My best friend is in for her surgery tomorrow. She is 49. .
The story below is just a summary of the dreadful journey so far for her.
Claire had a fibroid removed 3 years ago but was refused hysterectomy.
She has since not really been fully well with lots of illnesses and symptoms that have been misdiagnosed by various drs and consultants.
After eventually changing her GP practice a routine blood test showed CA125 at 653.
This was mid Jan 2018.
A call from the GP practice mgr to report this put her on a urgent referral for an ultrasound scan that took too long ! I tried to get her to go private but the receptionists at the Spire were so bad she gave up!
Nhs ultrasound revealed a 2cm cyst. She was obviously very worried. Her normal GP referred to consultant but said its probably a dermoid cyst and I only see cancer in patients with CA125 in the 1000's so nothing to worry about.
The consultant at Leighton first off said "I can see you are worried but you have NOT got cancer". He did another ultrasound himself and said we will get you another blood test in 3 months just to check things still ok as it will go away.
I pushed her to go early for the blood test after 2 months. Her CA125 was up to over 850. I pushed for her to go private and pay for a consultant appointment.
Consultant shook his head and said you need an MRI at least. Which she paid for. Tumour now 5cm on one ovary and abnormality on other one and more fibroids too! Consultant recommended GP refer her to Christies and full hysterectomy.
A miscommunication between everyone would have meant a first consultation tomorrow at Christies. The GP had assumed it was for the OP. this got sorted and eventually got to see someone 3 weeks ago
A CT was in the meanwhile done on NHS.
She was told at first consultation at christies everything looked contained and would do the hysterectomy.
She went for a Pre op on Tuesday last week. It turned into another consultation with another consultant who said CT SCAN results are showing suspicious nodes on main blood vessels so you need to have larger op 3 hour op including appendectomy. They are going to open her up from sternum down!! Consultant asked why she didn't have a hysterectomy 3 years ago.
Her mum died of lung cancer approx 25 years ago although i have only just found out when they opened her up for hysterectomy they found too much cancer and didn't do it. She was 50 and died 9 months later!
I am just praying tomorrow they find nothing else other than the tumour which will be benign but I am not hopeful.
I pray for her. She definitely doesn't deserve this as she is one of the nice people in this unfair world.
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Thanks for your reply. I have mentioned it but as you say its for after. I just wish she was the type to get more angry and shout louder but she ends up just going with what the "specialists" tell her. Her GP practice manager has supposedly put in a complaint about the consultant at Leighton and said PALS would be in touch but guess what they haven't been! It shouldn't be difficult this should it! I am new to all this but it clearly states normal is up to 35 not 650!! I appreciate its not a catch all and could be something else causing it to be high but consultants and GPs should read the warning signs and certainly not give false hope.
I'm so sorry for yur friend and truely hope everything goes well she has been messed about enuf.
I have been messed about for a year, never ever had breathing problems. Until I was given gabapentin after 4wks I was rushed in unable to breathe. I've struggled ever since and I still am. I had 15 courses of anti biotics in 4mths. They say its asthme but in hallers don't work. My breathing is still horrific .x
Sometimes it still doesn't get u anywhere, I believe doctors r only human and do make mistakes.
I kept going to the doctors with chest infection one after another, after being rushed into hospital unable to breathe, they did nothing. My voice went that horse u cudnt understand me, my throat, my tongue, wud swell I cudnt swallow, my nose was producing so much mucus it was going down my throat and lay on my chest, so it wasn't chest infections. Rapid weight gain, and also now I have scar tissue in my lungs. I have gone in 12mths from being able to walk my dog for an hour, to unable to walk the length of my living room without gasping for mybreath. I demandedlj to see a chest specialist. Nope theywudnt.
The first thing I would say is that fibroids are a separate thing to Ovarian. Many doctors are reluctant to remove a uterus now since there are often other options to deal with fibroids. I had very large fibroids but I had to have the op in the end at 39 and it was a great relief in my case, but generally, gently, gently is best. The days of willy nilly removing women’s bits as if it’s normal are over thank God. Unfortunately, since fibroids are hormone driven, they can grow again. They don’t become cancerous.
If your friend had had a hysterectomy at the time her fibroids were being dealt with, chances are the surgeon would have left her ovaries in. It depends if she’d started her menopause.
Most of us here have had a hysterectomy and other bits removed. The op is a bit longer than normal but it is recoverable from and the healing time isn’t much different to a normal hysterectomy.
The main thing is for your friend to focus on getting better and to leave this phase behind.
