It’s really interesting to read in my blog post from August 9th 2020 celebrating my ‘all-clear’ where I write:
“The chances of staying in remission even after 2 years for cancers caused by HPV16 are very high, although this is not true for everyone and personal stories and experiences need to be listened to and remembered, as we are all much more than anonymous data”.
It’s a salient reminder that cancer should never be under-estimated, and I too now have a personal story to tell that is very much unfinished.
On Tuesday this week (26th October), I was told that I have secondary Stage 4 HPV cancer across both lungs. This is a *very* different diagnosis from almost 6 weeks ago, when I was told I likely had a new primary lung cancer. While both are incurable, treatments and outcomes are potentially very different.
So in this post I’ll detail the process leading up to the final diagnoses. It’s a much more convoluted process than I could ever have realised, and every part of investigation plays its crucial role. The roller-coaster analogy is an apt cliché!
David and I met with a specialist in respiratory medicine and a lung-specialist Macmillan nurse on 30th September. She confirmed that both the CT scan and the PET scan showed the presence of a tumour to the top of my right lung and several other small areas of cancerous tissue. The PET scan also picked up a new lesion in the left lobe of my lung.
A new primary lung cancer seemed likely partly due to the radiological features on the scans, specifically the spiculated appearance of the tumour, i.e. amongst other things, the lesions were not smooth in appearance, but ‘spikey’! Cancers may appear spiculated or spikey because of direct invasion into adjacent tissue, which I think means that the cancer was unlikely to come from a primary site far away.
However, to be more certain, biopsies of the cancerous tissue are necessary, and on 4th October I went into Barts as an outpatient for a bronchoscopy, or surgical biopsy. This requires you to be nil by mouth for food 6h before, and for water 4h before. I can claim one first though–the surgeon had never had someone have a biopsy the day after running a marathon before!
It was explained to me that from the biopsy, they look for special mutations and biomarkers on the cancer cells, as this will help target my treatment regime. For example, epidermal growth factor receptor (EGFR) is a protein present in cells that helps control cell division and survival. However, if it becomes damaged, then cells may proliferate, leading to a type of cancer called non-small cell lung cancer (NSCLC). Different mutations in the EGRF gene are therefore important biomarkers for different types of cancer, especially those that are Stage 4.
Another biomarker mentioned was PD-L1. I’ll blog about this later, but basically PD-L1 (or to give it its full name ‘programmed death-ligand 1’) is a protein that helps nonharmful cells escape attack from your immune cells by attaching itself to another “checkpoint” protein called PD-1. Some cancer cells also contain high quantities of PD-L1, and therefore avoid detection and attack from your T-cells and so are able to proliferate. In the biopsy, staining is done of the cells, and if the proportion of cancer cells with PD-L1 is high, then immunotherapy may be an appropriate treatment.
Exactly two weeks after my biopsy (18th October) I got a phone call from the consultant who undertook the biopsy. She wanted to feedback some of the biopsy results and discussions at a recent lung multidisciplinary team meeting held the week before.
The biopsy results were surprising. Staining of the tissue cells showed that the cancer was a squamous cell carcinoma, very similar to the type I had last year. This was confirmed by another type of staining which showed a strong +ve p16 stain, indicative of the presence of HPV16, which I’ve blogged about before.
So even though CT and PET scan images suggested I had a new primary cancer, biopsy results confirmed that my cancer is recurrent. That is, the oropharyngeal squamous cell carcinoma (OPSCC) caused by HPV16 that was successfully treated through chemoradiation last year, had already metastasized or spread to my lungs, evading treatment and control.
But this part of the story does not end there, not by a long shot.
I am now back into the care of the Head and Neck cancer team at Barts, and Tuesday just past (26th October 2021) David and I had a meeting with my new oncologist. I should add that I’ve been taking David to all these meetings, not only for support, but he is a brilliant note taker, which allows me to focus on listening and asking questions. Although for those of you who know David, he is not shy in coming up with his own questions too!!
The oncologist gave me more detail on the biopsy results. Through cell staining, the tissues have a high concentration of PD-L1 (over 20%), which means that the cancer is likely to be sensitive to immunotherapy treatment. So she is going to put me on a drug called
Pembrolizumab a monoclonal antibody, which binds to PD-1 receptors, allowing an immune response to the cancer cells.
It’s so weird, but the 2-weeks before this meeting (which was the first with a clinical consultant oncologist since this process began) were excruciating, with both David and I fearing the worst. But coming out of that meeting, our hopes were raised, to be able to make the best of a bad situation. The oncologist pointed that I have lots going in my favour:
tests show that I’m suitable for some pretty cutting-edge immunotherapy treatment;
even though metastasized, HPV cancers generally still respond better to treatment than non-HPV cancers;
I’m very healthy (hell, I’ve run 2 ultramarathons and a marathon in the past 6 weeks alone!), and I have no co-morbidities
my baseline bloods are all as good as they can be, so I’m starting from a great baseline for effective treatment.
I’m under no illusion as to the severity of my situation. The side-effects of immunotherapy and varied and unpredictable. And as far as I can make out, there is only one final outcome to Stage 4 cancer, and the mental and emotional effects are already taking their toll. Nevertheless, treatments are evolving fast in this field, and if I’ve learned anything from endurance running, positivity goes a long way to a better outcome.