Desperately looking for advice. Have asked a question on this site before and the response was so helpful I had hoped I could tap into your wealth of experience again. In short I am 42 and have had intermentsrual bleeding since October 11. Several visits to GP and told to wait wait wait eventually given appt for TVS. This showed 4cm cyst with internal echoes ?endometria ?heamorgherric?? and endometrium lining of less than 1mm. Gp did ca 125 which came back at 145 so had urgent referral. Saw registrar who talked to me about endometrioisis, laporoscopy and how I would feel about hysterectomy etcetc. Come back in 2 weeks to see consultant when would make a plan. Saw consultant who totally dismissed cyst Ca 125 level and said change coil to Mirena!!! I pushed for a biopsy and he agreed to have done when coil changed and another ultra sound in 2 months. Anyway since then my bleeding has got worse and worse to the stage I am bleeding all the time with sessions every other week where v heavy. This makes no sense to me if lining of womb is negligible. I know that bleeding is not the normal symptom of OC but believe is can happen. Anyway because my symptoms have got worse I have managed (through being a complete pain in the bum probably) to get another TVS on Wed followed by appt with consultant. I had a message from the consultant via the secretary.. "have a think what you want him to do!!!!!!!"
I feel so let down and a bit bloody scared that something missed. If the cyst is still there should I be insisting on laporoscopy. Dont want to waste this appt and dont want to carry on like this. Feel nauseous all the time exhaused and pain ache. Ca125 had come down to 76 but even so is twice normal. To at least find the casue of raised ca125 would be something. I have never had any gynae probs before. Period not painful regular as clockwork.
Thank you
Sarah xx
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gromit
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Firstly, I am so pleased that you are pushing, pushing, pushing at this to get it sorted out. I know it is very difficult but keep on at it girl.
I was diagnosed in 2009, age 46 but had been experiencing symptoms for about a year before. My main symptom was irregular, heavy bleeding - I got to the stage where the bleeding was constant. I would say that with hindsight I was experiencing other symptoms of ovca but didn't recognise them.
When I had my initial scan I was offered a mirena coil which I refused. I couldn't say why I refused this but my instinct told me it just wasn't the right thing to do. As my tumour turned out to be highly hormone receptive it was, for me, the best decision I could have made. The consultant I was seeing was taking the watch and wait route and didn't take a CA125 measurement.
If you have been bleeding heavily you could be anaemic and in need of an iron supplement - this could be part of why you feel so tired.
The other point you may want to consider is that you can choose who you see. I lost faith with the consultant at my local hospital who was very dismissive of my concerns and his line was always "it's your age" . Finally I insisted that I was referred to another Consultant (I used Dr Foster drfosterintelligence.co.uk/ to check this out) and at that point things got much better.
My Gyn Onc is very clear that a full diagnosis of the nature of a cyst cannot be determined by scans/ca125 alone and if you look for NICE guideline (just issued and I think there was a thread on this site about them) you should be given an urgent referral for this to be investigated. The only criteria you don't meet is that you are not yet 50 years old. However, it may be worth waving these guidelines under the nose of the consultant.
Have you spoken to the Ovacome nurses. They are a good source of information, advice and guidance and may be able to help you develop a good plan of action and a list of questions to ask at your consultation.
Keep your chin up with all of this and I hope that you get some peace of mind quickly.
Thank you so much for taking the time to respond to my question especially the bit about your instinct playing a part in your decision making. I know that this is nothing to do with coil and a Mirena is not the answer. If my symptoms had stayed the same - bit of spotting between periods or heavy painful period as per endometriosis - fair enough. Since October started off with a kind off non offensive watery discharge which then turned to some bleeding in between periods to heavy bleeding two or three times per month, lighter bits in betweeen. Never feel pre- menstrual. Used to know when I was due on sore boobs etc but none of that now just aching back all the time.
If scan shows that cyst still there should I insist on it being investigated even if he dismisses it. Was your cyst on scan very large??
I had bilateral cysts - the one on the right was over 6cm and the one on the left about 1.5cm. My understanding is that usually bilateral and a cyst over 5cm are a good enough reason for further investigation. I'm not sure about the accuracy of that statement but I seem to recall reading about it following diagnosis. Perhaps someone else may be able to advise about that particular point.
Quite often a cyst can resolve itself but if it is causing other issues it should be looked at again. It is very hard to advise you what to do because I am not a medical expert - I would try to get some advice from someone who has some medical knowledge and who can give you an objective rather than emotive answer.
