Mucinous Adenocarcinoma

[Kerri93]

I'm new here.... Back in 2015, at the age of 21, I had a very large borderline cyst on my ovary that was removed. It came back larger and in February 2018, at the age of 24, I had my right ovary and fallopian tube removed. It was Stage 1, but because of its size and having to be drained during surgery for removal, it is classified as 1c. In case of any spilling during the draining, I began 6 rounds of adjuvant chemotherapy in May 2018. As happy as I am about treatment coming to a close, I am still stressed and worried about the effectiveness of chemo for my type of cancer as I know it is commonly platinum-resistant. Are there any other people who have had similar experiences with this type of cancer?

[Petrolhead]

Hi K

There are several ladies who have been diagnosed with mucinous OC. There have been a few threads on it which you can find by using the search box which may give you some information.

In the paper by Frumovitz and Brown in 2014-

Mucinous Tumors of the Ovary: Current Thoughts on Diagnosis and Management

Jubilee Brown and Michael Frumovitz

It states that can be up to 70% resistant. Not particularly good odds but I like to think at least 30% effective. Surgery is always going to be the top level in first line treatment. After that you have to take what is dealt. I would have liked better odds but I now focus on the monitoring. Can I ask what monitoring you have agreed to?

For many with mucinous CA125 is not a good indicator with CA19-9 and CEA being better. However, only better with nothing guaranteed. I am having these three with regular CT scans. Some hospitals will monitor for 5 years and some for 10- so varies a lot.

IMHO you need to decide how you want to progress re monitoring etc and ensure it is followed. You appear to have had the current gold standard treatment.

Now you have to go on living with the monitoring (if you have any) and the thoughts that many of us have re it coming back. It is not particularly easy but the ladies on here are very supportive of any worries or concerns you may have. Please do read previous posts and threads concerning this type.

Best wishes

Fay

[Kerri93 in reply to Petrolhead]

I believe ultrasounds and blood work are what is wanted for me once I'm done chemo. It hasn't been discussed much since I got a new oncologist halfway through treatment as my first one retired.

[Petrolhead in reply to Kerri93]

Hi K1993

I am having CT scans rather than ultrasound scans. Depends on the oncologist which one they prefer.

Fay

[lynn6156]

Hi,

A wave from another mucinous here. I'm on dose 5 of the chemo next week and not thrilled about this resistance thing but nothing much we can do about it. The thing that worries me most is that the consultant muttered something about not following up other than waiting for symptoms!! I'm a little deaf and may have misheard - I was so flabbergasted I didn't say anything - it was back on the day when they were bombarding me with info about doing chemo so I let it go. But I have to say no follow up is not going to work for me so there is going to be a situation shortly where we have a 'discussion'.

I'd be interested to know what follow up you've been offered.

Sorry I'm no help with the stress part - I think it's something we all have to find a way to handle, whatever type /grade we've got. I'm trying hard to ignore it /find things to do and things to look forward to. It's not easy

Lynn

x

[Petrolhead in reply to lynn6156]

Hi Lynn

I am sure you have read previously re my thoughts on monitoring. My onco suggested watch and wait till we had a discussion. Even recently her sidekick suggested dropping the scan. I reminded him of the RM recommendations. I also replied if she did not agree to continue what was my appeal process which got him flustered. He mentioned PALS and I mentioned I was familiar with them. Cue copy of the letter stating the monitoring would continue as per that agreed previously.

Have you got a preference for yours. If you are coming up for that post treatment discussion I think you need to be ready! I will be interested to know the outcome.

Fay

[lynn6156 in reply to Petrolhead]

Ah...hmm...no I don't remember reading your thoughts on this Fay but I'll check tomorrow and start lining all my ducks up. I don't know the RM's recommendations either so it looks like K1993's post might be a bit of a wake up call for me to line up what I'm going to be saying. And quickly too because thinking about it I see the consultant or the junior on alternative clinics. This week I'm guessing its the consultant which means my final one will be the junior. So I may have to have 'the discussion' this week before dose 5 incase they dodge me for dose 6. Eek!

Apologies K1993 - I don't want to hijack your thread so I'll stop wittering now!

Thanks Fay!

Lynn

x

[Petrolhead in reply to lynn6156]

Hi Lynn

Also apologies to K1993 for thread divert but may be useful information for the future.

FYI my monitoring is bloods every 3 months. CA125, CA19-9 and CEA. CT scan every 6 months. This to continue for 5 years.

HTH

Regards Fay

[Kerri93 in reply to lynn6156]

Follow-up hasn't been discussed in-depth, but I'm thinking it will be as I'm also doing my 5th round in a week. Unfortunately my oncologist retired mid-way through so the last meeting was just getting to know the new one. Last time it was mentioned ultrasounds and bloodwork every 3-6 months was the discussed follow-up. I think they are wanting to avoid continuous radiation exposure for me because of my age.

[lynn6156 in reply to Kerri93]

Thanks for the info ladies . Looks like the bare minimum is bloods 3 monthly ish and possibly scans as well.

K1993 - if they are avoiding radiation maybe you could ask for ultrasound instead as less invasive?

This is a lovely group to keep in touch with - someone always has either information or experience if you get worried about things

Lynn

x

[moneill1211]

Hi Kerri,

My wife (31 years old) was diagnosed a few months ago with Mucinous OC stage 1C. We live in NYC so she is being treated at NYU. They gave us the option of FOLFOX (Colon cancer treatment) or carbo/Taxol. My wife chose Folfox because you don’t lose your hair. With 1C, chemo is used to help kill any lingering cells, and is just precautionary. The Dr. told us that it only helps reduce risk by 5% and the main treatment for this state is surgery.

It sounds like you are already cancer free, and shouldn’t worry too much about the chemo working, as it doesn’t sound like Dr.’s know just yet What the most effective treatment is for mucinous. We got a second opinion at Sloan, and they actually reccomended FOLFOX because they believe mucinous looks and acts like a GI cancer, and are starting to treat it like one.

It’s sucks with these rare subtypes, because no one really knows what works best.

It’s nice to finally meet someone else who is going through what she is going through at such a young age.

Here is my personal email and phone number, feel free to reach out with any questions.

[removed by moderator, please private message member to request contact details]

[DodieTn]

I am primary synchronous ovarian cancer stage 1c mucinous adenocarcinoma and 1 a endometrial. I had 6 rounds chemo. Carboplatin, taxotere and Avastin after my debulking surgery. I am 9 months out from last chemo, Ned. Ca125 5.7. wasn't supposed to respond but here I am. Wasn't supposed to live through surgery as I had severe blood loss, pulmonary embolism and Deconditioned. But here I am.

[Erinosaurus]

Hello! I too am unfortunately part of the mucinous clan. I got diagnosed with Stage 1A, Grade 2 in November 2018 - six weeks after I had a 20cm mass removed along with my left ovary and fallopian tube that they thought was benign or borderline at worst. Only 0.5cm of the 20cm mass was cancer. After ruling out that the cancer was a spread from the GI tract via colonoscopy and endoscopy my treatment plan is to do nothing else because they're pretty certain they got it all with the initial surgery. I'll have to do a routine ultrasound in May (6 months after diagnosis). I'm in Canada and was 33 at the time of diagnosis. I consider myself very lucky to have had this caught so early on. From the little research that is out there on this type and in talking with other women it seems that mucinous ovarian cancer likes to quickly create giant masses of fluid...which is why it is often caught so early.