Back in May my non verbal ten year old son went for a routine MRI scan because he has a genetic condition called Neurofibromatosis Type 1 (NF1). What happened next changed my entire family. A few weeks later I had a phone call from my son’s neurologist to say they had found a brain tumour and after discussions with a neurosurgeon and oncologist he had major brain surgery a few weeks later. My son was admitted to hospital and underwent a six hour craniotomy operation for a brain tumour biopsy. He had a long recovery.
Results came back that his tumour was ‘benign’ so I looked up the word and breathed a huge sigh of relief. According to the dictionary that meant his tumour was ‘harmless, innocent, superficial and innocuous’. Fantastic!
Except it wasn’t.
As his surgeon later explained it actually doesn’t matter wether a tumour is benign or cancerous as, especially in the brain, they are just as dangerous and cause major effects.
My son may need chemotherapy at some point. He may need further surgery. His tumour caused him to be epileptic, vomit, have visual difficulties, lose balance, be very lethargic, and be very unwell.
Benign isn’t fine and never will be.
We need to rethink urgently what benign means.
Having a benign tumour isn’t fine for Joe who has had two years of chemotherapy and is now almost blind.
Having a benign tumour isn’t fine for Tayen who is now on her fourth round of chemotherapy, epileptic, and is completely blind just to name a few of her very complex needs.
Having a benign tumour isn’t fine for Evia who is also blind and has had two years of chemotherapy.
Having a benign tumour isn’t fine for Logan whose tumours in his neck, throat, heat and arms are so aggressive surgery is no longer an option leaving him with lung disease, epilepsy, learning difficulties, scoliosis and hypotonia.
Having a benign tumour isn’t fine for Ella who has endured major surgery on her spine.
Having a benign tumour isn’t fine for Ronnie who has had chemotherapy and now has vision loss.
Having a benign tumour isn’t fine for Isobel who has a tumour in her head mouth and cheek and is blind in one eye and facially disfigured.
Having a benign tumour isn’t fine for Harley who has had two operations, 7 general anaesthetics, 5 MRI’s and chemotherapy.
Having a benign tumour isn’t fine for Jon-Paul who is in chronic pain daily with a tumour on his ankle.
Having a benign tumour isn’t fine for Heather who has had her leg amputated below the knee die to a tumour.
Having a benign tumour isn’t fine for Ruby who has endured surgery and 18 months of chemotherapy for a brain tumour.
Having a benign. Tumour isn’t fine for Dan who has had chemotherapy, sepsis and has vision and hearing loss.
Having a benign tumour isn’t fine for Harvey who needed brain surgery.
Having a benign tumour isn’t fine for Kiki who has had chemotherapy for a brain tumour.
Having a benign tumour isn’t fine for Kearyn who has vision loss.
Having a benign tumour isn’t fine for Teagan who also has had chemotherapy as vision loss.
Having a benign tumour isn’t fine for Elayna who is having brain surgery next month.
Having a benign tumour isn’t fine for Shay who has had two brain tumour surgeries so far.
And finally having a benign tumour isn’t fine for Evie who has operations to remove her tumours resulting in a facial nerve being severed and loss of hearing.
Are any of these cases ‘harmless, innocent, superficial and innocuous’? Is that how you would describe what my families and all these other families have been through and continue to go through?
Tumours related to NF1 May be benign but that doesn’t mean we can ignore them. Benign tumours cause pain, damage, deformities, disabilities and can kill.
For the sake of my son and all the thousands of other families living with benign tumours, wether NF1 related or not please can we redefine what benign means and stops giving the impression that benign tumours are ‘fine’.
They are absolutely NOT fine.
Please support the Childhood Tumour Trust campaign using the hastag #BenignIsNotFine
For more information please see http://www.childhoodtumourtrust.org.uk
Thank you.
faithmummy 
Thank you for this post, As heartbreaking as this was to read, it must have been more heartbreaking to write. Now you have two causes to advocate for. I will have to research to see if there is a similar organization in the U.S,.
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That’s a tough blog to look at Miriam, but thank you for writing it. It is so important that we all know about this. Praying for Isaac, and the other children/young people you mention. x
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You are such an awesome Mama Bear! Thank you for spreading the word about this campaign. Its heartbreaking to see children going through any kind of prolonged medical issue.
💌
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So difficult to read, but beautifully put.
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Benign is much, much better than malignant! NF is protective when it comes to brain tumors. Brain tumors that would be fatal in normal kids, are livable for kids with NF. It means slow glowing and that it might just spontaneously regress. Benign tumors are more likely to respond to more benign treatments like IV Vitamin C, diet, curcumin. Surgery is likely more dangerous than a benign tumor will ever be. Chemotherapy has a terrible record with benign tumors because they are too slow growing, so limiting growth body wide doesn’t work. It just harms the person receiving the treatment. I think it is vital to recognize that benign tumors shouldn’t be treated with toxic drugs and surgery.
Mek inhibitors may be an exception. It appears to be less harmful and more effective for benign NF tumors because it targets the overactivated pathway, not cell proliferation.
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I 100% agree. Benign tumors are not harmless even in people without Neurofibromatosis. Five or so years ago there was a show on TLC about a man from Portugal without a genetic disorder who had a huge Hemangioma a tumor of blood vessels. The hemangioma disfigured him and nearly kiled him. He sought treatment in the US and Brazil as “cosmopoltian, liberal” Portugal had second rate doctors appearently. Where did the hundreds of trillions of Escudos (Portugal’s old currency) plundered in wealth from Portugal’s colonization of the world for example Brazil, East Timor, Angola, Goa, ect. go to?! NOT funding oncology or plastic surgeon doctors it seems!
A “benign” tumor as a result of NF is disfugring my face and I lost a left eye to one as a child.\
Scishow, Healthcare Triage, ect. and all of those other science and health realetd YouTube channels do you care to talk about the dangers of “benign” tumors or are you half baking it in your discussions of cancer. They should know better most of them of are doctors and scientist. We should contact those YouTubers about NF and other cases of “benign” tumors injuring, sickening, deforming and killing people. Who knows, contacting them to have a Youtube episode may bring positive attention to our disease (NF) and similar conditions like Tuberous Sclerosis.
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That’s so heart breaking to read. Thank took for highlighting that benign is still serious x
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So many things I didn’t know about in this post – thanks for sharing and highlighting such an important issue.
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Completely heartbreaking. A very important message xx
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