Ovarian Epithelial Mucinous

[Lymetree]

Hi, I am new here and the first thing I want to say is help!

I keep reading about more fortunate people than myself with a stage 1 mucinous. I am more than a little scared to say that mine is stage 3 grade 2. Its based on my left ovary but it has progressed to the fatty tissue across my belly button area. I saw my oncologist on Friday who has not given me more than two years based on averages and percentages. Perhaps I should not have asked! I am starting standard chemo in two weeks time. Does anyone out there have anything hopeful to say?

Many Thanks - Maureen

[Jen85]

Hello and welcome to the club that nobody wants to join! You will find alot of really useful information and support here. There are some fantastic ladies on this site.

The only thing I can say is that this journey is different for everyone. You are not a statistic. Stats are out of date and there is alot of very promising research going on. There are many people who have proved their doctors wrong! No reason why you cant be one of them!x

[Lymetree in reply to Jen85]

Hi Jen, Thank you so much for your reply it's made me feel better. I must stop feeling so maudin and instead decide to go for a radical remission! Well some people have them so why not me - perhaps?

[Lizz49]

Hello Maureen,

Welcome and so sorry you find yourself here, but it is a friendly supportive forum and everyone here will have an understanding of what you are going through. Most of us have had a diagnosis and treatment and have come through the other side, even if there have been bumps along the way!

I’m not familiar with mucinous type OC as mine was clear cell, but I believe both are the rarer types. You say you’re stage 3 and starting chemo but have you been offered surgery? Some ladies have chemo first then surgery, then more chemo. I too was stage 3 with spread to omentum but surgery removed it all and I had chemo after that. I’m surprised your onc is taking in terms of time...mine told me to go live my life and hopefully I won’t recur but nobody really knows. And your onc talking based on averages and percentages is also to be taken with a pinch of salt, as we are all individuals and there are some stage 4 ladies on here still doing well years down the line.

I’m sure some other ladies with a mucinous diagnosis will offer advice but all I can say to you is it does get easier once the shock of diagnosis has sunk in and you start your treatment plan, you’ll feel better knowing that something is being done and you can focus on recovery. Stay strong Maureen and I’m sending you big hugs,

Liz Xx 💖

[Lymetree in reply to Lizz49]

Hi Liz, Thank you so much for your prompt and uplifting reply. I am starting with three rounds of chemo, then another CT to check progress, followed by either an op or a further three rounds of chemo depending on what the CT shows? I am 68 which probably doesn't help but I really can't be sure how age factors? Also I really don't think I should have asked this fairly young surgeon (thirtyish) his opinion on outcomes, I can't think why I did? You are right, we are all different and respond differently so I need to stay positive.

Many Thanks - Maureen XX

[Caroles1 in reply to Lymetree]

Hi Maureen,

I was mucinous 1c, they weren’t going to operate, but did in the end, followed by 6 months Chemo. I also had ascites and had to be drained.

My opinion would be, always have the de baulking operation, to get rid of as much as possible and if that is offered to you, with chemo after, grasp it with both hands.

Don’t do Doctor Google or ask your prognosis, since everyone is different and the stats are out of date. I would always go for the “prove them wrong“prognosis, since no one can be certain of any outcome.

As Liz says, there are ladies on here years down the line and you need to focus on that.

I am NED for 3 years now and don’t think about cancer most days, adopting my head in the sand attitude, since worrying won’t make it any better.

Good luck and positive thoughts to you,

Carole xx

[Lymetree in reply to Caroles1]

Hi Carole, Thank you for your reply. I also have a acites, am currently carrying about 14 pounds (6.36kg) in extra weight. Its making me quite nauseus so Im not eating a lot. Also I now find I cannot sleep on either side as it makes my hips painful so I'm laying on my back only - not good. They are reluctant to drain as it's invasive and I think, painful at some point. What was your drain like? I've been told acites will go around 2nd round of chemo but thats 5 weeks away!

[Caroles1 in reply to Lymetree]

My drain wasn’t at all painful and such a relief, I was treated privately and may suggest to you that this is another way private and nhs differ.

I didn’t feel anything and so many other ladies on here have been drained with good effect.

I would ask for a drain, I remember what it was like and there is no way I would have gone 5 weeks without it.

Insist my love, you need to be comfortable,

Love,

Carole xx

[Lymetree in reply to Caroles1]

Thanks, that is worth considering.

[Seasun36-uk]

Hi Maureen,

Welcome to this supportive forum!

Please don’t take on board what the doctor said. I really think it is an unknown for the medical staff....especially with all the new advances in chemotherapy, surgical techniques & PARP Inhibitors (further on, if needed).

I really don’t think a prognosis of ‘time’ should be given!! It makes me mad!

Take each stage as it comes and be strong & hopeful 🏋️‍♂️ 🙂

As for your age, just keep as healthy (food/exercise/sleep) as you possibly can. Linda xx

[lorraine71-Australia]

Hi Maureen, Good advice from the ladies, when I was diagnosed I was told I would not see the year out that was four years ago.

You will find ladies on here who have beaten the odds and wit all the new treatments and trials it can only get better..Take care Lorraine xx

[tara108]

Hi Lymetree. So sorry you are going through this. Do ask your oncologist or get 2nd opinion re operation etc. Stats are stats and people are people. I am learning to live with not knowing/uncertainty and we are all different. They don't actually know and all predictions are based on average figures! and new treatments coming fast. So thinking of you and sending hugs from Australia from an Aussie/originally English gal.

[Maxjor]

So sorry someone gave you a timeframe. One thing I have learned here, at the hospital, on this site (and one other site) is that every single one of us is different. You can have the same exact type of OC, same stage and grade, and one person will do well on a treatment while another will not respond at all. When I asked prognosis, no one would give it to me saying everyone is different, new things coming out all the time (I am stage IV, grade 3) and then just last year, a new drug (PARP inhibitors) was approved for OC and is proving to extend PFS ("progression free survival" which you probably read alot about on Dr. Google) and more is in the works. As my onc said "the longer we keep you alive, the longer you will stay alive". Sounds strange but I am OK with that. I have a different diagnosis that you but have been NED twice and am right now.....so poo poo on two years and read and potentially follow the advice of others who have your type of OC. I have brought many questions to my oncologist that I got from this site and he always says what great questions I have, some he can't even answer...yet! Wishing you some peace knowing you are NOT a statistic and you are special, unique and many many many beat all odds. oxoxoxoxox Judy

[moneill1211]

Hi Lymetree,

My wife was diagnosed after surgery in April.. She was 1C grade 2 mucinous and the cyst leaked during surgery. They found a small piece of the tumor in her pelvic area, but just think it dropped and did not spread. She did 6 rounds of GI cancer treatment called FOLFOX.. A lot of Doctors believe that this rare type looks and acts like GI cancer, and are starting to treat it like one.. Worth bringing up to your doctor. She finished treatment last month and we have her follow up next week. All tests were good while on treatment. Like a lot of the other members said, you are not a statistic, and there have been huge advances over the last 10 years. Stay positive and get a second opinion.. Def ask about FOLFOX.