Do I have a right to be worried?

[LynBT]

I have not yet been diagnosed, but my GP is looking into the possibility of ovarian cancer. I have been feeling unwell for months, with very vague symptoms, mainly extreme tiredness and lower back pain. I had convinced myself that I had ME (from reading too much on the internet!) and my GP was also coming around to the same conclusion. That was until she sent me for an ultrasound and they discovered a cyst on each ovary (approx 30mm in size). The ultrasound nurse told me the cyst were benign, but I'm not sure how they can tell from an ultrasound? My mum died of ovarian cancer at 59 so she also arranged for me to have the CA125 blood test. At the mo' I'm waiting for the results of the test and also another scan in 2 weeks' time. Problem is I can't stop worrying. My husband's attitude is to pretend nothing is happening and telling me everything is bound to be ok ... which to be honest doesn't really help!! Do I have a right to be worried and does anyone have any tips on how to get through the waiting period??

[Sally-r-abcd]

Hi,

Yes you do have a right to be worried with your history. I had vague symptoms, and an ultrasound showed what I was told was an endometrial cyst 16 x 12 x 12cm on the right ovary. The ultrasound showed this as a mixed echo image. A 'normal' ovarian cyst is normally completely filled with fluid, with smooth, round sides, like a balloon filled with water. I had to have a CT scan and an MRI scan, before surgery, and I had six weeks of uncertainty. I made every effort to get on with my life, keeping things as normal as possible, which wasn't always easy, but it was the best thing I could do. My husband was very similar to yours, and kept telling me it was bound to be nothing, and not to worry. I found that most of the time I agreed with him, and kept telling myself it was just an endometrial cyst (I had a history of endometriosis and had a hysterectomy 16 years ago), but, I did have to prepare myself for the possibility it wouldn't be good news, so when I did get my diagnosis I didn't fall apart, and was able to take in what I was being told. What I would do is ask your GP to see if they can look at the images of the ultrasound, and reassure you that the cysts are fluid filled, as this would show they are likely to be 'normal' cysts. I would also ask for a referral to a gynaecologist, so they can reassure you. I do hope this has helped.

Good luck,

Sally.

[wendydee]

I agree with Sally. It certainly needs looking into further, which is just what's happening. My husband also adopted a head in the sand approach, but was wonderfully supportive when he knew what we were facing, so it probably is better for them when certainties are involved! Whatever happens, there are so many good news stories, especially when early an diagnosis is made. I know you will have what happened to your Mum in your mind, but treatment has moved on a lot even since I was treated in 2002. I found the tapes (now replaced with CDs I believe) from Penny Brohn Cancer Support very helpful. They have one with a meditation, visualisation and relaxation session. When you can't sleep for worrying, it may help. Also I just kept manically busy! Clearing out cupboards etc passes the time quickly!

You will soon have more info. In the meantime, keep in touch on here. Post a new question or just do a blog. It all helps when you're feeling as if you're the only one who is fighting this. I agree with what Sally says about preparing for it being cancer though. I was convinced it was with mine, and found that I'd done all my panicking before, so just concentrated on info and getting well again.

Good Luck!

Wendy xx

[LynBT]

Thanks Wendy & Sally for your kind words, I feel a bit better already just being able to talk to others that know how I'm feeling. I can't really speak to anyone else as just the mention of the 'C' word makes most people panic, and I don't want to inflict that on anyone until there is any definate news.

Life is very hectic at the moment anyway, with extra work (we are self-employed) as well as a house move in the next 6 weeks!! I suppose this should help - just keeping busy, only problem is I feel so ill and tired most of the time that I can't function unless I have at least a couple of hours sleep during the day, but that also means not enough hours in the day ... So vicious circle and more worry!!

Many thanks

Lyn xx

[Hidden]

Hi Lyn, I had exactly the same wait as you - I had a mixed (sollid and fluid) cyst that the consultant thought might be cancerous. I has only to wait a week for the blood test and then a further week for a repeat scan, by which time whatever it was had gone. I still need checks regularly though as, like you, I have a family history of cancer (breast rather tHan ovarian, but it increases my risk of both). I have very young chidren and looking at them so happy made me so sad inside, but I couldn't show it, so I know just how you feel. Conversely, my husband was very worried which almost made things worse!

I found looking things up, as I did obsessively, helped for a bit but you also uncover so much info that seems to suggest your symptoms and scan have to be cancer. There is a very helpful American paper out there, designed for people like you and me, that is very reassuring. I'll try to find the link.

One other thing - I, like you, am self-employed, and am exhausted most of the time. I do get broken sleep and am still breast-feeding so I keep thinking it's that, but do get other things like thyroids and hormone levels checked? Hormones are guilty of so much! I also found that being outside, even on little walks if you can manage it, helped hugely and took me out of the black hole the worrying put me in.

