Metastatic ovarian cancer - looking for advice - My Ovacome

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Metastatic ovarian cancer - looking for advice

angelaLG
angelaLG
16 Replies

My sister was recently diagnosed with Metastatic ovarian cancer, only 5 -6 weeks ago, sadly the cancer was far to strong and my sister lost her fight. I have been told that i need to get test for CA125 to see if I have this gene. Is there anything else I need to check for. As a family we are still very much in shock and still finding certain this differcult. I do have a appointment with my doctor next week, but I just need to know is there anything else i can do.

In the past i have suffer from have cysts and also do have irregular cycles, which my sister also suffer from.

Any advice would be very much appreicated, as this is a complete shock and she was only showing signs for 2 months before she passed away. The first sign was she couldnt eat much and then what look like her belly was very swollen. Once she was admitted to hospital 6 weeks ago, as she has having trouble breathing due the the fluid build up, they did two drains, as this was putting too much pressure on her heart. She has 3 sessions in chemo, which we were told were going well and then all of sudden we were told she had 24 hours to live as the cancer had spread everywhere, she only lasted 4 - 8 hours after being told this.

Thank you for reading.

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Marieloiuse

So saddened to hear about the loss of your sister to this awful didease. You must all be in shock at the suddeness.

It is good that you are being encouraged to get a ca125 test. You should also ask about the BRACA test too. My episode with OC was long ago but many of the amazing ladies on here, still dealing with it, will have loads of relevant and sound advice for you.

As sad as your situation is you are in a position to take steps to avoid this insidious disease. Forewarned is forearmed and make sure you get as much advice as you can in order to ensure your own and female family avoidance of it. Also might be worth chatting to the nurses at Ovacome.

Once again, so sorry you had to lose your sister to this cancer.

Catherine x

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angelaLG

Thank you. I also have daughters, so anything that will help to avoid if we can would be so helpful. Sorry, not sure what BRACA is, this has not been mentioned at all.

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Marieloiuse

Hi Angela.

Think I spelt it as people say it but it's the BRCA gene which is linked with breast and ovarian cancer. Not many of us have it by any means, but if it's one that runs in the family it is certainly worth knowing about as it's a definite risk and you would be counselled and monitored if it ran in your family.

Again, you will receive wiser words from the ladies on here have experience of the route you want to follow.

Keep us posted.

Catherine x

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angelaLG

Thank you for the advice. I will be sure to mention this when i see my doctor next week.

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izzybruce

This is so heartbreaking,I am unable to offer advice but you definitely need testing xxx

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Lily-Anne

Hi

The CA125 test will not give any genetic information, it will only tell you your level. A reading of 0 - 30 is normal range, at my hospital, some use 0 - 35. However without other symptoms it isn't of diagnostic use but a raised level should invite other testing. Inflammation in the pelvic area and dental area can cause the level to rise.

However ideally you should visit your GP and ask for genetic testing, they can arrange this for you, which is a questionnaire and a blood test.

My daughter is 19 and has had a CA125 test which was normal. Because I did not have the BRCA mutations she is offered no further testing until she reaches 30.

I'm sorry you have had to cope with this loss and send my very best wishes

LA xx

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BeeWild

So so sorry at the loss of your sister you must all be shocked and devastated!

I would definitely get your Ca125 levels checked and also get tested for whether you have BRCA 1 or 2 genes as this is a genetic link to breast and ovarian cancer as has been mentioned.

I would also ask your GP regarding having a scan as sometimes CA125 is not always a good indicator of disease or not especially in low grade cancers of the ovary.

Did they tell you which type of cancer your sister had? High grade serous, low grade mucinous, germ cell etc it might be worth you finding out her type so you are better aware?

