My Ovacome
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Ovaries Removal

Hello Brave ladies. Hope things are better and you are all feeling as best as you can. Hoping that I can get some input and opinions . My mum was diagnosed with stage 3c serous ovarian cancer. She was 48 at the time, 2014. She underwent chemo and the surgery and more chemo after surgery. She was Ned for 1 year and then it came back with metastases to the liver and lungs. She currently having more chemo as they won't operate. no family history of an cancer just her. She did the genetic testing and she was negative so the oncologist just said she was unlucky. However I am still scared and was thinking of removing my ovaries. I am only 31 years and don't know the long term effect and also don't know if there is any point. Your opinions will be greatly appreciated. Thanks for reading.

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Hi Cilla-

I'm so sorry to hear about your mom. I too am in my 40's. My best advice to you is to speak to a genetic counselor. Perhaps have yourself tested for any genes to be absolutely sure you are not positive. Then speak to your mom's onc as well. This should arm you with any facts available specific to yourself and your mom's specific case to make your decision. Just make a decision based on facts and medical input, rather than pure emotion. Best of luck to you and your mom. ❤️❤️❤️

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Thank you. I will do just that. Wish you all the best too.

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I am sorry to hear about your mum. Hopefully, chemo will do it's job.

I would also venture to get a second opinion on surgery. Some of the ladies on this forum got second opinion (and even third opinions) for additional surgeries and some ladies got the surgery. It never hurts to have a couple sets of eyes look over the disease progression anyway, regardless if they all have the same conclusion.

I am in the same boat. My mom got diagnosed stage 3C (pathology confirmed 3B) at age 54; with no family history of any early-onset cancers. She is currently awaiting genetic testing (appointment is in early August) but our team thinks it will come back negative as well. Besides, only about 13% of individuals diagnosed with ovarian cancer are brca positive.

Do you currently have any gynea conditions that may increase your risk for ovarian cancer? Persistent cysts? Endometriosis? PCOS?

Typically, unless you have an issue or have germline mutation (BRCA) most doctors are hesitant to remove the ovaries until the women hit post-menopausal (so they do not need to take hormone supplements). Also, if you do go in for a consultation, I would also verify that the team would also take out your fallopian tubes (as some OC is now believe to start in the tubes).

I have PCOS as well as develop large ovarian cysts (that caused some to rupture); I am closely monitored by my gynea after my mom's diagnosis (every 6 months opposed to yearly), and will opt for a hysterectomy once I hit menopause (I'm only 24 now; but menopause runs early in my family).

Wishing you the best,

Kris x

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Hi Kris. Thanks for the reply. I've had several pelvic ultrasounds both private and NHS. Some results shows polycystic ovaries and others show no polycystic ovaries. my gp did a blood test for pcos and it was negative so I'm not sure. Can I ask how they are monitoring you. I've been paying for private ultrasound and blood test costing over £200 a year but I'm still not convinced if it will be caught early if it happens.

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I have PCOS as well as hypothyroidism; so my team works together (endocrinologist and gynae). I go to both twice a year, so I end up seeing one roughly every 3 months.

Endo often orders bloodtests (T3+T4, hormone levels (that are applicable in blood tests), and sugar panels). Occasionally, I will be given a saliva hormone test as monitoring (though birth control and metformin have brought my hormones into the normal range). I am also going to ask about having a ca125 test done, mostly for my moms reassurance, at my next visit.

On the gynae side, I am monitored primarily by pelvic examines and general period diary that I keep. I do not have natural periods ( before I got diagnosed, at 17, I had 4 periods in my life - first starting at 10), so I am regular with the aid of birth control (and occasionally add progesterone cream). My periods are typically identical to each other (both in duration, how heavy, cramping level, etc) so if anything changes, my gynae tends to be a bit more meticulous with her exam. She has been able to 'feel' something abnormal twice, and with an ultrasound (or was it a sonogram?) been able to confirm a 4 cm and a 5 cm cyst. Luckily, they went away on there own (typically been given progesterone cream to aid their removal) and didn't need to be drained. I did have a cyst rupture before (holy heck is that the most painful thing, I have experienced), but thankfully I haven't had that happen in 8 years.

