Scared after seeing on my NHS app the words 'suspected gynaecological cancer'

Hello, 

I went to the Dr about 3 weeks ago after some bleeding in between periods and lower back pain.

Had a blood test done on Tuesday, which came back as abnormal. My CA125 result was 43. I spoke to the Dr and she said she would do a fast track referral for a scan and to see a gynecologist. The scan date has come through for 28th May. 

I am really scared after seeing on my NHS app the words 'suspected gynecological cancer'. I am 42.

Parents
  • Hello Lis83

    I know exactly how you feel. I am still awaiting results and it feels like forever. You imagine any type of cancer going and I've driven myself mad!! It's the words...... Although, I feel best to have it checked than second guessing. I hope all goes well and the scan is ok. Take care. 

  • Thank you so much for replying  sorry you are going through this. 

    Had you had a higher than normal blood test too? What was the scan like?

    Sending positive thoughts ️

  • Hello Lis83. Went today as an emotional wreck. Spent the whole consultation crying. I was given the results of still abnormal cells no advanced cancer, but I was so convinced I had full blown Stage 3 cancer. The MRI was clear. I have agreed to an hysterectomy I cannot go through the madness of not knowing tbh. The roller coaster is unreal. I am aware that once they take my womb it still has to be examined and a pathology report given so im not completely out of the dark. The main thing is the Surgeon said my obesity is the main factor and I should loose weight possibly jabs. The absolute stress, crying and turmoil is so much. I came home and went to bed. I then thought am I being dramatic...it has consumed me. I am grateful, but also feel like ive taken alot of my life and lifestyle for granted. Im grateful at this point. Thank you for checking in. Xxxx I hope you are ok? X

  • Sorry forgot to mention before the surgery they are fitting me with a mirena coil to hopefully.... Keep the abnormal cells at bay. I am so grateful. The op will be robotic in 4 to 6 weeks time. 

  • Ahh I am sorry to hear it was so emotional :( I completely understand the crying! I would be the same. So they will do the hysterectomy in 4-6 weeks? My sister had one in September last year at 45, she has suffered with endo for so long now. 

    I went to see the gynaecologist again today, although he didn't have my scan results. The surgery sent a message yesterday to contact them about my results which made me panic. Haven't heard back from them yet after calling and doing an online request. But while I was with him this morning I showed him the notes on my NHS app which said the lining of my womb is thickened. I know I will not be able to have the hysteroscopy done easily, I think they might have to knock me out! X

  • You are absolutely not being dramatic and I’m so pleased your mri was good. It’s such a stressful process. Sending hugs

  • Hello thanks for asking, I had my hysteroscopy under general anaesthetic on Monday. It was a long old day. I was scheduled to turn up at midday for the afternoon surgery list. In the end it was all a huge rush as unexpectedly something happened, I’m assuming an emergency of some kind which meant I was still waiting at 4.20 and then I had someone rush in and jog me down the corridor as they needed me prepped by 4.30pm or it would be cancelled. A downside of it was by the time I had come around and woke up enough to realise I was on a ward it was gone 6pm and no one from my procedure came to tell me anything. The consultant had originally told me he would let me know afterwards however that was when it was assumed I was going in at around 1.30. We did ask the nurses who could only tell me what had been written which was it was uncomplicated and a biopsy was taken. I wasn’t discharged until 10.30pm but I had my husband there and the nurses were very good. I’m now waiting on results. The discharge papers say follow up is required and will write with results however the consultant said the biopsy results will also show on my nhs app. This is a huge anxiety for me. I haven’t even looked on there at my blood test results as I’m too scared to see if my tumour marker is elevated as it will send me spiralling and right now burying my head in the sand is keeping me as level as can be. Urgh….!

  • Also having had both an awake one and GA one I’d definitely do GA just as it was less stressful x

  • Thank you so much for this!!!

