Mucinous Ovarian Cancer query

Hi and welcome to the community, sorry to hear about your diagnosis.

While I am not expert on this kind of cancer there is information available on the main site and using the search tool for this group about 3 months ago from someone who had stage 3 mucinous ovarian cancer and was about to start chemotherapy.

Good luck with the hysterectomy, I had the "opportunity" to meet many ladies who went through it during my wife's stay in hospital - her's was done as an emergency so her recovery was longer and harder than most.

<<hugs>>

Steve

Hi

Welcome.  Mucinous is a rare subtype of Ovarian and there aren't that many of us!! I too was diagnosed with Mucinous 1c grade 1.  How have they diagnosed this ?  Mine was found when they did amhystectomy for cysts.  

This is a great type to have early if you must have ovarian cancer.  Caught early, and yours is, hopefully you can have surgery, maybe treatment and be cured.  Unfortunately mine came back but my surgery was very sub optimal and my surgeon was not looking for cancer, and he was a Pratt..... Excuse language but he's not my favourite person.   Because of the 'c' aspect of your diagnosis, and I'm wondering how they get this if it is not removed yet.... I was advised and I would again go through the chemo, it basically mops up any potential microscopic cells that may be lurking, people are usually 1c because of rupture either before or in surgery (I think) so you can see why having the mop up,treatment is the way I went. Those pesky little cells go off and get into all sorts of things.....

What did it for me was the fact that I didn't want to look back and wish I'd done the chemo, I wanted to hit it with everything available and hit it hard.

At the end of the day, it's your decision and you should discuss it with your onc, but I would go at it. 

If you want to message me or anything pls do.  I've been doing this for a couple years know and have researched quite a bit.

All love and hugs

Steph x

Hi.

I had mucinous ovarian cancer stage 1c in October 2014. I had surgery to remove my left ovary and Fallopian tube. The tumour was attached to my left ovary. I was also given 6 cycles of chemo which is usually used for bowel cancer because a mucinous cancer is more similar to that of a gastro intestinal cancer. I was never told that chemotherapy wouldn't respond to this type of cancer. I did a lot of research as spoke to a lot of specialists who did trials in this type of cancer. I had a referral to an expert, Professor Gore in the Royal Marsden who also recommended chemo. In the end we went with bowel chemotherapy - capecitabine and oxaliplatin for 6 cycles and I have been clear ever since! 

Any questions, pls let me know, Gemma x

Hi Gemmak,

Interested to see that you had a referral to Professor Gore at the Royal Marsden. Why did they refer you- was it because mucinous not very common? or your oncologist did not feel they had enough experience or you wanted a second opinion (or other!)- just curious as I am about to discuss treatment options. I am Mucinous stage 1C but do not know the grade yet.

Also did you go down to London for the treatment or have it at the local hospital.

regards Fay

(also a Leicester lass currently in Brum)

Hi Fay

Sorry to hear about your diagnosis although it's one of the best ones to be diagnosed with if caught early which they have so that's good news. I opted myself for a referral to Gore because my oncologist wanted to treat me with ovarian chemo but I had researched a lot and spoke to a few professors and came across a trial which had been done which treated people with our diagnosis with ovarian chemo and some with bowel chemo and the results showed that it made no difference which chemo was used.. However a professor on that trial in the US told me to opt for bowel chemo because ovarian chemo wouldn't work on this type of cancer! I can forward you his message to me. In the end, Gore sent biopsies of my tumour for another histology to a specialist in this cancer and he concluded that yes it is definitely a primary ovarian tumour (and not come from the bowel) but offered me a choice between the chemos saying that they would act the same way and have the same impact apart from with ovarian chemo you lose your hair and with bowel chemo you don't, so I opted for bowel chemo! 

I work in Birmingham, colemore row every week day and would be up for meeting up if you want? 

Hi Gemma

Thanks for your super quick reply. I was just waiting to see the onco consultant in the hospital. Just finished reading your post and I was called in to see her so I was fully prepped. Your info has been really helpful. I thought I had done well in my research but you seem to have done even better. Will be having a chat with Prof Gore about chemo so I can decide which regime. 