Once again so sorry for your loss my heart aches for you all x

Please let us know how you get on with your GP 💖

Bev

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meboo

Ca125 can be an indicator, but not a diagnosis. If you are pre- menopause , your time of cycle may affect it. I had a CA125 if 31 when I was tested after my mum was diagnosed but it halved when retaken at the mid point of my cycle

If it is raised, it should be followed up with a scan. On its own, it’s not necessarily significant. By the same token, some women with OC have CA125 within the normal range

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suzuki

So sorry you lost your sister to this awful disease. What you need is to get a referral for genetic testing and maybe a 125 if you have symptoms at the moment.

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Maus123

I'm so sorry that you lost your sister .

In addition to the good advice already given, I would think it's important it is for you to continue to monitor and listen to your body carefully. Don't get fobbed off by GPs as having IBS or some such if you ever do develop symptoms of potential tumours like the lack of appetite, the digestion issues, the swollen belly etc.

Hopefully it will never happen. But you might have a better chance of spotting anything untowards early via regular CA125 tests (if that is an indicator for you) and (transvaginal and abdominal) ultra sound examinations.

My best wishes for you, and may your sister rest in peace. Maus

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Rachael47

Ask for genetic testing. BRACA is the most common abnormality leading to Ovarian and Breast cancer, but there are others such as the BRIP2 which my daughter and I share. You may need to push to get tested, but insist.

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eileen_alberti

I'm so sorry to hear about the sad and sudden loss of your sister. Since it's so early and the grief is so palpable, but while this may be the best time that you will all be together, it might be a good time to have as open discussion as possible. Then maybe shelve the discussion until some research can be done. Then, all the research can be sent to all so you all have time to read and absorb what you can. Then maybe a conference all or some can join and still get some medical input. I hope from that they will see how serious you are about this serious killer.

Again, my deepest sympathy to all the family. Blessings to all, Eileen

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amandanewe2

Hi Hun so sorry for your loss. i have just been diagnosed with ovarian cancer and after a lot of reading i am going to be tested for the BRACA gene as my 2 aunties died from ovarian and breast cancer which is associated with the Braca gene; also I have a daughter and niece . it is important you get tested. Also look up the symptoms of ovarian cancer and if you get any different feeling go immediatelyto your GP; i found mine by some literature that had come to our surgery ( I am a Practice nurse) and i thought maybe I'm paranoid but I'm sure i've got some symptoms) and I had. I hope this helps

hugs xx

Amanda

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Mptelesca

So deeply sorry for your loss, Angela. My thoughts and prayers are with you and your family. I don't even have any advice, except, that you are doing the right thing finding out what your next step should be. I am sure in all of this sadness and confusion, it will all come about in a way of prevention for you. Wishing you the very best...again, I am so sorry to hear about your sister.

Marisa

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Rlenesue

Angela, I am very sorry to hear about the loss of your sister. While I didn't know Angela or you, we are all sisters bound by cancer. Saving grace is she didn't suffer much and she went quickly. <<hugs and kisses>>

I'm sure you're still grieving and in shock. However if the doctor recommended checking ca125 tumor marker as a first response, it can detect false readings. I suggest getting tested for the BRACA gene mutation and start getting female breast/ovarian cancer histories from 1st.line relatives first. I suggest getting a vaginal ultrasound as well. These are quite helpful. Also, I dont know how old you are and have children already but your doctor might be thinking of prophylactic hysterectomy. A ct scan can reveal if theres any cancer.

I know it's frightening to hear all this and these strange and foreign terms but we've done.that, been there. So if you have any questions at all just ask. We're all here for support.

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Rlenesue

Also, Angela, I am BRCA1 positive and just had my last chemo trestment today. My first cancer was in 2007. This was number 4. Check relatives on fathers and grandfathers sides for their sister's histories on breast and ivsrian cancers. Talk to your gynecologist soon. My mom was BRCA1 positive, and died at 41. Me, my sister, and brother are all BRCA positive, however, my daughter, and my brother's son are both BRCA negative. So there is a light at the end of the tunnel. I am 57 and was first diagnosed 10 years ago tomorrow.

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