There is understandably some anger at her misdiagnosis and many people feel the same here. Once it was found that your friend had a CA125 over 35, she should have had a referral since the CA125 is an inflammation marker. I was misdiagnosed myself.
The CA125 isn’t a reliable indicator of Ovarian. I’m late Stage, and have a CA125 within the normal range, Women can have a raised CA125 and not have cancer. The CA125 is more reliably used to track Ovarian.
Another thing I’d say is that your friend may not have Ovarian which can only be diagnosed after a biopsy and the cyst is analysed.
So, it’s best maybe to support your friend at each step, the first being having the op and getting stronger.
We know someone who had early stage but had CA125 of 11.
We will get this phase over and see where it leads.
As I say she has suffered a catalogue of misdiagnoses in the last few years not just about this so eventually it takes its toll. She had hardly been to the drs until about 5 years ago.
Yes, it’s hard. There is plenty of time to ask for answers, but anger can get in the way of calmness at the moment even though anger in general can be a normal and healthy emotion. Xx
It is truly terrible hearing this litany of errors. While your friend is recovering from surgery, you should write to PALS as her friend.
Just be clear and concise. They are usually very good at getting back to you.
Meanwhile, the surgery will be thorough, with the surgeon looking carefully at every organ for lesions and removing whatever is necessary or suspicious. This could include the spleen also, or whatever is not really necessary for life sustaining purposes.
They have marvellous pain management after surgery, so your friend need not worry about that.
Don't let your friend be in a rush to leave the hospital. You can't rush recovery. She should be able to eat, defecate and urinate, before going home. Everyone's recovery time is different, because everyone's operation is different, so just because the other ladies in your ward are running around and eating like there is no tomorrow, doesn't mean you will.
One day at a time.
Good luck with this and congratulations on all the work you are doing to help your friend on this journey.
Best wishes,
Laura
PS: Do you accompany your friend to all her appointments? If not, start doing so. Record them on your phone. Have questions ready.
Find out when the doctors do their rounds and be st the hospital for that, too.
Thank you for your reply x I will try and get some response from PAls but she isn't the type to want to kick up a fuss! Hopefully the op goes well and we can!
I'm so sorry to hear what your friend is going through. As Tina B says above the definitive diagnosis will only be made following histology. There is though a really helpful and holistic guide by Target Ovarian Cancer called ' What Happens Next?' which can be useful for both women who may be diagnosed with Ovarian Cancer and also those who love them most. targetovariancancer.org.uk/...
Target Ovarian Cancer have been running a training program for GPs and other health professionals for some time, with the intention of improving awareness and improving treatment and diagnosis. They've done a great deal and recognise there's more to do. targetovariancancer.org.uk/...
I recognise your intense feelings of both sadness and anger. These can both be powerful motivators for change, but also can also sometimes become overwhelming. Both Target and Ovacome have nurse-led helplines and you would find there both understanding of the specifics of the healthcare, expert insight as well as support. Getting support this way may not only be useful but also make it a little easier for you to continue to focus on taking care of your dear friend. Anna OvacomeSupport is also available to everyone on this forum.
My story has some similarities to your friend's. A large 'cyst' which was believed to be a dermoid was observed during an IVF scan (aged 40). My GP was ahead of the curve in ordering a number of blood tests and these were negative. I was seen by gyny services and based on the evidence available removal of the cyst was offered but as a routine operation. I pushed to have it done sooner (privately), as we were intending to try IVF treatments and also as I had what can only be described as a really strong intuitive need.
The 'cyst' that was removed was tested as being a borderline mucinous tumour. When I was referred to Gyny Oncology the retest also found invasive grade 1 cells. Mucinous OvCa is one of the rarer types of ovarian cancer and is often associated with not provoking higher than 'normal' results with the associated blood tests eg CA125 etc. There are other rarer sub-types which also have this pattern. CA125 is a useful but not definitive test. It can give both false negatives and false positives. A negative test will though most often be associated with someone who does not have ovarian cancer.
I had CT and MRI scans and as a consequence was able to consider fertility saving surgery eg keeping one ovary and uterus. When it came to the big operation it seemed to the surgeons that the cancer had likely spread extensively. It was later though, to everyone's surprise, confirmed via histology that it had been contained within the original ovary (I remained 1C). The combination of previously undiagnosed endometriosis (now understood to have likely affected fertility) and surgical adhesions had caused all sorts of problems. I have been incredibly fortunate to have NED (no evidence of disease) since surgery. I also had chemo as 'belt and braces' approach after surgery and finished this five years ago. I still have NED.
