Friday, November 05, 2010

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 3rd 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. :)


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!


Anonymous said...

Greetings from USA! I just came across your blog. I hope you are doing well and live a long healthy life after your experience. Continue to pray to Allah. Hope you get well.

Mamapumpkin said...

Hi Munirah, I came across your blog by chance doing research on AdCC. My Mom has been suffering from it for 10 years now and I just wanted to tell you, that with a positive spirit and leading a healthy life, you can go a long, long way. Blessing to you and your family xxx

Anonymous said...

I'm in the U.S.A. My 17 year old daughter just told me today that she has some lumps around her throat. I took her to our doctor who has referred us to a cat scan, which will be done in a few days. She's been having quite a few health problems lately and I'm hoping that this is nothing serious. I appreciate you sharing your experiences. I hope that you do well with your treatments.

Anonymous said...

My brother was diagnosed in September of 2007. He is still continuing this battle with this cancer. My thoughts and prayers are with you. Keep up your strength and never give up hope.

Anonymous said...

simply stopping by to say hey

Anonymous said...

This cancer has a way to spread in a microscopical way along nerves that makes it almost impossible to catch and contain. Many people have had tissue (and nerves and glands and muscles and lymph nodes and whatever) removed in a radical way just to see it spread anyway.

I don't want to discourage you but newer studies show that almost everyone catching that kind of cancer dies within 20 years, no matter what the treatment was.

I'm living with this beast since 14 years now. I've had no surgery and no radiation and no chemo besides all the THC I can take once or twice a week or so and this seems to keep it in check, although I'm certain it will kill me sooner or later.

Check for the histology of your cancer, the cribiform (tubular, sieve-like) variant seems to take a much slower course than the solid variant and may give your immune system time to work against it. If you've got this, try everything to boost and rile up your immune system (try to catch every flu you can get), there are quite a few cases of spontaneous remissions caused by this. If you're allergic to anything, use this to get your immune system into a state of war.

I know this might sound desperate and stupid, but regular medicine has not much to put up against this cancer. Do not agree to radical surgeries except to buy time and survive. I would be walking around with half of my neck and jaw missing since a decade if I had agreed to what doctors said. Maybe I'm just lucky, but I'm still healthy and complete despite this beast having slowly spread around in a subtle way since many years.

I don't know if the THC (I usually make brownies from whatever hashish I can get) is some kind of wonder drug or if it works just because I have a kind of allergy against it (and I certainly have, it makes me all itchy and my skin inflamed) but it seems to work totally fine. All the sites affected by my ACC start to hurt and burn within an hour and I feel totally wounded and the next day it's over.

Whatever, this monster gives you time, use it! Be clever, try whatever you can. Again, get your immune system into a rage. The tumour masses of ACC usually are quite small and distributed, this is a good target for what your immune system can manage as long as it recognizes it as something to fight. Try to find a way to get into the mood for that. Allergies, drugs, infections, exhaustion, trauma, whatever.

Good luck!

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sgrmse. said...

love that you decided to share your story & journey instead of just keep it quiet & private. not that i have cancer myself, but it sure is interesting to read & know more.

glad you're no cancer-free!!!! STAY STRONG xx

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Shelley Sta Maria said...

My husband has just been diagnosed with ACC, it also was in the submandibular gland and had moved to the nerve of his tongue. My husband was born in Malaysia, in Melaka. He has been living in Australia since 1986. Doctors in Sydney were interested in his heritage.
It is a very rare cancer.

nurul iman said...

thanks really to the news ... hopefully more successful.
Cara Cepat Menyembuhkan Kanker Kelenjar Getah Bening

xiangbo said...

Hi aida i hope u will see mum was diagnosed that she have acc of breast...which is a very rare case even for acc ...the doctor treat it like other breast cancer in more common type which make me feel not confident with refer to online medical report, i found that the nature of acc is different with other breast cancer...

xiangbo said...

Hi aida i hope u will see mum was diagnosed that she have acc of breast...which is a very rare case even for acc ...the doctor treat it like other breast cancer in more common type which make me feel not confident with refer to online medical report, i found that the nature of acc is different with other breast cancer...

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