Everyone is telling me not to worry but I just am ...

[Carrieph2]

I'm not sure if I really belong on this blog but you all sound so supportive. I am awaiting results of CA125 test after MRI scan for spine problem showed 4.7cm mass on one ovary. I have friend who is consultant gynae and so that has been helpful but said that it would probably be OK if the mass was small and simple but the MRI scan says 4.7cm and with 'different layers' and that they couldn't really see it properly. The not knowing is so hard and I almost don't want this week to happen because I know that the result is coming and life will either go on as normal or not. I'm 49 so I know that the probability of a problem is higher. I am almost physically sick with worry.

[Hidden]

Hi Carrieph2,

Of course you are worried. CA125 is a quick test, and results will be back within 24 hrs, so do check if it is elevated. Elevated is deemed to be above 35 - some of us have had results in the thousands! Just to complicate things, an elevated ca125 is not conclusive of ov.ca., nor is a not-elevated result absolutely proof of no cancer.

Get it checked out, and talk to your friend, and get the mass diagnosed. Let's hope it's all benign.

Best wishes,

Isadora

[BusyLizzie]

Hi Carrie,

As Isadora says, the wait for your bloods should not be too long. The only advice is to keep busy while you are waiting. If it is elevated, then you can look into it further, but for now distraction is the best tecnique.

Love Lizzie

X

[snow2]

Hi ,

I'm in the same situation, had my bloods done last week after a U/S showed a 34mm cyst? on my left ovary. Got an appointment next week with the gyne-oncologist and to scarred to ring my doctor to get the results of the CA125 as everyone says they are not always a good indicator.

The U/S women was concerned and said it didn't look good, but also said small and early which I am clinging on to.

Trying to walk the dogs a lot, keep busy and not think to much, reading these boards is helping as the women are amazing and strong.

Now if only the sun would shine and I could escape the rain

xx

[wendydee]

Hello both of you, Carrie and snow,

I was in the same position ten years ago and, believe me, early diagnosis is the key! By the sounds of it, whatever you have will be diagnosed and treated early ...so important. It's really not that scary, there is so much support on here when you know what will be happening. In the meantime, follow the advice about distraction techniques and try to plan a few treats for yourself to keep you busy. You may be worrying unnecessarily. I sincerely hope so! Stay in touch and let us know how you're getting on.

Love Wendy xx

[Carrieph2]

Thank you all - it obviously was the right thing to ask - makes a difference already. The surgery said to me that results would be through by Thursday (so 6 day wait) and the thought of all that time not knowing has been hard. I'll try and ring them later today and see if it's sooner. From what I'm reading, that's not the end of the road though - obviously have to carry on to make sure that it's OK even if the results are low. I am waiting for an U/S appt to come through which seems to be the next step. They said 4 weeks to get the appt date - would you all try and get that moved forward?

Snow - we are so in the same boat - and not a great place to be. Fingers crossed for both of us for a good outcome. But as this forum shows, we aren't the only ones by a long chalk.

Thanks everyone for your kind messages -

xx

[wendydee in reply to Carrieph2]

I had two ultrasounds, 2nd one on a better resolution machine, then a trans-vaginal U/S (not scary, just a probe internally, like an internal examination) then an appt with consultant radiologist, then CA125, then consultant gyne/onc surgeon. I was in for my op within about three weeks from the first appt.

I agree that this is not a good place to be, but having been one of the lucky ones who is still well 10 years after, I know how important early diagnosis and treatment is, and I know how this experience has enriched my life ..... really!

Good luck, all you women who are going through these early stages and keep positive, it may well be fine

Love, Wendy xx

[Bloomin]

Hi Carrieph2, know how you are feeling. I recently had an u/s and saw my G.P. I have a cyst in the uterus, several around an ovary, sizes 4cms, and apparent fluid in a fallopian tube. Been referred to gynae and today just had a CA125. I said to the nurse doing the blood I guess this is the start of many more tests! Like you I am nearly 50 and know it is not looking good. I am more worried about radical surgery and the inconvenience of that. Feel confident if anything sinister, it is hopefully being caught early and will be treatable. Just peed off because my reproductive system has historically been problematic and never any use to me. (unexplained fertility and other problems). This forum offers terrific advice and support. I think as previously suggested, try and take one day at a time and ensure a treat each day of something you enjoy or find relaxing. I know for me nothing is certain at the moment and won't be unless surgery/bioposy testing, so have taken the attitude to try and carry on as normal for now. If I have to have surgery so be it. Will face the practical dilemmas of that at the time. In the interim, this is my kind of new Facebook! Try not to think too hard and relax. Thoughts are with you and hope there is positive outcomes for you.

[Carrieph2]

Thanks Bloomin - that's such a good attitude. Once something like this is discovered you start thinking about all the warning signs that you didn't know where warning signs. I've had very erratic and very heavy periods since last November but I just put it down to my age - also terrible back pain and put that down to age old back problems and am exhausted all the time. They might nothing, but your mind certainly works overtime in the middle of the night.

Good luck, thoughts with you too.

xx

PS. Very odd seeing that 'nearly 50' in print - that sounds an awful lot older than I think I am!

