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My Ovacome

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Hi I'm new

bibs73 profile image
10 Replies

Good morning

I am in the middle of being diagnosed with Ovarian ca. I am 42 and had a large pleural effusion, while investigating this they found cancer cells in the fluid and they found slight changes around the ovaries. My ca125 is 300 so they suspect ovarian. The plan is for surgery next week then chemo.

I have 2 questions did anyone else get diagnosed via a pleural effusion and would the ct show the spread, as apart from the slight changes around the ovaries there was nothing. I must admit I am confusing them a little.

It has been quite a shock for my family especially since we are just recovering from my 4 year old having a brain tumour removed with in the summer, she is doing wonderful and we are very hopeful that she has been "cured".

Thank you for your advice.

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bibs73
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10 Replies
Lily-Anne profile image
Lily-Anne

Hi,

The ladies on here are lovely with lots of experience.

I hope surgery goes well, be kind to yourself afterwards, I tried to do too much too soon and it did me no good.

It sounds very positive for your daughter too.

Please keep us informed.

LA

Cinderella profile image
Cinderella

I think the CT generally shows the spread but from what I have understood when speaking to the consultants is that the CT scan is not 100% reliable and often they will do other tests. My advice would be to write down any questions you have and if possible ask your clinical nurse specialist or oncology team all these questions before your surgery since they are the experts. You may feel something to be very trivial but if it matters to you it needs to be answered!!

Although all of us on this site can help you by what we have experienced, your medical team has all your blood tests, scan results etc so they are the best people to ask. Also, if you have any other queries you can contact the Ovacome nurses on the free phone number 0800 0087054 or email them on support@ovacome.org.uk.

It sounds like you have already gone through a lot with your daughter and now this. Please be gentle with yourself and ask for help when needed since often people around you will not know what you need. You will often have a lot of things going on in your mind too and the best people to talk to at this time are the Ovacome nurses or the Macmillan Cancer Helpline on the free phone number 0808 808 00 00 and of course the ladies on this site who always give invaluable advice.

I am so glad to hear that your daughter is doing well. I wish her well and hope she has been "cured".

Take care and I wish you all the best for next week.

Samixa

lesleysage profile image
lesleysage

Hello,

I can't do better than Samixa's suggestion of Ovacome helpline, Macmillan helpline and writing all your questions down before meeting docs and nurses. After I'd finished my last lot of chemo, I had 13 questions written on my list and on one visit to the GP had 8! Some sounded really trivial as I started to read them out & sometimes I'd end up saying, "Oh, we've already got this answered I think from what we've covered!" but both the oncologist and GP were really patient and, I think, pleased I was making the effort to understand and question.

Let's just hope your 2016 does have lots of good things after this and the distress of your daughter...and fingers crossed for her too.

L x

Katmal-UK profile image
Katmal-UK

Cant offer any advice but wanted to wish you and your daughter all the very best. God bless xx Kathy

Gosh you are having a bad time of it, I think the other ladies have answered all you questions. I feel you ask you write down any questions you may have and talk them out with your oncology team and surgeon. It is hard to face into a hospital regime as I am quite sure you have had enough of it by now. I would suggest you bring in some nighties for the first day or two post op, some music or reading material. Restrict your visitors as much as you can to enable you rest post op. Finally when you get home lift nothing heavier than a cuppa for six weeks. Wish you the best with your op and do come on and let us know how you are getting on

bibs73 profile image
bibs73

Thanks ladies I appreciate your replies. I met with the gyne oncologist again today and she's has postponed a lady on her surgery list for this Wednesday so I'm heading in for surgery then. Then we'll find out exactly what's going on. To complicate things I'm Scottish but living in Norway and being in the Norewiegan hospital just brings all the horrible memories of when my daughters tumour was first diagnosed.

However I do really trust the doctor, apparently Norway has a very high incidence of ovarian cancer and in particular the area I'm living due to one of the mutated gene. She was telling me today in this area they have traced back the ancestors to one lady that survived the Black Death.

I'll let you know how I get on.

Di16 profile image
Di16

Hi,

You mentioned a pleural effusion. Eight years ago this month I went to my GP complaining of shortness of breath. He thought there was fluid in my lungs, & sent me for an xray. That showed a right side pleural effusion. It was then discovered that I also had an ovarian tumour that was causing the effusion, so I was sent to gynae clinic.

Wishing you well for your surgery.

Di

bibs73 profile image
bibs73 in reply to Di16

Thank you that's just what I needed to read the day before my surgery.

charlie12 profile image
charlie12

Hi there

Very best of luck for tomorrow. I am so very sorry that you are facing this at a relatively young age especially after the trauma with your little girl.

Six years ago tomorrow exactly I was operated on for a mass that has various " diagnoses" beforehand ...it turned out to be a borderline tumor and I am still here , no recurrences touch wood. Fingers crossed you will be the same.

No diagnostic test is 100 per cent accurate and very generally speaking the more that's not seen or picked up the better for you ! It's also great news that the surgery has been brought forward , I woke up feeling so much better that it was all taken out.

Love and hugs xxx

Hitchmo profile image
Hitchmo

Hi Bibs,

I hope you've had some of the answers you were seeking here. Everyone is so helpful and supportive; this site has been a huge help to me through my surgery, diagnosis and treatment. I don't have much to add that might help just now - but I just wanted to say all the best to you and your daughter, and please let us know how you're getting on.

Hugs from Kerry xx

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