What is silent cancer follicular lymphoma, and how do you know if you have it?

Nicola Mendelsohn, vice president for the EMEA region at Facebook

The head of Facebook in Europe has revealed she was diagnosed with an incurable cancer more than a year ago, and has decided not to treat it.

Mother-of-four Nicola Mendelsohn, who is suffering from Follicular Lymphoma, decided to speak out about her illness, as so little is known about it.

A kind of Non-Hodgkins Lymphoma, it doesn’t always present obvious symptoms early on, and can often go undiagnosed until it is at a more advanced stage.

When she was diagnosed in November 2016 she was fit and had not been feeling tired or unwell, but had noticed a lump on her groin which she discussed with a GP who referred her to a gynaecologist, who in turn sent her for a scan.

It showed she had “tumours up and down” her body but, as it was a Friday afternoon, the tests she needed to tell her more could not be done until the Monday.

“I had a horrible two days trying to process it. It was worse that I didn’t find out all in one go. I couldn’t stop crying that weekend, grieving for the life I’d had before,” she wrote in the Sunday Times magazine.

Further scans and biopsies showed she had follicular lymphoma,  a cancer she had never even heard of.

Lady Mendelsohn told how like many sufferers she has decided to “watch and wait”, rather than treat the disease. She is managing her illness with regular scans and blood tests. If the tumours are growing she will begin chemotherapy and radiotherapy.

“My decision might well have been different if there were a cure for follicular lymphoma, but as it stands in 2018, there is none,” she said.

The prognosis with follicular lymphoma varies from person to person. Doctors look at everything from your test results, to your age, symptoms, and any other conditions you have to predict how likely you are to respond well to treatment.

It can usually be controlled for many years with several courses of treatment.

At a glance | Hodgkin lymphoma

Hodgkin lymphoma is a rare cancer that develops in the lymphatic system – a network of vessels in the body, which is part of the immune system.

It predominantly affects adults in their 20s or aged over 70. Just under 2,000 people are diagnosed with Hodgkin lymphoma in the UK each year.

It is a relatively aggressive cancer and can spread quickly through the body.

What is follicular lymphoma?

Follicular lymphoma is the most common type of the slow grown Non-Hodgkin lymphoma, usually found in men over 65. It is also sometimes described as indolent lymphoma, because it usually spreads very slowly. It is difficult to cure, but can often be kept under control for many years with treatment needed only from time to time.

Lymphomas are cancers of the lymphatic system, which is part of your immune system. Made up of organs including your bone marrow, spleen, tonsils, adenoids, and your lymph nodes (which can be found in your groin, neck and armpits), the lymphatic system is spread throughout your body. It defends your body against disease by removing germs and toxins, and any part of it can be affected by lymphoma.

What are the symptoms?

You may have very few symptoms or none at all. Most people find one or more painless lumps, often in the neck, armpit or groin (as was the case with Nicola Mendelsohn). These are caused by lymphoma cells building up in your lymph nodes, causing them to swell. They might stay swollen or they might shrink a little and then come back from time to time.

Some people also experience weight loss, fevers, night sweat, fatigue, itching, or being more prone to infection. These are known as “B symptoms” and are often experienced together. Doctors need to know about all of these symptoms so that they can assess how quickly you might need treatment.

But often sufferers will have no symptoms at all, and the lymphoma might be picked up by chance in the results of a test done for another reason.

Silent cancer | Symptoms you should listen to

Bile duct cancer

1,965 diagnoses in the UK in 2013.

Symptoms can include jaundice (yellowing of the skin/eyes), itching, pale stools, dark urine, unusual tiredness, pain under ribs, stomach pain, loss of appetite, fever or vomiting. For more details visit ammf.org.uk

Ovarian cancer

7,270 diagnoses in the UK in 2015.

Research by Ovarian Cancer Action found that 90 per cent of women don’t know the symptoms, which can include stomach pain, bloating, feeling unusually full after eating, urinary pain, increased urination and unusual bleeding. Find a symptom diary at ovarian.org.uk

Pancreatic cancer

9,921 diagnoses in the UK in 2015.

Pain in the back or stomach that may come and go and is worse when you lie down, unexplained weight loss, jaundice, dark urine, pale stools, nausea, bowel changes and fever are possible symptoms. For more information visit pancreaticcancer.org.uk

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