilla), he had swelling in the neck and cheek area. I would give him manual lymphatic drainage twice a day to remove the swelling.
During radiation, physiotherapy was properly followed, this included shoulder exercises and mouth stretching. This greatly improved his shoulder movements and prevented tightening of jaw which is a common side-effect of radiation.
In order to prevent muscle wasting, I used to make him walk. He started walking a day after his surgery. With his arthritis, he had some knee pain. Utilizing the weight bearing joints helps in bone strengthening, so I used to make him move around every hour or so. I would tell him, “go take a round of the house” and this would also induce hunger, so it had multiple benefits.
Coping mentally and emotionally
Even though I am in this profession, when it affected my own father, it was a major setback emotionally. I was in shock and took me time to come to accept it. It was very tough for us. I was worried because age was a factor, even my mom is 72 years old. My father has always been independent and healthy, so there was a big burden on making him accept the condition. Family support at that stage is a must.
- Counselor support
No, my father would generally avoid talking to outsiders. Even the counsellors in the hospital would not get much out of him. - Family support
My mother was always very strong and practical, her stance was that it is what it is, and we will deal with it together. She also supported me in taking the responsibility of care in regard to treatment and management decisions. Due to my professional network, I was in a position to be confident in the choice of doctor and hospital and ways to manage patient at home. Thie eliminated a huge burden of confusion that patients and their families often go through as to where to go after diagnosis, which doctor to trust, etc.
Present condition
It has been 7 months, and he is able to eat almost everything as long as it is soft or broken down and is not spicy. This is a great relief for my mother who now does not have to mash all his meals. He is fit now to carry on with his chores at home. Due to his hearing loss, we don’t allow him to drive anymore. After surgery his weight dropped from 54 to 45 kilos. Now it is slowly increasing back, and he is at 49kgs.
Advice to other patients
The journey after diagnosis of cancer can be extremely challenging for patients and their family members especially if knowledge of the medical field is limited. Awareness regarding early diagnosis is most important. Early detection leads to lesser treatment. Head and Neck cancer patients should seek help from onco-physiotherapists, speech and swallowing therapists and lymphatic therapists for better rehabilitation and management.
