Recuperating from Surgery

Second Operation - Modified Radical Neck Dissection

I was told by my family that I was more calm and composed during my second surgery (though it’s going to be more intense) as compared to the surgery I had in less than a month ago. My advice to you is this: (1) a positive attitude is the best way to approach ANY surgery; keep an open mind about what to expect after the surgery to lessen fears. (2) Have confidence in your surgeon. (3) Most importantly, have faith in God.

October 14: Dr Amin wanted me to do an MRI Scan (of the neck and brain) before the surgery. The MRI Scan is even scarier because I was confined to a small space; the whole procedure took me 45 minutes each. I lie inside a large cylinder (like a 1.5 meters long tunnel) and I was asked to wear a mask and it was a little uncomfortable lying still with the mask on. An injection of a special contrast dye was given into my bloodstream. The radiographer sits in the control room next to the scanner with Mom and observes through the window. The scanner made a loud banging noise while it was working so I was given a headphone to listen to the radio (Hitz.fm) to block out part of the noise and to help me relax. The song that was playing on air when I finished my session was Kris Allen' Live Like You're Dying. It felt as if the radio was trying to send me a message - to live like you're dying. I couldn't agree more.

It turned out that the results were very encouraging – No trace of cancer detected in both neck and brain. There was also NO recurrent tumour detected in the right submandibular gland, only soft tissue oedema from previous surgery. This was excellent news (well, at least for me) but Dr Amin still wanted to do the operation as originally planned.

i) MRI of Brain

Report

"NO focal cerebral lesion seen. The ventricular system and basal cistern appear normal. Brainstem and cerebellum appear normal".

Radiologist Impression:

"Normal examination".

ii) MRI of Neck

Report

"Right submandibular gland has been excised. There is NO recurrent mass lesion in the right submandibular bed. Residual soft tissue oedema in right submandibular bed and adjacent right lateral pterygoid muscle. Multiple enlarged lymph nodes, the largest node measures 1.3 x 1cm. The left submandibular gland and both parotid gland appear normal. Nasopharynx, orophyarnx, larynx and trachea appear normal”.

Radiologist Impression:

"Residual oedema in right submandibular bed and pterygoid muscle from previous surgery. NO evidence of recurrent tumour detected in right submandibular bed associated with reactive right and left cervical lymph nodes".

"Sorry Aida, You Have Cancer"

Now that my surgery was done, I had expected to be able to enjoy my food again. Of course, this did not happen immediately and I was very disappointed. The problem was that I had expected to open my mouth like usual, to chew like usual, to be back at 100 per cent, but this is not possible. When I’d realized that and scaled down my expectations to 70 per cent, eating was no longer a big problem.

September 29: I really look forward to see Dr Amin to remove the blue stitches hanging out from my surgery wound; 12 stitches altogether. As I reached Dr Amin’ consulting room with Sara, he greeted us and began talking. “How are you feeling?... Parents mana?... Results back… unusual… very rare…quite unexpected… Adenoid Cystic Carcinoma… malignant… slow-growing... lain kali datang dengan parents… Sorry Aida, you have cancer”.

The news came as a shock to me! I did not expect to hear this from him; I wasn’t prepared for this moment. The good news was that my cancer was slow-growing and curable, inshaAllah. But I have to trust Dr Amin. Primary treatment for this cancer is surgical removal with clean margin. This can be challenging due to the nature of the cancer that spread along nerve tracts.

So now, I need a second exploratory surgery as soon as possible. Oh no, not another surgery!! I asked Dr Amin, is it really necessary to undergo this second operation, as I am still recovering from the first one. He told me it is very important that he proceed with this second surgery as the first surgery was at surgical margin. He then asked me to talk to my parents, meet an oncologist for a second opinion and come back on Friday.

HISTOPATHOLOGY REPORT (Validated by Dr Nik Azizah Wan Kadir - Consultant Pathologist of Pantai Hospital Kuala Lumpur):

Nature of specimen:

"Recurrent tumour submandibular region – Excised tumour tissue"

Interpretation:

"Submandibular gland with an adenoid cystic carcinoma. Tumour is at surgical margins. This is a slow growing but highly malignant neoplasm with a remarkable capacity for recurrence".

Full histopathology report:

Not knowing how to react, I went to the Emergency Room to get my stitches removed. At the same time, Sara made some phone calls to inform the rest about the shocking news. I’d break the news of the cancer to Azmir in a perfunctory yet exquisitely dramatic SMS (Looking back, I should’ve been less dramatic about it). All I can think about was my uncertain future; I felt like cancer had robbed me of a sense of control over my life, as if my life was turned upside down. “Why me? What will happen to me? Will cancer change me? Is all hope gone?”, I’d asked myself. The answer was simple - I have no answers!

