Still awaiting outcome

Hi I'm a 33, mum to 3.

I had a ultrasound back in July due to constant excessive bleeding and they found that my right ovary was enlarged.

I was given an emergancy gynae appointment a few days later which unfortunately for me was a waste of time. The consultant sat for 20 mins telling me about my ovarian cyst (which I knew I didn't have) and just as I was about to leave the room realised he was looking at someone else's results!!!

Still he felt that there was nothing to worry about, scheduled me an appointment for a review on 2nd December and sent me packing with some birth control to 'help' with the bleeding.

I left very peed off that I had no answers to why I was bleeding so badly, why my ovary was enlarged and why they felt the need to rush me in for nothing!!!

I spent the next several weeks going backwards and forwards to my GP with pain and concerned about the bleeding. He just kept giving me more and more medication and said he would try and move my appointment closer.

A few days after my last trip to him I received a letter from the hospital to say that the Radiologist had been very unhappy that I was being left and was insisting I have another ultrasound and should they get no indication from that why the ovary was enlarged I would then require an MRI.

I had the ultrasound at the beginning of October. The ovary had increased in size and was then measuring around 9cmx8cmx6cm and they said it had hetregenous echo texture ? Also my endometrium was thickened to 17mm and I had been bleeding for 6 weeks at that point so there was concern with that.

I see the consultant a few days after my ultrasound. He couldn't give me any ideas as to what/wasn't causing to problems just kept repeating that it won't be anything serious as I was 'too young' and I asked it the 2 were linked he said no that they were 2 separate problems but there was a very rare type of tumour/cyst which can cause the bleeding but I won't have that as its too rare and again I'm too young!!

Sent me away telling me to go to my GP to get a coil fitted and said he would try and speed up my MRI.

I went to my GP to discuss having the Mirena put in and he was shocked, point blank refused to put one in until we had got to the bottom of the problem and also said he couldn't understand why the consultant would even suggest that as I was waiting for an MRI and some have to be removed as contain metal.

I had to wait over 6 weeks for my MRI as they couldn't see me earlier as the consultant had just put it through as a normal wait. I rang the consultant secretary to ask why I had to wait so long and she just said they had tried to get me and earlier one but because the consultant hadn't put it through as a potential cancer 2 week wait I had to wait like everyone else!!!!

So I had my MRI on the 15th November and am still awaiting the results.

I rang up 2 weeks ago and his secretary was abit rude. Informed me that the consultant had no further plans to see me in clinic and said she would get him to write to me with the results.

In that 2 weeks I sat waiting for the letter, nothing came and I even contacted my GP but he hadn't had anything either and said give it to the end of the week and he wouldn't contact them.

I received a phone call from the consultant on Thursday (8th December) apologising for the wait but they are confused still about my results. They were not what he was expecting and he said that the ovary looks very abnormal ontop of being enlarged so my results were being reviewed in a meeting with some specialist to see if any of them can figure out what's going on. I assume that he meant an MDT meeting? That meeting was scheduled for yesterday (13th December) and have yet to hear anything as to the outcome.

On the phone the consultant seemed to back track on everything he said to me at our previous appointment. Said that he had been wrong to assume I was too young and that he thinks the ovary and bleeding problems are likely to be connected yet still no answers to what is or isn't the problem. I did ask if it could be something more serious and he did say that at this time they can not rule out the possibility and the only way they would know for sure was by testing it.

So I am currently sat awaiting a phone call. But should it be worse case scenario how long should I expect to wait before they operate??

Sorry for the long post x

24 Replies

oldestnewest
  • OMG that's appalling and I hope you take this further and put in an official complaint.

    Remember this is all 'Ifs and Ands' and hopefully will be not needed but you sound like the sort of person who needs the knowledge to prepare themselves, just in case! So depending on the result and if it is 'worst case scenario' a treatment plan will be tailored for you. They may want to do a biopsy first and they should discuss all the options with you. It is as much your decision as theirs and a lot will depend on the type.

    The options are usually:

    Chemo/Surgery/Chemo

    Surgery/Chemo (if required) etc.

    Chemo/Surgery

    All UK hospitals have a timescale (pathway) which they should stick to and for most of them it's 31 days from confirmed diagnosis to start of treatment. You should be able to find this info on the NHS webstie for your hospital.

    Keeping everything crossed for you and hoping they don't keep you waiting too long.

    Best wishes

    L4W

  • Hi Mich,

    I'd like to say that I can't believe all the delays to your appointment, but I kind of can 😕 Being 'young' does seem to mean that you can't possibly have any of the worst case scenarios, but rather than simply ruling it out from the outset they fob you off a bit with other things. Luckily, not all Drs are like this, by any means. I was also not considered to have OC because of my age (38), but once my GP got wind of something more serious (after a bit of pushing on my part), I was zipped through the system and diagnosed with stage 3 OC within 2 weeks.

    As for your question about how long before they operate - I'm afraid I can't answer that. I guess it depends on what they think it is. I hope you get some information and are able to agree the next steps with your consultant quickly.

