Cry me a river
Sunday December 9, 2012
What next if you’re diagnosed with cancer?
IF you have just been diagnosed with cancer in the last fortnight or so, have a good cry. Why not? It is sad and frightening news. There is so much uncertainty. There are many unanswered questions. Thoughts of death flit through your mind. All that you are used to may take on a new complexion.
Let the tears flow.
Then, wipe your tears and regain your composure, for the hard-thinking part is about to start. Here is a guide I have put together on what to do next.
No rush
The cancer has been growing in your body for decades. It takes 10 to 20 years for the first cancer cell to transform to a mass of detectable and diagnosable cancer.
Take at least two weeks to a month to work things out. Do not embark on any treatment – surgery, radiotherapy, chemotherapy and targeted therapy – until most of your questions are answered. And until your emotions are no longer on a roller-coaster.
The pathological review
In all probability, the diagnosis of cancer was confirmed after tissue from a certain part of your body was examined in the laboratory.
Ask for a pathological review of your biopsy/surgical specimen (polite term for second opinion) if there is uncertainty as to the subset of cancer. Perhaps it may not even be cancer, but it is unlikely if your medical history and physical examination point in that direction.
Sometimes, the initial pathological study is not detailed enough. For example, if you have been diagnosed with breast cancer, the pathological information should include the size of the tumour, the number of lymph nodes in your armpit affected by cancer, the grade, the oestrogen receptor status, the progesterone receptor status, the presence of lymphovascular invasion, and the HER2 status.
The HER2 status is an indication of how aggressive the tumour is, and whether your tumour will respond to a certain class of drugs. Many pathology reports do not include all this information.
Another example is lung cancer. Today, lung cancer is approached as if it were approximately 10 different diseases. Is your lung cancer EGFR mutation positive? Is it ALK protein positive? If it is squamous cell carcinoma, certain drugs work better and certain drugs less well. If it is small cell lung cancer, a different approach is needed.
The stage of the cancer
It is important to know the stage of your tumour, ie how far the cancer has spread.
Firstly, it is to avoid unnecessary surgery if the cancer is at an advanced stage. Take lung cancer. If surgery is contemplated, we ask for a positron emission tomography scan (a PET/CT scan). This scan will show if the cancer has spread extensively to the lymph nodes in the vicinity of the lung, or to a distant site in the body.
Surgery is then not warranted. If the PET scan shows a localised, potentially operable tumour, the next step is to insert an ultrasound probe into the large air passages of the lung and oesophagus to determine if the tissues behind your breastbone are involved with cancer. If the answer is yes, surgery is out.
Secondly, the stage will determine the type and number of cancer drugs to be used. For instance, in stage II colon cancer, we usually use two drugs, and in high-risk stage II and stage III, we use three drugs.
The doctors
Never be pushed to see any doctor against your wishes. Choose your surgeon wisely.
You should also choose your radiologist (the doctor who undertakes and studies X-rays and scans) and your pathologist.
Needless to say, you choose your oncologist.
All these specialist doctors will work in concert to look after you.
Your friends and counsellors
Whether to share this painful news with your loved ones is entirely up to you. After all, cancer (or any illness for that matter) is a very private matter. You can keep it all to yourself (and there is much to say for this), or share it with the world.
The danger of too many people knowing about your cancer is obvious. Purveyors of alternative medicine won’t leave you alone. Multi-level marketers of food supplements, multivitamins/multiminerals and fruit juices will assail you with their latest cure-alls and “boosters of the immune system”. Religious zealots will make a beeline to your home to save your soul.
At such a time, you really don’t need all this mumbo-jumbo.
Be thorough, systematic and punctilious
Start a folder for all your medical, laboratory and X-ray reports. All bills and correspondence to insurance companies too.
Request for written information each time you see a doctor – this goes into your folder as well.
All these notes will help you help your oncologist immensely. You will also feel “in charge” to some extent, and this will boost your morale. In today’s cyberworld, this information should also be maintained in your computer. And a back-up is the prudent thing to do.
The second opinion
Not only is the second opinion important, perhaps a third or a fourth may be necessary. You can then weigh the wisdom against the folly of each opinion you get.
However, I wish to warn you of two pitfalls. The first is: be clear that you are not seeking a second, third, fourth opinion just to hear what you want to hear.
Scientific medicine is not a popularity contest. Nine doctors out of 10 concur on a certain treatment approach. This does not necessarily mean that the one dissenting voice is wrong.
The second pitfall is this: four opinions should not mean having four oncologists treating you at the same time.
Four ways of flying an aircraft does not mean four pilots grappling with the controls during the flight.
Change your attending oncologist by all means if you are not satisfied with her. But give your oncologist at least two months exclusively at the helm before you make that change.
By then, two or three cycles of chemotherapy would have been given. That would be the time to take stock if the chemotherapy regime is effective.
The crying may start again. And it is alright. Steel your heart, calm your nerves and boot up your brain.
You will be the better to fight your cancer.
Source: Cry me a river