In the car, both me and Sara drove back in awkward silence. It was really hard to get my sister talk about my cancer. Finally, I just said to her, “I know you’re really worried and scared. So am I. Let’s talk about it”. She was so relieved that I had brought up the subject.

As we reached home, everyone was already waiting for us – Mom, Dad, Amir, Hafez, Ibu and Azmir. There was tension in the air as we entered the living room. At first, everyone felt overwhelmed with despair but once we started to comfortably talk about my cancer, gathered information from the internet– learning as much as we can about ACC and its treatment, I guess we started to feel more in control and it was easier to make decision when we know what to expect. So we’d decided to meet an oncologist at Wijaya International Medical Centre (upon recommendation from Auntie Linda, whose brother is also a cancer patient).

That night, I prayed that God will help me go through this ordeal and that my family will emerge stronger. I believe that everything happened for a reason. Nothing happens by chance or by means of good luck. God will never give us anything we can’t handle.

“God does not burden any human being with more than he is able to bear…”. (Qoran: Al-Baqarah, 2:286)

WHAT CANCER CANNOT DO:

September 30: Feeling more positive today, I went to Wijaya International Medical Centre with Mom, Auntie Linda and Uncle Ali to seek the oncologist’ advice and to learn more about ACC and its treatment. Auntie Linda and Uncle Ali were really supportive and Mom had a very long list of questions and concerns prepared. We met Dato’ Dr Mohamed Ibrahim A Wahid (Consultant Clinical Oncologist) who is very helpful and patiently explained and answered any questions presented to him.

One thing for sure is that he agreed with Dr Amin’ treatment plan – surgical removal with clean margins. Then he suggested post-operative adjuvant radiotherapy with or without chemotherapy, but for sure he will not perform it without a clean margin. He also asked me to read my health insurance policy and call the insurance company to check on whether or not radiotherapy is covered under the policy as it might cost a bomb. His careful explanation on how radiotherapy works and its side effects was very helpful as it put things into perspective. He is, after all, the President of the Malaysian Oncological Society!

October 1: I went to see Dr Amin with Mom and Dad. After negotiation, we agreed that the operation should happen as soon as possible as Dr Amin is going to Mecca to perform Hajj; the exact operation date – 19 October. That is approximately two weeks away! Sigh... He wanted to open up the right side of my neck and remove enough material (lymph nodes, muscles etc.) to get some idea of the spread – then he’d know how to proceed. He also wanted to remove my right sublingual gland as this was the ‘neighbouring area’ to the removed submandibular gland (where my ACC was first discovered).

When everything was settled, I put together a list of people who I thought I should tell, and how I should tell them as it was something very personal to me. I am sorry if I'd resorted to inform some of you via SMS as it was really hard for me to find the right words and I don't think I have the courage to do it personally. I'm afraid I might break down and cry. During the next few weeks, while waiting for the second surgery, I was able to focus and not get distracted by evil thoughts of metastasis. I was incredibly touched by the SMSes, e-mails, FB messages, flowers, gifts and visitors I received. Thank you all for your prayers and support.

First Operation - Excision of Tumour

During the first surgery, apart from asking my friends and family to pray for me, and saying “Oh well, I’m sure it’s nothing” a lot, I didn't think too much about it.

September 20: In the morning, I checked into the hospital and was given a four-bed room female surgical ward – Room 504. After the nurse had checked my blood pressure and measured my weight (57 kg at this point of time) and height (166cm), I was allowed to go back home to get my stuff for my stay at the hospital; but I have to be back by 8pm.

So I went out for lunch with Azmir at our usual spot in Desa Pandan (little did I know that eating will no longer be a pleasurable experience for me after the surgery) and then headed back home to Shah Alam to pack. The whole family drove me back to the hospital later that evening and we had supper at Old Town White Coffee (opposite APSH); they sat with me while I had my favourite kaya and butter toast and then sent me off to my room. Looking back, I can’t imagine how difficult it must have been for them to say good night, knowing that I’m going in for surgery the next day. I slept alone at the hospital; I was feeling a bit more nervous now.

Supper at Old Town White Coffee.

With Sara the night before the surgery.

With Mom the night before the surgery.

September 21: The day had finally come! The surgery will be performed by Dr Amin jointly with an expert head/neck surgeon from Pusat Perubatan Universiti Kebangsaan Malaysia, Dr Mohd Razif Mohamad Yunus. Surgery was scheduled at 4pm later today and I was asked to fast from 8am onwards. As the hospital was a little late in sending my breakfast, Azmir had decided to drop by with McDonalds’ Egg McMuffin at 7am before he went to his physiotherapy at ISN Bukit Jalil (Thank God he leaves nearby!). A few people visited me during lunchtime but whenever I was left alone, I’d performed ‘Solat Hajat’ and would read the Yassin to pass the time and to calm my nerves.

