Mucinous Borderline Tumour upstaged

[Montpell234]

Hi all

I hope someone can supply some information for me. I recently had a large cyst removed along with both ovaries. I was told it was a mucinous borderline tumour which had burst during removal. There were no abnormalities in the omentum after the biopsy but I have just recieved the hospital letter telling me that the Borderline has been 'upstaged to FIGO 1C1 ovarian cancer, due to breach of cyst during surgery.' Does this mean I now have ovarian cancer?? The surgeon explained I would need to have completion surgery along with removal of appendix. Help please!!

[Jennifer1959]

Hello - I am so sorry that you are experiencing this - its all just so scary, I know. The best person to ask is the surgeon or perhaps your GP - who can give you medical advice that perhaps we cannot answer on here. I am wondering when you were given the information about the borderline cyst? Was that before surgery or after.

They really scrutinise all of the tumour post surgery - to ensure that if it does contain any cells that are cancerous - that they make sure you get the right treatment. It sounds to me like they are being really thorough and doing a 'belts and braces' approach.

If you can, try and stay focussed on the fact that they are planning further treatment i.e. completion surgery. That if it is cancer - you are at Stage 1 - the best place to be with any cancer diagnosis (other than not getting the diagnosis of course).

I was diagnosed with MOC stage 1C (rupture prior to surgery). I had full surgery and as mine had ruptured prior to surgery - I had 6 rounds of chemo.

I am doing absolutely fine now - I am very active, swim regularly and am checked every 3 months.

It was a frightening time for me, but I did get through it all and you will too. Please come back if you have any questions or need more support - you will get lots of support here. x

[Montpell234 in reply to Jennifer1959]

Thank you so much for your reply. I was diagnosed with the Mucinous Borderline after surgery as there was nothing to indicate anything other than a completely benign cyst beforehand. I am waiting for a call back from the onco/gynae team so hopefully that will clarify things a little. It's just the thought of whatever was in my Borderline now swilling around inside that's worrying me. I'm so pleased your surgery and treatment was successful and that you are back to being so active. There is hope! x

[Bandung]

Hello, so sorry to know it. It does scary to have experience that. However, please get in touch, consult when you can with your surgeon or gynaecologist at the hospital where you had the surgery.

I had also Borderline cystsdenoma of ovary.

Cancer Staged: Staging form: Ovary, fallopian Tube, and Primary Peritoneal Carcinoma, FIGO Stage IC2.

My large cyst (25.20 cm) had burst, ruptured prior to the surgery. It was so painful for a while week prior my operation, I was taken to A & E local hospital and I was given morphine intravenous while I waited to be operated at another hospital: the royal marsden hospital.

I had midline laparotomy with radical hysterectomy, bilateral salpingo-oophorectomy, aspiration of ascities, frozen section, omental biopsy (Complete-cytroreduction).

I am really grateful that I am survived, my cyst was ±7 kg at least, which was removed with my both ovaries, 2 faloppy tubes, peritoneum, uterus, some bowel tissues, cervix and omentum.

I am still recovering at this moment with regular blood test for tumour markers, sometime CT scan & they found enlarge lymph node at may back, I have hypothyroidsm after that hysterectomy, low blood pressure sometime, but with gentle excercises, walks everyday, enough sleep, good food, ERT and have positive in mind/be happy, etc.. those all help a lot.

Don't be too panic, you've done well and you will be fine. I hope you get over quickly. Big hug and all the best for you. 💖🙏

[Montpell234 in reply to Bandung]

Thank you Bandung. So sorry to hear you had to go through so much pain and I wish you all the very best with your continuing recovery. It sounds like they are taking good care of you xx

[Bandung in reply to Montpell234]

And you too Montpell234 Thank you very much xx

[Doggies221 in reply to Bandung]

Hi Bandung, so sorry you had to go through this difficult experience. I hope you’re recovering well and getting back to normal. Your post piqued my interest bc I also developed hypothyroidism as a result of the surgery (I did not have it prior and develop immediately thereafter). Are you taking a thyroid hormone to treat it? Has the estrogen replacement therapy helped? Thank you for sharing! Wishing you the best in recovery ❤️‍🩹

[Fluffyjumper in reply to Doggies221]

Hi. I had a very similar situation to Bandung although my borderline cystdenoma didn’t burst. It was 42cm and weighted 12kg (about 30 pounds). I had a the same operation and have ongoing blood tests and an annual scan.

I had suspicions that there was something wrong with my thyroid before my surgery, but have also been diagnosed with hypothyroidism since then. I take levothyroxine and oestrogen gel.

[Bandung in reply to Doggies221]

Hi Doggies221, thank you for your nice message. I am not taking a thyroid hormone because my GP advices that my hypothyroidsm is still between low to medium range, so they check it every 6 months.The doctor gave me ERT which started from the lowest dose: Evorel25 patch..that's didn't effect me at all, and increased to Evorel50 also I couldn't feel any different with my fatigue, then I am taking Evorel75 patch at the moment which seems it helps my insomnia eventhough I still get tired so easily/fatigue since the major surgery/laparotomy.

Your welcome, happy to share. Thanks, wishing you the best too 😊.

[Doggies221 in reply to Bandung]

I’m so sorry you’re struggling w/ fatigue but that seems to be common w/ the surgical menopause and prob made worse by the hypothyroidism. You may want to consider adding testosterone to the ERT. It does help with energy. I hope you feel better soon ❤️‍🩹 .

[delia2]

Hi. It sounds from what you said that the type of tumor hasn’t changed (mucinous borderline), but they always raise the stage when the tumor bursts because stray cells could be floating around. But you really should discuss with your team.

[Montpell234]

Yes, good advice. I heard today I have an appointment on Thursday with the onco/gynae team, so hopefully I'll get some clarity. Many thanks to all for your supportive comments. It really helps x

[Lynne65]

I had a FIGO 1c 1 borderline mucinous Ovarian Cancer. I had total hysterectomy including ovaries, fallopian tubes, cervix, omentum and appendix. Also had carboplatin chemotherapy because malignant cells were found in the peritoneal washing. All very scary at the time as they did not know whether it was cancerous or not before the surgery but kept healthy and positive during my treatment. Now 7 years since NED ( no evidence of disease) scan and discharged from follow up. Healthy and all going well. Wishing all goes wel with your treatment. Sending hugs 🤗 Lynne