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Mucinous Cystadencarcinoma

Hi,

I'm Catherine diagnosed with stage 1 Mucinous Cystadenacarcimoma in 1988. Massive tumour, so debulking followed by check ups for 5 years. Thankfully and very, very luckily disease free (so far!). Wish this amazing site had been around then. Such a terrifying and lonely place to be at diagnosis. Ironically I now live near the Christie and Marielouise is the name of a quiet little garden nearby, where I'd go when I feared 'the insidious monster' was back.

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Hi Marielouse

I was diagnosised with Mucinous Cystadenacarcimoma (stage 3) in Feb. 2017, had a complete hysterectomy March 2017. Woke up one morning with a hugh lump in my belly. Never had any pain, never had any signs. I am doing fine right now. No chemo just Celecoxib 200 mg twice a day. My only complaint is the mucin in my belly, there is no way that that can be removed. Are you experiencing this problem? I would be very interested to know if you had chemo? I not what treatment did you have. Glad to see your post.

Good luck, Jeri (11209)

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Sorry, that should have been addressed to Catherine not Marielouse.

Jeri

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Hi Jeri,

Similarly to you, no obvious symptoms (apart from the massive lump in my abdomen which I only became aware of when the GP out her hand on it! And I'm only 8.5 stone So it was hardly hidden!) Felt such a fool and when I looked back I realize I was becoming very, very tired and needing to go to the loo alot more (the latter the only symptom which took me to see her in the first place thinking I must have a urine infection. If only!!!). But the big lump aside, fairly innocent sounding symptons (but sinister as it turned out) but no I didn't get mucin and I'm sorry that nothing can be done for yours?

My only subsequent issues were discomfort from adhesions which if course I thought was the return of my tumour and bad headaches (the latter I could only put down to HRT).

Again, like you no chemo, tho a later medic said he might have given me some. But I've since learned that our type of rare tumour doesn't respond to it.

Wishing you all the years of recovery I have had and more. Interested to know if you are on HRT? They took mine away after 20 years!

Love Catherine x

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Good morning Catherine

I too am very small - I only weight 110 lbs. (don't know how many stones that would be). Always had a very flat tummy, even after five children. Rolled over one morning and noticed this hughed lump in my belly. I immediately went to the doctor from then on it was Cat Scans, sonograms, blood tests and then a complete hysterectomy.

Had absolutely no sign of anything wrong until the lump. I am 6 months since the operation. No. Pain, in good health. My only complaint is the mucin. Do you know anything about mucin? Does it keep growing?

I am not on HRT, already through menopause. The only thing I am on is Celecoxib 200mg twice a day. It is a Cox2-inhibitor.

Very interesting article from the Moffitt Cancer Center website, in Tampa, Florida on Cox2-inhibitors.

Thanks for getting back to me. Your story gives me hope.

Thanks again,

Jeri

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