Borderline mucinous tumour 1a

[Marypositive888]

Hello I have just been diagnosed with a borderline mucinous tumour of the right ovary stage 1a after surgery. I don't really understand what this means as the letter came and I haven't seen my consultant yet. Has anyone else had this?

[Mrs_Atko]

I was diagnosed with the very same this time last year. 1a means it's 'contained' to that ovary,so fingers crossed you won't need any further treatment (not sure if you had your ovary removed?). I ended up having 2 operations, the first to remove the tumour (they managed to 'save' my ovary) but then the histology came back as borderline mucinous and I had to have another op to remove the offending ovary plus Fallopian tube and appendix. It's a bit rubbish you've just had a letter but hopefully you don't have to wait long until you see your consultant? You should then be followed up regularly for a number of years. I'm not sure how old you are but if you are done with your family planning then they often suggest a full hysterectomy. Search 'mucinous' on here & you'll find the other threads you might find useful. We're a lovely bunch here so welcome and don't hesitate to reach out to Ovacome as well x

[Marypositive888 in reply to Mrs_Atko]

Hi Mrs Atko

Thanks for your lovely reply. It really helped me as I am in complete shock at the whole thing. It was a huge mass and I just found it when I had a pain in my right abdomen and lay on my back on my bed and felt a huge lump in my abdomen. I went straight to the doctors and before I know it I have had surgery and this diagnosis. They didn't take out my appendix which is now worrying me. Did they say why they took out yours?

[Mrs_Atko in reply to Marypositive888]

Hi Mary, sorry for the delay in replying (I've been travelling) I had my appendix removed during the second op as often mucinous tumours can originate from there. They also went through my abdominal cavity taking biopsies and 'washings' in order to stage me. I was lucky to be staged 1a and so needed no further treatment (& due to my age, was offered fertility sparing surgery rather than full hysterectomy). I am regularly monitored (in fact I have a scan and an appointment with my Onc in a few weeks) which certainly helps my peace of mind. My Onc won't do blood tests (CA125 or others) as they weren't a good indicator for me although I think I would rather have the lot just to be sure. I found the best way to ease some of my concerns (other than chatting to the lovely ladies here) was to write everything down so when I sat down with my Onc I could go through them one-by-one. Jemima xx

[Marypositive888 in reply to Mrs_Atko]

Hi again

I am trying to sort out health insurance for a holiday. Not sure what to say in the health declaration bit. My surgeon said the borderline tumour has been removed and I will be monitored but no further treatment required. Please can you advise how I need to communicate that on the health insurance form to get cover?

[Mrs_Atko in reply to Marypositive888]

Hey - it's a tricky one. Your best bet is to call your insurance company and chat through with them the details. Borderlines can often be treated differently depending on which company you use. There are a number of older threads on here about best travel insurers for folk with OC (borderline or otherwise). I am still with AVIVA for mine but have anything related to my borderline excluded (for now) despite not having ongoing treatment. If anything changed in the future and i felt that i wanted it all included, i'd go with one of the suggestions from some of the ladies on here with a more specialist insurer and pay extra to have it all covered. Depends on your own personal opinion. Best to speak to the underwriters themselves if you can. Good luck!

[Kaylajane]

Morning! Last April I was diagnosed with a borderline muscinous cystadenocarcinoma stage 1a. Resulted in me having my ovary removed and now I have to have ca125 and scans done every 6 months for the next five years. It took me a really long time to understand and I ended up meeting with my consultant and I recorded it all because it was so much to take in. It's not a full on malignancy, but it is not benign. It is a very slow growing kind of malignancy I suppose. It's not invasive. Not treated with things like chemotherapy. My treatment was removal of the ovary and a care plan for five years

What Are Borderline Ovarian Tumors?

Borderline ovarian tumors are tumors that have a tendency to become malignant with other ovarian tumors that are as yet in the primary stages of malignancy. These kinds of tumors are epithelial tumors that build up and grow on the ovaries . A biopsy is generally carried out on them after being surgically removed. Treatment is carried out in accordance with the findings.

These particular tumors have been seen to have an effect on many women since the late 1920’s, but, they were called semi malignant tumors back then. This name primarily helped distinguish these from other tumors that were considered to be malignant or were benign. The term was transformed in the 1970’s when the doctors began terming tumors as either benign , borderline or malignant. Of all the ovarian tumors that are clinically diagnosed each and every year, just about 15% of them end up being epithelial tumors. Although these particular tumors can develop in women of any age, childbearing women are more prone to develop them. Seeing that borderline ovarian tumors spread at an extremely slow rate, they are generally discovered in routine medical checks prior to them progessing to an extremely serious stage of malignancy. It is normal for these to be bound within the ovary when they are discovered . For this reason, there is an excellent survival rate amongst women who are identified as having this type of tumor.