[sharkbait]

Hi Carrie (and snow!) - i was in a very similiar situation to you a few weeks ago, apart from perhaps our ages are slightly different! im 24 :)..i had alot of pain in my right side and went to my doctor who then sent me for an ultrasound and ca125 test. The scan showed up a 6cm 'complex' cyst on my right ovary. I was told that same afternoon that it would have to come out as it wasn't going to go away and would only get worse if i chose not to have surgery. When you say the not knowing is so hard, i completely relate to you. It was one of the worst weeks i've had waiting for the operation and again afterwards when my pathology results came through. Nothing anybody said could make me feel better - i wish i had found this site earlier as everyone seems to be, like you said, so supportive and lovely. But please remember, like the other ladies have said..this is a good thing they have found it. Now, if it's anything they consider serious, they can decide whats going to be best for you and how to treat it. It might not seem it at the moment and your world probably feels like everything has just stopped and you are in limbo. But for now do things, as Snow suggested, that make you smile and try to relax and not let your mind run into overdrive. It might just be listening to some music that helps you let off steam or going for walks or a warm bath..anything that helps you feel more at ease.

i got told whilst one of my qualities is my imagination its also my worst for letting itself get carried away! Unfortunately i did a bit of google investigating before my operation and again afterwards when i got my results back and i found it really isnt a friend! It is best to wait until you know exactly whats going on otherwise you can scare yourself silly with information and statistics that aren't relevant to whats going on with you. We are all unique

As it turns out my cyst was a serous borderline tumor which they didnt realise until after the operation..kind of a confusing diagnosis..sort of cancer and sort of not! .. i feel lucky it got caught so early and can now be monitored on a regular basis. I hope that all this horrible stress you've both been put under will have a good outcome and that you have a good GP and gynaecologist looking after you. I'll be sending lots of good vibe thoughts both your way

Take care

Siobhan x

[wendydee in reply to sharkbait]

Hi Siobhan

Mine was a borderline tumours too. They are very slow growing and have a tendency not to spread. Also, I didn't need chemo, so although I had cancer in both ovaries and my omentum, the surgeon was able to remove all he could see and I didn't need any more treatment, except 5 years of monitoring and the option to self-refer if I have any doubts or suspicions that something is going wrong. So far, so good.

Hope it works well for you too

Wendy xx

[snow2]

Dear all,

Thank you for all your kind words and special thanks to Carrie ( hope you dont mind me joining in your post.

Doing my best to keep busy and distracted, lots of baking and going to work, which is a distraction, Im a massage therapist and its normally me listening to clients, so trying to master the art of Zen, failing most of the time but trying all the same.

Love to all

jxx

[Carrieph2]

Siobhan - poor you - but wonderful to hear your positive thinking. And it sounds like you have good support? I absolutely empathise with your comments about your imagination - mine definitely runs rampant and ends up in all sorts of places that aren't worth going to yet. Luckily husband's doesn't work like that so he's calming me.

Snow - very happy to have you join in my post - hope it has helped even a little bit.

Night all. X

[Carrieph2]

I had my result today - and now feel slightly silly for being quite so worried. Ca125 came back at 16. Now wait for U/S appt but mind much more at rest. I would like to thank everyone who was so supportive when I was so worried over the past week. I know that the blood test is not conclusive but it is a huge step forward and has certainly helped.

I feel very lucky and thankful.

With love to all of the amazing women on this forum.

[snow2]

brilliant news,

and breathe........

Sx

[Carrieph2]

Deep sighs of relief. Not over yet but much less to fear I think. Xx

[Crackers]

I'm in the same position...it's the waiting and not knowing that is the worst. I kind of feel that once you are an outpatient you are no longer a priority and are forgotten! Try and keep busy and think positive xxx

[Carrieph2 in reply to Crackers]

So hope that your results are OK. The waiting is torture. There are a lot of very amazing women on this site - and such strong feelings of terror and laughing in the face of adversity. Very inspiring. I have also picked up that you have to fight and fight to get moved along in the system - and don't always take what the doctors say as gospel. I have my bloods result but I still know there's something not right so I will keep going til I'm absolutely sure it's all OK. Wishing you the very best in the next weeks. xx

[wendydee in reply to Carrieph2]

Great news that the blood results are low! Fingers crossed for the next step too. Let us know how it's going with you. My current downfall is Sainsbury's soft amaretti biscuits .... seriously addictive! Still trying to lose the weight I put on nearly 10 years ago

Keep positive and keep busy!

Love Wendy xx

[charlie12]

Hi Carrie

This is really really good news for you.Do try to take things easy emotionally if you can but keep busy with nice things ( sorry if this sounds daft !!!!) and as many treats as you can.

Hope the ultrasound will deliver even better news for you.

Love

Charlie xxx

[Carrieph2 in reply to charlie12]

Hi Charlie - that's so kind of you to write. It is a great relief but obviously not quite over yet. Now trying to find out when I might expect the U/S appt - seems to take a while up here (Scotland). I don't know if I'm being a bit too happy about the result but I have to say I'm not worrying like I was at all. I know that you can get false negatives but my friend (consultant gynae) said not to worry now. And I'm very (too) good at treats! Caramel eggs are my downfall!!

xx

[charlie12]

Hi Carrie

You are more than welcome.

My understanding is that a high CA125 could be bad news, but is not necessarily always bad. A very low CA125 is far far far more likely to be good news than bad.

Worrying is something we all do, but it plays havoc on our poor little battered immune systems.

You just keep on those Caramel eggs , you deserve them. I have always adored chocolate , but since I had my operations I have turned into an absolute chocolate monster. Thankfully I am now well enough to be able to take loads of exercise and to love it.

So will you before you know it.

Chin up , this is a rough time but it sounds as if you are coping brilliantly.

Charlie xxx

[Carrieph2]

Just a quick note to all the wonderfully supportive and caring members of this community. I have had a good result from the u/s that I've been waiting for and so, for me, the worry is over.

I would like to thank everyone who took the time to speak to me when I really was very worried - and I would like to send everyone here my very best wishes for the best possible outcome and for the strength to deal with this dread disease. I am humbled by the way in which so many of you are dealing with a ghastly situation.

I know that I am one of the lucky ones and, infact, today I have ended up feeling like a bit of a fraud - but a month ago I was really scared and this forum helped enormously.

With much love to you all. xx