In September 2010, I was diagnosed with ACC or Adenoid Cystic Carcinoma - salivary gland cancer in common terms.
At first I thought about keeping my battle a personal and quiet one. But after much research, I was inspired by all the ACC stories I came across online; it feels better that I am not alone in this battle. And then I decided that I want to share my story and journey with others. But before reading this, there are some important things to remember. This is only my experience. It’s not in any way meant to predict what someone else will go through. There may be similarities, but there will also be differences.
Adenoid Cystic Carcinoma (ACC) is a very rare type of cancer most commonly in either the major (parotid, submandibular, or sublingual) or minor salivary glands. In my case, ACC was found in my submandibular and sublingual gland. ACC’ basic biological behavior is this – they tend to spread along the nerves (perineural invasion) and primary treatment for this cancer is surgical removal with clean margins and post-operative adjuvant radiotherapy with or without chemotherapy.
This cancer is known for its slow-growing and unpredictable nature; roll of the dice, shuffle of the cards – anyone can get ACC. Because of its rarity, I found out that only 38 people in Peninsular Malaysia has Adenoid Cystic Carcinoma from 2003-2005 (Cancer Incidence in Peninsular Malaysia 2003-2005: The Third Report of the National Cancer Registry, Malaysia, page 64). Guess I’m one of the ‘chosen’ one. :)
25 June 2010 – First visit to see the ENT Specialist – Dr Aminuddin Saim of Ampang Puteri Specialist Hospital. CT Scan performed.
16 August 2010 – Second visit. Dr Amin identified mass in the right submandibular gland on CT Scan image.
3 September 2010 – Passed insurance details to Zalikha, Dr Amin’ assistant.
12 September 2010 – Read an article in The Star - ‘Lumps in the Neck’.
20 September 2010 – Admitted to APSH to prepare for first operation - excision of tumour in the submandibular gland.
21 September 2010 – Dr Amin performs surgery to remove tumour of the submandibular gland.
23 September 2010 – Discharged from hospital.
29 September 2010 – First follow up visit after the operation. Neck stitches removed. Pathological report of removed tumour identified as Adenoid Cystic Carcinoma. He informed that I need a second surgical removal with clean margins.
30 September 2010 – First visit to Oncologist – Dato' Dr Mohamed Ibrahim A Wahid (Consultant Clinical Oncologist) of Wijaya International Medical Centre Sdn Bhd. Asked for second opinion regarding the second surgery.
1 October 2010 – Second visit to Dr Amin. Agreed on a date for second surgery.
12 October 2010 – First time breaking the news to the office. Informed HR and superiors.
14 October 2010 – MRI Scan performed for brain and neck. No recurrent mass in the right submandibular gland, only soft tissue oedema from previous surgery.
18 October 2010 – Admitted to APSH to prepare for second operation.
19 October 2010 – Dr Amin performs second surgery.
23 October 2010 – Discharged from hospital.
29 October 2010 – First follow up visit after the second operation. Neck and chin stitches removed.
3 November 2010 – First visit to Oncologist (referred to by Dr Amin) – Radiotherapy consultation with Dr Ahmad Kamal Mohamed (Consultant Clinical Oncologist and Radiotherapist) of Sime Darby Medical Centre
4 November 2010 – Second visit to Dr Amin. Checked the wound from the surgery.
8 November 2010 – Radiotherapy planning. Fitted for radiotherapy head mask.
My story goes out with special thanks:
- to my beloved family – Ba, Mom, Dad, Sara, Amir, Hafez and Ibu - for their never-ending love, patience and confidence in me. And for taking care of me ‘like a baby’.
- to Azmir, for being my rock, and his family, whose kindness, positivity and generosity helped me immensely when all seemed hopeless.
- to friends, relatives, colleagues, neighbours and the visitors. I rejoiced at all the cards, SMSes, e-mails, FB messages, flowers and gifts I received… so many that I have lost count! Thank you for the ‘bacaan yassin’ event held and all the du’a and well wishes.
- to the wonderful team at the Ampang Puteri Specialist Hospital (APSH) during my surgery – ENT Specialist Dr Aminuddin Saim who is always in a cheerful mood, Zalikha who always greeted me with a reassuring word and dedicated nurses who took good care of me during my stay.
- to PricewaterhouseCoopers for being such a caring and understanding employer.