Does anyone have info on Mucinous cystadenoma?

[Mazzie]

I had a TAH with both ovaries taken in July for an Ovarian Cyst which was growing steadily and was 9cm at time of op. I have just found out it was in fact a Mucinous Cystadenoma, I have tried to get my consultant to confirm what this, as I am Post Menopausal, but she so far has not contacted me as promised to explain. The consultant who told me it was a tumour, said it was still benign but changing .. should I be concerned for the future? Maz

[charlie12]

Hi there Mazzie

Welcome and really sorry to head about what happened. How dreadful that you have only just found out ....this is appalling.

I had a similar experience and similar diagnosis and it was very concern.

The 16cm mass I had removed I was told was part benign mucinous cysyademona i.e. what the real world considers a cyst. It was also part borderline mucinous cystadenoma, which may be what you have had taken out. This is considered to be a form of ovarian cancer that is not (yet) invasive. The gold standard treatment is the full surgery which we both had. I have been told that the probability of it returning is less than 5%. If it returns the treatment is surgical. Chemo or radio therapy is not effective or necessary.Very little is known about these tumours , but my consultant says that she has never seen a recurrence. Also the word tumour and cyst are interchangeable , again this is something I found out long aftrwards.

Have you got over the operation OK ?

Keep ringing your consultant 'till she gets back to you. Also , ask for a copy of your pathology report.

Take care.

Charlie xxx

[Mazzie in reply to charlie12]

Thanks for your comments Charlie, yes I had a very good recovery from the op, and have to say feel really well for the first time in around 3yrs. I also have an under active thyroid, which I questioned one lovely gynaecologist about at the Hospital last year, as to whether there was a connection with the growth rate of Ovarian Cysts and he confirmed there indeed was, and was surprised I made the connection ......... my own gynaecologist was quite annoyed with me when I mentioned it to her, and said I was mistaken ............ she also put off doing the op for around a year although she said I needed it done, but that my cyst would never be life threatening and would not continue to grow ... she has since not provided a written copy of the path.rpt when I requested it through her secretary, her secretary got back to me and said would I accept a telephone call from the consultant instead of a copy of the rpt, but has so far not phoned!!!!!,but did fax a copy to my GP, who has since written to explain the findings

I've made an apt to see next week. Luckily, when I had my apt in June I saw another gynae, had the ultrasound & internal scans as usual, and

he then fast tracked me for the op, having gone and had a 'showdown' with her. I feel very, very lucky!! I am now going to write to my actual consultant and demand a copy of the rpt. I was having having regular CA125's and scans over the three year period up to my op, but it has not been suggested that I continue the blood tests. I will ask my GP about this next week ............. Thankyou so much again for replying.

Mazzie x

[Heffmeister]

Yes I also had a mucinous tumor/cyst in 2010 aged 32. They tend to grow large quite quickly. Mine was football sized and ruptured before surgery. It was classified as borderline and I had a total hysterectomy yet I am one of the unlucky ones wo has a reoccurence and as full blown invasive disease. I had more surgery and am now on chemo. Make sure you are followed up every 3 months and have a ca-125 ever 3 months too. Let your doctor know straight away if you have any worries with new symptoms.

Wishing you all the best. Ask if you have any more questions. Mucinous tumors are quite rare about 5% og ovca I believe so many people are around.

[sunny1 in reply to Heffmeister]

Hi, how did you know it had ruptured? I havent had any pain with my lump yet today and last night its painful.

K x

[Mazzie]

Thankyou so much for replying, I'm sorry to hear of your reocurrence, and also that you had the rupture prior to surgery. It must be an awful time for you. I will ask my GP for follow up CA125's .......... I was having them regularly along with the scans for three years, and the cyst just suddenly started to grow, which I believe is also connected to having an underactive thyroid .

Best wishes for your successful treatment and recovery. Mazzie x

[charlie12]

Hi Mazzie

Glad to help and good to hear that you have an appointment next week.

You really need top agree a management plan with you doctor, to include a full de-brief of the surgical findings , prognosis etc etc. The follow up regime , if any , also need to be agreed. I was told one annual gynae check, plus imaging plus CA125. I had to negotiate to be seen more often and now 2 years on am on 6 monthly checks.

I found that because this was found in surgery and not before that my consultant tends to down play its significance. Try to bring somebody with you and write down any questions you have.The NICE guidance on ovarian cancer diagnosis ( from their website) also covers borderline tumours, if that is indeed what you had. This will give you an idea of the care to which you are entitled and which your consultant is paid to deliver!

The main thing is that you feel well and that you recovered well.

Take care

Charlie xxx

[Mazzie in reply to charlie12]

Thanks again Charlie, I will certainly ask all the necessary questions, and feel more in control having spoken to you. Take Care, Mazzie xx

[Missyl]

Hi Charlie12!

I feel so lucky to have ran across your paragraph. I feel my story mirrors yours completely! I have a question for you...I had a tumor removed from the left ovary a year ago which was larger than a football. It ruptured during surgery. It was a mucinous borderline tumor, intestinal type. They went back in and they took the uterus, cervix, other ovary, omentum, appendix and did several biopsies. Now for a couple of months (I've been brushing it off), I've been having pressure in my abdomen again. Not like before when it was so much pressure as a baby but pressure when I suck in my gut or push in on my belly button area. My question is... How did you know you had a re accurance?

[DewsReign in reply to Missyl]

How are you doing Missyl? I am in a similar situation. Age 41, had a mucinous borderline cyst rupture during surgery 2 months ago. Now it seems to have seeded in my peritonium. Hope to have everything out and cleared away soon.

[charlie12 in reply to DewsReign]

Hi Dewsreign

So sorry that you are going through this. Has a scan shown up some seeding ?

The nurses on Ovacome are very helpful for a discussion with an experienced independent opinion.

Otherwise keep badgering your consultant.

Hope all goes wel xxxx

[DewsReign in reply to charlie12]

Yes the scan showed some seeding on the bottom of my liver. Very tiny, and everywhere else just looked shiny. I am hoping to get a consultation in San Diego this Fri.

[charlie12 in reply to Missyl]

Hi there Missyl

As far as I am aware I haven't had a recurrence, seven years on. However the ladies on here who have had recurrences have reported significant symptoms and or raised ca125. Some have had various lumps found during check ups , but most seem to have felt something.

Sorry I didn't see your question till now....how nothing has recurred.

Live n hugs xxx

[withane]

For you ladies your in luck, you have the perfect reason to keep ypur organs.What is happening in F is if your post menopausal these drs. have no mercy.They will put you through dozens of tests & then say, it doesn't matter anyway.Malignent, benign they are taking yor organs & if you don't like it then die.Carrying a mucinous cystadenoma for 2 yrs.