Thinking of you. Keep us posted, and take care.

Francesca x

[Fedup7 in reply to Hidden]

Hi Francesca I have the same, mixed solid and fluid small so hoping it will just go away, how long did yours take to go?

[Hidden]

Ps - ultrasound nurses do get a very good idea if a cyst is harmless and just fluid, so take heart in that. Mine definitely looked suspicious. Normal ovarian cysts, esp on both sides, are really common. Fx

[wendydee]

How are you feeling now? It must be so frustrating with so much to d and so little energy. I'm afraid your body is dictating what you must do at the moment, it takes over at times like these, and makes you rest when you need to. Francesca is right about getting outside, I know it sounds corny but I agree with her that birdsong, greenery and a little walk really help to re-focus!

Take care

Love, Wendy xx

[LynBT in reply to wendydee]

Thanks Wendy & Francesca,

Felt really rough this morning, just come on and the pain in my lower back worse than usual, loads of weird things going on with my body at the moment, sometimes I think I'm imagining it all!!

So update ... Had my appointment with my GP this morning - expecting the results of my CA125 test. Apparently nothing much wrong with my bloods except slightly low blood count ... CA125 results still not arrived! So more waiting. She then proceeded to go on and on about my home life and sleep patterns as some kind of explanation for the tiredness, as I have a previous history of depression I get the distinct feeling that she thinks I'm depressed and just making up the rest of it!! So now feel very frustrated and fed up at having to wait another week to get any more answers. So next week hopefully!! CA125 test result and second ultrasound on Friday.

Thanks for the advice about getting outside, I do find this really helps me, I've 3 dogs and 2 horses so don't need any excuse to get outside and find the unconditional love of my animals always cheers me up!

With best wishes and thanks for all your love and support

Lyn xx

[Sue68 in reply to LynBT]

Hi Lyn, I'm in a similar position, your comments are very helpful as I heard from my g.p. on Wednesday that a mri scan (taken because of back pain, last Thursday) showed a large ovarian cyst. This was completely unexpected news so for the last couple of days I have been 'all over the place' emotionally. I'm having an ultrascan on Monday and should know more then. A CA125 test looks ok but they are not totally accurate. I'm finding telling people is quite tiring as each time I have to go through the shock with them and keep positive and sound cheerful. I'm calmer today, not so tearful and this blog is such a relief to find and to share. I'm getting quite a bit of pain that I thought was cystitis, it feels a bit like period pains but now I know what it is it all makes sense. I think it's probably the shock that's making me tearful and the worrying between appointments. I'm finding that talking to friends who have had cancer that their comments are very helpful and enlightening. It's a bit like shoving the elephant out of the room. I've had keyhole surgery years ago for a gall bladder problem and recovery was speedy now I look back!

Thanks again for sharing your worries,

love Sue xxx

[wendydee]

Hi Lyn,

Don't give up on nagging your GP even if you have had depression in the past. That's nothing to do with your present symptoms, I'm sure. The average GP only sees a case of ovarian cancer every six or seven years, so he/she may not be aware of recent research on early diagnosis. Mine kept saying it was my job (it was stressful at the time), my age (I was 50ish), menopause, anaemia from heavy periods etc etc. However, I KNEW something was not right, so I kept on going back. Eventually, after writing TATT on my notes, she referred me for an ultrasound. Then things happened!

You know your own body best. You must trust your instincts.

By the way, I'm deeply envious of your dogs and horses. I got the same unconditional love from a cat. He kept me going when I was feeling really down at times.

Stay strong!

Love Wendy xx

[Hidden]

Hi Lyn and Sue, just to say am thinking of you during your waits. Keep strong xx

[LynBT in reply to Hidden]

Hi all!

Some news -some good some not so good. I had my second scan today, good news cysts seem to have gone and everything seems to be okay. Also had the results of my CA125 test, which was slightly higher than normal - so not so good! There's so much conflicting advice about this test it's difficult to know what to think? G.P. Didn't have much to say, except she will wait for the report from the ultrasound and also probably run another CA125 test.

So still no closer to finding out what's wrong with me, but I just know in my bones that somethings not right, I just feel so ill most of the time, it may not be OC but somethings going on.

Does anyone know if you can have OC even if nothing shows up on an ultrasound??

Best wishes to everyone

Lyn xx

[Hidden]

Hi Lyn, how confusing for you. I was told the blood test is quite unreliable with early cancers, and that it needs to be pretty high before consultants worry if no other symptoms are found. Have you had thyroid and hormone levels checked? I don't know the answer to your question alas but the fact that the ultrasound is clear is good! Do keep pushing your GP until you find your reason for feeling so horrible. Take good care; thinking of you. Francesca x