At 3pm, the nurse came to inform that the Operating Room was ready for me and I was required to remove all clothing and donned a green backless surgical gown. I waited until Mom and Azmir reached at 3.15pm to settle in bed. I was wheeled by two nurses through a long corridor, with Mom and Azmir by my side. I felt quite emotional when the nurses asked them to wait outside as I entered the cold clinical theatre where some other nurses greeted me. It was so cold that they covered my feet up to keep me warm (I was glad I had been to the toilet earlier and emptied my bladder!). I was moved across onto a narrow surgical bed in the Operating Room, above me were large twisted metal bars with massive over head lights; it’s like a scene out of Grey’s Anatomy! I was rather apprehensive but I knew God was with me all the time and He would see me through.

APSH' green backless surgical gown.

Being wheeled to the Operating Room.

Being moved across onto the narrow surgical bed.

Later, the Anaesthetist, Dr Arul Balasingam greeted me and asked if I was feeling all right. I told him to please be extra careful and make sure I wake up. After asking me to sign a consent form, with Hari Raya songs playing in the background, he smiled as he injected anaesthetic through the cannula into my vein. Another nurse asked me to breathe into a mask and after catching a glimpse of the white round clock on the wall (it was 3.45pm) and a few deep breaths, I was out.

The next thing I found myself being awakened in the Recovery Room. “Cik Aida Munirah, bangun cik. Operation dah habis. Boleh dengar tak?”. My instant reply was, “Betul ke? All right!”, and all the nurses laughed at my cheerfulness. The clock on the wall shows the time as 8pm. I felt a bit drowsy and nauseous. The nurses continued to monitor my heart rate and blood pressure. There was a tube that was put into my neck, attached to a drainage bottle – to remove any fluid which might build up in the gap that they had left.

Once Dr Arul was happy with my progress, the nurses asked me to move from the surgical bed to the hospital bed. It was excruciating! As I moved across, I saw a large stain of brown Betadine (I think) with some blood on the surgical bed. I was slightly tearful as I was wheeled out of the Recovery Room, only to be greeted with happy faces of my family (Ba, Mom, Dad, Sara, Amir, Hafez & Ibu) and Azmir, and I knew I was going to be all right now.

Right after the surgery.

Being moved back onto the hospital bed.

The area that was cut open.

Tube from neck, attached to drainage bottle.

September 22: I didn’t sleep too well with the IV and the tube hanging out from my neck, and the nurse waking me up every 2 hours. My head was beginning to hurt and my neck stiffening up. It was hard for me to lift my head, so going to the toilet was a real challenge. In the end, Mom (who spent the night at the hospital) agreed to the nurse' suggestion to put me in adult diapers. Haha, I felt like a giant baby! It was so uncomfortable to pee in it, but I did it anyway.

Around 8am, the nurse came to help lift my head and I’d managed to sit at the edge of the bed for awhile and felt light-headed. Then I’d tried to walk to the toilet; it felt good to walk, but I was weak. I had breakfast (porridge, of course) and it took me a while to learn how to open my mouth without forcing it too much.

Having breakfast (porridge). On the phone with Azmir.

Nabihah and Rizal came to visit.

As the day wore on, I felt better. I had a few visitors, it was a real blessing. My table was piled high with flowers, fruits, chocolates and magazines. Thank you all! Dr Amin made his rounds in the evening and came to explain that the surgery lasted for three hours and went very well – they’d removed the tumour and already sent it to the lab. He told me that he took some photos during the surgery with his iphone and will e-mail the pictures to me. He checked the bottle attached to the tube from my neck – the bottle was slowly filling up and if it doesn’t continue to fill I will be discharge tomorrow.

Exhibit 1 : Excised tumour (photo courtesy of Dr Amin)

Exhibit 2 : Taken during surgery (photo courtesy of Dr Amin)

September 23: Well today was much better. I can actually get in and out of bed by myself. Dr Amin came in the afternoon to check the bottle and told me that I can go home this evening! Hurrah! Later, the nurses came to remove the tube from my neck. It was so painful, I was crying in agony so Azmir tried to distract me by asking me what do I want to eat when I get back home. I'd told him that I want to eat KFC. Good distraction - but still I could feel the tube moving under my jaw as the nurse tried to pull it out. After settling the hospital bill, I was given a week’s course of Augmentin (again!) then packed my stuff, thanked the nurses for their cheerfulness and efficiency and went home. It feels good to be back.

