I need to rant and rave

[Gettingoldnow]

To say I am mad is an understatement .had another transabdominal and TVUS scans today at another hospital.i had a really lovely sonographer whom I explained I have had approximately 6 scans and all inconclusive and MRI said possible haemorrhagic cysts.the sonographer was alarmed and has told me the cyst is def in her opinion not haemorrhagic and is solid.i.she seemed very concerned at some other aspects.eg size .but would not comment any further.she is sending report to gynocologist .so as soon as I get appointment will be asking for second opinion .had enough now .rant over .

[Katmal-UK]

Rant away. Have you been told when your next appointment is? Hopefully sooner rather than later. In the meantime sending you a big hug xx Kathy

[Gettingoldnow in reply to Katmal-UK]

Hi there .sorry about the rant I have calmed down a little now.dont have appointment yet but rest assured will be on the ball now to chase up.i honestly think all these Indefinitive scans means passing the buck.i have also sent a complaint letter to get them off their butts and do or say something .thanks for reply .hope all is well with you

[Katmal-UK in reply to Gettingoldnow]

Hi Never apologise for a rant, believe you me we have all had them/have them. It's good to rant and let off steam . Do let us know how you get on. XX

[Lyndy]

Yes...good for you!!

[Neona]

I do hope you get some answers very soon and can well understand your frustration as waiting is just terrible.

[Gettingoldnow in reply to Neona]

Thanks for your reply .have calmed down a bit ,but now have the bit between my teeth to get heads rolling.i am on a mission .whatever I have wrong with me I have but it's been a year now and enough is enough .hopefully it will help others at our local hospital get sorted quicker .hope you are keeping well x

[Januk2612]

No problem about getting mad or ranting. It’s necessary sometimes and helps you (and them) focus on who and what is at stake here! Your body, your life! More power to patients! If you’ve got someone you have no confidence in - definitely change and find someone with more expertise.

[Gettingoldnow in reply to Januk2612]

Thanks for your reply.no confidence is an understatement .the trouble is it is a teaching hospital so always juniors doing the work and playing guessing games or passing the buck .but rest assured I now will be asking for another hospital gynocologist/oncologist to look at my 8 scans and give me a diagnosis .they have had a year to sort this out .i think they will know my name when I am finished with them .i don't have a problem with nurses and doctors just the sonographers and radiologist .indefinate on all of them ? .hope you are doing ok.x

[Januk2612]

Thanks I am glad to still be here but given my first consultant told me “good news- it doesn’t look sinister” (long story) but a few weeks later due to me asking about certain other scan findings they took another look. After urgent surgery I was diagnosed 3C high-grade serous.

You keep up with your efforts and wishing you the best outcome!

[Gettingoldnow in reply to Januk2612]

Hi there ,I know you said a long story but would be interested to hear it and what your concerns were regarding scans .nobody can underestimate the importance of gynocological problems.and some of the stories you read are horrific .if only these people would listen to us women and stop dismissing the problems we have .we don't want to be going through it no more than they would.i hope you are now recovering well.so pleased you questioned scans .i should have done it ages ago.

[Januk2612]

Due to where pain was I was referred to A&E by my GP for suspected gallbladder inflammation and admitted onto a gynae ward - no clue why but presume it was results of blood they took. After chest x-Ray, ultrasound and then CT scan and a weeks stay I was told that CT had shown a ‘couple of cysts’ and they were writing to GP to get them to refer me to consultant gynae for further investigation. I was told that one of the ‘cysts’ was on my liver. The first radiologist who performed abdominal ultrasound following chest x-ray, had also said it showed fluid on lungs and hadn’t someone mentioned this to me? That’d be a NO. No-one had even referred to it. Personally I found it all a bit disjointed and backwards to refer me back to GP so he could then refer me back to Gynae considering I was already there but figured whatever it was couldn’t have been too serious if that’s the route they were taking. They discharged me after almost a week and a barrage of tests, with a diagnosis of costochondritis.

