What to expect: I have my first appointment with... - My Ovacome

My Ovacome

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What to expect

diamondhearts profile image
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I have my first appointment with GYN/ONC in the morning. What can I expect to happen. I have been referred under 2 week fast track referral for 2 tumours of ovary. One on right (although no ovary visible) 9cm solid tumour and one on left ovary, with ovary only partly seen 5cm cystic tumour with 3cm solid component I'm so nervous I'm 42 years had total hysterectomy 13 years ago for extensive fibroids. Developed peritonitis and septicaemia post operatively but had no problems since until this xxx

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diamondhearts
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14 Replies
wendydee profile image
wendydee

Try not to worry, Diamond! It should be very supportive and usually there is a specialist nurse present to explain things. They are brilliant, in my experience.

Will you be able to take someone with you to jot down any points, it's amazing how our minds go blank at times like these.

If you haven't yet had any appointments at all, I can tell you what may happen: This is only based on my experience, so may be different in different hospitals.

I had an ultrasound scan (external around the abdominal area) and a trans vaginal scan (internal with a thin probe). I also had a CA125 blood test. You may have already had any of these. Then the surgeon examined me, externally and internally. He then assessed the next stage of treatment needed. In my case it was a full hysterectomy the next week, as I had all the symptoms etc etc.....they also sometimes recommend having 3 rounds of chemo before the op if they think there is a likelihood of OC. This is possibly a more modern approach. Mine was 10 years ago.

Just think of it as a step on the way to getting better. If you have this ***** growing inside you, better out than in, I say!

All the best. I'll be thinking of you

Love and hugs

Wendy xx

I agree, better out than in. My niece in Spain age 42 had what appeared to be ovarian cysts. The decision was to remove them through keyhole surgery. Her CA125 was elevated but she did not understand the signifance of this. Anyway during the surgery one of the ovaries burst, the biopsy results showed the cysts to be ovarian cancer. Had they been removed cleanly it would be unlikely she would have had chemo but because of the burst and spillage she underwent 6 rounds of taxol/carbo. Her CA is now normal and is in middle of her 3 monthly spell before a check up. Anyway benign or not, get them removed. Love Paul xx

RuthPOvacome profile image
RuthPOvacome

Hi there I am the support line nurse at Ovacome. Do feel free to give us a ring on the Ovacome office 020 72996650 to discuss things. Make sure if possible that you take someone with you to the appointment and make a list of questions with - its so easy to forget what you want to ask when you get to the appointment,

Best Wishes

Ruth

diamondhearts profile image
diamondhearts

Hi Ruth. I feel dreadful calling incase someone who needs support because of firm diagnosis of malignancy needs the call. Silly I know x

Whippit profile image
Whippit

Dear DiamondHearts

Never feel worried that someone else needs more help than you. I hope you take up Ruth's offer and ring her as she'll be able to reassure you and give you lots of helpful information.

My first meeting with a gynae/oncologist surgeon was to discuss surgical procedures and sign the consent form. She was absolutely lovely and explained everything in as much detail as I wanted.

You've had great advice above. Try not to worry. I can promise you you'll be in excellent hands. They are absolutely amazing and the surgery will go a long way to sorting out your problems.

Let us know how you get on - and post any time if you think we can help.

Love Annie xx

Aliddy profile image
Aliddy

I also had a large ovarian tumour with solid components, like you I feared the worst, it turned out to be borderline mucinous STA1 Was removed intact, now just 3 monthly check ups.

Hopefully yours will be the same.

Sue x

diamondhearts profile image
diamondhearts

You are all so very kind and I really appreciate all of your advice. I am just so worried. I am desperately trying to keep my mind busy I shall know more tomorrow xxx

charlie12 profile image
charlie12

Hi there

I just want to add my good wishes for tomorrow , it is rotten luck to be in this situation so young , but you will get through this.

Take care xxx

Me too - but it's better to know, then if it looks necessary to crack on with treatment. Out, out, out and at least you had the big hysterectomy bit already; with any luck you will recover a little better from the op trauma. It seems to make people feel better immediately, just getting the damn thing out, if it turns out to be there. I had chemo for 3 months prior, even that passed fairly quickly though. However it goes : good luck, and let us know?

Love & strength

Sue xxx

diamondhearts profile image
diamondhearts

Oh I shall do. Thank you all so very much once again xxx

wendydee profile image
wendydee

Do ring Ruth, if you have time. She is lovely, and sooooooo helpful. She won't mind at all, I am sure. Good luck with the appointment

Love W xx

ScottishMisty profile image
ScottishMisty

Hi! Just hoping your appt went ok - if it can in our situations?? You had some great advice on here and by now hopefully you have a better idea of the plan of treatment. My 1st appt was long (had no idea like you but had hubby for support with pen and notebook) and but included blood tests, scans, having to drink a vile 2ltrs of liquid prior to scan but loads of positivity from everyone I saw. Thankfully mine turned out to be huge but borderline and was dealt with quickly and efficiently 2weeks later.

Do keep us posted hun!

Sheila xxx

diamondhearts profile image
diamondhearts

Hi all. Well I am none the wiser as to whether these horrendous things are benign or malignant. I've had more scans and blood tests I have a great deal of adhesions from previous surgical procedures and the team needs to determine the next steps which is either CT scan or how to remove these things I knew they wdmt be able to say with clarity which way things will go however I thought if at least be told a date for surgery. Apparently I am a severe risk of permanent bowel damage x

ScottishMisty profile image
ScottishMisty

I should have said in my post that I didn't know until 2weeks after my op that mine was borderline. I think many of us will be the same. Those 2weeks were the worst for me - post op, unable to do very much and the uncertainty of the future. But turned out in my favour eventually.

Hoping all goes well for you and you get sorted out very soon.

Sheila x

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