Skip to main content

Ryan’s Relapse - Biopsy #2

Oral Mass, Lymphoma relapse and biposy #2, bellybuttonpanda.co.uk

Oral Mass

Ryan woke up on Monday 11 September 2017 and told me he had a mouth ulcer. As soon as he showed me I knew it was not an ulcer, I knew his lymphoma is back. We had an appointment with his oncologist at the clinic the following day. The consultant, Dr A, agreed it needed a biopsy. He photographed the mass and emailed our oncology team in Cardiff from the treatment room at Carmarthen hospital. Dr A also advised me that my dentist see the oral mass as it was my dentist that first noticed the original changes the previous year.

My dentist was thankful we had been to see him and to keep him in the loop of developments. He agreed the new mass was looking pretty awful. We were admitted to Cardiff hospital the following day for another biopsy.

Our oncology team were open and honest that it was their belief Ryan had relapsed but obviously we had to wait for the biopsy results to confirm the diagnosis. We were initially advised that we would be discharged on watch and wait and that it would be 7 to 10 days to get results. I knew it was a relapse, the doctors knew too. Even though I knew deep down, the juggling of emotions when Ryan had only been in remission for three and a half months took its toll.

Biopsy #2

Ryan’s biopsy was to be done at the Dental Hospital by the maxillofacial surgeons due to the mass being on his lip and inner cheek. When we arrived at the ward the nurse informed us the doctor had been called away to an emergency, she was very sorry but would we mind waiting.

Ryan being his usual dark-humoured self replied: “Not at all, if we wait long enough I'll be dead and you don't need to bother with a biopsy.” Bless the nurse, she had never met Ryan and didn't know what to do with herself, but we all had a giggle once I had explained.

The biopsy was straightforward enough. Ryan was in an ordinary dentist’s chair, had a local anaesthetic to the area just as you would for a dental appointment. They took a small section of the mass for biopsy. When we got back to the Teenage Cancer Trust (TCT) ward the doctor was already calling pathology to ensure the sample had been delivered but it had not.

The doctor was a little panicked and stressed; how could the sample get lost between the dental hospital and the pathology lab. Ryan again quick off the mark pipes up “Don't worry if the sample has been lost, leave it a couple of days and I'll grow you another one.”

Of course, the sample was received at pathology and it was now a waiting game for the results. Another long arduous road ahead.

Agonising Wait

It was a stressful weekend waiting for the results and on the following Monday afternoon, a week after Ryan had originally noticed the oral mass, the haematology team from Cardiff Hospital rang us with the confirmation of relapse.

We were admitted that day to the TCT ward to begin the process of PET scans and treatment protocols. The PET scan had to be delayed a day as Ryan's blood levels were not satisfactory for him to safely go through the PET scan. He had instead, an IV drip for 24 hours to balance the high urate in his blood.

The following day he was well enough to be scanned and unfortunately the results showed the Ryan has several new lymphoma tumour pockets throughout his body. This came as quite a shock as you can imagine.

We thought we had caught it early and in fact, he was in a worse state than the original diagnosis a year ago. He was now stage 3. The medical team then gave us the gut-wrenching news that Ryan could not go through SMILE chemotherapy again and there was little more they could do. They said Ryan had maybe three months at best.

However, they then came back to us and offered the possibility of another type of treatment but there were no guarantees that we would be approved or if it would work for Ryan's NK/T-cell Lymphoma. There was then a further agonising 24-hour wait to achieve confirmation of funding approval for a new revolutionary immunotherapy treatment called Pembrolizumab.

Our haematology consultant Dr C who is always open and honest with us in front of Ryan confirmed that if we did not receive funding he was talking weeks, not months, which as you can imagine broke me that day. Funding was approved and treatment began Friday 22 September 2017 which will consist of a 30-minute IV drip given as a day patient every 3 weeks in Cardiff hospital over the next two years with weekly monitoring in between at Carmarthen Hospital.

Pembrolizumab

Is an artificially made antibody which attaches itself to the cancer cells and stops them from growing. It is not the same as chemotherapy. Side effects are different, but not as toxic as chemo. Ryan will be monitored closely with regular liver, kidney and thyroid tests to ensure no damage from the treatment.

School

Fortunately, day-patient treatment only and less risk of neutropenia means that Ryan is still able (much to his annoyance) to attend school part-time for English and Maths lessons only. Ryan has been entered for his Maths GCSE exam in November 2017 as we feel he is capable of achieving a C grade if he is well enough on the day.

A four-month grace period of being in remission was lovely, but none of us is rested or recovered enough to be prepared for Lymphoma battle round 2. Yet here we are and fight on we will.

