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
I’ve had more than one consultant over the course of years, and in my experience they never “guessed” at things. They’ve always said I need to wait for biopsy or scan results-even when it was suspected that my cancer had returned.
So it may be that at your first appointment it was the same-the consultant didn’t want to commit to a diagnosis without evidence. That’s actually good practice. My first consultant could see something at my colposcopy-he told me that much-but said it needed a biopsy.
To be honest, I’m glad he didn’t say immediately he thought it was cancer, as I didn’t have the same level of anxiety waiting for results and imagining potential scenarios.
If you still remain unhappy about the first consultant, you can make a complaint or at least ask for an explanation if you think that would be helpful for you. But ultimately you are where you are, and things are moving forward so it might be best for your own mental state not to dwell on what’s happened in the past and concentrate on what’s next.
It’s unusual to get a late stage diagnosis from the get go. Not impossible, but not common. For me, my tumour was nearly 4cm, and could easily be seen with the naked eye by the consultant, and although it was a “locally advanced” cancer (meaning it had spread slightly into surrounding tissues) it wasn’t late stage and could be treated, although not by surgery. Things are rarely as bad as we might imagine!
I’m so sorry you have the added worry about breastfeeding your baby-it’s very natural to be concerned about the implications of that IF you need treatment, but that’s your mind rushing ahead before you know anything for sure. I completely understand that we can catastrophise when we don’t have the answers we need, but it will ramp up your anxiety levels.
Sarah xx
Hi Jun and welcome to our group.
I would always encourage everyone to advocate for themselves in terms of appointments etc as things can get missed-it can seem like a full time job sometimes chasing things!
However, it seems like you have had a lot of tests, scans etc in the time since you first went to your gp, so things have moved quickly for you although I know it might not feel like that when you’re in the midst of it all! It took from mid August when I first went to my gp until November for me to start treatment.
I like your positive attitude-this will honestly serve you well. When I was first diagnosed I sent a meme of an old lady pulling up a massive pair of knickers to my closest friend, just saying “time to put the positive pants on”.Ive tried to keep that attitude all through my own experiences.
I had my petscan and all my treatment in Sheffield, with some other scans being carried out in Doncaster which is closer to us. I have had several different consultants over the years-some not so positive, with limited bedside manner, so I chose to try and ignore them and focus on the positive ones. I was determined to prove I’d get through all of this, which up till now I have, and like you say it makes you stronger and more determined.
I hope you’ll keep in touch and let us know how you’re getting on. Feel free to ask any questions in the group as you go along-we’ll try our best to help support you through.
Sarah xx
Hi Jun
Yes-i agree with what you’re saying here. I wish with hindsight I had been so proactive when I were first diagnosed! At the point of my diagnosis, something was identified on my hip in a scan. My first consultant was very negative and scared the life out of me by saying there was nothing that could be done if it were a spread of my cancer. He scared me so much that I just chose to ignore it.
Fast forward a few years and I had another scan when I became very ill from a different issue. This particular issue was identified and dealt with by having my gallbladder removed. But still my hip issue remained an anomaly.
When I could no longer continue because of the pain I was in, I went to my gp. I had a new doctor and he had a quick look through my records. He saw straight away that my hip issue had been seen on the second scan, and identified as osteoarthritis, not cancer. No-one had ever mentioned this finding when I was having the scans and tests for my gallbladder.
Multiple X-rays were done and I was then informed the osteoarthritis was severe and I’d need a hip replacement at the very least. Off I went to the orthopaedic surgeon. He advised me I actually had osteoarthritis in my knees, hips and spine to varying degrees. My right hip by this time was so bad it was bone on bone.
He then told me a hip replacement was absolutely necessary, but far too risky to complete. By this point the chemo for my cervical cancer had caused a pulmonary embolism, and by then I’d had a stroke, developed chronic kidney disease and type 2 diabetes. Surgery for my hip would likely have killed me. So I made the decision not to take the risk.
Now I’m permanently disabled, need a wheelchair on the rare occasions I can even leave the house, and I’ve been told things will only get worse for me. I’ll never be able to walk again other than a few steps with 2 sticks. I’m on almost 500 pills each month to manage my pain.
If I’d pushed for more tests at diagnosis I could have had a hip replacement before I had my other medical complications. I could blame myself for not being proactive 7 years ago, but I was overwhelmed by my cancer diagnosis, and a consultant who scared me senseless.
I work hard at not being bitter, but finding out I had a lifetime of being disabled and in pain is not that easy to accept. It’s the one and only time I lost hope for myself, despite cancer and it recurring and changing my life through drastic and life changing surgery. Everyone needs to advocate fort themselves, and I wish I had been strong enough to do that myself. Hindsight is a wonderful thing!
Sarah xx
Thank you Jun you're very kind.
“Be better, not bitter” was my mantra for a while and I try to remember that! There’s not really any value for me in looking back, as it doesn’t help me but at times I admit I can feel sorry for myself. But I give my head a wobble and focus on the fact that against my very poor odds of survival, I’m still here.
We can still go abroad on holiday, getting assistance from the airline, and in fact we’ll be off again in a couple of weeks. Despite having stomas I can eat and drink what I want with no restrictions, and I generally feel well. I’ve succeeded in putting my diabetes in remission by changing my diet. So these are all positive things.
It was unfortunate I had a consultant with no bedside manner at the beginning, but I’m grateful he spotted the tiny sign that meant my cancer was back because that led me to a lovely new consultant who became my lead surgeon. So every cloud has a silver lining when you look hard enough!
Sarah xx
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