This is a bit of gross point but if you are passing large clots I would try to catch one and take it with you to show the medics what you are experiencing. The clots I passed were, on occasion, about the size of a small saucer - when I said this to the first consultant he looked at me with total disbelief and I wished I could have shown him the physical evidence. I also found on the internet a sheet where I could record how heavily I was bleeding - I did this for a couple of weeks - again taking evidence with you is always a good thing because you are not relying on memory and it doesn't get forgotten during the course of the appointment.
I am sure there will be others that can add to this thread and give you more advice and information.
Thanks again. No clots just fresh pink blood (isnt this a lovely conversation!!!) I have kept a note of each day over past three months as I noticed things getting worse according to how heavy on each particular day!!!! You are a star for giving me this input xxxxx
firstly I want to say "bless you" - its so hard to hear stories like yours when ladies are not being investigated `like` urgently, especially when not many of us are diagnosed at stages 1 or 2, well, now we know WHY!!!
I hear about ladies being fobbed off as it being anything other than OV CA because of their age etc.
I am happy to hear that you are concerned enough to take action for yourself and please do continue to do this.
My own mother had the exact same symptoms as you in her early 40`s, she was seen by complete accident by a different Gp while hers was on holiday and he was worried enough to refere her to a gyneocologist. This was almost 40 yrs ago so there were no blood tests to measure protein levels which are known to sometimes raise with OV CA or scans but something was felt durring an internal pelivc exam. Sure enough Mum had a fibroid and this was the explanation for the heavy bleeding. At the age of 42 she had a hysterectomy and this was when the Ov ca was found. Taking it into consideration there was no such thing as chemotherapy in those days, she sadly didn`t make it past her 47th birthday which was the very day she died.
Because of this I became anxious by the time I approached the menopausele age, so when I started to get flash flood bleeding inbetween periods at the age of 52 I took my concerns to my GP.
However I had asked about a hysterectomy from the age of 40 onwards, once I knew I no longer wanted to extend my family. I wanted this to prvent the OV Ca but no would listen. I was simply turned down over and over again - I even suggested to go private but I couldn`t find a surgeon in this country who would even begin to entertain it.
Anyway, going back to the age of 52, My GP (a female - I`m sure this helps) Understood my concerns and referred me to a gyneocologist straight away. After I explained my bleeding to him, he shrugged and said it was very likely to be down to the menopause. My GP had insisted on an internal ultrasound so he said he would do that for me but it was for peace of mind more than anything else.
I asked him if he`d consider doing a hysterectomy anyway and explained my fears and told him the story of my mum. He shrugged and said that because there was no other family history of OV CA on my maternal side, it was unlikely it would be a genetical thing and he turned surgery down flat.
He proceeded with the internal ultrasound and he went very quiet after a short while he told his colleagues to take a look. He reassured me the the cyst I had found on my own cervix was benign but he didn`t say anything good or bad about the rest. He then switched off the machine and told me that he would be performing my hysterectomy after all. I asked what had changed his mind and he simply told me that there were some cysts on my ovaries.
He asked if I could wait at the hospital until he could find a slot for me to have an urgent CT scan that afternoon. It was then and only then he sent me for a blood test. My testing showed up at 1,800.00 but I wasn`t told that by anyone. I had never heard of a CA 125 test, I was in the dark about what it meant and how it worked.
After the CT scan I was told to go home and wait for the results. Less than one week later Peterborough city hospital in cambs phoned to tell me that an appointment had been made at the bigger hospital (Addenbrookes in Cambridge) for the following day. This is when they told me I had a massive cancerous tumour that had spread to my bowel and omentrum. I was booked in for an urgent laporoscopy 48 hours later.
When I came round form the operation I was told that a full hysterectomy had been made. I had a piece of my bowel removed , my appendix and omentrum.
I wasn`t told until much later that a second primary cancer had been found in my uterus (it was this tiny succker that had actually caused the bleeding so I kind of owe my life to that because I had no symptoms of the bigger picture).
After this, I was referred to geneology and i and both my daughters were then tested for the faulty genes, we all have inherrited the faulty braca one gene so at least now my daugthers have a chance, they will be listened too in times like ours and they will be screened regulary for breast cancer and have options of double mastectomy`s with re-construction and also hysterectomies after they have finished having babies.
Why oh why don`t the medical proffession listen more to us - I`m sure we know our own bodies more than anyone.
I know that my own cancer would have been avoided had I had the genetic screening when I asked about it, I would have gladly had surgery and all this could have been avoided.
So, Sarah don`t ever be fobbed off, push and push to be heard - this is your right and if you so wish use my story as an example. My cousin on my fathers side of the family has and now action is being taken.
