Playing with numb3rs

Today I read an article about this lady Jane Goody, whose detailed story I got from reading a link posted by one of the cancer survivor's blog that I frequent. She was a British reality TV star and was dubbed one of it's most hated celebrities after she made derogatory remarks towards the Bollywood star, Shilpa Shetty. You see, ada ke patut this Jane Goody called si Shilpa Shetty tu a “dog,” plus various other racial slurs? Ish, ish, ish.... But I'm not into that. What she did was her business. What I am going to write here is on her cancer and her experience in battling the illness. Actually I've read briefly about her story sometime ago but did not take heed back then. But today, I bersemangat utk bercerita ...

Jane Goody had cervical cancer. When she was diagnosed with it, she was only 27. Actually prior to that in the early 2000s she has had several health scares. She had a pap smear done on her which revealed the presence of abnormal cells, the first possible indicator of cancer. But when she was later tested for ovarian cancer in 2004 and bowel cancer in 2006, she was given the all-clear on each occasion by the doctors. So naturally lah kan she must have thought that she was cancer free.

However after collapsing four times, in early August 2008 she again went in for tests. Then on 19th August 2008 she was finally confirmed that she had cervical cancer. Initially she was only told that her cancer was still at an early stage but when more tests were done, her cancer was suddenly diagnosed as "advanced and life-threatening". Imagine her devastation. Itu kata org putihlaa, kata org Melayu "terperanjat beruk". Lebih kurang gitu le. Yalah.. to be told you have cancer is already bad enough but to be told that it's terminal, hemm believe me... it's unimaginable. I knowlah because that's what I went through 5 months ago...

Referring to Goody, what went wrong during her earlier tests? Salah doktor ke? Tampered results ke? Your guess is as good as mine. Tp orang kata there are so many mysteries of life. I believe cancer is one of them. That must be it. You see, with cancer you can never tell. It's an unpredictable silent killer. Today you are up and well, tomorrow you're not. Fututre? Only God holds the knowledge.

FIY, cervical cancer has an 83% survival rate, but nevertheless it kills more than 800 women each year and is the second most common form of the disease for women under 35 after breast cancer. For Goody, the doctor gave her the survival rate of as low as 65% if she would have an operation followed by chemotherapy. She obliged, had a radical hysterectomy that went well, and then began a course of chemotherapy and radiotherapy.

However on 4th February 2009, Goody's cancer had spread to her liver, bowel and groin. Therefore, the previous estimate of percentage chance of survival was withdrawn and she underwent palliative treatment to prolong her life. On 7th February, Goody was reported to have had undergone another surgery in London, this time to remove a tumour on her bowel. Later on 14th February doctors at the Royal Marsden Hospital in London where she had her treatment, declared her cancer as critical and said that she could be dead within weeks, at the most was unlikely to survive more than a few more months. Goody eventually died in her sleep in the early hours of 22nd March 2009. Exactly 7 months 2 days from the time she was diagnosed.

What has all the above got to do with me? Well, ada kena-mengena sedikit-sedikit, maybe...

Tene tene tene tene tene teneeeee... alah itu bunyi background music macam intro dalam citer Twillight Zone tu lerr. Tiba-tiba je berbunyi mcm gitu tengah aku nak recap balik dalam kepala aku apa yg dah berlaku pada aku for the past 5 months... Deyyy! Apa daaa...? Kalau E-Ya baca ni, mesti dia kata, "Confirmed Acik aku punya fuse dan wire dlm kepala dah ada yg putus dek kena radiotherapy banyak kali". Hemm ... nasib kau la dapat makcik macam aku... hahaha

OK, serious, serious ...

When I first went for treatment, I was diagnosed as having fibroid problem only by the doctors treating me. Not one, but three doctors. They were - one from the private Gynae clinic near my home, another from HKL and the third from Pusrawi.

However later at Pusrawi under general anaesthasia, I had a cervical biopsy done. The doctor reported I have "moderately differentiated adenocarcinoma of the cervix". Itu cakap long handnya, cakap short handnya - cervical cancer. But alas this diagnose was also later proven wrong.

A few days after the biopsy I was again under general anaesthasia for staging and cycstoscopy. It was then I was finally given the correct diagnose of endometrial cancer by the Gynae & Onco specialist who performed the procedure. Itu pun he thought it was just a stage 3C cancer. During that time I was told the treatment for me would be hysterectomy, followed by chemotherapy and radiotherapy. Just as what the doctor prescribed in Goody's case.

Right after the biopsy, I had a swell on my neck. It did not take long to develope. Just overnight, I think. It became very noticeable during my staging and when I was transferred to HUKM, I did FNAC onto it. The swell was also later tested positive for cancer, and thus my stage had suddenly jumped from 3C to 4B. That's when everything was changed.

The first few days in HUKM, in the O & G ward the doctors did nothing. I was left to just rest and be visited by doctors on duty, took a few blood samples, asked the usual daily basic questions of "Macam mana rasa badan, buang air kecil dan besau elok tak and loads of other bla bla bla..." As my stage was a 4B, the doctors scraped hysterectomy for the time being and decided to proceed with chemo instead. Their rationale for doing so was to shrink the tumor first, so that surgery would be a breeze. As for the chemo, well we know what happened to that don't we? Only much later was I told by the doctor that there is actually no effective chemo drug for endometrial cancer. Everything is sort of like trial and error depending on your body tolerance. If the drug works for you, marvellous. If not you may be given other drugs to try or no chemo at all.