For me, at least being pre-menopausal, the most important factor I have found as a 'link' towards by cysts is an abnormal period. I use an iPhone app called Period Tracker Lite to document my period and symptoms, which allows me to remember and give the info to my gynae.

Hope that helps,

Kris x

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Hi Cilla, I asked a question 2 days ago on here. Any ideas how I can get my three sisters to have their ovaries out? Its worth seeing my replies it might help.

I have 3c oc, my mum, aunty, cousin had oc & 2 of my cousin's had bc. So with a high risk in my family I want my three sisters to have theirs out but the don't think it can happen to them.

I would want to tell you to get them out but you are still young. My sister's are in their 50s & 60s so they don't need them now. Mine started in my left tube so if I had my ovaries out I don't think it would of made much difference.

I am BRAC negative but been told the chances of oc in my family is high so that's why I want my sister's to have them out.

What ever you decide to do lets us know in case we can help you in the future. Take care Cindyxx

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Thanks a lot Cindy. I'm sorry for your diagnosis. Ovarian cancer is a real beast and I hate it. I wish you all the best . I pray for a miracle for all you brave ladies. Stay well and blessed

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Hi Cella, I hope you are able to make the best choice.

If you decide not to have them out do make sure your GP knows your mum has oc & they need to keep a very close eye on you.

I thought they were keeping a good eye on me but after 5 years of oc symptoms I was shock that I had it. I kept telling the GPS about my history they never tested me for oc once. They didn't even knew what a ca 125 was.

Thank you for your sweet words. Take care Cindyxx

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Thank you ones again. I really appreciate you taking tins to reply. I've been paying privately for blood test and ultrasound since her diagnosis. Will keep the ovaries in for now. My Gp won't monitor me as there is no history of any type of cancer in the family . Wishing you long and healthy life. Take care

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Hi Cilla, I'm sorry your mum has had to deal with this and that you have had to support her through it, I'm most sorry she's had her recurrence and I do understand your worries for both her and yourself.

Have you asked why they won't do surgery? It may be that initially chemo is the best course of action with surgery as a back up if required, I'd ask for a second opinion and then you're both fully armed going forward.

As for you having your ovaries removed, my thoughts are that as your mum has been tested as negative for BRAC and that there is no family history of OC and that given you are still so very young they would be very loath to remove your ovaries as the ongoing health issues for you would not necessarily be positive UNLESS you too have had the BRAC test and shown to be at high risk. I know the risk is somewhat higher for you given your mums history but if you are healthy then I'd hang onto the ovaries for the present time but be fully armed with the knowledge you have so you can be more aware.

There was no history of any gynae cancer in my family at all, I was just unfortunate to be one of the teal army but I was fifty nine at diagnosis.

I hope your mum stays as well as she possibly can be, I hope you stay well and I hope you both find some answers to your questions. Take lots of care, big hugs to you both ❤️xx Jane

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Thank you Jane and thanks for your kind words. They won't do surgery because the consultant said the cant operate at so many different sites. it's back on her pelvic, liver and lungs. The weird thing is her ca125 was at 195 at diagnosis but has stayed at 3 after surgery at chemo. It is still 3 even after recurring disease to so many places. I don't know how they will monitor her now as she's not producing the tumour marker anymore. The only found her recurrent disease because her Gp referred her to the gastro doctor for tummy issues and they did a ct colonoscopy and found it. Her teamother didn't know as her ca125 was at 3 and still at 3 at present. Thank you so much. Stay well and wish you the best of luck.

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Hi Cilla18 - Could you speak to someone at your Mum's hospital for advice? Or perhaps use the support line at one of the OC charities for advice on what to do or who to approach for help?

For my daughters I had assumed that they would be listened to and taken seriously with any concerns in the future as they now have a family history of OC as I was diagnosed last year at 53. I would advise them also to contact my hospital for advice.

Andrea

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Thanks a lot. I will do just that. Wish you all the best. Stay well and stay blessed.

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