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Marilyn’s story

marilynnelson2In August 2013 at the age of 61, I was diagnosed with non small cell lung cancer (nsclc) out of the blue after having a CT scan on my neck and upper back for ongoing neck pain. The CT scan showed a 3cm mass at the top of my right lung!   No symptoms at all. I’m a never-smoker. It was a complete surprise.

A fine needle biopsy confirmed it was an adenocarcinoma. Surgery followed very quickly – a right upper lobectomy. The hope was that it was at an early stage (IIa I think) and removing that segment of my right lung may result in a cure.

It wasn’t to be. Pathology from surgery showed a small amount had spread to the lung lining (pleura). That meant chemotherapy for 12 weeks to mop up the cancer cells that had escaped to the pleura. Aim was still cure, and at that stage, with chemo, the stats on likely recurrence within 5 years was 30-35% (not bad but not ideal).

Chemotherapy was a gruelling experience made worse because the regime included 2×6 hour infusions of potassium and magnesium after the chemo itself. That meant an overnight stay in hospital each time. It was horrible – particularly the potassium I think it was – resulting in a feeling of my whole body burning from inside for the entire 6 hours of the infusion. Sleepless nights in hospital. It was only in the morning when the oncologist visited me in hospital that I was able to tell her how unwell I felt. She said she would reduce the potassium dosage for future treatments.

I also had a pretty bad time the whole week after that first treatment. I could barely eat or drink. They said to phone the chemo ward (during business hours) if I had nausea. I didn’t have nausea at all. I just couldn’t eat or drink much as my stomach felt hard and full. Turns out that’s what was meant by nausea! I lost 4kg in that first week. The chemo nurse was horrified and alerted my oncologist. The result was a reduction in the chemo dosage, plus I had to come back to the chemo ward 3 days after each treatment to get a drip with saline fluid to rehydrate me. It was easier after that.

Lessons learnt from chemotherapy (chemo):

If you have chemo, speak up if you have problems. Your symptoms might not perfectly match those they tell you to look out for, and they will probably be able to help you. Don’t worry about being a pest. Don’t wait – speak up – get help. If I had known how bad I would feel, and that it was not normal, I would have spoken up earlier and I’m sure it would have been an easier journey. I also found out afterwards that some patients refuse the potassium/magnesium infusions because of the horrid side effects. I didn’t know that was an option at the time.

A month after chemo ended, I became increasingly short of breath. My right lung space had filled with fluid. What followed were two Thoracentesis (drainage procedures) over the next 2 months, but it filled up again. After the 2nd draining, it was decided I would need a Pleurodesis.

This surgery is a pretty serious thing and knocks you about a bit (but no more than the original lobectomy), but it worked! I could breath properly again.

In November 2014, 12 months after chemo ended, my routine review by PET/CT scan showed an enlarged lymph node inside my chest. That dreaded word: recurrence.   This news was given to me over the phone by my medical oncologist who said she was referring me to a radiation oncologist at a different hospital for radiation treatment. She didn’t offer for me to come in and see her to talk it through, so I had to ring her office and make an appointment for the following week. Sleepless nights until I could meet with her. She gave me the facts, but with no sympathy or support. I was more than shocked. I was gutted. But on to radiation treatment, the first week of which I must admit I found quite overwhelming – many tears flowed. But after the first week it all became routine and went very smoothly, with very itchy patches of skin being the only side effect.

I was being treated at that stage privately. My GP had referred me to a thoracic physician when the CT scan showed the mass. The thoracic physician did a bronchoscopy and fine needle biopsy. With diagnosis of adenocarcinoma, she referred me to a cardio-thoracic surgeon. The surgeon was a lovely man thankfully. Two days after surgery while still in hospital, a medical oncologist arrived at my bedside and explained that chemo was necessary. Then when the cancer recurred last November, my medical oncologist referred me to a radiation oncologist at a different hospital. But during all of this, I felt there was no-one I could call if I had queries, apart from the medical oncologist’s secretary who was very nice and would pass messages on and I would await an answer. Answers were generally short – yes/no/make an appointment. Very little information really. I must say that most of the information I obtained was from the web.

Lessons learnt about navigating the medical system:

I began to think: isn’t there something better than this? What about the well organised “clinic” setups they have for breast cancer? They combine all the areas of medical support, and wrap that around the patient. They are well funded, and very good at it. My sister experienced that a few years prior while being treated for breast cancer within the Brisbane public hospital system, and she was very grateful, and confident with them. I thought, surely for something like lung cancer, which is by far the biggest cancer killer, there would be something better than just being bounced from one private doctor to another. I rang the Cancer Council and then Lung Foundation Australia. Answer: YES there were several “clinics” in Brisbane for lung cancer and they are in public hospitals. They are called “multidisciplinary teams“. Multidisciplinary team may include medical oncologists, surgeons, radiation oncologists, clinical nurses, dietician, physiotherapist, psychologist, social worker etc – a coordinated team approach. All of these support services may be available to you. If you have a question between appointments you can call the clinical nurse and she will seek out the information for you, or arrange an appointment.

