4 Days ago I had no idea I was unwell

I have had no signs at all, other than my tummy seemed larger, but not to be unexpected at my age :-) By random chance went to collect prescription, and thought I will ask to see a GP, 30 minutes later she was lecturing me on how I could of not possibly know I have a 14cm tumour. Shock disbelief, next days scan, fluid filled with large mass on ovary, next day consultant t tells me worst 1 year best 5 years on scan all other organs look ok. Today MRI and tomorrow meeting with surgeon.

The can showed fluid and a large mass, beieved to be contained.I still don't feel ill. My world is in pieces, how do you cope ?

Suzanne

50 Replies

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  • Easy to say, but try not to panic. Until the operation has exposed the real extent and nature you don't actually know with what you are dealing. (Even then, they seem to actually know so little). The next weeks and months will be difficult, but many have been there and survived, so don't get scared by the stats!

    Very best wishes,

    Isadora

    (4 years on from where you are - and fine!).

  • Thanks Isadora, I keep hoping this a just a nightmare I will wake up from x

  • In many ways it is and you will. At the moment it's probably about the worst thing you could imagine, but as you work through the reality, it will become different and you will find a way through.

    I xx

  • Dear Suzanne

    Firstly welcome. We're delighted to have you here - though of course really sorry it was necessary.

    First, the good news - you have been dealt with extremely quickly. Your pharmacy and GP service are spot-on and you're obviously in good hands. You've had a scan and there's a large mass on the ovary. It could have been much worse. There's absolutely no way at this stage anyone can make an accurate prediction as to the stage and grade of your cancer which might give an indication as to what will happen in the future.

    Most of us have been offered surgery to remove the problem bits, and a histology examination of these over a period of weeks will give a better picture.

    My first response is be kind to yourself and take your time to absorb all this. I'm rather horrified that anyone gave you this 1 to 5 year at best prediction. There are members of this site who have had very advanced disease and are well and active many years later with no sign of recurrence. Perhaps you asked the question 'What if it is a high-grade advanced cancer'. 1 - 5 years would be the answer. If I were you I wouldn't ask that question now because you're not in that place and you'll start to worry needlessly.

    Take time to absorb all this. Please don't go looking at the statistics because the stats are based on reports 5 years ago and outcomes are improving year-on-year. Added to that there are many different forms of this cancer and as you're unlucky enough to have it I'm hoping it is one that can be treated and managed - perhaps ad infinitum.

    I'm sure you'll get the same message from many friends on this site and it will be a comfort.

    Sending my warmest wishes.

    xx Annie

  • Thank you Annie, all I asked were best and worst outcomes, maybe she should of said I don't know yet :-)

  • Yes an experienced professional would have done well to reassure you at this time as you're going to be shocked and upset. The answer is 'I don't know yet'. That's a whole load better than what you were told. Apart from that they do sound a good bunch.

    Much love xx Annie

  • Hi Suzanne,

    I can't possibly see how you consultant gave you this information and be accurate, I also wonder how your GP would know it is 16cm I don't get it...but like Annie says the good news is that you are being dealt with quickly..you won't really have all the right information until after more tests are done and perhaps an operation...my advice to you is write all your questions down before your next visit... I am sure there will be people that can clarify some things to you. Best wishes x G x

  • Have just had a CT scan, neck, chest and abdomen,1200 images, so I am told. Tomorrow appt with surgeon, I saw URGENT highlighted in Yellow on the scan form, so yes they are moving quickly.

    Gwyn, my GP said she could feel the size and even put her hand underneath it, just adamant I must of been aware before, which I was not,

    Thanks for all your support x

  • I think you have a very good GP love x G x

  • she must have ultrasound hands! xx

  • I had a football sized tumour and just thought it was middle aged spread ! No in whatsoever. Diagnosed end of July. It has been a real struggle coming to terms with this. My first onco was also doom and gloom. Advice from Annie is spot on, btw.

