Undiagnosed, cancer or just a fibroid?

FormerMember over 4 years ago

14 replies
92 subscribers
4003 views

Hi all, I’m 46 and next Monday will be having a full hysterectomy and ovaries removal via open surgery. I was diagnosed with endometriosis 5 years ago and during the diagnosis they spotted a fibroid on my ultrasound which was 2cm, nothing unusual. A mirena coil was implanted to control the bleeding (it pretty much stopped it) and pain from the endo which seemed to work. Fast forward to this year and my coil was due to be replaced. I called my GP who started asking about symptoms, the pain was back, it had been for about a year but due to Covid I’d been putting off getting the coil replaced, and i was bleeding again, although still only lightly. Rather than just replacing the coil she sent me for a range of tests. All the bloods came back fine but the ultrasound showed that the fibroid had grown from 2cm to 8cm in 5 years, which is apparently fast growing. Emergency referral to Gynocology at St Mary’s. The consultant initially said, its just a fibroid but we’ll send you for a MRI to confirm but if its just a fibroid just get your coil replaced and it’ll be fine, no further treatment needed - happy days! The week after I had the MRI, and then got a call from the consultant who then said she was concerned that the scan showed a ‘malignant transformation’ and she now wanted to do a full hysterectomy - bit of a turn around!! She recommended i had the ovaries removed too to reduce any future risk of ovarian cancer, and given my age as I’m not far off natural menopause I thought if they’re going in anyway, might as well get it over and done with!

Thing is, I could be going through all this for nothing if it is just a fibroid. Consultant has said its a low chance it’ll be malignant (1 in 400 I think) but they won’t try a biopsy first as they might not get the right bit, so its a bit of a waiting game. I suppose either way the fibroid needs to come out if its growing that fast, but every time I hear oncology when i call the hospital, its a bit scary as I’m pretty much banking on it being ‘just a fibroid’. Just wondering if anyone has been through anything similar and has any words of advice?

FormerMember over 4 years ago in reply to Deborino

Hi everyone, thanks for all your best wishes. The surgery went well and I am out the other side. They let me come home yesterday (a little early) as I wasn’t sleeping well but i have to self isolate for 2 weeks so they can take me straight back in if needed. I had the best nights sleep last night that I’ve had in weeks, such a weight off my mind. I still don’t know the final outcome and wont for 3-4 weeks as they have sent everything (ovaries, tubes, womb and fibroid) to histology, so it’s a bit of a waiting game now. That said my consultant said she didn’t see anything unusual in there and they didn’t need to send any other biopsy’s so if it was cancerous is was likely contained. They said that my uterus was the size of a 16 week pregnancy, so its definitely better out than in. I had a bikini line incision which I’m pleased about as they were originally thinking I’d need a vertical one due to the size of the fibroid. But its a nice clean 8” line, and looks like it should heal really well.

Deb, good luck with your op on 29th. Couple of words of advice, take a small bag to the hospital, you wont be able to pick a bigger one up once your surgery’s done, and you won’t likely feel much like moving out of your gown for the first 24 hrs. They will make you get up and about as soon as possible though. I bought these great sleep bras from M&S and post surgery knickers which are really comfy and give that little extra support, I can send you links if needed. The worst thing for me has been bloating and wind, yesterday was worst but once i was in my own bed and i could lie on my side with a hot water bottle this subsided massively.

So far the surgical menopause doesn’t seem to have kicked in yet (fortunately) but if anyone has any words of advice as to how to manage the symptoms once they do arrive, please let me know. Consultant will discuss HRT with me at my follow up visit in a few weeks, but this is of course dependent on the outcome of the histology too.

Thanks for all your support ladies xx

Vicky

MrsBJH over 4 years ago in reply to FormerMember

Hi Vicky - great to hear that you're back home and all went well. I agree, the bloating, wind and constipation are dreadful but they'll pass (LOL one way or another - toilet humour again -sorry)

Hopefully some ladies will be along soon to share experiences regarding medically induced menopause. Mine was natural and I sailed through just suffering from hot flushes.

Take care and take it easy.

Sending gentle hugs, Barb xx

Womb cancer forum

Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

"Never lose hope. Storms make people stronger and never last forever” - Roy T Bennett

NannyAnny over 4 years ago in reply to FormerMember

Hi Tigpoo,

Glad it's over with for you.

My daughter had an induced menopause at age 39. She had breast cancer and was advised to have her ovaries removed to avoid any more trouble. The only thing I can remember is her having hot flushes. She threw open windows while we sat freezing!!! I had a natural menopause which started at age 47, but can remember the hot flushes and flooding when I stood up (you won't have that problem). I never knew if I was coming or going with periods until I was 53. Again, you won't have that!

Take it easy. xxxx

Deborino over 4 years ago in reply to FormerMember

Hi Vicky, I am so glad to hear from you. I'm also happy to hear that you're doing well after the op. I've got to self in isolate for two weeks before the op which is a pain as my family want to see me before I go in. I've never heard of post surgery knickers! I hope the hydrology is negative and you can resume your life.

Deb x

More from this forum

Undiagnosed, cancer or just a fibroid?