I think it’s fair to say that I’ve lived my life these past 18 months on the basis that however bad my cancer and treatment had been, cancers caused by HPV16 have a high survival rate after 2 years (94%). I’ve had several nasoendoscopies over the past year, and these have all found no recurrence of any tissue change that might suggest a return of my tonsil cancer. But as mentioned in my previous post, I had been experiencing increasing fibrosis and also a bit of ‘ asthmatic hay fever’, where I find it a wee bit more difficult to breathe at times than others that I usually put down to pollen. A routine check-in call with my oncologist on 7th July (due to Covid, all oncology check-ups are via the telephone) convinced her that I should have an MRI just to make sure everything was still OK.
So I had an MRI back at Barts on 7th August, and then on Friday 13th (you couldn't really get better timing) I received a voicemail and email telling me that there was a recommendation from the MRI report to have a CT scan of my chest. As this occurred on Friday afternoon, and no-one was picking up their phone, this left me really unsettled as to what the implications of this might be. On the one hand it sounded completely routine, but on the other it laid the door open for tests needed to be done on another part of my body.
On the 18th August I finally managed to speak to my oncologist who told me that the MRI scan of my head and neck continues to show the ‘all-clear’ from any cancer returning. Yay. But close to the edge of the MRI, the part which scanned the top of my chest detected a possible mass in the mediastinum (the central part of the chest or thorax that separates the lungs) and, although the oncologist had no more information, she thought it best to order an urgent CT scan. As you might imagine, this left both myself and David feeling very discombobulated. I was thrown right back to when the ENT first thought that I might have cancer and told me; the waiting is almost the worst part.
I had my CT scan quickly, on the 25th August, which was followed up by a phone call from Barts that told me that I was booked in for a PET scan on Wednesday 15th September. I was a bit confused at first, and asked why I needed a PET scan but the person couldn’t tell me. I think is where communication started to get a bit bad, or at least out of synch, as my oncologist had gone on maternity leave, and it wasn’t clear why the PET scan had been booked in without my CT scan first being discussed at a weekly Head and Neck MDT (multidisciplinary team) meeting. This was on the 31st August and again there was a period of silence. But after another email from me, I got a phone call on 7th September from Barts, this time from a Registrar.
He assured me that despite the radio-silence, activity regarding my case was going on in the background. My case was discussed at their Head and Neck MDT meeting. The specialists at that meeting confirmed that the CT scan showed irregularities; there was a swelling/lump in the middle of my chest pressing against my right lung. There was also evidence of a couple of other spots which the CT scan showed up, and so my case would now go to a Chest MDT meeting as well. In the meantime, there was the recommendation that I also needed to get my abdomen and pelvic regions scanned (PET) to make sure that other irregularities were not present, and that I might also need to get a bronchoscopy, a biopsy and possible camera tests done too.
So this was where we were before the PET scan. While no traces of primary cancer remain in my tonsil or lymph nodes, it looks like there is the possibility that (i) secondary cancer has developed due to the primary tonsil cancer having metastasized, or (ii) I have developed a new primary cancer in my chest, or, fingers crossed, (iii) the lump detected is a benign cyst. While mediastinal tumours are rare, almost 40% of people who develop these experience no symptoms.
Update 15/9/21
I had a meeting at Barts with the Registrar who I spoke with over the phone, just before my PET scan on 15th September 2021. David came along, and I guess the upshot is that the news was not good. There’s still a lot of uncertainty, but possibility (ii) above looks to be correct – he thinks I’ve developed a new primary cancer in my chest.
He showed me the CT scan, and it showed indeed a large mass has developed in the hilar region of my right lung. But worse still, it looks like this mass has already metastasised to the other lung; two other small areas showed up – one elsewhere on the right lung, but the other on the left. We then looked at the CT scan from last March 2020, and there is no trace of cancer there at all. So what he thinks now is that this is a new cancer. It has grown and spread quickly, likely within the last 6 months. And this is why he thinks it is a new primary cancer, not secondary derived from my tonsils. It’s likely to be a form of non-small cell lung cancer. There are many unknowns yet and we need to vital bits of information:
The PET scan of my whole body will tell me if the cancer has spread any further. The call I got from the Registrar today told me that cancer has not spread to either my abdominal or pelvic regions, so that is good. But it does show another new nodule on my lungs not picked up by the CT scan. Although the lung MDT meet every Friday, my scans are still to be discussed in detail, and waiting for these results is a bit excruciating to be honest.
Chest / Lung cancers are numerous and complex and treatment is based on results from respiratory tests and a biopsy, which will be taken via bronchoscopy. I don’t have a date for this yet, but it should happen sometime in the coming weeks. Biopsy results can take several weeks as tests are done looking for genetic markers to try and hone down what type of cancer I have, and these are crucial for treatment. This really intrigues me, and I’ll try and blog about these later.
Assuming the cancer is really restricted to my chest region, then this will be a low impact metastatic cancer. I can rule out surgery however as, and I paraphrase here, ‘it would take a brave surgeon to go in and remove cancer from many places’. So we are looking really just to reduce the cancer that is there by conventional methods of chemo, radio and immunotherapy. And I guess I’ll be living with cancer rather than getting rid of it, so it's all about management rather than cure.
There are a few positives. It looks like cancer has not spread beyond my chest. Treatments are advancing all the time. And the lung team are world experts, who I hope will throw everything they have at keeping me well. I accept now that I am also very fit which is a big plus for coping with future treatments; if I’ve managed to race several ultra-marathons with this new cancer growing inside me, I can race several more while I fight it.
But I can’t deny that David and I are stunned and in disbelief. For me, my initial reaction was one of guilt. How could I put David and my family into this position. And when I think of the future, or no future, all I can do is think of David and Anson, or Anson and David; we’re both so intertwined I don’t know where one of us ends and the other begins. I feel like I’m destroying something that is good and unique, and that is hard to shake.
I know that we will make this work once we have all the information that is possible. But fuck this has been a stressful month, and looks like continuing to be so in terms of uncertainty for another month at least.