Identifying these particular ovarian tumors is quite difficult since their symptoms do not come about in the early stages and women sometimes do not have any symptoms at all. As the tumor starts growing , women start complaining about abdominal pain and an unexplainable girth increase round the waist and abdomen. They may well have abdominal distention and even an abdominal mass , despite the fact that one quarter of women clinically diagnosed are asymptomatic . The healthcare community has yet to verify the causes of these kinds of tumors, yet some think they may be associated to age of first menstruation, age of first conception, age of first delivery, smoking, oral contraceptives, menstrual history together with family history of ovarian cancer . There are two main subtypes of these forms of ovarian tumors. The most typically diagnosed ones are Serous tumors, that are thought to arise from the tissue lining of the ovary. Nonetheless, the roots of Mucinous tumors are unidentified. Basic research reveals that specific kinds of tumors are indubitably linked to the appendix.

Medical treatment for borderline ovarian tumors is typically carried out by surgical removal of the tumor . The tumor is then forwarded for biopsy to find out if cancer cells have spread causing a risk to neighboring tissue as well as organs.

Sometimes the patient needs to go through some chemotherapy and/or radiation therapy for safety together with precautionary measures. Although the operational removal of these types of tumors is rather debatable when it comes to childbearing women , no other treatment at the moment has been found to have optimistic results . The sole contraindication of surgical treatment arises in the event that an individual faces far more danger from the surgery because of other medical conditions or in the event that the sufferer does not wish to undergo surgery. Other cases are treated by surgical removal. The results of surgical treatment are quite beneficial and a lot of women are cured.

[Crystalee]

I'm sorry to hear, may I ask how did they diagnose this, was it through a lap or just an ultrasound and what symptoms have you had?

[Marypositive888 in reply to Crystalee]

Hi Crystalee

I had a pain in my right side and when I lay on my back I felt a big mass. Next day I went to the doctors and they sent me for an urgent ultrasound. The ultrasound confirmed it was on my right ovary and was very large and looked malignant. At that point my world came crashing down. They were a bit confused when my CA 125 came back 27 as they were expecting it to be high.

The CT scan confirmed it was a big mass and I was advised to have surgery asap. I was told it was stage 1a borderline mucinous after surgery.

Hope this helps

[Sunfleury-UK in reply to Marypositive888]

Ca125 is often false negative with mucinous tumours...

[jmackmom]

Kaylajane explained it well. I would only add that you will now find out what "grade" the actual cells were and that will determine the treatment suggestions. I had the very same thing but the plan was to remove the cyst (in my case it was all contained in a cyst) and biopsy. If and when things came back positive for cancer, a 'debulking' procedure was done. I'm 66 so I had a total hysterectomy, appendix, omentum (sheet that holds fat cells in place), lymph nodes removal and an abdominal washing. All that came back negative but of the cells in the tumor in the cyst, I had grade 3 cells in 60%. They are aggressive and invasive so they referred me for chemo. DO SOME research. I opted for carboplatin only which still has serious side effects but is not as toxic and extreme as the combo with taxol. I was told that doing the chemo was my chance for a cure. If your cells are grade 1 or maybe even 2 they will likely suggest and watch and wait. I'm a year after chemo. All my scans, at first 3 months and then 6, now once a year, and bloodwork have always been clear. Keep us posted.

[Sunfleury-UK]

Hi so sorry you've received this news by post, its really difficult to get your head round.

I had a 'cyst' removed nearly 5 years ago which was found by chance during an IVF scan (like yours it was pretty large) which histology found had borderline mucinous cells. As the op was done by a Gyny consultant I was then referred to Gyny Oncology team. As the capsule burst during the op, I was staged 1C. I met the Gyny Oncology Team and had the chance to have a long talk with both the consultant and CNS (Clinical Nurse Specialist). Due to my age and situation, there were possible options with regards to fertility sparing surgery. We were also referred to a link Fertility Consultant.

The Gyny-Oncology Team carried out a number of tests including both CT and MRI scans as well as having the histology re-tested by a specialist team.

The vast majority of Mucinous Borderline tumours are just that and the description above of what they are (& not) is really good. I understand there is a good Facebook group for women with Borderline tumours. Ovacome also have a good factsheet on their website.

Mine though was one of a small percentage that have both borderline and invasive cells so was reclassed as Mucinous grade 1 following the retesting.

I had a second operation to confirm the grading which involved removal of the appendix, ommentum etc- this is to check that the cells had not migrated. Due to my individual presentation and because I was staged 1C, I had a full hysterectomy and then Carboplatin Chemo.

Its really difficult to get your head around all of the different terminology- Target Ovarian Cancer have an excellent booklet called 'What Next?' which you can order as a paper copy or download from their website. There is also great guide for younger women from Target , Ovacome and the other charities and these charities also have nurse-led helplines which are a great source of advice and support.