    Yosh x

  • I've just had a phone call from the hospital. I've been referred to the head of gynae oncology so guess it's not good news. The lady on the phone was shocked I hadn't been informed of the meeting outcome yesterday and obviously that I wasn't expecting her call. She said she isn't allowed to give out any information to me but will speak to the consultant and either he will phone me or a specialist nurse. I have an appointment booked with him for next Friday but I said I did not want to wait that long without knowing anything as I've waited long enough and she completly agreed. I'm off to the hospital this afternoon for a series of blood test so they have them ahead of my appointment. Not sure what they are!!!

    I'm seriously considering taking legal action as feel I've just been fobbed off because of my age!!!

  • Hey Mich,

    Sorry to hear that but just bear in mind referral to Gynae Onc does not necessarily mean cancer and you are much better off with a Gynae Onc than just a Gynae as you will get the proper tests etc now. I remember when I realised that I was going to see a Gynae Onc I got an awful fright but once they see something out of the ordinary at all (mine was a complex cyst but it was large at 16cm) then they will refer you to one.

    They will do a series of bloods but the main one will be the CA125 which is the marker for OC. The normal range for this marker is between 0 and 35 and it is often used as an indication that OC is present HOWEVER it is not always accurate as some women have normal CA125 and are diagnosed with OC (such as me) and others have raised CA125 and are not diagnosed with OC, apparently there are a number of things that can cause a raised CA125 including endometriosis it would seem.

    This is all very scary for you at the minute and I remember it very well. I was 45 when diagnosed, a bit older than you but still considered young for OC. I was terrified but once I had a plan in place it was easier to deal with and as I said it may not be OC.

    I really feel for you at this point in time as its very stressful but please remember that no matter what the outcome there are options!

    Mind yourself and keep in touch!

    Dx

  • I had the CA125 done back in July which was normal and another reason why my consultant dismissed anything more serious.

    I had surgery back in 2004 for removal of 2 large cysts and know I feel very differently now to then and have had an overwhelming sense of urgency not to leave it alone. Hence why I've not gone away quietly lol.

    Just relieved that now I'm being taken more seriously.

    I still cling on to the hope that it is something else but I've never felt that it's was anything other than something more serious.

    The bleeding and how I've been in myself told me something was very wrong. I guess I shall just have to wait to see.

  • Good for you Mich instinct is rarely wrong! If it wasn't for my instinct that there was something wrong and a GP that listened it would have been a different story for me! I am glad you are getting it sorted now!

    Dx

  • My friend had her cysts removed by an oncologist and the ovaries were both benign in the end of it all.....mine was unfortunately done by a regular gyne and mine is cancer....I was not properly operated on in August and am now terrified that they didnt do a good job. they couldn't get it all because of how my cyst/tumour presented (wrapped around my right ureter) my uterus had fibrous 40mm thickness....all my girl parts were benign aside from right ovary and tumor.....hopefully yours is benign and caught early. my ca125 was 57

    I'm glad you are seeing an onc just in case....get that ovary out!!!

    It's better to be safe than sorry like me

  • I sincerely hope someone calls you back today and you can be seen sooner. I don't know much about what the PALS service in hospital does, but maybe a complaint into them will help speed things along given the terrible delays so far.

    Yosh x

  • As D has said the fact that you've been referred to see the head of Gynae oncology,does not mean that you've definitely got cancer.

    I was referred from one (General Gynae) hospital to the main ovarian cancer hospital and also to the head surgeon consultant Gynae but it was not until the full pathology report came through that I was diagnosed with cancer. I had a large complex mass, a cyst too, plus lots of other indicators that 'said cancer' but my CLA 125 was in the normal range and until they operated and did the full tests no one would confirm.

    A little longer for you to wait I'm afraid! We learn to deep breathe, to be positive, to be assertive, to ask ask ask. !!!!keep us updated

    Clare xx

  • You have received such appalling treatment age should never be a factor ... putting that aside at least someone in the medical profession was fighting for you... thank goodness for radiology ... I too had constant bleeding for two months but as I am considerably older than you I just thought it was menopause ... my stomach was very distended I just thought I was getting fatter... have you had any blood tests at all ?? Ca125 can be used as indicator for ovarian cancer but it's not specific so can be raised with other underlying causes such as infection or inflammation... definitive diagnosis is often made after surgery but I was initially given a treatment plan based on suspected cancer... op then chemo .... I've got my fingers crossed that they get in touch with you soon... I was seen within a week after mdt meeting big hug and best wishes ... I found that the pain could be quite debilitating before my op but once the little sucker was removed things became easier ... once you have a treatment plan in place they should become easier for you too 😃

  • You sound like me

  • Hello Michcambs83,

    Like the other ladies I am very sorry you have been treated so shabbily unfortunately its not uncommon when it comes to OC. I was very lucky and had an excellent GP! Remember too however that the vast majority of these things are not sinister and hopefully in your case it wont be but if it is you have come to the right place and will get loads of support and help here. I can honestly say that this forum was one of the main reasons I didn't fall apart from an emotional perspective, having access to so many women who can totally and completely understand what you are going through is invaluable!

