My Ovacome

Mucinous diagnosis and scared!

Hi,

I had a radical hysterectomy in November and was subsequently found to have stage 1A grade 1 ovarian cancer, and I was told that I did not need to have any chemo as a follow up.

I have just found out that my type of cancer is mucinous. I am a little scared and worried because I can't find out much information because I believe it's quite rare, and what I have read fills me with fear because I understand it does not respond well to chemo.

I just wondered if anyone else has experience of this type, and can anyone shed any more light onto it for me please

Thank you,

Gill x

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Hi Gill,

Firstly,please don’t google! It’s enough to put the fear of god into you, the stats are so out of date and inaccurate.

I had a mucinous 1c tumour and ascites, which is why I had to have 6 months chemo. My understanding is if you have a 1a chemo isn’t necessary.

There is a nurse on this site that would be worth ringing Tuesday to get more advice.

Lastly, I am still here with no re occurance after 3 years and plan to be for many more years, there are others on here that are living proof and cancer free longer than me.

Please don’t be scared, there is always someone here to chat to,

Let us know how you are,

Carole xx

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Thank you Carole, I think I will ring the nurse on Tuesday. So glad to hear that you are doing so well - long may it continue!

best wishes

Gill xx

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Hi Gill,

Welcome to the site - though sorry you had to join us. I have no personal experience with mucinous ovarian cancer (my mom has HGSC); however, perhaps I can better explain what your stage and grade mean?

Mucinous ovarian cancer is a part of the epithelial ovarian cancer subgroup (which includes serous and clear-cell as well); which makes up about 5% of epithelial ovarian cancers. Mucinous tumors are often benign (75-80% of the time) and then can make the transformation to borderline than malignant.

Grade refers to how different the cells appear compared to healthy cells. Typically this grade is on a 1-3 scale; though some doctors/teams just use low grade and high grade. Grade 1 is "well differentiated" - which mean these cancer cells look more similar to normal cells than not. This often means that they spread a lot slower (at least what occurs in the lab-setting).

Wishing you the best,

Kris x.

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Hi Kris,

Thank you for taking the time to explain this so well - I feel as if I have a much better understanding now, and can talk to my oncologist about it at my next appointment. I really appreciate your help and support,

Gill xx

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Welcome and sorry you have to join us, Caroles l is right, don't google stats are out of date. Its okay to be wary and worried but as suggested do ring the Ovacome Helpline for some further reassurance all the best

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Thank you, I will take the advice of all you lovely ladies, I am so glad I found this group!

best wishes

Gill x

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Hi Humbug

Yes we're quite a rare sub group us mucinous girls! But the great news for us is, if caught at an early stage, the prognosis is excellent. As you've rightly said mucinous doesn't respond well to chemo and if it's already spread the outlook is not so certain. This is only what I have found out in the last couple of years or so as more information comes online. There was no information to be found back in 1988 when I was diagnosed (and no internet). My monosyllabic consultant just said he only saw a couple of these 'bizarre' tumours in his time and that I needed no further treatment aside from the surgery. I know I have been extremely lucky as I've had no recurrence.

But I would ask for more information from your medics. Firstly to know exactly what you had (was it mucinous cystadenacarcinoma?) and also to set your mind at rest. I know from my experience if I'd had a bit more knowledge back then I wouldn't have spent years of what seems like needless worry. All I knew back then about OC was that it was known as 'the silent killer'.

Like everyone on here this is not a club anyone wishes to join but it sounds like you're going to have a great outcome.

Wishing you the very best.

Catherine X

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Sorry Gill! Addressed you as Humbug.x

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Hi Catherine,

That made me laugh! You can call me what you like!

Thank you for the information! I will definitely ask my oncologist for some more details.

Sorry you must have had such a scary and unsupportive start to your journey, but really glad to read that you are doing so well.

Very best wishes to you,

Gill xx

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I was diagnosed with stage 1a mucinous adenocarcinoma of my right ovary in Sept/Oct 2011. I had surgery but did not have chemo. My cancer has not recurred.

You are right about there being very little information available, but what information there is suggests that those of us caught early have a really good prognosis. While it is true that mucinous tumours do not tend to respond well to chemo, it is also true that if caught at stage 1 they rarely need chemo.

Whether or not you are going to be happy googling will depend on you and your background. I know that many others on here strongly advise against it, and if you do not have any knowledge of medicine and statistics, you might well be happier if you don't google. If, like me, you want to know every last detail about your illness, that is unlikely to stop you. Just remember that any published statistics refer to people who became ill at least 5 years ago, and treatments change, so there is no guarantee that their outcomes would be the same if they were treated today. Remember also that even if you find statistics that look dire (and believe me, with our diagnosis you won't!) there are always some people who do much better than expected, and there is no reason you shouldn't be one of those people.

All the best,

Barbara

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Hi Gill, another 1a mucinous gal over here. Was diagnosed age 33 in May 2016, first op to remove my rather large tumour was in the June, second op to remove ovary and appendix in the August. They take the appendix as the tumour often originates from there. As my Onc managed to 'bag' the tumour before removal, nothing 'spilled' and therefore no chemo was required. I am seen by my Onc every 3 months with an internal USS every 6 months. No CA125 as it is not a good indicator for mucinous. I am coming up to my 2 years post diagnosis and have had no reoccurrence thank goodness. You've already been given some great advice and there is also a lovely closed group on FB for us 'borderline' specials :) There is a fine balance between being well informed and scaring yourself witless...but if you have to be part of the OC family, this is not a bad place to be in the grand scheme of things. Wishing you well and try not to worry. They got the nasties and i'm sure they will put in place a follow up to monitor you (and if they don't, they should). Jemima xx

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Hi, I had a 1C grade 1 mucinous tumour removed five and a half years ago. I've been fortunate to have NED since. If you put 'mucinous' into the search box, you'll find some previous posts including some useful resources (look out for Petrolhead 's posts!)

Chemo is rarely recommended for 1a grade1 this is because of the balance between potential benefit vs potential risk. You've good reason to feel hopeful and I would encourage you to write a list of all you want to ask your team,

Do have a look at the Target Ovarian CAncer guide, 'What Happen's Next?' if you havent already... targetovariancancer.org.uk/...

Best wishes, Sx

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Hi there

I had a large mucinous tumour removed in January 2010. No chemo was advised as it was borderline , or at least the part that was tested was borderline. I wasn’t staged as the surgeon was not an oncologist. But I’m still here , no recurrence , touch wood.

Dealing with any diagnosis with the word cancer in it is very difficult and takes time to get over mentally and physically. It’s also not ideal that you have only just found out what type it was. Because this tumour type does not respond to chemo does not mean that nothing can be done if it appears again , it is just treated with for example surgery.

You will need to give yourself time and space to deal with all of this.

Best wishes xxx

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