Skip to main content

Inconclusive Biopsy Results



Keep fighting and ask for another opinion.

The ENT consultant rang me at 6pm on Monday 25th July 2016 to say that the biopsy results were not yet back. So our appointment for Tuesday 26th did not happen as I had expected it wouldn't. He couldn't give me any indication of timing but said he will chase the lab each day for me and promised to call me as soon as the results were back so that we can then arrange an appointment to discuss them.

I will be surprised if a consultant really has the time to do this, so we shall see. I was quite impressed though that a consultant found the time to actually call me himself, although I did laugh at him when he said, "Try not to worry." The limbo I think is the hardest when waiting for results. 
I had asked the doctors three times when we were on the ward the previous week if they really thought the biopsy results would be back in a week. I fully expected them not to be, although I had hoped we might know. I said at the time that I didn't reckon they will be back before Friday at the earliest and wouldn't be surprised if it isn't until the Tuesday of the next week, as a two week turn around seems more likely.
I telephoned the ENT department at 10am on Friday 29 July 2016 as I had been requested to do. At 11:45am that day the secretary rang me back to say our consultant could see us at 3:30pm that afternoon with the results. We got to the hospital, waited almost an hour for the results and yes, you've guessed it. Inconclusive! Don't you just love that word? No, me neither! The cells are abnormal, but not obviously cancer (YAY)! However, the pathologist has absolutely no idea what the masses are (NOT YAY)!

Our ENT consultant (Dr Ed) said that my son's case had been discussed at a multidisciplinary meeting on the Thursday afternoon of the day before, but no one in attendance was able to commit to a diagnosis. My son is a medical mystery. (Still not yay)! Another pathologist has offered to take on the case but wants fresh biopsy samples to work with so Dr Ed has booked Ryan in for another general anaesthetic surgery (GA) on 9 August 2016. This is where I lost the plot. 
I was not prepared for him to go through another GA op. His stats were worrying low after the last one it it took hours for him to come round. I decided instead that I was going to explore the option of a private ENT consult with either Birmingham Children's hospital or GOSH. Is it not fair that our consultants (he has seen 4) do not have a clue. Do I have to accept there is nothing medically wrong and hope that one day he improves on his own as he gets older, we have managed for 2 years? 
The only thing Dr Ed could say for certain is that there is no way it is Lymphoma as ALL his lymph nodes were absolutely fine (YAY). So I had been worrying all this time for nothing after all. (Famous last words)!

All Guns Blazing

After speaking to Dr Ed, and believing I had been paranoid and neurotic all along, I tried for a few days accepting what we were first told, that Ryan's prolonged illness was a result of his poor diet and dental hygiene as we were told by the first Paediatric Consultant that saw Ryan. I was still wrestling with how I convince my autistic teen to change his eating habits while we were up against his severe sensory processing issues when things suddenly changed again for us. 
It was decided that a 2nd biopsy operation was not needed as the new Pathology Department (PD) had enough sample from the first op to work with. The new PD disagreed with the first Pathologist whose initial findings were dysplastic cells. 
The reason for the delay in reaching a diagnosis has been that the new  PD had sent samples to Germany and also to London because they believe Ryan has a rare form of Lymphoma. 
ENT have only seen 1 other case in 17 years and it was in a 22 year old male. Carmarthen and Swansea hospital had decided we needed to be referred to a Paediatric Haematologist in Cardiff so more waiting for that appointment.
Another week on and we went to University Hospital of Wales, Cardiff on Friday 26 August as a day patient to meet the team at the Teenage Cancer Trust unit that will be conducting his treatment. 
A full day of talking, tests and examining ensued with arrangements made for a bone marrow biopsy, PET-CT scan and to have his central line fitted ready for chemo to start on possibly Monday 5th September, so after months of waiting and uncertainty it is now all guns blazing. Ryan received a welcome gift of a confirmed diagnosis of T-cell Lymphoma but we will not know the subtype until after the scans and bone marrow biopsy. 
Dr C, our new paediatric haematologist said that Ryan has a rare form of lymphoma and never before found in a person so young, they have only ever seen it in older men generally of Asian descent and I do not know if that is good news or not. Can he fight it better being younger or if it will be harder to treat because they are not used to seeing it in youngsters so will not have a standard treatment plan?

Comments

  1. Anon31 October 2016 at 23:55

    And so it goes on....... If it wasn't so serious - it would be the joke of the century!

    ReplyDelete

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
11 comments
Read more

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
5 comments
Read more

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
Post a Comment
Read more

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
Post a Comment
Read more

NK/T-cell Lymphoma

Lymphoma Diagnosis August 2016 we received the gut-wrenching news that haematology consultants at Children's Hospital of Wales, Cardiff believed Ryan aged 14 had a rare form of Lymphoma, known only to Asian and Latin American populations of men over the age of 50. Up to this point Ryan had been ill for much of the preceding 2 years battling glandular fever that never improved and I battled with GPs to try and discover what was wrong.  Sometimes The Battle Chooses You There were still further tests that were needed, as the experts were baffled to see this cancer in a 14-year-old Western European Caucasian boy. We were given the confirmation diagnosis of EBV positive extra nodal NK/T-cell non-Hodgkin Lymphoma Stage 1, in September 2016. It is a bit of a mouthful literally as the lymphoma caused a soft tissue tumour to form in his throat. Steroid Chemotherapy commenced while planning began ready for 5 weeks of intense Radiotherapy before embarking on a six-month regime of SMI
6 comments
Read more