Borderline Ovarian Tumour and Endo diagnosis.

[Hellohannah]

Hi all,

I’ve recently had some news that I will need to have a full hysterectomy due to a biopsy result from an ovarian cyst I had removed 6 weeks ago.

There is the option to keep one ovary for now.

I was very lucky to have been seen by a gynaecologist and surgeon at my first referral appointment at a NHS hospital. They said I needed keyhole surgery to remove a 10cm ish size cyst on my left ovary (suspected endometrioma) and also possible endometriosis. This was all determined by an internal ultrasound done 2 weeks prior. The day after my first appointment they booked me in for surgery in 1 months time. I had the surgery and everything seemed to go well. Very at ease with the surgeon (knew his stuff on keyhole/laparoscopy) and he said everything went well during the op. He said the cyst didn’t appear to be an endometrioma and he did removed something that could have been endometriosis but wasn’t entirely sure. All this was sent off to be tested.

I left feeling a lot better from loosing the cyst as my constant nausea was gone. I hadn’t heard anything from the hospital so assumed all was well. I did get a phone call from a gyny receptionist who booked me an appointment in 2 days time which I assumed was a post-op discharge. Unfortunately, it was not. I was wondering if anyone has any experiences with Borderline tumours? I’ve been told it’s not cancer but could possibly become a slow growing cancerous if left and that I do have endometriosis (no idea if this was all removed?) I have a daughter who is now clocking 12 nearly 13 who I had when I was very young. I’m 32 and the idea of not having more children although I don’t think I possible will in the near future is so saddening. I can’t weight up what is the best thing to do but being told its all got to come out eventually and/or being monitored is also just mind bending.

I really am struggling to make a decision on what is the best thing to do.

❤️

[Rainbow2468]

Hi i would nit be having a hysterectomy unless i absolutely had too. They say it isn't cancer, but it might become cancer. Lots of things can become cancer can't they 🤔 Sending you a big hug too x

[GreenViolin]

Hi Hannah. That must be difficult news to get. I've had cancer (lymphoma), and found it hard being told the chemo would much reduce my fertility and that there wasn't time to freeze any eggs because the cancer was so aggressive. I have no experience of borderline tumours though.

If they are able to monitor the situation for now, then don't feel pressured to rush into having surgery. Take some time to think about it. Maybe if they can keep monitoring and nothing changes, you won't have to have the surgery at all. Or maybe you'll decide you don't like the level of uncertainty that causes and that you do want to go ahead with hysterectomy. Either way, make sure you know which option feels like the best one for you as we're all different. I was offered hysterectomy for my last surgery (I have adenomyosis as well as endometriosis), which I declined and instead just had the endo removed. It didn't stop my pain, but I just didn't feel ready for a hysterectomy even though I know having children is not an option for me.

All the best. X

[PopcornPJ]

I realise this was posted several months ago - how did you get on? I’m in a similar situation, though older (no children) and weighing up my options though no matter how many extra tests I’m having (second opinion on histology, CT, MRI), the MDT recommendation remains the same.

[Hellohannah in reply to PopcornPJ]

Hi. This year has truly been a rollercoaster of emotions and experiences. One I’m happy to leave in 2024 but also I don’t think I’ve really dealt with what has happened to me long term, mentally and physically. I was sent to another hospital and treated by an oncology team there as although it is not classed as cancer - a hosptial in a city had a bette understanding of borderline tumours and it was an gynaecology oncologist who performed my surgery. Under her recommendation she would not consider a full hysterectomy right now at my age as it would have a life long impact on my bones, early menopause and a long time on HRT etc - unless they found anything worse from the pathology/washings. I had surgery end of September to removed one ovary and tube and that was sent off for testing. All has come back okay and the borderline cells just found in the ovary and due to the spillage when the cyst was removed all has come back normal there. So just follow up appointments every 6 months. Both for the endo and the borderline potential reoccurrence I’ve been told to be on some form of contraception and to seek advice if I want to change. My surgeon said that when I am ready to make the choice that I do not want anymore children and closer to the Menopause in age (and if there is no reoccurrence before then) they would recommend I have a full hysterectomy at some point x

[PopcornPJ in reply to Hellohannah]

Thanks for the update. I feel for you - it sure is a lot to take in, at any age, and I too found that information can be conflicting and leaning more toward/away from radical surgery depending on which doctor one gets to speak to. I wish you all the best! Here's to a happy and healthy new year.