Always request the Biopsy report before starting chemo!

I joined this forum to talk about a very important personal story.

Maybe others can benefit from reading about my personal experience as a cancer patient on the NHS. 

Last year I was told to visit my local hospital for further blood investigations. I had enlarged lymph nodes on my neck and armpits, I also had a incredibly fast heartbeat - it was 135 bpm when resting.
My GP had been unsure what this was. Strangely 6 weeks before entering hospital, my x-rays had been all clear and my bloods had improved. When rashes appeared on my lower legs (only below the knees) and my heart rate started increasing, I was really getting worried. I had visited a dermatologist who told me that the rashes were eczema. The rashes actually disappeared completely after I used steroid creams.

When I entered hospital I was asked to take an x-ray and a CT scan. The doctor asked me to visit his office and told me that "There had been some big changes over the past 6 weeks". 
Turned out there was fluid around my heart, lungs and large mass above the right lung. I also had a lymph node so large in my chest that it was pressing against an artery entering the heart. I was shocked about the picture, especially how things could become so bad in the space of 6 weeks.

The doctor said to me, with a chest consultant beside him that this was either lymphoma or TB. Further investigations would be needed and a biopsy was planned the next day. The doctors would also remove fluid around the heart. The biopsies would be sent to a specialist cancer hospital to check for lymphoma. The fluid around the heart would also be screened for TB. The rule at my hospital was that if they suspected TB, then TB treatment would be started even before receiving the results.

I was started on steroids and TB medication. I waited almost 2 weeks in hospital for the biopsy results to arrive. This is where the story takes a twist. One evening in hospital I was visited by a worried young registrar who told me that there had been a problem with the biopsies and that the doctors now could not tell if this was TB or lymphoma. She said she would complain and told me to sign some forms. A few days later doctors from the haematology department came to visit - they asked me to narrate my story and also said that the biopsy report had arrived and they needed more MDTs to decide on the diagnosis. 

I was diagnosed with stage 3 lymphoma a few days later and I asked the doctors if this was treatable. They simply said to me "We don't know we haven't read the biopsy report". I was worried but could not do anything. At the height of COVID my parents couldn't even visit.

Feeling incredibly worried I signed the consent forms and chemo started. Three days later a doctor visited me to ask me about my travel history. I asked him why - he simply said "TB hasn't been ruled out". 

At this point I was hoping to get discharged from hospital so that I could have a second opinion. After discharge I visited one of the best haematologists in the country, he agreed to chase the biopsy report (the biopsy analysis had been conducted at a world famous hospital where he worked).  He was reluctant to take me on as a patient and suggested that I continue treatment at my usual hospital - even though I was able to pay for this. He agreed to chase the biospy report - the reality was he never did. The second time I visited him he pretended to have read the notes and then shot up and said " Ok ,,, now its time to make some money" indicating that the consultation was over. £600 pounds down the drain and no second opinion. It left me incredibly disillusioned about the healthcare system in the UK.

7 days after the first cycle the lymph nodes on the neck and armpits had disappeared. On a meeting with my NHS consultant, he was surprised when he couldn't feel anything, He then strangely wrote a letter to the chest team to ask for antibiotics needed given my TB tests were indeterminate. My initial TB tests had all been indeterminate because the steroids had voided the tests. At this point I was getting incredibly worried about what I was being treated for. Surely the doctor writing a letter to the chest team after I had been diagnosed with lymphoma was unusual.

After the fourth cycle I was asked to change my chemo from R-CHOP to a slightly softer version. The chemo drugs had affected my heart so the doctor had decided to change the chemo drugs. Around that time I received a phone call from a haematology doctor on ward who told me I was TB positive and that he couldn't tell me anything further. I was confused but got no answers from my nurses or doctors. My doctor had a habit of shouting at the Macmillan nurse after she told me about a therapy option the doctor did not want to talk about. After my 4th cycle I was told to start taking co-trimoxazole for 6 months.

I was left in a position where one doctor would tell me something but another would deny it - making me look like a madman which I am not. This made me incredibly angry and wreaked havoc with my metal state. Putting me under tremendous worry and stress. As a 32 year old its just not fair that doctors can behave like this.

My consultant then disappeared from the hospital, his report was released after I had finished all 6 cycles. The report when it arrived stated that I was actually TB positive. I immediately contacted the hospital to release the biopsy report - which they did not. So I asked a friend to help who suggested I write to the hospital laboratory where the samples had been sent. I received the report. I was shocked to discover that the report stated that the samples had come a hospital I had never visited. The report also stated that chemo had been given a 11 days before the report was released by the lab. My consultant was also referring to a different sample ID.

I asked my nurse to book a face-to-face consultation with a consultant at the NHS hospital so I could ask them about this. At my consultation my doctor would neither confirm or deny a mix-up. My interim scans and final scans were all-clear. One doctor over the telephone even told me he has no clue why the samples ended up at the wrong hospital. I have felt sorry for my parents who have had to deal with more than just the diagnosis.

Make of this what you will but this post is not intended to put anyone in a bad light. Rather, I wanted to share how problems can happen with treatment/diagnosis for the benefit of any patients who find themselves in this position. 

Part of me is incredibly worried about whether my treatment has identified the cause and been treated accordingly. 

Surely this kind of service can't be right.