Suspicious ovarian cyst: Bilateral and salpingo-oophorectomy booked for Monday

[SandJ]

Hello everyone, I'm new here, and grateful for any support or suggestions. I went into A&E about 6 weeks ago with what I understood to be classic kidney stone pain. To cut a long story short they found a suspicious 5 cm cyst on my right ovary (and polyps on gallbladder). The ultrasound report is as follows:

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Small postmenopausal uterus containing 16mm intramural fibroid. The endometrium appears slightly thickened measuring 6mm. The left ovary cannot be identified.

Within the right adnexa, there is a complex cystic structure, which is difficult to measure on TVUSS but is at least 5cm. The cyst contains echogenic material, anechoic fluid and a thick septation. There is also vascularity demonstrated within. Adjacent, there is a tubular cystic structure, which could represent hydrosalpinx.

The gallbladder is post prandial and cannot assess wall thickness accurately - pt not informed about exam prep. Despite this, 5 echogenic structures can be seen which are non vascular and appear adhered to the GB wall; appearances suggest polyps, which measure 2-5mm. Suggest 6 month review of polyps to ensure no interval growth.

_______

I was fast tracked for a gynaecologist consultation and she suggested removal of both ovaries and fallopian tubes. My Serum CA 125 was level 7 ku/L and she said calculated risk of malignancy was low. I agreed to the removal of both ovaries, but failed to ask about hormonal consequences. I am post-menopausal, 57 years old and on BHRT.

I do have a couple of questions:

1. I've been on BHRT now for about 2 years. Is there any possibility the cyst could have been caused by HRT? (I'm on Estrogel and micronised progesterone).

2. As a post-menopausal woman will I experience any hormonal consequences of having this procedure? I will ask the consultant before the operation on Monday morning, I already asked my GP and she said as far as she knew there should be little consequence due to my age and being post-menopausal. I had hoped on reducing/stopping HRT, but I went through total hell with menopause and the thought of further issues here because of the operation worries me.

3. I have never had an operation in my life and it's all a bit stressful. Any tips much appreciated regarding this operation and post-recovery much appreciated. I also have M.E. /Chronic Fatigue Syndrome.

4. Some have suggested I re-think having the second (probably normal) ovary out.. thoughts?

thank you so much!

I'll also post this on the The Hysterectomy Association group.

[lesleysage]

Hello Sandj, I wonder of Anna, the support service manager at the Ovacome freephone helpline (0800 008 7054) maybe able to help with your questions? Could be worth a try. Best of luck, Lesley

[Lindaura]

Dear Sand,

I can’t help you with reading your scan, but that’s what the doctor is for.

It sounds complicated and mysterious and you really need help from your Oncologist and surgeon and, yes, perhaps support from the Ovacome helpline or the MacMillan charity.

As you are post-menopausal, playing it safe and having both ovaries removed is probably wise.

It should not make any difference hormone wise and you know what you have to deal with.

But HRT is a conflicting question. I chose not to have it and I still got Ovarian Cancer.

The fact that your CA-125 marker is low, is a very encouraging sign.

Meanwhile, I too was frightened about the operation, but if your surgeon is good, you will have very well controlled pain and you just have to take it VERY easy for a few months.

And especially immediately after the surgery, let yourself heal, don’t expect to be able to eat, or use the loo.

Have someone around to look out for you, including accompanying you to doctor appointments.

It’s good to have an advocate.

You are lucky to be fast tracked into treatment.

It’s now your job to have the necessary treatment, do your own research, too and let yourself heal.

Best wishes,

Laura

[SandJ in reply to Lindaura]

Laura, thank you so much.

[Decca4Ever]

My consultant told me that what happens to one ovary, tends to happen to the other. And since I no longer needed mine... I was told that I wouldn't notice the difference, because I was 72 and definitely post-menopausal, but I did have the odd hot flush and more facial hair, so I guess they must have been doing something. But nothing dramatic.

Can't help with your questions about HRT. I was on it for 10 years and my v large tumour was a Borderline, 'clinically benign'. No one has ever mentioned a connection.

Hope all goes well for you. It's early days yet in the diagnosis process, so I'd guess they'll be better able to answer your questions when the pathologist has done his job.

