Re current mucinous cystadenoma

My daughter is only 21, she got her first tumor at the age of 14 (I hear that's fairly uncommon at that age for this rare type of tumor) she has since had 9 surgeries for 11 more of the same type of tumor (which I hear is also quite rare at any age). They have finally removed the ovary that all of the tumors were on along with her appendix during the same surgery. She also suffers from endometriosis. They have now implanted the Morena IUD to help slow down her endometriosis. My question is what is the likely hood of these tumors starting to grow on her other ovary and how likely are the to become borderline or malignant the more she gets?... A few of them have torsioned the ovary and she currently has a growth on her uterus. Should she insist that her GYN do a biopsy on the uterine growth considering her history?... Any answers are greatly appreciated!

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  • HI Aurora0904,

    I read your post and I'm sorry I can not help, but I have say my heart goes out to your lovely daughter she has had more then her share of surgery in her young life,

    I think your question is a very hard one to answer.This needs a treatment plane that can only be provided by the experts, If she was my daughter I would have a couple of opinions if possible, you could ask her GYN about the Biopsy and see what his opinion is.

    This must be hard on you as a mother so please do keep in touch when you need encouragement I hope you get the right information you both need,

    Best wishes Lorraine xx

  • Hi

    So sad that your daughter has had all this to deal with in her young life .

    Sorry am also not able to answer your question but agree that a second option by a specialist would put your mind at rest that your daughter is getting the right treatment plan .

    My daughter is 20 and I can only imagine how difficult this must be for both of you . Hoping you get an affective plan in place to blast this disease well and truly .

    Sending love and support Kim X

  • Hi Aurora - gosh, your daughter is very young to be having to deal with all this. I too, am a mucinous lady and was diagnosed last year at age 33. Had first the tumour removed in June, then my right ovary, tube and appendix 2 months later. There is always a risk of reoccurrence, but i'd like to think your daughter is on some form of a follow up with her medical team based on her history? I think only the experts can answer the questions you've got and even they don't have a crystal ball. The main thing is being regular monitored so if anything does crop up, it can be dealt with quickly before it perhaps becomes more sinister. You mention your daughter currently has a growth on her uterus...is this being monitored? I ask as i thought i had a reoccurrence at the end of last year when a scan showed a new growth on my remaining ovary. We took a 'wait and watch' approach and i was rescanned a few weeks ago and it had disappeared. I will be monitored regularly for 2 years but will always have a fast-track straight back to my Oncologist whenever I need to in the future if i have symptoms. Sorry I couldn't be anymore help but I think that perhaps you need to write down some of your concerns, discuss with your daughter and together approach her medical team for the answers. You are both in my thoughts. Jemima xx

  • It is sad to read that one so young has had so many surgeries. I agree with Lorraine that a second opinion should be sought as to the best way to proceed. Possibly even if a third if the two opinions differ.

    Do keep in touch.

  • I feel for you both it must be so hard dealing with this at such a young age. It sounds as though you need to asks about a biopsy and get a second opinion if you're not happy with what you are told.

  • Hi Aurora, gosh what a lot your daughter has dealt with at such a young age- can only begin to imagine too what you have also been through.

    There is a lovely woman called Honey3 who posts less now though I think looks in from time to time. Her daughter also was treated for a very rare form of OVCA at a very young age... You may find something useful in her posts or in making contact with her even.

    My other thought (as someone else who had a mucinous tumour) is that as these are quite atypical in many ways it might be worth trying to find out who is currently regarded as having the expertise and even in seeking a second opinion. I think Petrolhead had a recent thread re the most up to date treatments etc for mucinous. You can search using the bar top right and there may be some benefit in tracking down where best to seek some specialist advice...

    Wishing you and your daughter hope & strength, Sx

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