    I wish you the very best of luck with it all and as the other ladies said try not to panic as no matter what the outcome is there are plenty of treatment options and once you have a plan in place you will feel much better about it all. Wishing you all the very best!

    Dx

  • So I've just got back from the hospital and while having the bloods my new consultant can to see me very briefly and said they suspect it to be a rare granulosa cell tumour and will discuss it in more detail at my appointment. Also apologised that he can't see him until then as he had to cancel his clinic this Friday otherwise he would have seen me then. So atleast I kind of has some relief in knowing something rather than nothing. I feel a bit relieved and slightly happier knowing my concerns were founded.

    Also the consultant was very nice and feel at lot more confident in the knowledge I finally have someone who seems to know what they are doing.

  • I'm sorry you have had so much difficulty getting to this stage, but at least things are moving now. It is always a relief to know something is being done, & will be more relief when you know what is the problem. Please keep in touch & let us know what happens. If it is a granulosa cell tumour, there are a few of us around. Mine was diagnosed & removed at the beginning of 2008. I was told by my gynae onc that the outlook was good, though I've been unfortunate that mine has recurred. I wish you well. Di

  • Hi there, you have been let down in so many ways. We don't go to theses people for the fun of it. We know when something is wrong. Why on earth do they behave as if their brains are in their backsides!!! This makes me so cross, its your health & your life & they are taking the pi*s!!!

    I am sorry for coming over a bit over the top but no one is too young to get oc. All the best let's hope its nothing to worry about. Take care love Cindyxx

  • You've been grossly mucked around and I'm angry for you!!! My tests started with my first CT scan on 21st Jan, followed by two ultrasounds, pelvic examination, lots of blood tests, a contrast dye MRI then a contrast dye CT, reviews by the MDTs - I was in Surgery on 8th March this year and cancer (clear cell) confirmed in a telephone call from my consultant oncologist surgeon on 17th March. I then started chemo on 4th April

    I just hope you now get swift progress, write down all your questions, take someone with you, ask them ALL and get your friend or whoever to write down the responses. You will find that we need to sometimes be assertive but I'm so sorry you've found that at that start.

    Let us know how you get on

    Clare 💐💐💐

  • I have been reading this and quite frankly I am appalled at the way you were dismissed previously, Have you got a definite apt with the consultant and if not why not? Keep ringing until you get an alternative appointment. I would be indeed writing also to the Hospital Board to complain about the way you have been treated and kept uninformed. No lady is too young to have Ovarian or Womb Cancer and no doctor should take this attitude. A good rap on the knuckles is needed. So at your next apt, ask for a date for surgery, what type you require either keyhole or total hysterectomy, Date you receive tests of biopsy taken at that point and time scale for further surgery or treatment of any kind. Be more assertive and perhaps bring someone with you. All the best to you

  • Consultant has just rang to say 2 of my blood test results have come back negative. Still awaiting 2 others. Do I assume if all come back negative it's unlikely to be anything serious?

  • Hi I'm just really feeling for you - it's so tough when all this comes out of the blue and the health service isn't responding as it should be. I always found ringing the nurses at Macmillan and Overcome an absolute godsend - they always helped me practically in terms of clarifying the issues and the best way forward to deal with your health professionals, as well as emotionally and psychologically. Wishing you the very best with this, with clear and speedy action. Sounds like the consultant you're going to see has a much clearer idea of your issues and has some compassion and empathy.

  • I am delighted that some bloods are normal, I think Grace has a good point, get all your information together and ring the Ovacome Helpline or see if there is a Macmillan Nurse in your hospital who will go through the results with you, I would also ask the consultant if he needs to put a plan in place for you or if he is going to recall you in a few months.

  • I have just read your posts and all the thoughtful responses in horror. Why oh why are we fobbed off like this by our doctors. Unfortunately 33 is not too young for this disease. You are young and have 3 kids to look after but you and your GP pushed this forward. I think your insistence and perseverance mean that if this is cancer, you pretty much singlehanded brought a diagnosis in 2016 rather than in late 2017.

    I also imagine that the senior lead consultant will be appalled by your treatment. drip feeding you results is understandable but who knows what they really mean. You need an appointment with him soon.

    I can only add how impressed I am with your perseverance. If this proves to be ovarian cancer (and it may very well not be) then the earlier it is diagnosed the better. Pushing your doctors so hard means you have done this.

    Love, T. X

  • I always despair when I hear the words 'you are too young' and especially from a gynaecologist. I just do not get it .

    My friend was diagnosed at the age of 28 years and this was in the early eighties.

    I do hope that everything goes well for you and that you have a lovely Xmas with your family .xxx

  • Please see a gyne/oncologist ASAP....not just a gyne

    Did they do a ca125 blood test?

    If not get your gp to order it immediately and get it done. mine cost 30 dollars canadian

  • Nevermind. ...I see that you are in good hands now

    At least you have been caught early...my ovary had extensive rupture. be well xo

You may also like...