I posted on here a few weeks ago after going for a colposcopy after my smear tests results flagged possible invasive squamous cell carcinoma.
The constant that did it was horrible. No bedside manner at all. He was going to perform a LLetz but then changed his mind and just did a cell scraping. He also asked me about my recent emergency C-section. He just told me to wait for the results. I wasn't given any support or information.
He then sent a letter to my doctors that just said that my cervix was friable and cells were shedding and that he took a scraping and to wait for results.
I got a letter through dated the 22nd of may for a follow up appointment for today.
I went to the appointment hoping to have some answers but now I am in a worst position.
The results basically came back inconclusive. They have stated that there is cin 2 and 3 but they couldn't be sure on whether it is invasive cancer. Looks like it, but can't be positive.
I took a photo of the results and from what I can gather the sample wasn't big enough to confirm anything but highly suggested cancer.
This is the results for anyone interested.
This specimen consists of dissociated and superficial fragments of cervical squamous mucosae which are poorly orientated. The squamous epithelium appears dysplastic and focally, there are features of koilocytosis present with dysplasia amounting to CIN2 and possibly focal CIN3. There is some atypical dysplastic epithelium present within the stroma of invaginating into underlying connective tissue; however, there is very limited stroma present in this biopsy for accurate interpretation. Definite stromal desmoplastic reaction is not apparent. Immunohistochemistry testing for P16 shows diffuse block positivity in keeping with a HPV-associated lesion
Overall, the appearances are those of dysplastic squamous epithelium representing at least high grade CIN, however, there are also areas suspicious for invasive malignancy but there is insufficient evidence for definitive diagnosis. A repeat biopsy is strongly advised for clarification
Conclusion
Cervical biopsy-dysplastic squamous epithelium, suspicious for malignancy Repeat biopsy is strongly advised for clarification
Gynae-Oncology MDT discussion is advised
I was in such a state that I said I wanted anything else done under GA which they agreed to. I then asked why the other consultant hadn't mentioned anything in the previous examination and he couldn't answer. He then decided to just take a look at my cervix.
He said he couldn't see any obvious tumor or growth. But he also stated he couldn't see my cervix properly. That it had no difined edges. He said to him that looks like cancer. I know I have a very sharply anteverted uterus with very anterior cervix as the doctor that did my smear test said that she found it hard to see, but did find it. The consultant today said he wouldn't be able to do the LLETZ in clinic as I was bleeding too much. Just to note the reason for the smear was ongoing spotting after postpartum. The spotting stopped within a week of starting the mini pill and I have only bled once after since then and that was after the colposcopy. It has been noted that I have had an ectropion for 10 years - only kicks off bleeding with pregnancy and has also stopped after taking the mini pill. I asked about the bleeding, ectropion and all my maternity and postpartum issues and he said it was all irrelevant.
He said I would be fast tracked for the biopsy under GA and a MRI. I took the MRI paperwork to the office and they said they would call be today with an appointment but they haven't.
I really can't understand why the first consultant did what he did? I am now in a worst position than I was 3 weeks ago. I don't understand why he didn't escalate it then when things were seen and why these things were not said to me or documented in the letter to the GP. I feel like I have had a few weeks in a false sense of security with it all. The fact that the sample wasn't sufficient now means I will be way above the 28 days that they aim for.
Honestly my mental health is at breaking point. I even said that to the consultant and he said to contact my GP!
I know I now just have to start the waiting game all over again but it seems so unfair. Surely with such a query I should have been sent to have a biopsy under GA if he couldn't perform it in clinic!
Hi Johyl
I’m so sorry you’ve been left with no real answers from your appointment-that will be very difficult to deal with, I’m sure. I know the diagnostic guideline is 28 days to get a diagnosis or not of cancer, but this target is not always met for various reasons-usually the need for further testing/biopsies.
There can be a lot of waiting during the process of diagnosis, and making a treatment plan, and this is one of the most difficult times for most of us. But getting the right results and the right treatment is so important.
As patients in the group, we can’t make any attempt to interpret results, but you know you’ll be having a biopsy under GA and an mri. There will be a wait for these as both depend on how busy your hospital is and you’ll need a theatre slot to have the biopsy done. I’ve had a biopsy under GA myself, and it wasn’t a long process so hopefully you’ll be fitted in quite quickly.
There will be another wait after the MRI is done as you won’t get told anything on the day about what is seen. The mri results and the biopsy results will be discussed at the mdt, and then you’ll have an appointment with your consultant to discuss this. Normally the mdt meets weekly, so it will depend when it is at your particular hospital, I know it seems such a long time and such extra pressure on our mental health, but it’s how the system works.
The consultant would rightly refer you to your gp for help with your mental health, so I’d encourage you to do that. I was given anxiety medication coincidentally just at the time of my original diagnosis by my gp, and she recommended I stay on it as I went through my treatment. It was definitely very useful, and took the edge off things. I also downloaded a Mindfulness app on my phone which was really good to help me live in the moment and be more calm. Calming apps to listen to helped me sleep.
It’s been a long time since my original diagnosis, but I still remember those scary times. Things became easier once I had a treatment plan to focus on. I can’t tell you not to worry, as I know you will, but please look after yourself and take advantage of help with your mental health-the mental aspect can be as difficult as the physical.
Please keep us posted, and ask any questions you need to so we can try and help support you through this.
Sarah xx
