You may remember me posting on and off.. docs done a routine CA125 1st August due to symptoms I presented with... called day later as this was in 70s.. Hasan ultrasound and TVS on 14th August. this shown a large cyst on right ovary although specialist nurse at time wasnt over concerned about cyst said as I was on the urgent pathway she was going to keep It that way and recommend an MRI and further gyny appointment with a consultant.. Had MRI on 18th and Yesterday seen a lovely consultant.. She as then floored us saying they have found multiple Large COMPLEX cysts and the smallest being 6cm ranging to around 9cm. Its without a doubt she said I have to have surgery but due to the nature of the cysts they cant tell at present if cancerous. They have now referred me to an oncology team at a local womens (really good) hospital. I have to be discussed at an MDT meeting to decide what type of surgery and when and only then will I have either a definitive diagnosis of OC or if it all relating to something else.. She also took further bloods yesterday which she referred to as other cancer markers.. but my head being battered not expecting any of this I didnt really ask what they were I just noticed 3 different things on the blood form.. I'm now due back on the 11th September to find out what's happening next etc... Has anyone experienced something similar at all?? She was quite straight up with us and said she is concerned and it is all indicating towards OC but until this MDT they will look at everything and go from there. x Thanks for reading x
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I am sorry to hear that linzilou78...not the news you wanted. The process of diagnosis can be drawn out...so MDT will probably agree on a timetable for surgery but they may not, even at this stage say ‘yes it is or no it isn’t ‘ just to warn you. As it sounds like they will operate anyway, they may want to wait for the histology on your cysts to be definite. My lot were sure it was OC but as I was having chemo first, they did a biopsy to prove it was cancer ( reassuringly they are not allowed to poison you without definite proof).
All this is not great for us as patients because we want to know now... not in another month.
Try to think of this time as useful in order to get prepared, get your head together and rally support. Fingers crossed they will still find it is benign but if not you will be ready. xx
Hi... thanks so much for replying.. the waiting is horrendous.. and we really thought after MRI we would know... then another 2 week wait for next steps... its torture. I personally think I wont know till after surgery... Surgery has already been confirmed.. and will likely be within 2 weeks of mdt apparently.. so I reckon they'll use that to b sure xx
Hey! Sorry to hear you're going through this, the waiting and uncertainty is so horrible. My ultrasound and MRI also showed a complex cyst. When I was referred to the specialist, it was unknown if it was due to endometriosis or cancer. I opted for the fertility-sparing laparotomy to remove my right ovary and fallopian tube, with staging surgery, rather than having the minimally invasive option, then needing a second surgery for staging (the surgeon let me choose). For me, the only way to know for certain what was in the cyst was testing from surgery. I'd recommend making a list of any questions you have in the meantime, before your MDT.
Are you being supported by friends and family? It's so difficult facing these investigations and the fear of it all. xx
Hi thanks for replying.. That's my issue they cant seem to determine or wont commit to if it is ir isnt.. Hence the MDT... They will then decide what type of surgery is best at this stage and hopefully be able to confirm one way or other... I'm happily married 2 kids 11 and almost 16 together and very high risk anyway due to family history. I'd b quite happy for them to take it all away so I dont have to ever go thru this worry again x
First Ovarian cancer is hard to detect, but a high ca125 is a sign. Normal is 0 to 30, most of us our OC, was caught late,so our markers were in the high hundreds. Your being 70 is a good sign. It could be something else. Prayers for the best.❤❤🇺🇸Liz
Sorry to hear this, you must be feeling poleaxed... The one good thing is that you've been shunted through to the specialist very quickly and will have some idea of how they will be proceeding shortly too. If they can't do a full surgery at this stage, they will need to biopsy one of the cysts in order to determine whether they're sinister or not, and possibly offer chemotherapy if necessary prior to a surgery later on. Hopefully, though, these complex cysts will turn out to be benign, and you won't need to continue along the road we've all had to take, one way or another, but if the worst is confirmed, know that you will get through it, daunting though it seems. There's lots of support and advice available from the ladies on here, and remember you can always ring the Ovacome help line for extra advice.
Your in the system now ... things/ appointments will come thick and fast!
My blood markers were very high at the GP ...referred for Chest X Ray then CT scan then MRI biopsy within a fortnight! Results showed a 9cm cyst with was cancerous on my one ovary with lots of spreading nodules!
