MEN1 Cancer Gene?

[mayb_baby]

I don't really talk to my dad but he FB messaged me to let me know he has the cancer MEN1 gene, my auntie is dying atm (she won't live to 2015) because of it and my nana/her sister and her brother all died from it in the last 2 years.

So I was told I need tested, anyone else had this? Apparently it's a 50% chance and if I test positive, it's a 50% chance then for my kids.

 

[seoj]

Not knowing all the ins/outs of what that may mean- at the very least, just knowing and being screened regularly is a good thing. At least you have the info and can be proactive and knowledgeable (IF you even have the gene).

I know that doesn't make it less scary really- but, with pretty much all cancers, the earlier they are detected the better. So knowing before you have issues is better than finding out too late.

I honestly wish there was a test for other forms of cancer- my Mom had pancreatic Cancer (which is very rare)- but because symtoms don't happen till later in the cycle- and usually take a while to diagnose, as they present as other issues like IBS or ulcers... it's typically too late once it's discovered. We were lucky enough to have my Mom a year after she was diagnosed.

My cousin and SIL though both had other cancers- and both are now over 5yrs cancer free!

I'm sorry anyone has to even think it's a possibility... and I'm wishing you the very best hun!!!!

 

[mayb_baby]

Not knowing all the ins/outs of what that may mean- at the very least, just knowing and being screened regularly is a good thing. At least you have the info and can be proactive and knowledgeable (IF you even have the gene).

I know that doesn't make it less scary really- but, with pretty much all cancers, the earlier they are detected the better. So knowing before you have issues is better than finding out too late.

I honestly wish there was a test for other forms of cancer- my Mom had pancreatic Cancer (which is very rare)- but because symtoms don't happen till later in the cycle- and usually take a while to diagnose, as they present as other issues like IBS or ulcers... it's typically too late once it's discovered. We were lucky enough to have my Mom a year after she was diagnosed.

My cousin and SIL though both had other cancers- and both are now over 5yrs cancer free!

I'm sorry anyone has to even think it's a possibility... and I'm wishing you the very best hun!!!!

Thanks for your reply
So sorry to hear your mums suffered with pancreatic cancer
This is what I know about MEN1:

MEN stands for multiple endocrine neoplasia. MEN is a rare condition caused by a faulty gene, which can be passed on within families from one generation to another.
In multiple endocrine neoplasia, a number of different tumours develop in the endocrine system. The word neoplasia means 'new growth' or 'tumour'.
MEN1 tumours can be non-cancerous (benign) or cancerous (malignant). Malignant tumours can spread to other parts of the body, but benign tumours do not spread.
MEN1 is diagnosed when a person has more than two endocrine tumours in the body, and is found to have a faulty gene (genetic mutation). A person can also be diagnosed as having MEN1 if they have one endocrine tumour and one or more members of their family have been diagnosed with MEN1.

I'm not really scared, I don't know why but I'm sort of like I will have it or I won't and there isn't much I can do if I do have it, but at least I know I carry the gene(if I do) and my boys can eventually be tested if I have it.

I have had stage 2 pre-cancerous cells removed from my cervix 2 years ago, I also have a benign lump in my breast (fibroadenoma).
I get smears now yearly so I feel confident they are keeping an eye on me, which is great as I'm 22 and I know most people don't even get tested until they are 25 here in the UK.

My step-dad is 10years clear after stage 3 cancer, testicle that spread to his intestines and stomach.

Calling my Dr tomorrow to ask now I know, when should I get tested and what happens if I have the gene. x

 

[seoj]

That is great your being proactive hun! Kudos.

I cannot imagine why so many women in the UK go without getting tested-- I get my pap annually (since I was 18!!) and it's a must. I had abnormal cells one- needed a biopsy, then just got checked every 6 mos for 2yrs before I got the all clear. It's never fun to have those issues- but always better to know sooner than later!

 

[mayb_baby]

I had to be tested every 6 months after I got my cells removed, my first smear after the removal was abnormal and I needed another biopsy but not another removal and my third smear was all clear, as was my last.
So fingers crossed it stays that way x