Hi Singer,

Hodgkins tends to be divided into classical Hodgkins, and Lymphocyte Predominant, which only accounts for about 5% of cases. The latter is now considered not to be a true form of Hodgkins at all, because it does not have the characteristic Reed-Sternberg giant cells, which are diagnostic of Hodgkins. It does have large cells, called popcorn cells, which can look similar to Reed-Sternberg cells, probably explaining why it was originally classified as a form of HD. The progression of the disease tends to be very indolent (slow), whereas classical HD tends to be quite aggressive, so many people believe it should be reclassified as a form of low grade non-hodgkins lymphoma. However, like classical HD, the age of onset of lymphocyte predominant tends to be in the twenties and thirties, it often presents with an enlarged lymph node in the neck, and it responds to the same types of chemotherapy as forms of classical HD. Usually, if caught early, the prognosis is similar to classical HD. However, if you are unfortunate enough to relapse, it acts more like a low-grade non-hodgkins, i.e. it responds to treatment again, but tends to come back and keep coming back. If you read some of the older literature, it will tell you that lymphocyte predominant had the best prognosis. This is because, unlike classical HD, where relapses are most common in the first two years, and increasingly unlikely as time goes by, the indolent nature of lymphocyte predominant HD means it is unlikely to return in the first two years, but more likely to return thereafter. This was not known initially because studies did not follow up patients for a sufficiently long period. There are a number of cancers like this, which has led to the abandonment of the belief that a period of 5 years without relapse constitutes cure.

I am unfortunate enough to be in the minority of lymphocyte predominant patients to experience a relapse, and have now relapsed twice. Although not every consultant I have seen is in agreement about this, most consider that a cure is not possible, and the disease will inevitably come back.

Classical HD is generally divided into 4 subtypes: lymphocyte rich, nodular sclerosing, lyphocyte depleted and mixed cellularity. Unlike the case with lymphocyte predominant, these are all considered to be different forms of the same disease. My understanding, although I may be wrong about this, is that the different subtypes represent different stages of the disease, with lymphocyte rich being a rarely-seen early stage, and mixed cellularity occurring in more advanced disease. Most cases (70%) are diagnosed with nodular sclerosing. Bizarrely enough, a work colleague has recently been diagnosed with nodular sclerosing, and began treatment with ABVD just as I was completing mine: how rare an occurence is that?

I have tended to read a lot about the illness, and other forms of lymphoma. You are right that it can be really scary stuff, and often counter-productive in terms of anxiety. My problem is that, like Amanda, I have a lot of trust issues when it comes to the medical profession. The current problem I have with my lungs has come about because the doctors I saw during my treatment did not respond to my telling them that I was experiencing problems breathing, so they continued to give me bleomycin. I have therefore found that I need to be informed, in order to get the doctors to do their jobs properly. Unfortunately, in this case, the knowledge did not help me because I was not sufficiently assertive, for which I am now paying the price. Not only am I angry with them, one doctor in particular, but I am really angry with myself for letting this happen.

Anyway, I do not want to end on a sour note. Even though this recovery process is not happening very rapidly, my partner says she can notice a difference in me over the last few weeks. As long as I can take things at a sensible pace, I think returning to work will help me to feel a bit more normal again.

Best wishes
Simon