A story of hope- my mum beat incurable cancer.
A shock to the system
My mum’s cancer journey started before her diagnosis. It came completely out of the blue. I couldn’t imagine my robust and healthy mother ever getting cancer. It had to be a mistake. Mum had been recovering from a very bad chest infection and requested an x-ray to see if she could be prescribed medication to help clear the infection as she still didn’t feel right.
Our lives changed in early February 2020 when mum got a letter from the hospital referring her for further testing as they found something suspicious on the x-ray. They suspected cancer.
Although my mum had been a former heavy smoker, she had given up fifteen years prior to diagnosis, so the idea of her ever getting lung cancer seemed remote to me. Quitting smoking majorly improved her health and lung function. Apart from the chest infection, mum had no other symptoms. I thought, how could she have cancer if she had no symptoms?
Probably that point before the official diagnosis was the worst as we had no idea what we were dealing with; what stage the cancer was and of course there was a possibility that they might have got it wrong and it wasn’t cancer after all. The not knowing was scarier than knowing.
I had very limited knowledge of lung cancer, but I had heard that it was one of the worst cancers. One the cancers that are the hardest to treat with a high mortality rate. I researched about it online, and the statistics were extremely depressing, especially for stages 3 and 4. I prayed that if it was cancer, then that it would be caught at the earliest stage.
The dreaded news
They told mum to bring somebody to the consultation, so we knew it wasn’t great. I’ll never forget the moment that they called us into the consultation room; the four of us- my mum, myself, my brother and sister in law- absolutely bricking it. Mum tried to crack a few jokes to break the tension. The consultant reciprocated mum’s banter and I half sighed with relief. If the consultant was upbeat maybe it meant that it wasn’t really concerning. My relief was extremely brief. He showed us the screen with the CT scan and uttered the dreaded confirmation, “I’m 99% sure that it’s cancer.” My heart sank.
“It’s treatable but not curable because it’s inoperable,” he continued. The consultant staged my mum’s cancer as stage 3B, which is almost always inoperable. The symptoms of lung cancer often don’t appear until the cancer is very advanced hence why mum didn’t have any symptoms.
The consultant did give us some hope by saying that lung cancer treatments have improved and that if my mum had been diagnosed with lung cancer ten years prior, she would have only been offered palliative care.
It was a very scary thought, but we tried to remain positive. I didn’t want to ask what treatable but incurable really meant. How long would my mum have left? Would she have months or years?
I read more about it online, but I couldn’t get any definite answers. The consensus was that some people can live with incurable cancer for years, but it depends on how well treatment works. There was also a fear that the cancer could spread further outside the lung, making the cancer even harder to treat.
I tried to remain hopeful. It was the only thing that could get me through such a hard time. I also wanted to equip myself with as much knowledge as I could in order to understand my mum’s cancer. I researched different treatment options and read about different clinical trials. I read hopeful stories, which really helped me to stay strong.
Educating myself about cancer
Everybody around me was negative. Only my mum and I tried to stay positive. Even my brother wasn’t hopeful, saying that he had heard too many stories of people with incurable lung cancer not making it. It was understandable, but you can’t compare people’s experiences. People are not statistics. I learnt that cancer is so different. Not even two people with the same type of cancer and stage will have the same outcome.
I learnt so much about cancer since my mum’s diagnosis. I poured over medical journals I found online and learnt to navigate the jargon. I was obsessed with finding out as much as possible, especially about my mum’s specific cancer subtype. I’m autistic and can spend hours hyperfocused on a subject. My mum half joked that I could be a doctor.
Through my research, I learnt that there are so many different gene mutations and that even with the same subtype of cancer, you can have completely different mutations. These mutations require different treatments. Thankfully, there are so many new treatments that target these mutations known as targeted therapy.
The more research I did, the more hopeful and confident in medicine I felt, even with the dire but outdated 5 year survival statistics for stage 3B which range from 3- 33%. I read stories of people with inoperable stage 3 and even stage 4 lung cancer who had long-lasting remissions and were still alive and well years after treatment. In some cases, people were completely cured.
