Piia Pauliina
  • scissors
    October 19th, 2010

    I had my usual clinic appointment yesterday. I could not stop feeling anxious and nervous all morning. I had been putting off thinking about the biopsy results and somehow had been convincing myself that it did not matter what the result was as I would be getting radiotherapy regardless. But now that I was about to find out the result, I was worried.

    It was Dr Matutes’ registrar and my nurse Lucy who greeted me in the consultation room. I could see that the biopsy report was on the table, and could not focus on what the registrar was asking. I was thinking, is he mad, why does he want to chitchat when the result of the biopsy was right in front of him! Finally he told me. It was bad news. There it was, written in black and white on the report: ‘diffuse large B-cell lymphoma, consistent with mediastinal large B-cell lymphoma’.

    Honestly, what an unrelenting little bugger this cancer of mine is! Three lots of chemo, stem cell transplant with high dose chemo, and it still likes to grow! OK, it is not big, and it is only in one area, which are all positive things, but still!

    Like I already knew, the plan is not to give chemo at this stage, but to give me a course of radiotherapy instead. And, I would like to point out, mostly to remind my little old self that the aim of the radiation treatment is to fully get rid of this lymphoma. If this treatment cures those ‘faulty’ cells, then I will not need further treatment. Fingers and toes crossed, and positive thoughts to the universe, please.

    My team had organised my consultation with the radiotherapy team at Royal Marsden that same afternoon. I had printed out some questions I wanted to ask them. These are some questions recommended by someone at the Lymphoma Association that one should consider asking when faced with radiation treatment:

    “1) I would make sure that they were giving me a modern, more focused and targeted form such as involved field radiation (IFRT), not mantle radiation. That reduces risk of secondary cancers that can be caused by radiation.

    2) I would show my oncologist the recent German Hodgkin’s Group study that demonstrates that a lower, less harmful radiation dose of 30 Gy, not higher, has just as beneficial results with far less risk. The study results showed that ABVD + 30 Gy of rads is as effective as BEACOPP + 20 Gy for achieving a 94% survival rate.

    3) I would also discuss the recent BBC News article about the type of radiation begin given to most Britons (only 7% get the new type!), express concern and insist on the more modern form even if it meant your oncologist had to lobby to get approval for you to travel to another hospital to be treated.”

    Apparently, the radiation I will receive has a tiny risk of secondary cancer, and the dose is about 30 Gy, although sometimes they use higher if they think it is more appropriate. I will be screened for breast cancer regularly for years post this treatment. The Royal Marsden is the best cancer hospital in the UK, maybe in the whole Europe, I am sure they know what they are doing.

    After my consultation, I was sent to be ‘mapped’ for the radiotherapy. It meant, I had to lie down on a CT-machine, very still, my arms above my head whilst they marked three areas of my chest, right in the middle and just under my arm bits, both sides. After I had been through the machine (donut) a few times, the mapping was over, and the final step was to give me my ‘tattoos’. I had heard and read about this, but did not think I was going to get mine so soon! In reality, it was unexciting. The three dots that I have are so tiny you would not notice them unless I pointed them out to you. The tattoos are there to help to pinpoint where exactly the radiation should be directed. And the whole idea of this mapping is to give the team all the info they need in order to plan the treatment as accurately as possible. This can take some time, so my first actual radiotherapy session is next week Wednesday.

    I was booked for all the sessions in one go. I will go every weekday, Monday to Friday at about the same time for 3-4 weeks. They also give you your own treatment machine, and a number for the team looking after that machine. My machine is called Carlyle. I like that name.

    I went to see my GP to kindly ask him to refer me to the Royal London Hospital for Integrated Medicine (formally known as the Royal London Homeopathic Hospital) last week. This is what they say in their website: “The hospital offers an innovative, patient-cantered service integrating the best of conventional and complementary treatments for a wide range of conditions. All clinics are led by consultants, doctors and other registered healthcare professionals who have received additional training in complementary medicine.” Their clinical services include cancer care, so I am hoping I will be accepted as a patient there and will receive complimentary care to support my current treatment at the Royal Marsden. I will keep you posted. My GP said that they are quite reluctant to refer just anybody there, but he had no problem sending my referral.

    As my blood counts were good yesterday, I do not need to see my haematology team for 4 weeks!