Hopefully you'll have an appointment through soon- do write down any questions.

Best wishes, Sx

PS I have been NED (no evidence of disease since!)

[Christie22]

I can't believe you received this in the post before consultation I am waiting for my results ...Must have been a bit of a shock I ve had my ovaries Fallopian tubes and cystic mass already removed . What was your surgery . How long is it since your surgery ?

The ladies on here are amazing it's so lovely to find support love and help this way x

[Marypositive888 in reply to Christie22]

Hi Christie22

I had my operation nearly 3 weeks ago. It has all been a complete shock as even the week I found the lump I was going to spinning classes, gardening for hours and feeling great. This group has been so helpful and has helped to keep me sane! My surgery involved hysterectomy with removal of cervix, uterus, Fallopian tubes, both ovaries and omentum. Just glad it has all gone and keeping my fingers crossed for the future

Best wishes

M x

[Marieloiuse]

Hi everyone,

Having just found this website and having had the shocking diagnosis of ovarian cancer in 1988 when I was 34 I just want to say that I am still here and fighting fit. Mine was a stage1 mucinous cystadenacarcinoma which had reached quite large proportions (18 x15 x13cm) in a short space of time. I too, had what seems to be the standard treatment of total hysterectomy (ovaries, uterus etc) and removal of the omentum (which I didn't know I had!). Can't remember if my appendix was removed or not. Also, I had no further treatment ( I have since learned that chemo and radiotherapy aren't necessarily effective with these tumours but no-one told me that at the time and much as I didn't want it I wondered why I wasn't offered these). I feel I spent too many unnecessary years worrying about a recurrence before I saw a lovely doctor at the Christie some 6 years later who said it was highly unlikely and that my prognosis was excellent.

Like you, Marypositive, my tumour was only evident when I was on my back and that was the main symptom and needing to pee a lot.

It is only fairly recently that I have found information relating to this particular type of tumour and I must say it would have helped so much in the intervening years to hear that a recurrence was very unlikely. I think at the time the medics I dealt with didn't know enough about this rare type of tumour. Thank goodness things have moved on and there is so much more information out there (as scary as it is to search sometimes) as well as the great support agencies.

I see Christie and Marypositive that you have both had your operations but to anyone else at the pre surgery stage I would say to explore the options, if possible, particularly if you haven't had children but hope to have them in the future.

I wish you both all the best.

[Marypositive888 in reply to Marieloiuse]

Thank you MarieLouise for your uplifting message. It is so good to hear that.

Best wishes

M x

[Marieloiuse in reply to Marypositive888]

Hi Mary,

Hope all is going well after your operation; your diagnosis and op sound identical to mine and, as I've mentioned, all that (for me) was nearly 30 years ago. Like I was at the time, I imagine you are not only having to deal with the aftermath of sudden major surgery but also the shock of the diagnosis. I hope that I can be of reassurance that a long term cure in cases like ours is highly likely. If I'd known this at the time I think I would have been able to take more advantage of my convalescence (i.e being spoil rotten!) instead of of which I was consumed with worry about how long I had left and leaving behind 2 little boys.

Wishing you all the best in your recovery.

Catherine. X

[Marypositive888]

Hi ladies thank you for all your messages of support - I am nearly 4 weeks post surgery and feeling much better. I am trying to sort out a travel insurance policy so I can go on a holiday to the US. I don't know what to put in the health conditions section - my surgeon said the borderline tumour has all been removed with no further treatment but regular check ups. What do I write on the policy quote forms? Any guidance would be appreciated!

Best wishes

Mary x

[PetaW]

Hi,

I had a TAH, bilateral salipingo, oopheraectomg and omnentectomy (think I've spelt it all properly!) In 2013

Turned out I had mucinous borderline ovarian tumour. But it wasn't graded. The specialist later said he should have removed my appendix. So am a bit concerned that he didn't.

Has anyone got any info on the importance of removing the appendix?

I have also been getting pain in my lower right abdomen which comes and goes. This seems to be over a few weeks at a time. Then the pain goes. I've had an abdominal and interal ultrasound which didn't show anything up. However the lady performing the scan said it wouldn't really show anything relevant and I should probably have a CT scan. My gp just looked at me with a vacant stare!

Has anyone else had similar intermittent abdominal pain and any thoughts on what I should do?

Thanks 😊

[enam]

First you have to do is breath, take a deap breath. And relax. Im not mucinous, Iam serous plus micropapilary (it means worse than your dg) but also 1a.

Just had op Oct 2016, no chemo, still ok, 6months ch ks up.

First post op days were horrible (evan op passed very good, done by gynonc) so many fears, I expected to die in few months.

Wish you all the happines, be sure the worst part is already finished.