So I asked my medical oncologist to refer me to an oncologist who specialised in lung cancer treatment in a clinic environment, for a second opinion. She referred me to a specialist at The Prince Charles Hospital (TPCH). When I met him I was impressed with his knowledge and his kind manner. I am now seeing him within the public hospital system as a private patient. Having switched from private to public, I now have the whole of that hospital’s multidisciplinary team available to me if and when needed.

At around this time I was forced to resign from my job due to the ongoing health issues. No more income. Luckily for me, being treated in the public hospital system also meant no more big out-of-pocket costs that had been associated with some of the private medical care.

Lesson learnt about doctors:

Ask around – especially of people who have recent experience in lung cancer. Also don’t be afraid to ask for a second medical opinion. In fact, I think it is an essential. If nothing else it may give you extra confidence with the doctor you are already dealing with. Most important though is to get yourself under the care of a multidisciplinary team specialising in lung cancer.

In June 2015, my CT scan showed a further recurrence. Nightmare territory again. And my lung was again filled with fluid. So another pleurodesis surgery followed, and then on to medical oncology treatment.

I am now on targeted therapies. These drugs target specific genetic mutations that can underlie a particular cancer. Not everyone has them. In my case, I have an EGFR mutation. That meant I should be amenable to one of several EGFR targeted therapies. My new medical oncologist at TPCH recommended a clinical trial to me. I started that almost 12 months ago. It is a phase 3 trial, double-blind, where you take 2 tablets daily. I am receiving either the current best EGFR drug or the trial drug. You never know which one you are on, but I am at least getting the current best drug, and perhaps the new better one. I responded very well to the trial drug. One year on, I am still here and feeling very well thanks to the clinical trial drug, with only minor side effects, and my 6 weekly CT scans continue to show a huge reduction in tumour sizes. Yay!

This genetic mutation was only tested for last November after the enlarged lymph node showed up – a full year after original diagnosis and biopsies. I was told that at that time (2013) they usually only tested for it if there was a recurrence. These days they routinely test for genetic mutations when you have been diagnosed with nsclc.

Lessons learned about support, family, friends, fears & anxieties:

I have had wonderful support from my family from day one. I know I can always rely on them, no matter what. But honestly, I’ve found it a very lonely journey. No one really understands what you’re going through – it’s so very personal, and so very frightening. I had no end of people telling me to “just keep positive”, as though that was all I had to do to cure the cancer. I sometimes think people say that because they really don’t know what else to say. But it’s really not helpful. I also had well-meaning friends offering the latest discoveries on magnets, hemp oil, reiki, and other weird stuff as being potential cures. Are you mad? I found it impossible to “keep positive”, and then felt guilty that I couldn’t. Some days I can go on as though there is nothing wrong, other days I sink into a black hole. It’s an ongoing project. The Cancer Council’s phone counsellors have been a huge help when I’ve felt really bad. And I can get counselling help now via the multi-disciplinary team at TPCH. There is practical help available to deal with the fears.
You just need to ask.

Some days are just crap. They do pass, and you’ll feel better on the other days. Be sure to make the most of the good days. There’s nothing like a happy day full of good experiences to make up for the unpleasant treatment/medical days.

My advice to those recently diagnosed with lung cancer:

  • Get yourself treated via a multi-disciplinary team specialising in lung cancer.
  • Seek out as much relevant information as possible. Good sources are:
    • Cancer Council – information , phone support and counselling available for yourself and your family
    • Lung Foundation Australia and their Lung Cancer Network – a great help.
    • American Cancer Society website
    • Macmillan Cancer Support website – a highly regarded UK cancer treatment centre. Authoritative website.
  • Avoid the non-authoritative websites that come up in Google. Their info is often out of date and also unnecessarily scary.
  • Speak up whenever you have concerns. Ask lots of questions. Be your own best advocate.
  • Write everything down. The shock of diagnosis & treatment can make your memory fail you.
  • Take all the help and support you can get from family and friends. Don’t try to tough it out by keeping your fears and concerns to yourself.
  • Good books: “So it’s cancer: now what?” written by Australian medical oncologist Dr Ranjana Srivastava. She gives lots of info and facts, but given with lots of heart. “Living with lung cancer: my journey” by Thomas Cappiello. A survivor who was very active in all aspects of his treatment. He’s very much his own best advocate, and it worked for him.