Worried that my 17 year old daughter has colon cancer

[Rhona78]

I sadly lost my brother to bowl cancer in 2012. After months of being told that he had gastroenteritis or tummy bug. He was then made to feel that he was being a pest, so stopped speaking help. My brother was 40 when he died and only lived for 6 months after they found the stage 4 tumour. They never checked for colon cancer because of his age.

My 17 year old daughter went into hospital in November 2023 with suspected appendicitis. Since then we have been back and forwards and been made to feel that she is making up the pains as nothing is showing in her bloods or Urine tests. She has now been passing blood for three weeks. This started with when she wiped, bright red blood then in her stools. Doctors have checked for hemeroids and her stools have been tested for inflammation to rule out IBD, Colitis and IBS. Her blood sugar levels drop to as low as 1.3 even though she is not diabetic. She still complains of pains and lives on oramorph, codeine, paracetamol, buscopan and 2 different types of anti sickness. The hospital still send us away because she is now with a gastro Dr.

The gastro Dr. Still wants her to have an MRI before a colonoscopy as he feels that a colonoscopy is to invasive for a 17 year old.

Me and my daughter just want the colonoscopy ASAP due to the family history and how quick this had spread with my brother.

My question here is, does anyone know how we can get this moved quicker? As she is 17 I can't even pay for private colonoscopy. All of our hospitals up here won't touch under 18 years and she is too old for paediatric. Thanks in advance

[GCCA-Survivor Administrator]

Hi Rhona78,

Thank you for posting on Colon Cancer Connected. I'm so sorry to hear what's going on with your family. It's an absolute shame that they did not do more tests on your brother. Even in 2012 there were indicators like CEA that could have given an indication to his cancer. And the fact that his symptoms never went away, he definitely should have had a colonoscopy performed. Your brother’s tumor that was discovered in 2012 would have been a detectable polyp in 2006.

I personally have a similar story like your brothers. I was diagnosed in 2012 because of some abdominal pain. My doctor said let's get a CT scan and two days after that I was standing in front of a surgeon. Your brother's story absolutely makes me cringe. We were both discovered in a late stage of cancer. I am sorry that he passed away from that. I had two cousins passed away in the 90s at the ages of 35 and 41. They passed away from the same cancer that I ended up surviving. We are getting better at this, but there's still a long way to go.

You know you have cancer in your family. Has anyone in your family gotten genetic testing? One thing you need to know is if you're dealing with a hereditary situation. I got genetic testing even before my first chemo treatment and we found out that I had lynch syndrome. That makes me more susceptible to getting cancer. With this information, every one on my father's side of the family had to get tested for a certain biomarker that I had. We knew my father and one of his sisters tested positive. And because it's a hereditary cancer, I have to have an annual surveillance to make sure that if the cancer does return that we catch it early. I currently get an annual colonoscopy and an annual CT scan as well as blood work.

You know your brother had cancer. So there needs to be some genetic testing going on to determine if anybody else in your family it's susceptible to cancer. If your brother's tumor can't be ginetic tested, then you should get genetic testing so you can know if you have any biomarkers that may be susceptible to hereditary cancers. If your genetic testing does show that you have these genetic mutations, then your daughter should get tested as well to see if she has them.

Your daughter is 17. Yes, that is young. That is a definite advantage for her. But it does not mean that symptoms should be diagnosed because of her age. You are never too young to get a colonoscopy. Don't accept anyone telling you that you could be too young to get a colonoscopy. It is a very low percentage of young people that get colon cancer, but it can happen. You need to make sure you get good information moving forward.

It is good news that your daughter's blood work is clear. You mentioned that your daughter is passing blood for three weeks. This is definitely a symptom that needs to be checked out and you need to know the answer. Another symptom is that she's experiencing pain. Is it an abdominal pain?

It is good that she has a gastro Dr. Ask the gastro doctor if your daughter is going to have a virtual colonoscopy. This is a type of non-invasive colonoscopy that uses a CT scanner and an detect tumors, polyps, and possible reasons for other things like bleeding. If something is found with those tests, then a regular colonoscopy would need to be performed.

If it is a regular MRI, that can have its benefits to the doctor and perhaps lead to further screening of your daughter. If you already have the approval to get the MRI for your daughter, go ahead and get that done. That may very well lead to you getting a colonoscopy. It will definitely give you more information than you have now.

In summary, please do look into getting genetic testing either on your brother's tumor or you yourself. This can be done with a blood sample. I would also go ahead and get the MRI since that is what is approved for now and this may very well lead to other tests including a colonoscopy. I know it is very difficult to deal with a national healthcare system. Never accepted diagnosis because your daughter is young. That is not acceptable, and I think you know that as well👍👏❤️. I wish I knew how to navigate the NHS better. I know what you need to be on is called an "urgent path", but they obviously have some protocol that says something about being too young. I really hate to hear that.

I hope there are others on this site that will give some advice about navigating the healthcare system. Perhaps some information on how to be taken seriously and get what you want. We do wish you the very best and getting the procedure done for your daughter. We hope you get answers and she gets put on a path to be well very soon. She's never too young to get the procedure she needs to get answers about her health.

Please let us know what happens from here. The decisions you make and the procedures you're going to have done are often good information for others on this site as well. I do hope others on this site can help you better navigate the NHS and expedite what you want done❤️.

Thank you,

~Tom, GCCA Survivor - Colon Cancer Connected Site Administrator.

Just a reminder - this group is here to offer support, share experiences, and offer our thoughts - but this is not medical advice, and you should always consult your medical professional(s). Additionally, for all emergencies, seek urgent medical care, never delay.

[tony11173]

Sorry to hear. Drs know age is not a barrier to cancer. We lost 3 young people under 25 to bowel cancer in my local area alone. One young man of 21 had symptoms for Years only to be told he was to young. Though im older, i had and still do have bc symptoms inluding iron anaemia. Dr referred me but hospital rejected colonoscopy. I had ct instead. I therefore found the money for a private colonoscopy and gastro camera. It was done within 2 Weeks. Fortunately, no cancer detected yet, but i cannot regret not doing this privately. NHS clearly in a mess but then its your daughter who's symptoms need explaining.