The story of Barbara
My story is not about a disease with suffering and pain like so many I found on this site. My story is about living with an extremely rare kind of tumour in the spleen: Littoral Cell Angioma .
At the time it looked like I was going to lose my spleen and everybody told me: “Oh, you can live without a spleen”. Well, you can also live with half a stomach or one lung etc., but every organ has a purpose and therefore should not be removed without a very good reason.
Let’s get to the story. In September 2007 I had a CT scan done because of some lung issues. When I saw the lung specialist afterwards she told me:” We didn’t find what we thought we would, but we found some tumours in your spleen. It is either lymphoma or leukemia.”
I took a (very!) deep breath and said: ”Can’t it be anything else? Surely there can be other problems with the spleen.” “No,” was the answer.
So I was sent to a haematologist, who wanted to send me to a surgeon for a splenectomy. In the meantime though I had done some research and had found out about Fine Needle Aspiration (or FNA), which is the procedure of taking a very fine sample of a tumour. So I told the haematologist, that I wanted such a biopsy done. His answer was: “We don’t do spleen biopsies in Australia”.
I wasn’t going to give in so easily and went back to my GP to ask him for a referral to another haematologist for a second opinion.
But before I went to see this second haematologist, my husband had spoken to a radiographer about my problems, whom he had met at the gym. She told him that she had assisted several biopsies of the spleen and gave him the name of the radiologist performing it.
Armed with this knowledge I went to my appointment with the second doctor. He looked at the scans and very frankly said: “I have never seen anything like it.” I then asked about a biopsy and he replied, that due to the position of the main tumour he thinks, that it might be possible and he would speak to a radiologist.
To cut a long story short, I had a Core Needle Biopsy done (not much fun!) and was diagnosed with Littoral Cell Angioma (or for short LCA). About 40 cases had been reported in medical journals at this stage world wide. I got full access to these reports for free for three months through I password I was given by the American Rare Deseases Organisation, which I had contacted by email. I printed everything out and took it to my haematologist, since he didn’t know anything about LCA. The radiologist doing the biopsy had come across it in his studies, but never had had a case himself.
In all the case descriptions that I had read in the medical journals, either the patient had their spleen removed and then been diagnosed, or a Fine Needle Aspiration was performed to diagnose the tumours and a spleenectomy was consequently considered to be the cure.
But as they are supposed to be benign tumours (although nobody knows why they develop in the first place or whether they might change further down the track) I decided to keep my spleen and just monitor the tumours via CT scans.
My reasoning was that If they were going to multiply or increase in size, it was still time to have my spleen removed.
Seven years later I still have my spleen and the tumours have not increased in size; if anything, they have shrunken a wee bit.
What I have learned through all this is that doctors cannot possibly know everything. A doctor’s knowledge is not only defined by his studies, but also by experience through the kind of cases he has come across during his working life.
There are two reasons why I felt that I should write about my case. Firstly, I would like people to know that not all cases of Littoral Cell Angioma necessitate a spleenectomy.
Secondly, from the experiences that I had, I would like to encourage people to do their own research and to always ask for at least a second opinion before major treatments or operations. Doctors can give you all the information they have and make recommendations, but ultimately you are the one has to make the final decision and who has to sign the form to OK the operation or treatment.
Should you like to have any more detailed information, please feel free to email me on [email protected]. I am more than happy to answer all questions.