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[Whatisforteamum]

Hi everyone I've just undergone a few tests and ultrasound as I had bloating,bleeding and constipation.I was concerned as

My mum had stage 4 primary peritoneal cancer yrs ago treated as ovarian.

She knew it would return and had debulking and chemotherapy the second time.

Brca tested which was negative.

I was told by the person who did the ultrasound I have a cyst which they will monitor as I'm post menopausal.

Every 4 months in the hope it doesn't grow.

GP follow up in 3 weeks which I assume means a good ca125 test.

Would they remove it due to my family history? Anyone else had this.

My dad had cancer too.

[SuffolkJen]

Hi Whatisforteamum

I had a one off post menopausal bleed which lead to tv scan which showed a mass on right ovary. CA125 was 76.

After MRI & CT scans it was thought to be a fibroid but because I’d lost my own mum to OC 12 years previously it was suggested best course of action was to have a bilateral salpingo oophrectomy and a total hysterectomy. I chose to have open surgery too.

After my op, pathology came back that I had stage 1a clear cell OC.

I was then tested for BRCA because of the family history but this came back negative.

All I can say is I’m soo glad I had surgery as only pathology truly tells the full picture.

I don’t want to frighten you but as you’ve lived this disease with your mum I hope you understand how silent OC can be.

I wish you all the best xx Jen

[Whatisforteamum in reply to SuffolkJen]

Thank you so much.No you are not frightening me.

I want to limit my chances of ovarian cancer as we have several people on mum's side who've had it and Dad died of cancer.

I agree about the silence as Mum wasn't diagnosed until her ca125 was 9000 and she has acites in her lungs and abdomen.

(She had her suspicions it was cancer but stage 4 was a Shock.)

I'm so pleased they operated on you and you could receive treatment .

I will question the GP when I speak to him in October and see if I need a referral.

Take care

xx

[Rosefence]

have you thought about removing ovaries? I assume you have. My mum has HGSOC (and we have also other cancers in the family) and I will certainly have ovaries removed once I don’t need them anymore. The risk is just too high - even if there is no obvious genetic element the doctor told us we have still a much higher chance of also getting OC.

[Whatisforteamum]

Yes I was prepared to have the op Angelina Jolie had if mum was brca positive.No one has spoken to me or my siblings at all as mum just said she didn't carry the gene.

My understanding is I'm more at risk anyway.

Her cancer originated in the peritoneal cavity so I need to find out if having everything removed will reduce my chances..

[Whatisforteamum]

I meant to say several relatives with cancer and Mum's ovarian,primary peritoneal.

[Jholly4 in reply to Whatisforteamum]

The guidelines on genetic testing changed this year so you can request testing as you have a first line relative with ovarian cancer so ask your gynae team or GP to refer.

[SopSinger]

Definitely push for further investigation. You should be referred to genetics and if your family history includes bowel and/or womb cancer you should be tested for Lynch syndrome as well as BRCA. Hope you get some answers soon. Keep us posted!

[Django123]

Researchers are beginning to think that both serous OC and peritoneal cancer usually start in the fallopian tubes, so you might want to ask about having those removed if you're not planning to have children.

[Whatisforteamum]

Thank you both.No more children as I went through menopause hence the 4 monthly check ups on the cyst.

I had heard about the cancers starting in the fallopian tubes.

I will keep on at them until I get answers.🙂

[Jholly4]

A friend of mine had a cyst found after supporting me through my cancer treatment and she was anxious understandably that it was left with monitoring. I copied this info off the Royal College of gynae guideline on cysts in post menopausal women which she found helpful. If your cyst is simple ( not deemed solid) nor multiple sections in structure ( unilocular) and on only one ovary ( unilateral) this was the advice to her.

Asymptomatic, simple, unilateral, unilocular ovarian cysts, less than 5 cm in diameter, have a low risk

of malignancy. In the presence of normal serum CA125 levels, these cysts can be managed

conservatively, with a repeat evaluation in 4–6 months. Itis reasonable to discharge these women from

follow-up after 1 year if the cyst remains unchanged or reduces in size, with normal CA125, taking into

consideration a woman’s wishes and surgical fitness

Hope that reassures you your team are managing it appropriately. Of it doesn't fit this them worth discussing with them for reassurance on their reasoning behind decision.

[Whatisforteamum]

Thank you very much for this information.It's really only Mums history that will have me double checking everything.Asking the relevant questions.

She had lots of chemotherapy and surgery.

It was heartbreaking to watch.

[Sheena13]

I’m in a similar situation but I had breast cancer 20yrs ago too, relative Aldo died of breast & ovarian cancer diagnosed too late. I’ve spoken to my GP and he’s referred me back to my oncologist as the risk is so much higher with my history. I’d speak to your GP see if he’s willing to do the same for you. My BRCA was also negative.

[Whatisforteamum]

Thank you Sheena13.