I always thought that cancer was a uniform disease, with each type being the same but just in different parts of the body. I thought that you either got cured from cancer or you died from it. I didn’t know there was even an in between.
New hope
Positivity is key when dealing with such a serious illness. My mum has always been such a positive and resilient person, so I think that really helped her to pull through. Being so mentally strong and in physically good condition for a 70 year old helped her to put up with such aggressive treatment.
My mum’s oncologist, however, was the key player in curing my mum, and I will thank her until my dying day. I remember the consultation with my mum’s oncologist - a tiny and petite woman with a no-nonsense approach who exuded confidence yet compassion.
The oncologist explained the treatment plan, which included chemo radiation followed by immunotherapy. “We’re aiming to cure with this treatment,” she explained. This was the first I had heard of a cure being possible. The first consultant seemed so sure that mum couldn’t be cured.
The oncologist made treating my mum seem like a piece of cake. To hear such confidence and optimism from a medical professional filled me with hope. Whilst I knew not to get my hopes up and there was an equal chance that my mum wouldn’t be cured, I held onto the chance that she would.
My mum was lucky to have been diagnosed just before the COVID pandemic and lockdown in the UK. It was even luckier that her treatment wasn’t affected, although it meant that I couldn’t accompany her to the hospital and support her during her treatment.
Treatment
The cancer treatment was incredibly tough for my mum. The radiotherapy wasn’t too bad, but the two rounds of chemo completely wiped my mum out and depleted all of her magnesium. Mum also experienced an unbearable burning feeling on her face, which cold flannels did little to alleviate. I had never seen my mum so weak before.
The effects of the chemo were so bad that mum had to be rushed to hospital. It was an extremely scary time, and I was so scared that mum wouldn’t make it. I couldn’t even visit her because of COVID.
Luckily, mum pulled through and was able to come back home. With the chemo radiation finished, mum had to have a scan to see if the treatment had worked. If the chemo radiation worked, immunotherapy would be the next step in the treatment plan.
Good news
The scan results showed that the treatment had worked. The tumour had shrunk by more than half and mum would be able to have immunotherapy. Initially, we were disappointed that the tumour had only shrunk by half, but the doctors explained that the tumour was still in the process of shrinking further even after treatment had ended as the cancer cells keep on dying.
Mum was hesitant about going through with the immunotherapy because she feared the side effects. I could understand her fears, but I didn’t want her to miss out on such an innovative therapy that could potentially cure her.
I pleaded with mum to go through with the immunotherapy and think about the long-term prospects. Also, the side effects of immunotherapy were said not to be as bad as chemotherapy. “Please don’t pass this opportunity to take a groundbreaking new treatment which not everybody is fortunate to receive. It could save your life,” I reasoned with my mum.
She agreed to take the immunotherapy, and I prayed that it would work.
Incredible news
A month after starting immunotherapy, mum had another scan to see if the tumour had shrunk further. When mum came back from her appointment about the results of the scan, she had a big grin on her face.
“Get the champagne darling because the scan showed that the tumour has pretty much completely disappeared! The doctor said it’s excellent news!”
I couldn’t believe this incredible news. For the first time in my life, I felt that luck was on mine and mum’s side.
A tough few months
The saying that things tend to get worse before they get better is really true. The side effects of the immunotherapy were really bad and led to another hospitalisation. Mum developed shingles and pneumonitis. However, she bravely continued with the treatment.
Mum’s care had to be overseen by other doctors whilst on the immunotherapy. Unfortunately, these doctors weren’t as brilliant and as hopeful as mum’s oncologist. One of the doctors reiterated that mum’s cancer was incurable and that mum’s oncologist was wrong. Mind you, this was a very young doctor who was newly qualified, and mum’s oncologist is a very experienced oncologist who also works at a very prestigious cancer hospital (where my mum had her chemo radiation).
Bad news again
In January 2021, we received another devastating blow. My mum had an appointment to discuss the results of her latest scan. This time, mum didn’t look happy when she came back home from the appointment. She was also accompanied by a friend. My heart sank. Mum explained that the cancer had returned and the tumour had grown even bigger than it was originally.
