31 January 2010 – Before Starting Treatment (Cancer and Me 8)
When you get diagnosed with cancer the doctors want to start treating you straight away, but there are various protocols to complete before that can happen.
In my case, first of all, they needed to complete the biopsy to confirm what type and stage of lymphoma I had.
Lymphoma has two main types – Hodgkin’s Disease and Non-Hodgkin’s Lymphoma. Non-Hodgkin’s is the most common, and there is a variety of different types of this too. It’s a type of blood cancer, similar to leukaemia. With lymphoma certain white blood cells turn bad and multiply. Normally, when white cells get to your glands, or lymph nodes, and reach the end of their useful life, they self-destruct. In lymphoma, the cancerous white cells don’t. So they accumulate in the lymph nodes, causing enlargement. Obviously if this is not stopped then eventually either the enlarged glands will stop something else functioning, or the lymph nodes will stop working effectively in their infection-killing role.
In my case, my problem was a big enlargement in the lymph nodes in my duodenum – which is between the stomach and the intestines. That had initially blocked the bile duct and caused pancreatitis (which can be deadly if left untreated) and jaundice. After the stent had been inserted the bile duct functioned properly, but the ‘tumour’ started to block the flow of food through my digestive system. That was why I couldn’t keep any food down. And by the time I was diagnosed I was not eating anything solid at all.
Anyway, the reason I say they had to complete the biopsy is that a biopsy is an examination of a tissue sample that is done in several stages. So if the results of one test show a particular result, then that determines what tests they do next. So they would first determine the presence of lymphoma, then work out after that step-by-step whether it’s Hodgkin’s and non-Hodgkin’s, then what type of non-Hodgkin’s it is and whether it is high or low grade (fast or slow growing). So they were able to tell me on 27th January that I had lymphoma, but had to await the full biopsy report a few days later to confirm the exact type and grade.
In reality, despite thinking that things were moving slowly, I was given the basic diagnosis as soon as they had it, and before they had even completed the full biopsy report. So really they were moving as fast as they could. They told me at the earliest possible time in order that they could start giving me information, and that I could start to get mentally prepared, while they were completing the necessary tests.
Then they hit the snag that in getting to the last test they needed to do, they ran out of tissue sample! So I had to go for another OGD endoscopy – and I’ve already indicated how I didn’t really relish these things!
So at that point they had established that I had non-Hodgkin’s lymphoma, of the B-cell variety, and that it was high grade. But since it was such a high grade they had to check whether it was the more common ‘Diffuse Large B-Cell’ type or ‘Burkitt’s Lymphoma’, which is a very high grade and very aggressive type of B-Cell disease. The other reason they wanted to check was because it is very rare for B-cell lymphoma to be present in the gut. If it’s there it is commonly found in African men, and linked to HIV, if I remember correctly, and is most often Burkitt’s.
In the end it came back as bog-standard Diffuse Large B-cell non-Hodgkin’s Lymphoma.
The other thing they have to work out is what stage the disease has reached. With lymphomas at least – I’m not sure about other cancers – they categorise into four stages depending where the disease has been found. And then further split each category depending on whether you have shown typical lymphoma symptoms – unexplained weight loss, drenching night sweats, etc. They had confirmed from the CT scan that I had enlarged nodes both above and below the diaphragm, so that made it at least Stage 3. To make it Stage 4 they had to find it in any other organ, and with lymphoma they classically test the bone marrow, since that is where all blood cells originate.
So they did a bone marrow biopsy. A bone marrow biopsy is treated almost as casually as a blood test in my estimation. It’s a straightforward procedure that a Registrar can do, or even a junior doctor under supervision from a Registrar, and can be done in your hospital bed or in a standard consultation room. But it isn’t a great experience for the patient! They do use local anaesthetic, and it is taken from the back of your pelvis, so you can’t see what is going on, and allegedly you can’t feel anything either.
For the procedure you have to curl up on your side on the bed with your back and pelvis showing. The doctor then numbs the area with anaesthetic, and proceeds to drill into your pelvic bone with a hand drill – yes, the ones that you hold with one hand and rotate the handle with the other. I remember my dad had one when I was a kid. My bones are so tough that my poor doctor was sweating when she’d finished. Oh, and it aches for a few days afterwards, but you just have to keep taking paracetamol. On this occasion it was not horribly painful, as they said. I was just aware of a lot of pushing and pulling and I heard the crack when she got through the bone. Two-and-a-half years later, when I had another bone marrow biopsy, it was definitely not pain free! The doctor stuck something into my back and I yelped with pain, and said, “I thought you used anaesthetic?!” To which the doctor replied, “That was the anaesthetic!” Embarrassingly I had to get through that one with a bit of gas and air!
And then the thing that held up the start of treatment was an echocardiogram. This is simply required to baseline your heart function before the start of chemo. But it took ages to organize. Part of the reason was that the department was really busy, but it was mainly to do with the fact that because of the norovirus outbreak they preferred to bring the testing equipment to my room rather than risking me taking the norovirus into another department. So they had to wait for someone to get enough time to make the trip over with the trolley of equipment.