The waiting is driving me crazy

Back in March 2018 I found a small lump in my lower abdomen. Because I suffer from fibroids, polycyctic ovaries and endometreosis I was not overly concerned. But then I started to get a lot of pain and discomfort and a brown discharge. So I eventually plucked up the courage to visit my GP in July 2018. Blood tests showed elevated cancer markers, so I was rushed in for emergency Ultrasound. Finally in August my GP gave mt the all clear and said it "definitely" was not Cancer, but just large fibroids. He therefore referred me to a Gynaecologist for further treatment.

Because of a booking error by my GP, I only got an appointment with a consultant in January 2019. However, he had not been sent any reports or a copy of the ultrasound results. After further delays and errors, I eventually had to get hold of a copy of the ultrasound report myself and take it to my consultant in person in March. He was absolutely furious and embarassed! He had not been informed about the raised cancer markers. He consequently sent me for an urgent MRI and further blood tests over two weeks ago, but I am still waiting.

They still have not received any results. I am hoping that no news is good news, but this is not helping. My consultant has advised that I need to have a full hysterectomy anyway becuase the fibroids are so large. I have been so ill since February and the constant set backs and waiting is driving me crazy. I just need to sound off to someone!

  • I know exactly how you are feeling I was referred to my gynacologist on the 18th of January 2019 by my gp appointment was 1st of Feb 2019  referred for ct/pet scan which was 3 weeks later by consultant as cyst had nearly doubled in size and thickening of womb lining and ca125 level doubled from when last tested.he advised possibility of underlining cancer. Had scan 20th of Feb  only got appointment in post Saturday the 27April for appointment for results on 8th of May head is wrecked with waiting had made a number of phone calls always told someone would get back to me no one ever did. I was also told at first consultation I would be having full hysterectomy  and I've had my pre op which runs out end of June!.  I also based on no news is good new I would like to think would not be left for nearly 3 months if cancer found? but you can't help but worry mistakes happen and concerned slip through the net Etseq.Once I know what I'm dealing with I will zone in and get on with! 

    I do hope you hear ASAP and all is well !

    i always think of what my dad used to say all the worrying in the world isn't going to change what is to be it will only drain the energy you need to deal with what is to be !  Easier said than done I know but we should try our hardest to remain positive all the luck in the world x

     

     

  • Hi their Pmb21! And thank you so much for sharing your situation. It is so good to know that I am not alone. You Dad's words are very wise indeed, but the constant set-backs and delays certainly do not help. Sadly it is a sign that our wonderful NHS service is completely overwhelmed and just can not cope with the workload/demand. I fear there are simply too many people on this poor old planet!

    Still no news yet for me. No results back from the MRI Scan yet. Apparently there is a backlog and they are struggling, so I just need to try and carry on regardless.

    In the meantime, can anyone tell me what this means? ........... CA-125=370k/2?Ovarian

    Dussy x

  • Hi

    ca125 can be raised for a number of reasons anything inflammatory mine had increased from 57 to 178 which was above the 35 (35 and below accepted as fine) apparently this figure can increase where there is any inflammation such as cysts,fibroids Etseq but together with other tests and scans is used as a tumour marker. 

    There is no point us over thinking believe me I have (very hard I know) best just hold tight for our results and deal with whatever is thrown our way. I am sure we will get your results very soon no news Is good news

     

    x