I hadn't had surgery since I was 5 and my tonsils were removed. It wasn't half as bad as I was expecting. Regular paracetamol and ibuprofen meant I was never in pain. The worst was trapped wind, because they inflate the abdomen to be able to see what they're doing. I think, if they are only removing your ovaries, your recovery time should be a lot shorter than if you were having a hysterectomy as well, even with ME/CFS. The hospital physios should be able to advise.

Good luck!

Sue

[SandJ in reply to Decca4Ever]

Thanks Sue, Much appreciated.

[Harrygirl]

Hi Sandj,

I also had a suspicious cyst and understand your concerns. My surgeon discussed with me 2 plans-If cyst was benign he would just remove my ovaries, but if cancer, he would do a total hysterectomy. I felt this was a sensible approach; I was also already post-menopausal.

Because my cyst ended up being cancer, I had a laparoscopic hysterectomy. The recovery was much easier than I anticipated; I think the main thing is to keep your pain under control and move as much as possible as soon as possible-this will help shift any trapped wind and make life more comfortable. Don’t overdue it though! I was reminded that even if the outside looks healed, the inside generally takes longer-follow your doctor ‘s instructions.

I’ve had a few more hot flashes, nothing drastic; it would be best to discuss with your surgeon or GYN regarding HRT.

They would also be the best people to answer questions regarding your scan results.

I wish you a quick recovery and all the best. Christine

[SandJ in reply to Harrygirl]

Thanks so much Christine

[Caroles1]

Take no notice of marykathy, we have reported her😳

If you get offered surgery, I would take it, as it will stop you going through what most of us have.

I would certainly speak to the Ovacome nurse, but my take on it would be that this is preventative surgery and is a good thing.

You will be surprised how quick you recover, take it easy and you will have lots of tips on here from the ladies if this is the path you choose,

Love Carole xx

[SandJ in reply to Caroles1]

Thanks so much Carole!

[SandJ]

An update: extraordinarily, even though I finally decided to say yes to both ovaries taken out the surgeon didn’t take either as both were just fine, no cyst at all! But fallopian tube twisted and filled with fluid so that was taken out and biopsy of uterus lining, but the surgeon said it looked fine. Possibly the tube got infected in my 20s when I had Pelvic Inflammatory Disease.

Apparently sometimes ultrasound can’t clearly see things, so possibly the swollen fallopian tube looked like a cyst, or maybe (he didn’t say this) all the stuff I’ve been doing cleared it (nettle tea by the gallons, meditation etc) But unfortunately I was still woozy from the anaesthetic when the surgeon told me and showed me the pictures - so I didn’t think to ask him about the detailed ultrasound report that seemed to definitely state a cyst with septation etc, and if this could have been mistaken for the fallopian tube.

It was very quick, driving home by noon. I felt so incredibly grateful when I woke up from the anaesthetic, even before hearing the news. Lovely nurses, everything just amazing. I feel like a sort of miracle has happened.

Now for lots of rest and have these awful anti-thrombosis tights on I can’t take off until tonight. I have three incisions, quite a bit of pain and a bit of a throat infection. but otherwise really good and happy.

[Decca4Ever]

Really good news! I felt on top of the world too when I came round after surgery. I think it's the fentanyl. Could do with some every morning.

My tumour was originally misdiagnosed as cancer by my local hospital. Fortunately, I was transferred to a big teaching hospital who took a more optimistic view and decided to operate without chemo first. They were right. It turned out to be a Borderline - 'clinically benign, cured by surgery'. I've been on a high ever since - and it was 4 years ago now!

So I know how you feel. Savour it!

Sue

[SandJ in reply to Decca4Ever]

Hah, yes to some Fentanyl every morning! And I'm so glad you had the experience you had, would have been just awful for you to have gone through chemo unnecessarily.

[SandJ]

I've just noticed something a bit odd - and wondering if it has something to do with the operation (they also did a biopsy of the uterus wall) - a raised, straight line of flesh between the anal canal and the opening to my vagina - it's not a single bump but almost like raised scar tissue, but it's not that. It's not itchy or anything. I'll ring the practice team tomorrow but just wondering if anyone here knows if this could have something to do with the procedure...