BLIND PANIC

[26jg55]

Had scan and blood test. Had phone call from doctor said she has left a hand written letter at reception as she could not contact me. Very worried I am experiencing all relevant symptoms including lower back pain and pelvic pain. Seeing gyno on wed 12th. Doctor said I will prob have hystorectomy and they will take it from there but will get more info on 12th. Have had these symptoms since august, scan sept, blood taken nov. I am confused, have visited internet sites and looks like I may have stage 4. Feel like I have no where to turn and want answers now my husband is just as upset, back pain is constant and pelvic pain makes me sick just turned 51 I just need to have the truth and am in a blind panic,

[MaggyH]

Hello

I was recently diagnosed with stage 3 OC at age 49 and know all about blind panic. I know it is going to be really difficult but until you have read your Drs letter and seen your gyno try to stay calm, even though your head must be spinning.

There are lots of lovely helpful ladies who are members on here and will be able to give you support and advice, ( I am a relative newbie to this), and tomorrow you could ring the ovacome helpline and talk to someone.

Try not to read any more from the internet, most of the statistics are very out of date and there are many new treatments now which have only recently become available.

The most recent ovacome newsletter which is on here somewhere also has some very positive articles.

Hope this helps,and I am sure you will get lots of responses tomorrow, take care and try and get some sleep

Best Wishes

Brenda XX

[26jg55 in reply to MaggyH]

Thank you so much. I will look up the news letter. Information is power and I think Ive not asked enough of the right people. I am a very possitive person but last night I must admit it got the better of me.

You response has reassured me all may be well and not to panic untill I need too.

Thank you x

[Hidden]

I am sorry you are so worried, but if you haven't had any results through yet, then it is best if you try to put it on the back burner until you know more, I know this is easier said than done it might not be what you fear, didn't your doctor tell you what was in the letter? Do you know the results of your scan? It is the not knowing that is worse, when I was diagnosed I must say I had no pain at all, I just wanted to spend a penny more often than usual, and no inclination that I had OC it really is taking one step at a time. sending you best wishes.

Love x G x

[Hidden in reply to Hidden]

The Ovacome helpline number is 0845 371 0554 you could give them a ring tomorrow and speak to Ruth Payne she is very good with advice.

[26jg55 in reply to Hidden]

Thank you Thank you I will do that. After reading responses I know is information I lack, I need the facts to help me to managed the positive and negative emotional swings I am having. x

[LouiseOvacome My Ovacome Team]

Hi 26,

Welcome - we are glad you found us, if so sorry this has happened to you.

PLEASE PLEASE try not to panic (But we all know that is much easier said than done.)

Its really important to take things one step at a time, and try if you can to just digest and deal with the things which are known/facts. There are literally dozens of reasons why this may be happening, and only one of them is cancer.

You say that you had a scan in August. If they had suspected cancer on the scan, then you would have seen the Gynae Onc within 2 weeks, so please try to take some comfort from that. The blood test which seemingly has your G in a spin is probably a CA125. Its notoriously inaccurate, and will go up for literally dozens of reasons.

You say you think you have stage 4, and you have looked at some internet sites. Please try not to worry and if you can, please don't go looking through the internet. We have all done it, and I think everyone would agree that it really doesn't do anything to help, it just makes us more worried.

The best piece of advise I ever had was actually from my husband . He said "I'll worry when they tell me to" He was so right (It took me 3 years to reach the same place, but he was spot on!) They will tell you so much more on the 12th. That's when you will know much more. Until then its maybes, so all you can do is wait. Horrible but true.

There are some things which might help - Mantras to keep telling yourself to get you through till the 12th:

Ovarian cancer is rare

Only 1 in 3 women with nasty scan and blood results turn out to have OC.

I'm in the right hands, and they will look after me.

Treatments are getting better all the time.

I will only worry about what I need to. One step at a time. At the moment I am worrying (Totally understandably) about the what ifs.

I really hope that helps.

Please do call the Ovacome nurses - Its much easier to talk, and they are lovely!

Sleep well if you can.

L

[26jg55 in reply to LouiseOvacome]

Your mantra helped ive re read it over and over.

Your information calmed me down. I now know that untill I have all the info, I need to manage myself better and this will help. All will be well I just know it. x

[wendydee]

Hi! I'm glad you found us. It's no good for you to try and guess at stages etc. Have a look at my profile, I was showing almost the same symptoms as you, I was 51 when it began to be really concerning. Have a look at the BEATonline symptom tracker. You can fill in your symptoms, print it off and take it along to your appointment. Gwyn is right, ringing Ruth would be a good idea. She is great, has first-hand experience of what you are going through. You will get through this, your diagnosis is very unsure yet, mine was much better than I dared hope. I am still here, it is not often anywhere near as bad as you fear, though we quite understand how bad your fear is at the moment. Try to plan a little treat for each day until the 12th, as a bit if a diversion. I'm sure you will be more reassured when you know what is going on. Let us know how it's going.

Love Wendy xx

[26jg55 in reply to wendydee]

I am so much calmer after reading your response and re assured. I will check out the tracker. The fear just seems to trickle in when I least expect it and going to work is hard as I cant seem to concentrate. Is hard not to share with work friends untill you have all the facts but I just dont want people to now untill I know, so keeping my emotions in check is taking its toll. Thank you for your help xx

[Hidden]

Please stop panicking, we all know thats really really hard. but you can't interpret your own symptoms and will get all the answers soon, then it will get a bit easier I promise. Stay AWAY from the Internet and call ovacome for a knowledgeable ear, it really will help. We are with you, keep posting as you learn and we will all be here for you

Sue

xxx

[26jg55 in reply to Hidden]

No more internet I promise. Thank you for being here for me x

[Whippit]

Dear 26

I really hope you managed to get some sleep last night. Things nearly always feel better in the morning. You'll find lots of support on this site from women who are living well and happily despite a diagnosis that we found hard to cope with when we first heard. We've had time to take it in and now we know what we're dealing with we're enjoying life.