OV cancer and first chemo (to shrink the nodules and mass) within the next week!
It all happened so quickly!
Now on Chemo Round 3 yesterday with .... if it’s done it’s job and my Ct Scan the week after next show the necessary shrinkage, the surgeon may operate ... a debunking operation I think!
I'm so sorry hear this.. I do hope its caught early for u.... who discovered it was cancerous? That's the issue I've got at moment . no one will seem to commit if it is or isnt.. I find out on 11th after theyve had an MDT meeting what route they taking regarding surgery xx
The tests and the waiting--they need to teach us how to deal with that as much as we learn how to deal with OC! When I was first being diagnosed and my ca125 was very high, the oncologic surgeon said they had to rule out other types of cancer to know which one I had--that before surgery (or a biopsy) they cannot know for sure even if it points to a certain kind. So they also told me they had to do tests for all other types of cancer that might show a higher ca125 (or other symptoms I was having) and one by one I would get a call saying "this test was normal" (or some word like that that left me unsettled and I would say "you mean negative?" and she would say "no, normal" which after the third or fourth call, we understood to mean its not THAT type of cancer. It was fast though--I think they went through all the other testing within a couple of days. So they ruled those out but would not commit to OC till my surgery even though I think we all knew that is what it was. Sorry you have to go through this and hope the time goes swiftly for you to get the answers you need. oxoxxo Judy
I am sorry you are having to wait for a confirmation of whether your cysts are cancerous not. Unfortunately, it is not a straightforward process so you will have to be patient. The main thing is that all your results are going to be discussed at the MDT meeting where a number of professionals will decide what is the best option for your treatment. I went to my GP with symptoms of ovarian cancer in Oct 2011 and my CA125 came back at 63. Despite being referred to a gynae oncology unit at my local hospital and having had an ultrasound and 2 MRI scans I got a diagnosis of ovarian cancer after 7 months. This is because nothing showed up on the ultrasound scan and MRI scans. I was referred from gynae oncology to gastroenterolgy because my CA 125 was rising but nothing sinister was seen on the scans . I was then referred to haematology because a growth was seen on my lymph nodes on a CT scan that had been requested by the gastroenterologist. I was eventually referred to a specialist hospital and given a diagnosis of stage 4 OC n May 2012. You can read more in my profile. What is it that you are concerned about or what is not clear for you at the moment? You are obviously in good hands since they are doing all the right things with regards to tests and referrals. It may be an idea to do something nice to lift your spirits until your next appointment simce waiting for answers is not always easy. Take care, have a wonderful weekend and wish you all the best X X
I am sorry to hear of your situation, the waiting is really awful. The process leading up to my diagnosis was similar to yours, with bloods, ultrasound and a scan, then a conference. They decided on surgery to remove the cyst and one ovary as the images were not enough to determine the nature of the cyst. I then needed a second staging surgery. I think they sometimes don’t want to do a biopsy as there might be a risk of the cyst bursting or cells being spilled. That means they sometimes don’t know what it is until after surgery, as even complex cysts can be harmless.
I was ”lucky” as the cancer was confined to one ovary and in that awful period of waiting for surgery and then waiting for results from the pathologist I tried to hold on to the scan that didn’t show any signs of the cancer having spread elsewhere. Hopefully your cysts are benign, but if not then hopefully it is caught early - and a not very high ca125 is often a good sign.
My Ca 125 was 130. I had a v large, 22cm, cyst. Like you, I had CT and MRI, and also a fine needle biopsy of the free fluid in my abdomen. All were 'inconclusive'. I think, unless they'd seen signs of spread in the scans or found abnormal cells in the free fluid, they can't say for sure that that it is/isn't cancer until they've removed the cyst and sent it to the lab.
It was about 6 weeks before I saw a gynonc surgeon who told me he was pretty sure it was benign and the raised Ca125 score was caused by the tumour rubbing against other organs. When the results came back after surgery, my diagnosis was Borderline Ovarian Tumour, which is 'clinically benign' and 'cured by surgery'. Only a v small percentage recur as malignant, but I'm being monitored, originally for 5 yrs, now for 10, because they've changed the protocol in my hospital, just to make sure nothing is changing.
The waiting is dreadful, but try to hang on to the fact that a raised Ca125 and complex cysts doesn't necessarily mean the worst.
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