    Jackie x

  • *no pain whatsoever

  • Sorry to hear you've joined us, but welcome.

    I had no idea I had oc, I'd been to my GP with vague symptoms, and told I had IBS. I went to the out of hours GP when I had painful bloating, constipation, wasn't eating as much but still putting on weight despite doing lots of exercise. After examining my abdomin, she gave me laxatives! Three days later I saw on of my own GPs, she sent me to A & E with a letter for tests. I had grade 3c oc.

    As I said in a reply to another blog, there are lies, damn lies and statistics! The statistics can be fiddled to read any way you like, but the oncologists still don't know why some people go into long remission, and others don't.in the summer I met a lady that has been in remission for over 24 years! That is the example we all want to follow!

    I am 44 next week, I was 42 when I was diagnosed, and have a 14 year old daughter. The way I cope is to try not to think too deeply, be determined that I am going to see her grow up and have a long, happy life, and, I'm going to live to be 97.... My Nana was 96 and my Gran was 95, so I'm determined to outlive them!

    Hope this helps

    Love chris

  • love your reply Chris. May your plans come true!!! xxx

  • Hi Suzanne! I still remember the feeling of total shock and panic, and it was ten years ago for me, just about now. I had my op on Dec 10th. Try to follow Annie's advice, it's spot on. Take things as easy as you can. Give yourself time. You will get through this stage of total disbelief and become calmer and more pragmatic.

    Get back on here whenever you want a bit of support, we'll be here for you. We all know how you feel. You will cope

    Love Wendy xx

  • Hi Suzanne

    You've already had lots of good advice, especially re the statistics. Just to say I can well understand the degree of shock you're experiencing at this sudden turn of events. Be really kind to yourself now and come on here anytime you need reassurance. The news may well turn out to be better than you might anticipate. I came away from my first meeting with the surgeon with funeral plans in my head and even though they found cancer it was stage 1a, removed during surgery and I'm now disease free.

    Keep believing

    Love

    Linda xx

  • Hi Suzanne,

    There is nothing more I can add to what has been said already by our wonderful bunch of friends here.

    On the positive side, I wanted to share my story - like you I had no idea I was growing an aggresive tumour on my ovary. I only went to the doctor because I was having heavy flash floods after my periods had ceased. And this type of abnormal bleeding had only happened about three times.

    I never had any of the other symptoms spoken about by our girlfriends, however once I was cancer free - strangelly enough I did, I do!!!!!

    Like you I have a very good GP - who referred me straight away for scans.

    I can re-live that day as clear as it was an hour ago. Now 2 years ago.

    I had my surgery 2 days after the diagnosis.

    My tunour wasn`t measured by inches or cent, but I was told it was the size of a small melon.

    My own mother died from OV in 1975, on her 47th birthday. She had so many problematic symptoms all in which was ignored and put down to the menopause. It wasn`t until she was seen by a locom doctor who diagnosed a large tumour on her ovary - just by examining her tummy and pelvic exam. How the other GP missed this he said was beyond belief. Of course in those days there were no scans, MRI`s or chemotherapy, 2 yrs later the cancer came back and she passed away after being ill for 6 months.

    I was only 16 so this has haunted me ever since.

    Thankfully times have come along way since 1975 and I am absolutely sure my mum would have stood a better chance had this happened to her in 2012.

    So, when I was diagnosed it didn`t feel like a death sentence, I was never told statistics until I asked, but thwn I asked they told me that a) high grade tumours are aggresive and more likely to come back, however, they are also easier to treat, so the statistics even themselves out between high or low grade tumours, I hope this reasures you a little.

    b) Although my cancer had spread, it was still contained within the pelvic cavity and I was able to have all signs surgically removed including part of my bowel, appendix and there were cells in my omentrum which was also removed (standard procedure, I think?).

    c) After surgery I was told that I have every chance of a cure. As far as they can tell everything has now gone and after 2 yrs since surgary I am as far as I know cancer free.

    d) I had 6 months of chemotherapy which was a safer way of mopping up any lingerring cells left lurking around.

