3x cervical biopsies inconclusive for cancer

Hello all,

Following an appointment with a gynaecologist back in September, I was referred to hospital under the NHS's Two Week Rule for possible cervical cancer.  A few weeks later I had a colposcopy, with the biopsy results coming back as CIN2 and CIN3.

I was booked in for a LLETZ under general anaesthetic, but on waking up was informed by the doctor that he hadn't performed the procedure as he considered the abnormal cells too wide spread for this type of treatment.  He took further biopsies and told me that if it wasn't cancer I would likely need surgery (a hysterectomy) to remove the cells.  

These biopsies also came back as non-cancerous, but I was then invited for an MRI to *** how widespread the abnormal cells were.  As I understand it, this was done to help inform surgery options.  Unfortunately the MRI suggested that the cells were more sinister than perhaps the biopsies had shown and I was asked to return for a third biopsy, to be undertaken by the hospitals top gynaecologist.

I learned today that this third biopsy was also inconclusive for cancer.  While the cells are definitely abnormal the doctor wasn't able to tell me if they were pre-cancerous or actual cancer.  The hospital are seeking a second opinion and I'm currently waiting on the outcome of that.

To my mind it now seems unlikely that the hospital will be able to give me a definitive answer on whether I actually have cervical cancer or not, with the ultimate outcome likely to be based on probabilities.  Has anyone else experienced this, or something similar?  If so, what was the outcome for you?  Did the hospital assume worse-case scenario (cancer) and treat for that, or did they take a more cautious approach (surgery perhaps).  I've been told that some form of treatment is necessary, but I really have no idea which way it might go...  Just wanting to hear from anyone who has been through the same thing.

  • Hello Trevolio

    I'm sorry to hear about the position that you find yourself in. With the uncertainty surrounding your results and what they may, or may not, subsequently, mean for you, it's understandable that you may be feeling anxious. 

    Hopefully, the further insight that your hospital team has sought from another specialist will bring some firmer answers, and before too long you'll know exactly what the next steps will be. 

    We know that waiting for information can be a difficult time for many people. Often it can help to talk things through with someone and I wonder if you might find it helpful to chat with one of our team of nurses. I'm sure they would be happy to offer any advice and support they can. If you'd like to chat with them they're available Monday to Friday 9 am to 5 pm on 0808 800 4040. 

    I hope you have some news soon. Keep in touch and let us know how you get on. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

  • Hello!

    I'm glad I came upon your post. 

    Last year, I went for a smear and a coil change. The nurse thought my cervix looked strange and was seen by the colposcopist within a week. 

    They took biopsies and I waited around for results. 

    My smear test came back clear, but my biopsies came back as cin1,2 and 3.

    I went for lletz to remove the cin and that was in the September. In December, I was told that there were no clear margins and I needed to go and see the top colposcopist. 

    She explained that the cells they could see on the edge were extremely close to cancer and had been to 7 pathologists to try and get a definitive answer, to no avail.

    I was offered 3 options. 

    1. Hysterectomy 

    2. Another lletz followed by further lletz of needed

    3. Do nothing and observe. 

    After much thinking, I have decided to go for the Hysterectomy as I just want to make sure wherever is there has gone. I've done with having children so it was an easier decision than most. 

    I now have to wait for an operation date.  

    Let me know how you get on

  • Hallo!

    Thank you for the reply; it's good to be in contact with someone going through something similar.

    My case hasn't moved on much since I posted this thread. My third biopsy results came back as negative for cancer, but with the caveat that I have a LOT of abnormal cells and it's possible I do actually have cancer. I've been referred to the Royal Marsden now and am seeing them on the 17th Jan. Hopefully I'll get a way forward then.

    Good for you for opting for the hysterectomy. Not the easiest way forward but at least it should give you peace of mind for future. Which hospital are you being treated at? Feeling ok about it all?

    Best wishes, Claire 

  •  

    I'm at a number of hospitals under one trust. They share the work load so I see the colposcopist at one but will be having surgery at another.

    On some days I feel fine and on others, I feel very overwhelmed. I'm spending my time looking at everything to do with cin and cancer and hysterectomies. I'm not sure that's a good thing, but it's the only thing I can do to get the information I can. 

    There's nothing out there that I can find that tells you about cin and cancer and how one turns to the other. I just want to know what the pathologists are seeing. 

    I'm not even sure how long the wait is for surgery. 

    Everything is just up in the air

  • Hi!

    I've got my hospital date for the end of February. 

    Fingers crossed it all goes well