I also must add, that my brother was diagnosed with colon cancer at the same time as me in 2010, he never made it but his cancer was NOT genetically related just sheer coincidence.
To reasure you a little, but not to divert you from your own natural instincts - sometimes a benign tumour/cyst gives bigger symptoms than a cancerous one, my moto is get rid of it whatever it is.
Best of luck sweet lady - I hope I don`t sacre you, I just need to spread the word that its really up to us to take charge of our own health and never worry about being a nusance. One thing someone said to me a while ago, your GP, consultant or nurse is paid to serve us, they are in this proffesion because this was their choice.
I was also diagnosed with a high grade cancer grade 3 - it was caught at a stage 2c. My oncologist has told me that it may never come back and they are hopefull for a cure. I know some people say on here that there is no cure for OVca and this alone can make us all anxious because we will indeed feel doomed from the start but there is hope for us if we catch it early. So catch this sucker early if its there and if not avoid it by having surgery anyway, insist on it!
Lots of love with big hugs from little ol me - sorry for the long history, just hope it helps our readers a little bit.
Thanks also for your story. Overwhlemed by this site and the lovely people on it. I am someone that is unconfrontational and doesnt make a big deal about anything unless feel really driven and for some reason no matter what the gp and consultant has given as explanation to my symtoms i have never felt satisfied hence my going to the "manager of womens services" at my local hospital to explain I want satisfied and my sympoms were getting worse. She was a lovely symapthetic lady who rang me back the next day with a scan and appt on Wednesday instead of waiting till 31 st AUgust as arranged by my consultant. I just dont seem to be able to let things lie..how can they have the mass on ovary raised ca 125 (albeit only slightly in the whole schmeme of things) and the constant bleeding and not thing I need a bit more of a look at????
I hope you get the investigations you need, I had bleeding in between periods prior to my diagnosis, and I didnt go to the gp- wish I had and then pushed for investigation- I didnt even think of cancer at the time, just thought it was the start of the menopause- doh, and at 44!
my gp eventually sent me on the fast track referral to the local hospital after 6 months of going to him with nondescript symptoms ( tiredness, indigestion, acid) after a CA125 test which came back at 65. I was told there that I had a cyst and it would be operated on in time!!!
I ended up presenting myself at a&e as I was in so much pain and 4 days later had a total hysterecomy and diagnosed with stage 3a oc.
Push push push for investigations, dont stop till you are happy with the input you feel you need- and deserve!
Thank you Sue All this info is what I need to push for further investgations. As i have said before nothing any GP of consultant has said thus far has sat right with me. " It's probably this, it's probably that" isn't really enough is it...I need evidence to confirm what is causing these symptoms.....
You take care and I will update on Wednesday. This thread might help others in the future whether I have something sinister or not!!
Sarahx
Hi Sarah,
I am sorry that I can't be much help... butsending you love and best wishes...
I had constant bleeding post-menopausal and even after their found the cyst through TVS not much action until I went to A&E one evening. I'd nag them to be seen again .
Good Luck
Anne x
PS I felt exhausted by it all and I bet you are too- sending you a big hug!
Update ladies!!- Been for scan today followed by appt with same consultant as previous. At first appt he told me he fully thought cyst would have disappeared within couple of months. Scan shows cyst still there and grown little bit (about 5mm). Previous report said ?endometria?heamagerric (spelling??) Now they have put ?dermtoid. Heard the radiologists talking about calcified areas within. Ok consultant then asking what would I like him to do?? !!! He feels my bleeding and the cysts are not connected but couldnt say for definite. Also no conclusion as to what cyst really is unless removed and look under microscope/. Ok.
The long and short of it is I was basically made to make decisions of what happens next and beause of the bleeding and because of the lack of explanation and the fact ca125 still double ( but yes fallen since 1st test) I have asked to have cyst removed and he will do a hysteroscopy?? at same time to have a look around.
Hello.. cyst not gone away, raised ca125, different opinion today of cyst to opinion 2 months ago I assume this means cyst looks different now, and pretty much 3 out of 4 weeks per months some level of bleeding...did I really have to make that decision or is this a new modern take on medicine?? let the patient decide.
Have I made the right decision? It is only through info from lovely ladies on this site and advice that I even have the knowledge I have.
Any similar experiences or thoughts would really help.
Should I have asked for another ca125 ( i meant to ask to confirm trend.). I have had 2 with results of 145 then 76. Not sure how long wait till op but obviously not being done as urgent.
Confused but feel little bit better as something being done.
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