It's good you're getting such prompt treatment from the medical team. There is no way of knowing at the moment whether you have ovarian cancer, and indeed if this is what it is, what stage it might be. You will only know this once you have had some surgery, if it's necessary, to remove whatever is causing the problem and after six weeks the histology team will be able to give some feedback.

I wish you the best for 12 December. Please keep posting as we're here to help if we can, and also let us know how you get on.

Much love, Annie

[jan50]

Hello there,

As others have said please try not to worry. I am also 51 and was diagnosed earlier this year. For me the worst time was going through all the tests, scans, blood tests and not knowing, I also created the worst case scenario in my head, so I understand some of what you are going through. I have just come through treatment and am in remission and feeling well. If anyone had told me in March when I was diagnosed I probably wouldn't have believed them. So please try not to worry too much, and use this site for any questions you have, believe me the ladies on this site have so much knowledge and are a fantastic support when you need it,

Take care and good luck

Jan x

[26jg55 in reply to jan50]

Thank you. Yes its the swinging from positive to negative I find hard. The not knowing the " what if's" not knowing the full picture, the waiting. You seem to be doing well and I will so so so use this sight. Thank for your support xx

[wendydee]

All the best! What is your treat for today? I found it helped to keep looking for three lovely things that I saw/ experienced before 12:00 each day ..... It puts a focus on looking for good stuff, instead of worrying about the 'what if ....' Hope work goes ok

Love Wendy xx

[26jg55 in reply to wendydee]

Hello, Have been for long slow walk along water front. Have realised that if I just stay in the moment and control the drift in my head to the bad stuff I will be able to just wait it out untill the 12th and what will be. Bought a little cat treat for my cat, at home now giving him lots of cuddles. I am going to ring the help line hope to get some perspective on this. Thank you. x

[wendydee in reply to 26jg55]

Ruth is just great. I am sure you will be able to get things into a more positive frame of mind after speaking to her. The cat will help, I know .....mine saw me through the whole experience

Love Wendy xx

[26jg55 in reply to wendydee]

My cat wont leave me alone. What is a high ca125 reading? Mine was 300 Is that high I have no clue how to understand how it ties in with my other symtoms, Will let u know how the 12th goes xx Love to you and yours xxxx

[wendydee in reply to 26jg55]

Glad the cat is looking after you! The CA125 is a notoriously inaccurate measure, it is not always a good guide. However it can range up to 2000+ I have heard. I am sure all will be explained to you on Wednesday. Not much longer now! Did you give Ruth a ring? I am sure it would help you

All the best for Wednesday

Love Wendy xx

[sarem]

dear 26

i was diagnosed with stage 3 oc in june this year. I really think the not knowing is worse. Once I was diagnosed i put my life in the experts hand and decided to go with the flow. It was almost like a black fog lifting. I would rather not have been told I had cancer but as I kept telling friends I cant change anything. I have remained positve throughout. try not to worry too much it may only be a cyst. Just remember there are lots of people out there to help you through it all.

Keep positive

Best wishes

Lorriane

[26jg55 in reply to sarem]

Thank you, you are right I need to stop trying to go over and over in my head about it. I do hope you are ok. I have had four cysts removed last year. A chocolate 8cm and three other smaller ones, I went back because of the weird symptoms ive been having not expecting anything but the same response. I think thats whats thrown me a bit. But I will do as you did and go with the experts cant wait till the 12th just so I can then move on.................. Thank you again.................................

[sarem]

good luck. fingers crossed for you xx

[26jg55 in reply to sarem]

Thank you, Wednesday is getting closer. I cant help but fear the worst, yet then know all will be well. So wierd. Like no other feeling. Will let you know how it goes. I will take your best wishes and luck with me. x What is a high ca125 reading mine was 300 I have no clue what that means in terms of cancer and how it ties in to my other syptoms. Obiously I will ask the gyno my doctor has been a bit wishy washy shes glad I havent asked too many questions !!! I dont know will just have to wait I suppose. xx

[wendydee]

Have a look at my answer higher up the thread about CA125. Try not to do too much worrying or Internet searching..... We're all different. Ruth would put your mind at rest I am sure. It's 0845 371 0554

Good Luck

Love W xx

[Hidden]

By the time you have read this, you've probably already seen your gyno. I hope it went much better than you expected. Please don't read stuff from the net. I wish i hadn't as it left me with no hope when there was some. Take good care....x

[carolpat]

I was diagnosed last December 23rd to be exact with stage 3b Ovarian cancer. I was told the disease was chronic and surgery was not an option. I had 3 chemos and my tumour had shrunk from 11 cm to 2 cm and most of the other cancer cells seemed to of died. I had surgery after my 4th chemo followed by 2 more chemo. In August I was declared cancer free and in Remission, I have had my first 3 month check and am still clear. Please be positive don't panic think clearly of all the things you need to do with your life stay positive and fight. Please do not read the internet. I started to but soon realized it was not helping in fact it made matters worse.

Good luck and lots of prayers for you. xxx