your thoughts welcome: Here's my update since... - My Ovacome

My Ovacome

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your thoughts welcome

Ova104 profile image
15 Replies

Here's my update since last posts and would love your thoughts....

Had TV ultrasound again nearly a month ago now with another gynae. She said that my cyst on left ovary is a complex cyst and she does not think it cancer at moment. She said it is 4/5 risk of becoming cancer in time. Advice remove left ovary, cyst and left fallopian tube laparoscopy. Back to consultant soon to discuss. This consultation at least gave me option of just one side!

The other consultation prior to that said they didn't know if malignant or benign at moment until it is taken out and they suggested removal both ovaries and both fallopian tubes. They were very radical.

The consultation before that also were suggesting bilateral salpingo-oophorectomy or left ovary removal. Were suggesting both in case it came to the other side!! Couldn't see point in getting rid of a perfectly good ovary on left..anyway found that all a bit drastic.

Cyst has grown a bit ovary 7cm..I do get pelvic pain and stomach flare ups but don't know if that is bad back, endometriosis or ibs which I was diagnosed with in the absence of finding nothing on a colonoscopy years ago. I also have a lot of stress.

As I am a carer of my mother I am thinking of doing watchful waiting. Would like to know if you think this is madness given your experience and my age probably makes me more at risk. I have high estrogen and 53. Periods stopped for 7 months and they started again after the tv ultrasound much to my dismay. Hope that was just stress related... My biggest fear is being left worse off and being not well trying to care for my mum. I recently lost one carer I had so it is just me now and not easy to get another one privately. I want to leave it privately as didn't have a good experience with my dad on the public system where he qualified for care with parkinson's...

Would love to know your thoughts..

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Ova104
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15 Replies
Ova104 profile image
Ova104

of course it hinges on the first one being right on the diagnosis...

Doggies221 profile image
Doggies221

I can see good reasons behind removing the ovary and fallopian tube that has the big cyst on it; removal of that is wise. But maybe removal of the other ovary and uterus is unnecessary? Don’t doctors think that there’s a reason the body has an ovary and a uterus? These are highly needed organs for hormonal, sexual and overall health well being. These are not useless organs. But removal of the ovary w the cyst would be very useful to diagnose it, I think. Good luck w your decision!

Ova104 profile image
Ova104 in reply to Doggies221

it shocked me because if I had not got another opinion and trusted him... he was basically saying menopause ovaries not needed... and HRT the solution and I might not have been a candidate anyway for HRT estrogen dominant still. The way it was he didn't answer half my questions.

bamboo89 profile image
bamboo89

Personally, I'd have it all removed, both ovaries and tubes and find out what they've removed in terms of cancer after they've checked out what they took out. I say this because I have terminal OC stage 4b, and it was found to be stage 4b after I had the debulking surgery (not just ovaries and tubes, a lot more) - too late to get rid of it in other words. And surgery at an early stage shouldn't be anywhere near as drastic as if you leave it till things develop, when it might be a 3 month recovery time. I had no obvious symptoms apart from digestive ones as you describe and was told 'irritable bowel syndrome' which, of course, it wasn't... Losing your ovaries at 53 isn't too bad, and its way, way better than waiting to see if cancer arrives, because if it does, you're stuck on the merry go round of treatment on and off for months/years to keep you alive, like me. But hindsight is a wonderful thing...

Ova104 profile image
Ova104 in reply to bamboo89

thanks for your advice very scared with the whole thing

bamboo89 profile image
bamboo89 in reply to Ova104

Yes, I understand the fear; actually I'd describe it as terror, that's what it felt like when I realised what the problem likely was and had to face the surgery, but most of us feel that fear... I just wanted to run away, I'd never had surgery of any kind, but there are situations you just can't run from because you take it with you... But I've lived to tell the tale, still here, and whatever you have may not be the worst. Good luck with it, ask questions or just vent on here if you need to..

.Miriam

Ova104 profile image
Ova104 in reply to bamboo89

I had a bad experience of medical profession with my Dad who is no longer here.. My fear is being left worse off and then being not able to mind my mum but is doing nothing an option either....

bamboo89 profile image
bamboo89 in reply to Ova104

Doing nothing is, of course, an option, but its absolutely not one I would advise, for it may lead somewhere much, much worse... .

Ova104 profile image
Ova104 in reply to bamboo89

these complex cysts apparently don't go away... unless someone had experience of one going away?

Ova104 profile image
Ova104 in reply to bamboo89

terror you said it. Terror of it being something and terror of being left worse off.. never had surgery well had my tonsils out as a child but that's it

bamboo89 profile image
bamboo89 in reply to Ova104

You are between a hard place and a rock, like we all are on here - you must face the terror of surgery, or live with the terror of possible cancer developing without surgery. Only you can decide which is worse...

IsaStarr profile image
IsaStarr

Before they opened me up to look inside, everyone thought it was just my right ovary that was impacted. The idea was to take a biopsy from this right ovary during the laparoscopy. After laparoscopy, they realized I am stage 3b. I had no symptoms other than heavy menstrual bleeds for 2 months. I am in my early 30s. It is horrible to have lost everything but if I could go back in time and remove everything in my 20s to avoid a 3b, all the chemos, heavy medication plan and the daily fear of recurrence I'd do it.

Ova104 profile image
Ova104 in reply to IsaStarr

did they say it was suspicious before surgery?

Mickie1409 profile image
Mickie1409

Sorry for th late reply all I can say is until they take it out and biopsy it then they will not know for sure if it's sinister I'm almost a year on from having cyst removal and everything out I'm so lucky as everything came back benign also they originally thought my cyst was 22 cm when they got her out she was 50 cm I would personally have it out and maybe have a few months of pain and discomfort then watch and wait I will also say I had vertical cut and the recovery and pain was not too bad x xxx you have to make the decision that is right for you xxxx

Ova104 profile image
Ova104 in reply to Mickie1409

That's no problem I am grateful for any responses hugely grateful. My CA125 has stayed stable, I am back again in 3 months for another tv ultrasound as my situation doesn't really suit at the moment for surgery. I don't have backup caring for my mum, carer is gone went somewhere else more hours so I am on the hunt. Does laparoscopy have a lot of side effects? Terrified of being left worse off caring for my mum. Omg 50cm. Are you ok now....? Hugs xxxx

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