    When I asked about prognosis, I was basically told the longer I can be cancer free, the better my chances of re-occurance.

    I was also told that 50% of patients are still alive after 5 yeras. This is alive, and/or cancer free, but we do need to remember all statistics are at least 5 years out of date and cancer research has come a looong way over a 5 year period and more and more ladies are suvivng this or living for a good length of time.

    The only time I felt really poorly with this was the day after my diagnosis and day before surgery. I can only be trully thankful I did not have to wait very long. I was also marked as an urgent case but this isn`t always as bad as it seems. In my case, I was classed as urgent because the cancer had started to break through and knowing it was aggresive meant that it needed to be out and treatment started as soon as possible to give me the best prognosis possible. In other words had they left me waiting the whole scenario would have been so much worse than it turned out to be.

    I also must add that my situation wasn`t as bad as they expected, they only realised this once they had done the laporoscopy (camera inside to take a good look around).

    We all know your fears and this is naturally normal to say the very least. Try not to think the worst. I hope this helps to ease your mind a little bit, sorry for such a long post and sorry to those who have heard this story from me a million times, you must be all yawning by now.

    Love with big hugs from Tina in Lincolnshire xxxxxx

  • Thanks Tina, I still am struggling to accept this, I am seeing the surgeon this afternoon, and today received cc copy of the letter sent to him, whcih states I have a 14m cyst with separations and a solid nodule on one side, will need immediate hysterectomy and both ovaries regardless of the CT scan, and that I am aware it's almost certainly cancerous. Was hard to read those words, but you have given me inspiration, thank you x

  • Hi Suzanne

    I am only 4 weeks behind you and really empathise with how you feel, I have had wonderful support already from lots of lovely people on here and can only reiterate what everyone says. I was also symptom free but within 48 hours of seeing an on call GP for a bit of abdo pain I had had surgery and am due to start chemo very soon. My local team at the hospital are all very positive and my OC is stage 4 with my lungs joining in the party. I do not intend to let OC get the better of me and I am sending you all the hugs I can muster - I have struggled a few times these past few weeks and still feel as if this is all happening to someone else. Keep in touch and remember there are lots of people who have very good outcomes and we will join them very soon. Xxx

    Amanda

  • Saw my surgeon today, who confirmed cti scan clear apart from cyst, egmented and mass within the ovary. He believe it is borderline/stage one, but to be sure has suggested surgery, complete removal/hystorecomy, ovaries and falloipion tubes removed, plus appendicx, amentum and poosible lymph nodes, he seems to want to remove the areas it could spread, am reeling from the size of this op, which will be within a week,

    Suzanne x

  • Hi Suzanne

    It was the same with me, but that was almost ten years ago now.I am still here, still well and enjoying life more than ever. The op was nowhere near as bad as I thought it might be. I just felt that I was in very safe hands and I received wonderful care and after-care at my local NHS hospital. I am still in touch wit them. You can see my story on my profile. When ingot to the stage you are now,I just wanted get on with it all get on with it all and get rid of those ***** cells. I hope that you will have good news after the op. if you use the search box at the top of the page and try looking at 'preparing for surgery' or 'hysterectomy' there are loads of bits of advice from past questions that may help you with the practical preparations.

    All the best, we'll be rooting for you

    Love Wendy xx

  • Thank you Wendy, opp is tomorrow xxxxxxxxxxxxxxxxxxx

  • All the best. If you can get some peppermint tea bags for after the op, I and a lot of others have found them very soothing on the stomach. Try not to worry, it's really not as bad as you will be expecting. All the best. Will be thinking of you and sending posivibes

    Love W xx

  • Madz, my thoughts are with you x

  • Meant to add my blood score was 13, no idea what that means xx

  • It's probably your CA125 result. This is a marker used for detecting ovarian cancer it it is not foolproof. Basically, a CA125 result of 35 or lower is considered "normal", but as a simple stomach upset can raise it, many oncologists do not consider it reliable. At my worst, mine got up to over 3000 last year, but got down to 10 during remission, so my oncologist considers it a reliable measure for me.