P.S.: Bad news - I'd failed my Taxation paper, unfortunately. Boo hoo.

Discovery and Pre-treatment Stage

I’d first noticed a lump under my right jaw line on my upper neck early in the year. It had not been painful but the lump bothered me. However, due to the fact that I was too busy with audit, netball and studies that I totally ignored it.

In the middle of June 2010, as the lump grew bigger, I was concerned as to what is actually growing under my jaw so I went to Klinik Mediviron TTDI Jaya (my company’s panel clinic) and Dr Sharifah Abd Ghaffar referred me to Dr Aminuddin Bin Saim – Consultant Ear, Nose, Throat & Paediatric ENT Surgeon of Ampang Puteri Specialist Hospital (APSH).

Lump - front view.

Lump - view from the left. Thinner jaw line.

Lump - view from the right. Thicker jaw line.

June 25: I went to APSH with my mom and met Dr Amin for the first time. He tried conservative treatment first with a course of antibiotic – Augmentin (but this actually resulted in no change). He then ordered a CT Scan (of the neck) with contrast. Dato’ Dr Azlin Azizan – Consultant Radiologist came in prior to the scan to explain everything the radiographer would be doing and to calm me down as this was my first CT Scan ever. The radiographer then placed a tourniquet around my arm and inserts an IV and connects it to a plastic tubing. The tubing was connected to an injector, and I'd felt a warm rush of fluid (like a rushing heat) into my arm, chest and abdomen as she injected the CT Scan dye which caused some discomfort. I was left alone in the room as the scanner starts working. Now and then a voice came through the intercom to tell me what I was supposed to do. I remembered my heart beating wildly while my anxiety grew. After the test, the IV was removed and because I was in a hurry, I was told to collect the results on August 16.

August 16: Results came back and the scan was read as remarkable by Dr Azlin:

Report

“There is soft tissue lesion seen in the right submandibular space extending into the right sublingual space measuring 5 x 2.5 x 3cm. The lesion appear partly arising from the right submandibular gland. There is NO further cervical lymphadenopathy seen. The left submandibular gland, parotid and thyroid gland appear normal. Nasopharynx, oropharynx, larynx appear normal”.

Radiologist Impression:

“Soft tissue lesion in the right submandibular gland extending into the submandibular space and sublingual space – epidermoid”.

Dr Amin agreed, believing it was a benign tumour. We then decided to have the tumour removed: I was scheduled for surgery on Tuesday, September 21. The plan was to open up my neck, make a quick cut and send a sample of the tumour to the pathologist for immediate examination.

September 3: As I was on study leave, I just dropped by APSH for awhile to pass my insurance details to Zalikha, Dr Amin’ assistant. With my ICAEW Taxation paper coming up soon (Sept-15), I obviously wanted to focus on exams.

September 12: If I read the newspaper, I will always read the sports section first, and then glance at the front page for any hot topic highlighted and if nothing interesting catches my eye, I will turn to the middle of the newspaper and read the cartoon and horoscope and cheer myself, and then read the movie review. I hardly ever read newspapers these days page by page, especially when I am busy revising for my exams. However, of all the days, I didn’t know why I felt like reading everything today; left to right, top to bottom. Quite by chance I came across an article in the Star – “Lumps in the Neck” by Dr Ong Chun Chiang, reminding me of my surgery. After reading it, I just had to cut it and pasted it in my Organizer because it’s a very spot-on article!

Related excerpts from the article:

“Salivary glands swellings - We have three types of major salivary glands (parotid, submandibular and sublingual) and a lot of minor salivary glands. Lumps can arise from any of these glands and they can be benign or malignant. Cancers of the salivary glands come in many different forms. It is advisable to have these lumps removed once detected. Cancers require urgent treatment in the form of surgery and possibly post-operative radiotherapy with or without chemotherapy, depending on their extent and nature”.

SPOT-ON!

My Story - Adenoid Cystic Carcinoma

I haven’t done this in quite some time. A lot of things had changed since my last blog post, dated 3^rd November 2007 - I had graduated from university, got a job, changed fashion style, bought myself a car, moved to a new area, met new people, found love… and the list goes on and on. About three years have passed! Little did I know that I was about to embark on the most trying experience of my life:

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.

A message from my Mom

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. :)

TIMELINE

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.
  
  

Thank you all for being a part of my life. I am blessed. I believe that there is always light at the end of the tunnel. Each time I pray that God will see me through this with continued blessings for a full recovery. I knew He was with me all the time; I am not fighting this battle alone…

“Verily, with every difficulty, there is relief”. (Qoran: Al-Inshirah, 94:6)

P.S.: I will try to constantly update this post for my latest story (through my timeline). There's just so many medical jargons to absorb - Thank God for Google!