    Sorry you had such a day of it :( how long did it take? Were you uncomfortable after having it done? I really hope you aren't waiting long for your results. X

  • Was just looking back to see timings. I went down at 4.30pm and was probably out cold 5 mins later! Husband was informed on the phone at around 6.10 that I was being taken up to the ward but I was still drowsy and not awake. The consultant had told me the procedure would take around 30 minutes. They’d given me anti sickness and pain relief before I came round and I was fine and no pain or cramping at all. I only took some paracetamol before bed and then kept dosed up Tuesday but nothing since then. 
    The lady before me at my gynaecologist appointment had had it done during her appointment and was fine awake but my previous ablation complicated things. She seemed to be ok in the waiting room after. I believe you will be given the option of a GA so it’s personal preference x

  • Thank you so much for this!x

  • Thank you. I am now trying to secure an appointment for a coil. Apparently its a 2 week wait. That's made me anxious as I thought it would be done straight away. Sometimes it's good to know, but it can be all too much accessibility to information. They told me off at my appointment. It's so tempting to look at your notes because you want to know!!! I hope you feel ok soon xxxx

Reply
  • Thank you. I am now trying to secure an appointment for a coil. Apparently its a 2 week wait. That's made me anxious as I thought it would be done straight away. Sometimes it's good to know, but it can be all too much accessibility to information. They told me off at my appointment. It's so tempting to look at your notes because you want to know!!! I hope you feel ok soon xxxx

Children
  • Can I ask did you get a call or letter to  let you know your biopsy results/follow up consultant appointment? It’s been 8 days and I’ve not had anything yet and I’m not sure what to expect. I got a letter copied to my gp yesterday which was from my initial consultation on 21st May just saying I’d been referred for a GA hysteroscopy and biopsy. I’d hoped it was my results! Just finished my antibiotics today that they discharged me with after the procedure due to previous sepsis episodes. It was 2 different types so I’ve been staying close to home as they didn’t agree with me but hoping to get out on some walks this week once my stomach settles as I find it helps with the stressing. Hope you get your appointment soon. 

  • Can I ask did you get a call or letter to  let you know your biopsy results/follow up consultant appointment? It’s been 8 days and I’ve not had anything yet and I’m not sure what to expect. I got a letter copied to my gp yesterday which was from my initial consultation on 21st May just saying I’d been referred for a GA hysteroscopy and biopsy. I’d hoped it was my results! Just finished my antibiotics today that they discharged me with after the procedure due to previous sepsis episodes. It was 2 different types so I’ve been staying close to home as they didn’t agree with me but hoping to get out on some walks this week once my stomach settles as I find it helps with the stressing. Hope you get your appointment soon. 

  • Sorry to hear about the antibiotics upsetting your tummy :( not what you need! Shame you are waiting for what I imagine feels like an eternity. Hopefully you will hear soon x

    • Hello Blush 53.I waited dead on 2 weeks for my results and rang them direct on the 14th day. The consultant rang and told me what they were. Hope the antibiotics have worked. It's stressful one thing after another. I have an appointment Thursday for the coil. The MDT should have discussed my case today fingers crossed. I have researched the different methods of investigating whats going on with me. I have immersed myself into work but, been very kind to myself. Bought myself a new TV so I have something in the bedroom to watch whilst recovering although im not good at sitting around. Let us know how you get on xxxx
  • Someone should have set your expectations about getting the biopsy results.
    This varies from one hospital to another and some tests take longer than others.
    Typically 2 to 4 weeks is normal in my experience and there’s no time difference for receiving good news or bad news - whatever I’ll-informed people may tell you. 
    Best practice is for us to receive the results face to face, so please don’t panic if you get an appointment to see your consultant.

    Good luck!
    Dave

  • Finished them now and all good but still waiting on results. Weirdly feel more anxious this week as I guess I knew I would hear anything last week for sure. 

  • Thank you, I’ve said the same to my family that I’ll phone on Monday which will be 14 days. Yesterday I did gardening which helped with anxiety. Glad to hear you are looking after yourself and hope your coil fitting goes well today x

  • Thank you! The nurse said 1-3 weeks but wasn’t sure how I’d be contacted and unfortunately as I said my procedure was late so my consultant didn’t come to see me after which was scheduled to happen so I didn’t get any info at all. Just trying to keep busy!

  • Hello. Had the coil fitted wasn't pleasant. Dont like the fact I have it in my body, but what can you do?!! 

  • Hope it works well for you x