I was treated by one of the surgeons and team who are now based at The Christie (previously at Wythenshawe). They are amazing and your friend is in incredibly good hands now. The Christie is one of the foremost centres of excellence not just in the UK but in Europe. The Maggie's centre attached is also exceptional and I really recommend it to both you & your friend.
I began to understand during the process how decisions/ diagnosis are made. It was though a horrible roller-coaster, not just for me but for those around me. I am very, very aware though that this part of my 'roller-coaster' concluded with a diagnosis/prognosis which was 'better' than many.
I, like most people here, experienced some bad practise alongside excellent practise. There is a definite need for more people to work with the charities, patient groups and healthcare professionals who are constantly striving to improve things. It sounds like you may be someone who in the future would be a great addition to these groups if this was the right thing for you. There are also some people here who have experienced catastrophic failures of health care. I really admire those who challenge this through legal process, within PALs, the NHS and even share their experiences at Westminster to try to generate political awareness and effect change. Recognition of their experiences is necessary to honour the impact this has had on their lives but will also improve things for those who follow.
I'm sorry this may read a bit like an essay... my hope is that you might know that you're not alone, neither is your friend. All of us have our own unique situations but sometimes where they overlap there's a huge amount to be gained.
My only advice is to try to take things step by step & to try to take good care of yourself so you can also take good care of your friend. Do keep posting if its helpful. Thinking of you both and wishing you both hope and strength, Sx
Thank you for taking the time and for all your thoughts and advice. Will get through today and see how things turn out. She is in the best place so hopefully will know more later x
I'm really sorry to hear about the experience of your friend so far. As Sunfleury-UK said, do get in touch if you need any support. We are here for anyone worried about ovarian cancer, you don't need to have a diagnosis.
Sending hugs to you both. My op was 7 hours and I had the huge incision from sternum which was closed with 37 staples. The wound healed remarkably quickly and the scar is now very feint and am only 18 months on from op. I had some complications but was out of hospital in 12 days and thought that I revovered quite quickly. I did have strange confidence issues afterwards and went for counselling although I think it was something to do with feeling helpless during the recovery . Please let us know how it goes.
Think a lot of us have had a terrible journey at times but I am being treated at the Christie and they are an amazing hospital and your friend is in the best place whatever her eventual diagnosis x
I had my surgery at St Mary’s but I really wish I had received all my care at the Christie it’s exceptional so trust she is in the best possible place and the team are fantastic xx
Thank you. Yes she is. I understand others have been through similar and far worse. We live in a nice bubble normally isolated from everyone else's reality which doesn't help.
- She's at the Christies now, right? This is one of the top cancer centres in the UK, from what I've heard. And a good place to have the surgery, as the surgeons there have plenty of experience with the procedure.
- The large (explorative) surgery is also called debulking surgery, and it is indeed usually performed via a laparotomy.. a long vertical incision in the abdomen. Sounds scary, and takes a good 6 weeks to fully recover from.. but it's actually a very good plan. It's the best chance to spot the full extent of her cysts and remove them. Thus, if cancerous cells are found, this surgery is crucial for the best possible prognosis afterwards.
Wishing her the best of luck for surgery. She's now in good hands. Maus
How incredibly blessed she is to have a friend in her life that would know and be able to share the details of her journey as well as you have here. Know that you are BOTH in my prayers beginning immediately - that way we can get everyone covered from BOTH sides of the pond! This kind of dropping-the-ball stuff really gets my goat! Sometimes I think it's even worse here in the states. Wherever any of us are, at the end of the day, no matter how able we may be to advocate for ourselves, we arestill placing our lives in the hands of the medical professionals that we entrust to DO NO HARM. Unfortunately, harm seems to happen far too often. That said, please don't lose hope. There are MANY people that come together on all levels of the medical profession to SAVE lives. Also, as I hear people say again and again on this site, you just never know what's going to happen because each one of us is different. There are statistics until the cows come home, but ultimately we each face our own journey based on a number of things we do know about and probably even more that we don't know about. I hope your friend's surgery will be a success in ALL ways, but if the news is not what you both had hoped for, it sounds like your friend has an incredibly good friend in you, and that is a priceless gift to move forward with! Thinking about you and keeping you close to my heart!
Thank you for your kind words . it has been hard journey but as I have said to her probably too many times light at the end of the tunnel. Fingers are crossed so tightly
Thanks to everyone who read/commented on above. The op for claire was 3.5 hours and in recovery about 1:30 pm. A bit longer than planned. She has been in a bit of pain tonight so hoping to sort that and get her up and out of bed. Still waiting to see consultant to go through how the op went. Fingers still crossed. First hurdle over!!
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CT results are in :-( 11cm cyst.
CA125 is 145 but clear ultrasound
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