It began May 2021, rushed in to hospital with severe pain. Diagnosed with a simple (benign) cyst on left ovary , put on emergency waiting list for operation for keyhole surgery of both ovaries to cut risk of further cysts due to my cancer history ( survived non-Hodgkin lymphoma 11 years ago)
No scans for 18 months…Planned op in Dec cancelled as I had chest infection.
Moved to Feb 17th - given two sets of ultrasounds prior to op date, as first in Jan showed “changes”, op cancelled!?!
Rushed in with severe excruciating pain on 12th Feb. Fobbed me off for an op til I complained.. I was literally screaming in pain . A Russian surgeon came on duty on the 15th, and cut through the nonsense of other doctors, and operated on 16th,, said the pineapple size cyst had nodules so went for biopsy etc . She removed that cyst, the ovary and fallopian tube.
Yesterday I was asked to go in today to meet her. Pathology results were back.
Been diagnosed with ovarian serous borderline tumour, with surface involvement and occasional o mental surface epithelial implants. Stage 3A.
Going to have full hysterectomy including cervix, and the peritoneum at front of bowel to prevent it “seeding”…. she thinks that the surgery will be enough and it’s hopeful I won’t need chemo etc..
(I’m 52 and have three adult daughters and have had some menopause already due to chemically induced from stem cell transplant)
Thanks for reading, I’m obviously a bit shell shocked!
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Atai
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So good that you finally received the treat/surgery you needed. It sounds as if you have someone who is ensuring that you will get the right treatment going forward. Have you been referred to an oncologist.? They will discuss with you a treatment plan. Don’t be afraid to ask lots of questions and take someone with you. There is lots of advice and support on here and the Ovacome helpline is excellent. Lots of luck to you Di xxxx
Yes, I’ll be with an oncology team now, and a support nurse will be calling me today. It’s reminding me of my experience 10/11 years ago; floods of information and emotion!
The consultant who performed my surgery and who I met again yesterday is fantastic, we definitely need more like her!
Let’s see what the multi-disciplinary meeting comes up with next week…
I agree with Skyeplus about contacting the Ovacome support team (freephone 0800 008 7054) and you also may find a recent webinar they arranged for us at the end of January this year informative and helpful:-
Clinical Series: Professor Mona El-Bahrawy – What are borderline ovarian tumours?’ on Tuesday 31 January. A recording of the session, which was just under one hour, can be accessed here: youtu.be/RszZxYusokU
Going to the Ovacome website (ovacome.org.uk) will give access to this, and many other webinar recordings and information leaflets.
Update: I have now been given support from the oncology nurses. One called yesterday to give me a timeline, which I find useful. So it’s CT scan , then a MDT meeting, and CT will be within two weeks. Then the meeting is the first Wednesday following the CT, where we find out which hospital (likely to be the Heath in Cardiff) and a date for surgery. Within three weeks if that the results of samples will be back and then find out if all clear or if any treatment is required.
She also said the surgeon was quite shocked at what they had found during my recent surgery.
If only my original consultant had bothered sending me for regular scans last year, maybe none of us would be needing to be shocked this month!
Just keep asking questions (I used to go with a list of them or even email to the consultant ahead of my appointment!) Our daughter is a respiratory consultant (so, everything above the diagphragm and not below it!!) and she is adamant that "all the 'best' patients ask questions and maybe consider second opinions because they are engaging with their disease"...that makes it easier for her/ the clinician to be honest, innovative and really feel their learning and hard work is being well used.
hi. I’m so glad you’ve had a surgeon take the situation seriously. I was diagnosed with supposed bilateral ovarian cysts in early 2019 (age 60). NHS said I could avoid surgery and just have follow up checks. Went privately and gynae-oncologist said he was concerned about supposed cysts in a woman of my age (post menopausal) so recommended a bilateral saplingo-oophorectomy (I’d had a hysterectomy in about 2005). So April 2019 I had that surgery and thought that was it although surgeon did say he didn’t like the look of the “cysts”. I was totally taken by surprise at my post op a couple of weeks later to be told they were borderline serous ovarian tumours stage 3C (some seedlings on my peritoneum as well as the tumours). So in June 2019 i had “completion “ surgery removing my appendix, omentum, resection of peritoneum and scraping of bowel. The surgeons were very confident they’d got absolutely everything and I had nothing to worry about. I did think about it quite a lot for a year or so but now I rarely think about it and when I do it’s to thank my lucky stars that a diligent radiologist scanning me for something else spotted the lesion on my ovary.
In the world of ovarian cancer those of us who had BOTs are the lucky ones imo.
Carol, I am so relieved to hear you had risks removed, but equally angry about the nonchalant attitude which certain consultants have about our health!
I ended up at my local hospital yesterday, all afternoon!
After the morning CT , I wet home… had a call an hour or so later, saying I needed to go in as they’ve found a pulmonary embolism on my lung and it needs treating!!
I had an ECG, and blood tests..
Doctors were happy with my ECG etc, and I have to take Apixaban (blood thinners) tablets for 6 weeks/long term, and the Gynae team will discuss anything else if necessary, after Wednesday.
I am happy it’s treatable and hope it’s not related to my Gynae stuff…. Though frankly, I’m completely fed up!!!
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