My oncologist said I could just watch and wait and if any symptoms they would act. As I never had any symptoms (partner felt stomach lump) I said this would not work for me. She replied I might have symptoms if it returned!  Too vague for me. 

I also did not know they could test if it was primary. I shall be having that done. My onco just said was probably primary due to site and cyst size. I much prefer definite to probably!

So you have been really helpful thanks very much.

Two questions if I may

1. Are you being monitored and how

2. Was your local hospital willing to use the regime that you had. (My onco was not sure as not standard for OC)

Be great to meet up and chat. I work Thursdays usually but occasionally do other locums. So whenever suits. 

Lastly would love to see the info/email from the American prof re his advice on the chemo

Thanks again

Fay

Hi, I had surgery nearly 6 weeks ago for a borderline ovarian cyst. Turned out to be a stage 1c, grade 1 mucinous ovarian cancer on histology.

Starting chemo tomorrow with Carboplatin. Oncologist said that opinion is divided as the whether chemo is necessary but said it was my "insurance policy" to mop up the abnormal cells found in abdominal washing. 

I am guessing a plan will be discussed with you when you get the results after your operation. 

Hope all goes well with your op next week. Mine was straightforward and I am recovering well.

Hi Fay

Have you been booked in for surgery yet? And what surgery are you having? How old are you if you don't mind me asking?

I am free for a coffee on Thursday at 1pm if you can meet? Let me know!

Because Prof Gore and I opted for the bowel chemo together, my local (and on-going) oncologist, Dr Vasanthan was happy to put this in place unde Prof Gore's supervision allbeit outside of the usual OC treatment guidelines. I will print the message from the American Professor for you on Thurs (or otherwise, let me know your email address and i can send it to you).

I am checked every 3 months. They do blood tumour markers and sometimes an ultra sound scan if i havent been feeling great or if quite a bit of time has passed. It is wonderful how every 3 months i get my mind put at ease, allbeit a scary experience every time.

Hope you are doing ok. All scary stuff. This part is the worst and its the unknown but once you have a plan in place to get rid of this awful thing all will be much clearer and easier.

Let me know about Thurs. I can meet around Colemore Row or City Centre.

Thanks,

Gemma x

Hi Gemma

Had TAH and oof 6 weeks ago. Surgeon thought fibroid, ultrasound person cyst but histology trumped the lot with mOC. I was waiting to see oncologist for first time when I was reading your last bit of info. 

Unfortunately am 60 but do not let that fool you as mentally still 32. 

Unfortunately cannot do Thursday as usually work Thursdays (but have swapped with a colleague next week and will be working Friday next week) I work supplying specialist metabolic and tube feeds from a distance pharmacy in Worcester. 

I do odd locums on other days but only work regularly on a Thursday. 

Can usually do any day but Thursday. If you can only do a Thursday I will see if I can swap with a colleague (like I have done next week) if Thursday suits next week let me know. 

Email address (assume forum moderators allow this) is

Fay-l@tiscali.co.uk

By the way found out the grade- it is grade one. So there is not the pressure to decide chemo urgently and feel as though I can wait till I have gathered all the info I require. 

Cheers Fay

This is such an interesting thread!

Hi, I'm new here but do use other OC forums. 33 married, no kids. Was diagnosed with a mucinous BOT in May this year. First op in June to remove it, second op in August to remove ovary, tube and appendix. Staged 1a (would have been 1c had first surgeon not 'bagged' the thing before removing it!) Was told chemo doesn't work on BOT's full stop. 

Been 3 months since last op and had on/off nagging abdominal pains (no symptoms with first BOT). Called CNS and had USS on Sunday. Showed a new growth/cyst on remaining ovary. Seeing Onc this Thurs to discuss. Fully expecting a 'wait and watch' approach as it's only 2cm...but wondering if that is the right thing to do. Thought i knew a lot about all this but learning everyday and interested that some people ARE offered chemo and others are not. Also heard Prof Gore's name banded about a lot too...seems to be the mucinous man of the moment!