Recurrence Osteoma and FAP

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Hia

Ok feeling a bit of a fraud but I need to reach out to someone ....

I'm a 54 female (who has worked in Oncology most of her life).  I had a large Osteoma removed (with clear margins) from my mandible angle in 2018 (benign).  A CT Scan in August confirmed that it has recurred (I had to push for this CT scan as they said they couldn't feel it BUT I could and after speaking to her consultant he said that they need to do one), but as it is slow growing the Maxillo facial registrar said that she doesn't want to see me for 12 months.  I did ask, that as it has recurred will she refer me for a FAP (or attenuated FAP) test - which involves a colonoscopy OR genetic test - she refused and said that they didn't do that and I would have to ask my GP.

I had already been to see my GP, a few months previous to this, over bowel changes, bleeding (although I think this is from hemorrhoids) and tired all the time (I literally fall asleep anywhere, anytime). She ran a lot of blood tests, FIT was neg, low folate was shown, everything else seemed ok.  So I was prescribed folic acid for 4 months and then the blood test has to be repeated. This will be next month.  I am still tired all the time and I have been folic acid for nearly 3 months.

So I arranged another appointment with my GP and she agrees that I need to have a colonoscopy to rule out FAP and maybe to deal with the hemorrhoids as well. 20 days later, I am still waiting for the referral to be sent and I am becoming a very anxious bunny!   

Why am I anxious - well to have an osteoma in the mandible angle is rare, even rarer is a recurrence.  My gut (pardon the pun) feels something is off BUT I don't know what.  I don't know who to ask or if anyone has had a similar experience.  What can I expect if it is Attenuated FAP?  Am I worrying for absolutely no reason? 

  • Dear Toni197106e332

    Thank you for getting in touch with us at Macmillan Cancer Support. My name is Penelope and I am one of the Cancer Information Nurse Specialists on the Macmillan Support Line.

    I am sorry to hear that you are feeling anxious. If it would help to talk things through then you are welcome to give us a call on the contact numbers at the bottom of this message. Your questions are very important, and you are absolutely not ‘a bit of a fraud’ to contact us.  We support people regarding cancer prevention and screening as well as people who have a cancer diagnosis. As a healthcare professional you are well informed about your condition, and it is ok to use this information when speaking to your GP or other healthcare professionals.

    Familial adenomatous polyposis (FAP) can be inherited from a family member but as you may be aware about 1 in 5 people with FAP (20%) are the first in their family to have the gene variant. The symptoms that you describe could be due to other causes, but I can understand that you want further information and reassurance.

    It sounds like your GP has been supportive in this and has agreed that a colonoscopy is indicated. What I was not sure of from your message is why the referral has not yet been sent. I can appreciate that this is making you anxious as any uncertainty around any next steps in investigations can be more difficult to cope with.

    Speaking to your GP surgery again about this and when to expect the referral to be sent or any waiting times, could help you feel more empowered as to what to happens next. You also mentioned your ongoing symptoms of tiredness and bleeding from the bowel or haemorrhoids. I wonder if these persistent symptoms, despite the folic acid, are also contributing to your concerns. If symptoms do not improve then it is the right thing to do to speak to your GP again about this as well. Sometimes people worry that they are wasting a GP's time, or as a healthcare professional they may feel they are being too demanding, but you know what is normal for you and your body.

    I can see that you have joined the Hereditary non-polyposis colorectal cancer (HNPCC or Lynch syndrome) forum and I can appreciate that you may want more information about FAP. The Macmillan forum does not appear to be very active. In the ‘further information’ section of our booklet Cancer and genetics – how cancer sometimes runs in families we have the details of the Polyposis Patient organisation. It offers support and information to people primarily at diagnosis/ post diagnosis, but you may find it helpful. There also appears to be a closed Facebook group called FAP Gene Support Group. As I do not have access to this closed group I cannot comment on the quality of the information or support offered but I have included it as you asked if anyone might have had a similar experience.

    Finally, whilst I have posted the above links it is important to take things one step at a time. Knowledge can be very helpful, but it can also be overwhelming and may not be relevant to your own health. If you feel that gathering information about FAP is making you more anxious, then focusing on the steps above such as the finding out more about the proposed referral and reporting your current symptoms may be more helpful. Talking things through may also help, so do give us a call on the number below if you would like to.

    Best wishes

    Penelope

    Cancer Information Nurse Specialist

     

    You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email. 

    Ref PN/VP