My GP obviously suspected otherwise having access to all the results and before I could even mention a referral the hospital rang me with an appt for an ultrasound (trans vag) with a follow up to discuss all the results with consultant. Both husband and daughter attended too and she said it was good news, but thought best to arrange routine hysterectomy to clear fibroids and 6cm cyst in uterus but still didn’t mention the other cyst reported to be on my liver. I could tell she hadn’t even referred to my CT scan results - only the ultrasound report as she looked surprised and only then referred back to my notes for another look. By this time family were elated and only focused on the ‘good news’ bit. She said she was about to go on leave but would get a specialist radiologist to look again more closely and ‘actually we’ll just repeat the inflammatory marker as although it was slightly raised that could’ve been something to do with my recent in patients stay, which they had diagnosed as costochondritis (wrong again). She told us all that they would expect this marker (CA125) to be much higher - in the thousands if it was something like cancer but they’d all discuss the results again at some meeting and I was to come back again in a couple of weeks. I was alone when I attended the 2nd follow up as everyone else had figured it to be just a formality based on what she had told me. I knew the moment I was called in that it wasn’t good news as there was a MacMillan nurse in there with her. The specialist radiologist had taken a close look at the CT scan (prob the first time he had even seen it) and said the 6cm cyst looked to be irregular and complex - definitely suspicious and they were referring me for ANOTHER scan - this time an MRI to look in greater detail of the cyst on my liver. However, I was being referred for urgent appt with a specialist surgeon at a different hospital. The morning of the surgery I had asked again about the MRI results and the cyst on liver and was told again.....good news it was benign. I passed the good news on to my family who were all in a bit of shock at the change and speed it was all happening since that first appointment.

Turns out the surgeon was taken aback at how it all looked when he opened me up - there was FAR more than had been reported on all the original scans but the benign cyst on my liver was actually a cancerous tumour that had spread to my diaphragm and was stuck to my liver. This would explain the pain I’d had on right side when breathing - what GP thought was to do with gallbladder and hospital diagnosed as a rib inflammation. Anyhow surgeon had unfortunately ‘nicked’ my lung during procedure and I now have a permanently partially collapsed lung as a result, a massive scar and a big old ventral hernia.

I still consider - despite the complete farce from the start to my eventual diagnosis - that it was fortunate in one regard because it taught me a valuable lesson. They are NOT gods regardless of all the egos. Some make lazy mistakes - I will never ever hand over 100% of my blind trust to any ONE consultant or health professional. I request copies of ALL scan reports and clinical notes and question and research. My view now is that they are there to serve as my ‘tools’ but ultimately I am responsible for my own health and well-being. By acting like we’re too scared to educate ourselves and avoiding using the internet to research valuable info for fear of reading a generalised statistic from data that can be inaccurate because of the way it’s obtained in UK - we perpetuate this belief that some professionals have of women - that we’re not capable enough to cope with the truth. That maybe the case for some women - but NOT for all of us. It’s a stereotypical generalisation that’s often made worse by other females unfortunately. It stops us from pushing them on why it’s so poor - many will just lie back and take it believing they will cure us - so NOTHING really changes. We’re guinea pigs for more chemical trials or treated with a one-size fits all approach depending on where we live of course.

Apologies for length and off-loading, but it’s hard for me to summarise what happened. I’m still on long-term antidepressants for severe anxiety and I physically shake even on the beta-blockers I also have to take (prob some form of PTSD considering). When I read of these stories of women having to battle and challenge the professionals for a diagnosis it brings it all back a bit and I do worry about the lack of joined up ‘care’ women receive or how readily they hand over their absolute trust to the medical profession without question. I might be in the minority but I’ve read enough stories to know that i am not alone sadly! I’ve also read enough about current treatments to make me believe that surgery and chemo alone are not working as well as people believe and it needs a more integrative approach to really get the best results.

[Gettingoldnow in reply to Januk2612]

Wow your story has astounded me .so pleased you question scans .you have certainly been in the wars and I really understand what you are going through.i also have a cyst on liver that MRI says probably benign .well you by sharing your story have given me the tools I need to get answers,so you have helped me enormously .yes they do get things wrong occasionly ,but it seems the norm these days .pals have sent my complaint to gynocologist and now await her response.but do hope you get better soon are you on chemo ?please feel free to chat any time as sometimes it really helps.a lady called Michelle n here has been my saviour .a lovely lady who has her own problems but found the time to chat to me.it calmed me down .you in turn by sharing your story also has helped me for which I am truly thankful .lets get this medical profession to do their job properly .please keep in touch and let us know how you are doing and stay positive