    I hope that answers your question

    Chris

  • Thank you :-)

  • Hi there

    Welcome and so sorry that you are going through this....I had a larger borderline tumour plus everything else removed nearly three years ago....it was a terrible shock .

    However the prognosis for this type of cancer is very good , no chemo or radiotherapy is usually needed, just follow up for 5 to 7 years.

    The operation is a big one but is probably far easier than you think.

    There is a really good forum called the hysterectomy forum where you will get lots of information about the op.

    Take care

    Love Charlie xxx

  • Hello

    I feel slightly envious of you going into shock. When I was given the likely diagnosis in April I just accepted it, though there was the very nice support person in the room and the box of tissues, neither of which were needed. The consultant commented on how calmly I took it. All along I've felt confident that with suitable treatment all would be well.

    Now I've finished chemo I've started wondering if shock and depression are heading my way. I'm sure it is better to 'do' shock and then move on to a brighter mode of thinking than to skip it entirely.

    As my mother would say if there was a bad patch to go through, 'These times will pass' and they do.

    Love Chrstine

  • Hi Chrstine my shock, was Day 1) the way my GP told me I had grafefruit sized tumour, and how could I not possibly of known I had no symptoms, other than a swollen tummy, which I thought middle age spread :-) day 2 ) ultrasound day 3) MRI Scan, day 4) meeting with consultant ao advise full abdominal hysetorectomy, removal both ovarie sfallopian tubes, appendix and odendum, so in 5 days from being well ( or thinking so ) to this. Day 6 )

    I envy your calmness and inner peace x Interestingly my blood was CTA125 is 13, so not even that was a concern.

    Suzanne xx

  • That's admirable speed to get stuff done and see people. It was worryingly slow for me 2 weeks to ultrasound scan, 2 weeks to see gynaecologist, 2 weeks to ctscan, 2 weeks back to gynae for result, 2 weeks to surgeon, 2 weeks to op and then 9 weeks before seeing oncologist and a further 3 weeks before starting chemo. Here one is transferred between 3 different hospitals and staff though they act as a multidisciplinary team which meets every Wednesday, but as all my appointments have been on Thursday there's always been a wait till next week.

    Try to be comforted at the way they've moved you through the system and getting you the treatment you need to restore your health. It will be tough, but not as bad as you may be expecting. I don't know your age and whether you have or wanted to have children which must be very hard if that hopeis stopped. As I'm 60 I'm fortunate that we had already done the child rearing bit.

    Thinking of you and wishing you some peace

    Love Christine

  • Hi Suzanne, my experience was very similar to yours. After seeing the GP, I had a scan booked for the next day, and I remember the morning of the scan, having a shower and thinking, this is the first day of the rest of my life - and it was. Three and a half years on, I"ve had a full 'debulking' hysterectomy, two more rounds of surgery, and 4 series of chemo. And I'm still here, working full time, traveling, my husband and I have just bought a house by the sea, life goes on, and these three and a half years have been very happy years - despite the nightmare, the recurrences, the chemo, etc. The worst parts have been the not knowing what was coming next.

    It sounds like you are in good hands, and that is so important. These days of uncertainty are probably the worst days you will face, things will get better once you know what to expect.

    Take care and good luck.