Thus with the history of a failed chemo, my case was then taken over by the Onco Unit which later decided to radiate me. I had my first session of radiotherapy in December 2008 and the last, just the previous month of February 2009. To date I have been radiated 50 times front and back at three different spots - pelvic, abdomen and neck to tackle the problem in the uterus, para aortic lymph nodes and neck respectively.

I began to have questions in my mind when the two units treating me, O&G and the Onco Units were at loggerheads with one saying I am operable and the other saying I'm not. Actually there are many questions bugging me. Mingling with other cancer patients during treatment only added up my confusion when almost all of them have had either surgery or chemotherapy prior to radiotherapy. But not me, radiotherapy was my only option. No surgery, no chemotherapy.

I did many read ups on my cancer. I found that endometrial cancer, is not like any other cancer because it occurs within the lining of the uterus, called the endometrium. Even with a pap smear, it does not usually show because cancer of the endometrium begins inside the uterus. As for the risk factors well, normally people who gets endometrial cancer are those who are:

• Over 50 years of age (I am not there yet)
• Taking hormone replacement therapy (I do not take any hormone)
• Obese or having obesity-related conditions, such as diabetes (Hah! Me obese? Kurus keding lagi ada. I'm also not a diabetic person, coz dr dulupun tak suka minum air bergula)
• Being Caucasian (Walaupun aku bukan Jawa tp aku tetap Melayu...)
• Taking tamoxifen (Nope. I'm not a breast cancer patient prior to this)
• Having an inherited form of colorectal cancer (Again, nada ...)
• Early menstruation, starting before the age of 12 (Pun tak de kena-mengena coz I was a late bloomer. Masa Form 2 aku masih gila main lastik kelawar lagi ngan geng aku)
• Late menopause, after 52 (sblm sakit manalah aku tahu bila aku nak menopause? Tandapun tak de. Tp sekarang lepas radiotherapy, rasanya dah terpaksa dimenopausekan)
• Endometrial hyperplasia - increase in the number of cells in the uterine lining; usually not cancerous, but they can develop into cancer over time. (BINGO! This must be the cause. Alas it's my theory only. Doktor tak pernah mentionpun if I contracted cancer because of this. Furthermore the percentage of this happening is very minimal)
• Never having given birth or a history of infertility (Another BINGO! Again my theory only. Aku tak pernah kahwin mcm mana nak beranak, ye tak? Anak tekak dan anak mata tu aku ada lerr. Infertile? Dulu sebelum sakit? Tak mungkin kot. Tp sekarang sah-sahlah sudah, sbb dah kena radiotherapy...)

But then, there are numerous cases whereby patients don't even fall into any of the risk factors group above but they still get cancer, true or not? Thus, all these risk factors thing is debatable. Not only for endometrial but for other cancers as well.

How does endometrial cancer spreads? If left untreated, the cancer that arises in the lining of the uterus, will eventually invade the wall of the uterus and may involve the cervix. With time, it can grow through the wall of the uterus into the surrounding tissues (the parametrium), the bladder and the rectum.

It can also spread by the lymphatic system to the vagina, fallopian tubes, ovaries, the pelvic and aortic lymph nodes and to the lymph nodes in the groin and above the collarbone. Endometrial cancer can also spread throughout the abdominal cavity and occasionally through the bloodstream to the lung, liver and brain. How rapid it spreads depends on the aggressiveness of the cancer.

My case is a bit unusual. I really and truly thank God the AlMighty for that. True my cancer is aggressive and it did spread through the aortic lymph nodes but it did not affect any other parts or organs near the uterus, except shoots itself straight up to the collarbone. What causes it to spread? UNKNOWN. No wonder the doctors treating me pening ...

As for survival rate, the earlier the stage the greater your chances are of being cured. But again this statistics are also very subjective as I found them to vary from site to site. However on the average, the 5 year survival rates for endometrial cancer by stage are as follows: 75% to 95% for stage 1, 60% - 70% for stage 2, 40% - 60% for stage 3 and less than 5% - 10% for stage 4.

Which category do I fall into? What are my chances for a 5 year survival rate? Well, on my last visit to the O & G, I was told by the doctor that my 5 year survival rate was less than 20%. In other words, my chance to live another five years from the day I was diagnose is pretty slim. I still remember the doctor mentioning it and he even asked me if I understood what that means twice, as I was a bit aloof at the time. I never mentioned this fact before in my previous entries because being a Muslim I believe ajal maut is in God's hands and I have faith in HIM. 5%, 10%, 20% or even 90% are just numb3rs to me. Nothing more. Take a look at Jane Goody's case. She was given a 65% chance of being alive and yet after 7 months she was gone. Was it because of the statistics? No, it was all God's work.

Then there was this one endometrial cancer survivor story that I recently read about. She was given less than 30% of survival rate by the doctor in 2000 when she was first diagnosed. But to date; in 2009 after 9 years, she is still alive and kicking. Again was it because of statistics? No. It is all God's work.

Thus, 20% ke, 5% - 10% ke I don't care. I will try my best to battle this cancer. What will be, well... let it be.