Pembrolizumab, Immunotherapy Alert Card. bellybuttonpanda.co.uk


Comments

  1. How do you remember all these medical/chemical terms? Do you carry a notebook? As ever, your writing style is lucid and interesting but the content gives me a cold feeling in my stomach. You write it dispassionately but its your son! My heart goes out to you.
    " talking weeks not months, which as you can imagine broke me ". I'm with you, it broke me - just reading it made me gasp - you lived it! You are made of granite, you are fantastic.

    ReplyDelete
    Replies
    1. I do make some notes, but as a mum want and need to know what is happening and why, so I learn all I need to know on his treatment. If I am too medical please do ask me to explain. I don't know about granite. My counselor is holding me together, just. Writing is part of the therapy so I am not holding it all in. x

      Delete

Post a Comment

Thanks for your comment. We appreciate having you along for the ride.

Popular Posts

Missing Education due to Illness

The Importance of Attendance If you read any news articles on education, correspondence from your child’s school, or are simply clued up on parenting then you will know the importance of school attendance. Schools place a great deal of focus on targets and will often offer incentives and competitions to encourage and increase attendance figures, but what if your child has a serious illness. What happens if they really are not well enough to attend school. What happens then? Attendance targets at Ryan's school are currently set at 95% attendance for the school year. Therefore realistically your child can only miss 10 school days due to illness. Medical appointments such as GP or Dentist do not count, but you are encouraged to make these appointments outside of the school day where feasibly possible. If your child consistently misses school, even if it is only one day a week, that equates to 39 days over the school year. Even missing one day in a week results in pressure on the

Questions to ask after Cancer diagnosis

Cancer Sucks I have shared with you Ryan's lymphoma journey where we have talked about the ups, the downs, the protocols for drugs, the side effects, but I realised recently I have never shared the questions. This post is all about what to ask when you receive a diagnosis of cancer. Receiving a cancer diagnosis is never ever going to be seen as good news. It can never be dressed up or made pretty. It is devastating, it is gut-wrenching, it is life-changing. There is so much information to process you will not think of the questions you need to ask or you will have hundreds of questions you want to ask all at once. These are just some of the questions you can ask once you have processed the news, in order to gain a better understanding of your fight ahead. General Information What type of cancer do I have? Where is it located? What are the risk factors for this disease? Is this type of cancer caused by genetic factors? Are other members of my family at risk? What lifestyle c

3 Years in Remission

  3 Years in Remission In May 2017 Ryan finished his 6 gruelling cycles of Chemotherapy and was in remission for 3 months before his cancer returned in September 2017. I wrote about our first 3 month cancer free milestone in our blog post here . In August 2020 Ryan once again finished treatment. This time he completed 3 years of Immunotherapy treatment and in November 2020 Ryan had tests done to confirm he is once again in remission. This is, of course, outstanding news but we were muted in any celebrations as it was such early days and we had been here once before. Ryan has been having regular check-ups every 3 months and in May 2021 we were able to confirm he has reached the 9-month milestone which was phenomenal news. Massive Scare - Relapse #3, ALMOST. Tuesday 4 October 2022. Ryan mentioned to me about an Ulcer on the roof of his mouth. I took photos and monitored for a couple of weeks before we start to panic too much.😳 Thursday 27 October 2022. Sadly Ryan has had to have yet a

Swansea Community Farm

Swansea Community Farm In April 2021 Ryan began volunteering at Swansea Community Farm (Welsh - Fferm Gymunedol Abertawe). For now, he attends one day a week on a Tuesday from 10 am to 4 pm but there is a possibility that he could also volunteer on Thursdays as well also 10 am to 4 pm. About the Farm Swansea Community Farm is the only city farm in Wales set in 3.5 acres of land with a variety of animals, an allotment, wildlife habitats, beehives and a café. The animals include donkeys, goats, sheep, ducks, geese and chickens. The farm aims to improve wellbeing, build skills and create a sense of community engagement by caring for the animals, producing local food and caring for the local environment. Duties Ryan has enjoyed a variety of different duties so far. He has walked the Donkeys, Sheep and Geese from their barns out to their fields and pond. Collected eggs from the Chickens, and has mucked out the donkey sheds. He has also cleaned out the chicken coops, cleaned and refilled all

Photograblog

By Ryan I like photos. Well the detail and how realistic you can get them. Instead of going out and looking at them yourself you can easily just find them, but doing photography you do that yourself. In a good picture I look for detail and how good it looks, which comes under detail actually, lighting, depth, what’s in the background, what’s the main focus of the picture that type of stuff. Possibly my autism has helped me to see the detail in making a good photograph. I looked at it a bit more. I can see deeper into the picture. I get the meaning of it. I can see why somebody took it either for the beauty of it or just for fun maybe. With my photography I am not having to interact with people or do the social thing that I find difficult. It’s a project I can do by myself in my own time.  My photos don’t involve people. I prefer wildlife and landscape photography instead. I don’t take photos of animals even though I like them because well fi