Mucinous Carcinoma

Hi all, Ive just joined the site today, A little about me.

Im 32 with 3 young kids. have previously had 2 huge ovarian cysts removed, and in December 2011 went back with my 3rd suspected one which was confirmed by ultrasound. The cyst was so big that they could not tell if it was 1 cysts or 2 or what it was attached to, so a CT scan was ordered. The CT scan didn't confirm much either and was just told it had to come out.

When a letter landed on my doorstep stating i was a malignancy risk of 90 i was mortified as this was the first mention of cancer in my journey. I googled and found that this isnt a very high mark and a mark of 200 - 250 would show that cancer was present so that went to the back of my mind. I was in physical agony this time round, with a and e visits, and lots of pain killers. i was in bed for the last 2 months not being able to get comfy. eventually the op date comes around and i insisted on them removing my ovaries. i signed my consent form to state that if anything looked suspicious they could give me full hysterectomy.

When i came round they informed me that they removed my ovaries and fallopean tubes. My surgeon said he would contact me within 6 weeks for the histology results and that was that. When the call came in and appointment came to tell me they found cancer i was gobsmacked. He did say that he couldn't see any further cancer in my body but because he broke the cyst up i would need chemo.

Eventually seen an oncologist who informed that the cancer found is a mucinous carcinoma that is normally found in the gut and very rare on the ovary, so a pet ct scan was ordered. He called is secondary ovarian with an unknown primary. This showed no active cancer. Another appointment with the oncologist who honestly seemed quite confused as it should be from the gut not the ovary, but no other cancer was shown. He agreed to give me chemo for ovarian, 6 sessions every 3 weeks which should hopefully start next week, but wants to confirm with the upper gut oncologists if they want me to have a cocktail of chemo instead.

Ive done my own googling and this cancer is very rare in the ovary but does happen.

A day after being told i honestly don't know what to feel. I should be happy that there is no more cancer showing in my body, the chemo will hopefully eliminate any traces that escaped when operated on, but i cant help but feel if this isn't an ovarian cancer, if there is anything loose, the chemo is pointless if it doesn't target the cancer. What if the cancer is so small it didn't show up on the scan. I'm honestly lost with it all.

I also forget to ask the ultimate question of if he still categories me as unknown primary or actual ovarian cancer now.

Just wondered if anyone else also has a mucinous carcinoma of the ovary and has a similar experience, or any experience they are willing to share.

5 Replies

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  • I really don't know what to say - you have had a dreadful time with the lack of sensitivity and so many unanswered questions.

    I don't have any personal experience of this type of cancer but felt the need to acknowledge your post and send you a cyber hug. It might be worth looking at

    inspire.com - an American support board and I have read other accounts from women who have faced a similar diagnosis. There is a search facility which will bring up old posts and current threads for you.

    Have you been assigned a specialist nurse yet? If not go back and ask who your specialist nurse is. My specialist nurse is always on hand to answer questions and go through anything the consultant has said and can be a good source of support for both you and your family.

    You could also try giving the helpline at Ovacome a call their nurses have lots of up to date knowledge and will be able to give you some sound advice.

    Love and best wishes

    Becky

  • Dear Kellista

    I can only echo Becky's post. You seem to have had a terrible experience at the hospital and you should ask to be assigned a specialist nurse. The other thing you could do today is to phone the Ovacome nurses who are really helpful and knowledgeable and will definitely have some good advice for you.

    Let us know how you're getting on. Lots of love, Annie

  • Dear Kellista,

    I am so sorry, but like the other comments...ring the Ovacome helpline, they will be able to help I am sure.... they are very good and will ring you back if the nurse is on the phone to someone else....I think if you have chemo..it will target all cancer, even cancer that you might have elsewhere.

    When you have questions racing around in your head ( and you must have) try and write them down, so you will have them ready to ask your medical team when you next see them.

    Love and best wishes. X Gwyneth X

  • Hi there,

    My situation is very similar to yours, large cyst, shock diagnosis of cancer, burst cyst etc. I was 32 as well and had the cyst removed, then further surgery for a hysterectomy and to stage the cancer then chemo 6 cycles taxol/carboplatin. I also had a cancer that was mucinous and apparently the best tumour marker for me was C19-9 more commonly associated with pancreatic cancer.

    My message really is to wish you well. I'm now 5 years down the line so I wanted to send you a message that is positive. Like you I was initially realing as cancer had never come into my mind, I just thought I had a regular cyst "like young women get". My son was 2 at the time, and although the treatment was gruelling at times, he gave me something else to focus on during it all. After the treatment I had to adjust but have found as time has gone by I have been able to come to terms with what has happened and rebuild my life. I am more mindful of the need to look after myself through diet and exercise and also have made choices to avoid those things that make me unhappy/stressed (as much as it is possible to do!)

    You have already been given a lot of great advice in the answers above so unless there is something specific you might want to ask then I shall just close by saying all the best for the coming weeks of treatment.

    I'll be thinking of you,

    Joelle

  • Hi Kellista.

    I was diagnosed with a mucinous adenocarcinoma of my right ovary in October 2011. Fortunately it was stage 1A and I have not had to have chemo. They do seem fairly certain that mine was an ovarian primary in my case. At least you can feel somewhat reassured that they have seriously considered that yours may not have been an ovarian primary, but I quite understand your need to know what their current thinking on your diagnosis is! That might well be something your oncology nurse can help you with, so I would get in touch with her and ask.

    I'll be hoping for the best for you,

    Barbara

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