We were absolutely devastated and heartbroken. The treatment clearly hadn’t worked. The only treatment that mum could be offered now was chemotherapy and I didn’t have much hope for the chemo working. Mum’s outlook looked bleaker than it had at the beginning. I remember that night I drank a whole bottle of wine and cried my eyes out. I had to face the very real prospect that I could lose my beloved mum.
To make matters even worse, mum had been assigned to a new doctor who was extremely negative and rude. He was unwilling to help mum. When she asked about clinical trials, he just shrugged his shoulders and said that he didn’t know about any clinical trials. When my mum asked about her prognosis; if it was terminal and if she was going to die, he shrugged and rudely said he didn’t know. Mum was in tears due to his callous attitude.
A ray of hope
Mum’s brilliant oncologist phoned my mum. She said that she was determined to do whatever she could to help my mum. There was a clinical trial that she wanted to sign my mum up to. She sent mum the papers with further details of the trial and to give her consent.
I felt renewed hope. I prayed that this time, the treatment would work. Mum still had to have some scans and tests before she could start the trial.
A miracle!
With renewed optism, I felt better about the situation. Of course, the trial wasn’t guaranteed to work, but the fact that mum’s oncologist wasn’t ready to give up on her gave me fresh hope.
Mum had gone for a consultation before she could start the trial and had had a scan before. Mum walked through the door with a great big smile on her face and a bottle of champagne in her hand.
“I don’t have cancer!” she announced.
Before I could get excited, I felt confused. The scan had shown that the cancer had returned and she was signed up for the clinical trials. Had they got mum’s scans mixed up with somebody else’s?
Mum explained that the initial PET scan showed high activity. High activity is usually associated with cancerous activity. However, the CT scan my mum had undergone a week before showed that there was no tumour.
A team of experts got together and analysed both the CT and PET scans. Their thorough analysis showed that the activity on the PET scan wasn’t cancer. It was inflammation! The treatment had created a massive immune response! The treatment had worked.
The doctors also explained that this phenomenon is known as pseudo progression, whereby the cancer appears to be getting worse, but in actual fact, it’s getting better, and the treatment is working. The treatment creates a huge immune response, which results in inflammation.
It meant that mum didn’t need any treatment or any clinical trials. It was such a miracle, but I didn’t dare get my hopes up again. The journey wasn’t over. It was still a long road ahead and mum would still have to get regular scans. I could only pray that the cancer wouldn’t return.
5 years post diagnosis
It’s been over five years since my mum was diagnosed, and I’m thrilled to say that mum is still cancer free. Mum was discharged from the cancer unit last week as she’s been in remission for over four and a half years, and mum’s oncologist said that it’s very unlikely that her type of cancer will ever return. Mum understandably still wants to be checked, so her oncologist said that she can have a scan once a year to put her mind at ease.
Mum is doing amazingly well and is living life to the full. She spends a lot of time travelling. Five years ago, I was terrified about what lay ahead. I didn’t want to imagine the possibility that mum might not make it. I couldn’t comprehend it.
I hope that my mum’s story gives other cancer sufferers and their families hope. There have been many groundbreaking discoveries and game-changing treatments. New treatments are being approved all the time, and there are many clinical trials.
I’m most grateful to my mum’s incredible oncologist not only for saving my mum’s life but for believing in her and not giving up on her when other doctors did. I wish there were more doctors who cared about and believed in their patients.
If you’re not happy with your doctor, don’t be afraid to advocate for yourself and change to a different one. Cancer can already make you feel like your life is out of control, so cancer patients should be given back some of the control and have every right to choose a medical team that they feel comfortable with and have a good rapport with. Also don’t be afraid to get a second opinion.
Most importantly, never lose hope. Hold onto that hope no matter how small, and don’t give up on yourself or your loved one. Exhaust every option or possibility. You are not an outdated statistic, but a person with your own unique story and set of circumstances.
I wish you all health, happiness, and healing 💕.