    Francesca

  • Hi there - know exactly how you feel as I had no symptoms other than a lost waistline which I put down to the menapause and AGE!! I had an 11cm cyst on my left ovary which turned out to be cancerous. That was in March 2011. Operation for total hysty in the June - all clear in Dec2011. June 2012 told it had returned and that if I didn't have treatment I would have 6months to a year!!! Transferred to Dr. Bannerji at the RM - marvelous place but doesn't srop you from worrying. It's like a cloud that never goes... keep strong in mind and body and just hope that all wilkl be well - but it never goes unfortunately. Thinking of you!! x

  • and me of you, we can beat this, I'm not giving up without a fight xxx

  • Thinking of you - hope the op goes well - good luck x

  • Update, had my op yesterday, full abdominal hysterectomy, tubes, ovaries, appendix and adendem( not sure on spelling) Came home today, had cut from belybutton down, feel a little sore, but otherthan that ok. Surgeon came to see me, to say the cyst was 20cm, not attached to anytthing, and even with the hard lumps, most probabily benign, but wont know until after biopsy option, is benign ( he thought on seeeing it ) borderline, and least likely malignant. I asked if it is malignant, what does that mean MRI clear, apart from cyst, blood 13, he said, probably nothing, just keep an eye on you. This was done via Private Health. What does keep an eye on me mean ? Just wait till it reapears ?

    Sue xxx

  • Crikey - full hysterectomy yesterday and home today! You are definitely a bionic lady and you've beaten the rest of us by at least 3 days. It sounds as though it's been a great success and you can look forward to a cure and just getting on with life after a big scare.

    I'm really delighted for you Sue and hope you rest now for several weeks. Don't overdo it!

    love Annie xxx

  • Hi sue

    Great the the op is over and you are now in the best place for you ...home.

    I had a borderline tumour and see my consultant every 6 months for an exam and ultrasound.

    She does blood tests every year. It is something I live with and so will you. The chances of recurrence are less than 5 per cent. She is 60ish and has never seen a recurrence, so fingers crossed.

    Love

    Charlie xxx

  • Hi Charlie, thanks for your reply, I cannot tell you how much better I feel, I can already feel my energy coming back, that huge growth was draining me, just didn't realise at the time. My surgeon said he may have over treated, but to me, I am relieved everything is out, am waiting for the results, but feel hopefull, as my surgeon has been removing these since 1975, so knows what to look for, the two hard 3cm growths he feels are borderline, so will wait and see, I am 51 and your story has made me even more hopefull, Sue x

  • Hi Sue

    Great that you are feeling so much better , as I did in the early days. However you must please please rest , you have had a terrible shock and a very considerable surgery , so take things very very easy. I wasn't told that the mass that was removed was other than a cyst for 9 weeks , something I still feel very very angry about...I hope you have an agreement with your doctor about how and when you will be told ?

    Take care

    Love and cyber hugs

    Charlie xxx

  • Hi Charlie,

    Thanks for your reply, 8/9 days, my consultant is going to call me. I have been very tearful the past few days, I think it's the shock coming out, as 2 weeks ago, I had no idea. The cyst, had two small 2cm solid areas, which is what I am waiting for results on, he said other than that it looked absolutely benign, which seems a contradiction to me.

    Am taking it easy, no choice really, the stiches go fro tummy button down, to ........:-)

    Love and hugs to you too Sue xxx

  • Dear Sue

    I hope you're feeling better day-by-day. It's all been a terrible shock and whilst it's good to be treated so swiftly and return home quickly I'd imagine it's almost too much to take in. I for one appreciated 4 days in hospital after a radical hysterectomy as it gave me a chance to chat to other patients in the same situation.

    It's vital you rest now - no lifting, ironing or housework for 6 weeks. Take time to take it al in.

    Love Annie xxx

  • Of course Sue, you are bound to feel very rough at times .Are you on HRT yet , as this sudden surgical menopause can be terrible. When your consultant rings you , you may want to consider asking him about it. You haven't got too long to wait , as these things go, and fingers crossed all will be well.

    I am fine now, as far as the OVCA goes, and I'm sure you will be too.

    Keep us all updated.

    Charlie xxx

  • Had a terrible time getting the results, pathology refused to tell me, surgeon would not take my calls, even though AXA pay him £200.00 a calll ! Eventually, he called me, after promising he would yesterday. Results are borderline or STA1, he wants more tests on the tumours, but almost shouted at me " you don't have cancer ". The private sector is all about invoices, no care for your fears or concerns, I have had full abdominal hysterctomy, ovaries, tubes, appendix and omendectomy less than a week ago. I felt I was a nuisance, asking for results he promised via phone yesterday. I am in tears all day and night, never again, healthcare or not, the NHS, clearly treat you as a person and not just a pain, when you don't understand, I asked what treatment now, he replied nothing,

    maybe see you every year or so, love Sue xxx

  • Hi sue

    Sorry that you are going through this , I had a BOT three years ago and have researched the treatment exhaustively. I am sending you a private message, please get in touch if you wish , but it s good news honestly .

    Chin up

    Love and hugs

    Charlie xxxx

  • Hi Aliddy,

    Benign tumours are NOT mailignant,

    Benign means NO CANCER,

    `malignant tumours are cancerous`.

    A stage one cancer is operable with no follow up treatments at all,

    Borderline means NOT YET cancer.

    This could mean that if it was left to continue growing it could turn cancerous at any time.

    A stage one cancer is a cancer in its very early stages of developement, stage one cancer`s are usually removed with no follow up treatments.

    The good news is you were sorted very quickly - the reason why you was not exactly given the best of news pre-op was because things looked a lot worse on the scan than they actually were.

    Really, you shouldn`t have been given any negative answers or comments until the consultant knew for sure what they were dealing with.

    Sometimes a scan will show cancer spread and when they open you up it is in actual fact contained. This kind of happened to me. From the scan they thought I was at least a stage 4, but I was in actual fact a stage 2c.

    The good news is, you have now had everything removed without having cancer, you can be sure now that cancer will not occur at all in the pelvic regeion.

    Remember this is very early days since your operation and however well you may feel you MUST REST, in about 6 weeks from now, it will have just been a very bad dream, you`ll be able to wake up as fresh as sunshine and move forward.

    Do take care - with lots of love from tina xxxxx

  • Thank you, so much for taking the time to write this, the good news is the cells I have are desparately needed for trials, so I have agreed to anything I can to help. Apparently it is very rare to find one like this, that is still borderline, post menopusal and 16cm in size, with two tumours. This has been a rollercoaster of ups and downs, I found out today they have removed my cervix along with the never ending other list xxxxx I just am struggling to take this all in, as we all are, Sue xx

  • Thanks for the update Sue

    Removal of the cervix is very much routine and I was told that, because of the borderline diagnosis, any female organs not removed in the first surgery would have to come out at some point. It also means that the risk of cervical cancer is take away and you have no more smears to look forward to ...not! It has had no ill effect on my sex life with my hubby by the way.

    Try to take things very very easy and let your poor little body heal, you have had a massive trauma , so rest as much as you can.

    Love

    Charlie xxx

  • Testin update. The full hystology was a very large borderline mucinous tumor. The rareness was due to the mucinous fluid that filled the tumour. Still having loo problems, urine hesitation. Was told by my GP no HRT as the risk of breast cancer was too high ! Saw consultant who disagreed and has put me on Testin 50mg and Estraderm 25mg. GP told me Testin is banned for females so cannot presribe it. So confused. I have never suffered body odur before, but now I am and it's very unpleasant, have been unable to find anyone else on the Testin gel. Does anyone on here have any experience of it ?

    Sue :-)

  • Hi Sue,

    I have only just noticed your update here (sorry) I am glad you posted it on a fresh blog as people do tend to miss it... The thing I find upsetting on this blog is Christine

    (Pixinafix) replied to you further up... and she was so upbeat.. but now she is no longer with us as she died in February... such sad news for us all..

    Love x G x

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