I have been reading this forum for many months so I thought I would reach out and write about my experience.
A little background about myself, age 63, married over 30 years. Three adult children. Attended all smear tests, clear results. The test before last was 2018, I think a year before they introduced the new approach of HPV testing.
I attended for smear test in September 23, no symptoms, no reason to be worried. Ten days later I received a call from Hospital asking me to attend for a Colcoscopy as they had found high grade changes, CGIN, glandular.
I went for Colcoscopy and they did a Lletz procedure. I then had to wait for the histology results on the Lletz. Three weeks later I had a all to say cancer had been found. The shock was terrible. I had gone from a clear result to cancer in 5 years. (After 50 the tests are every 5 years.)
I was, referred for a MRI which confirmed Stage 1B1 or 1B2 cancer. The treatment would be Radical hysterectomy with removal of ovaries. I had to wait 8 weeks for Lletz to heal before surgery.
I was very thankful to be able to have surgery, I recovered well after the operation although it was hard. Then 2 week wait for histology results from the operation. I was so relieved to be told clear margins and no spread so no further treatment needed. I am now going for 3 monthly follow ups. My anxiety increases prior to these checkups as I am very aware of reoccurrence.
I was told that these Glandular changes are high up in cervix and can be hard to detect, so can be missed at screenings. I find this very concerning indeed. I did receive a letter about an audit of previous smear tests but obviously my focus was on treatment. Thinking about it now I question the value of an audit if these glandular cells were not picked up by the brush used for the test ie the brush did not go high enough. Surely the audit can only examine the cell samples taken.
I appreciate that I was fortunate to be able to have the surgery and Thankful for the histology results.
I would say that the waiting for results was just awful and I did seek help for my anxiety.
Thank you for reading my post and my Best wishes to all ladies dealing with this disease.
Hi Serena77 and welcome to our group.
I’m glad to hear you’ve come through your surgery successfully and are now on your check ups without needing further treatment.
I completely understand what you’re saying about the possibility of cells being missed on a smear when they are high up in the cervix, and the brush is only taking a sweep of the cervix. I’m not sure what type of cervical cancer you had, but I was diagnosed with adenocarcinoma which starts in the glandular cells higher up in the cervix. I don’t know what the audit is looking at, but like you think it would be based on the cells which were taken. In your case, you went on to have a colposcopy and LLETZ which identified the cancer, which was very fortunate for you.
If abnormal cells are found from a smear, the colposcopy and LLETZ will identify them more closely, but of course if there are no abnormal cells found, then there is no further checking done.
I think it’s natural for everyone who has had a cancer diagnosis to be fearful of recurrence, but the best thing we can do is attend every check up and be vigilant for any symptoms. I was lucky to have my recurrence picked up on a regular 3 monthly check, as I had no symptoms at all. It was a big shock for me as I’d always been told to look for symptoms like pain or discharge.
I hope you’ll continue to remain well and not have any further issues, and thank you for sharing your experience with the group.
Sarah xx
I suppose I think of myself as lucky in some respects as I did have symptoms which then led me to the doctor and my original diagnosis. But I must say I have never asked the what if questions because I know there are no answers to those. I had to learn to deal with the hand I’d got and, like you, focus on my treatment/outcome.
I’m glad you’ve got a loving family round about you-that’s always so good, but sometimes it’s very helpful to speak to others, even if they’re strangers, because they know what this feels like when others might not be quite able to understand. You’ve made a first step in connecting with others by making a post here and sharing your story. I know what it’s like to feel anxious and alone, but I hope you can at least feel among friends here, and we’re about the same age!
I’d like to encourage you too if you would like, to reply to some of the other threads which pop up-it would be so kind if you could share your experiences with new members facing a radical hysterectomy particularly. I’m sure you could offer some lovely support to them.
Please stick with us anyway-you are very welcome to be here and I hope you find it a good place for any help or questions.
Sarah xx
Hi Serena77
It’s good to be looking forward with positivity, so that’s a good attitude to have. Some ladies move on after surgery or treatment as they don’t want to dwell on their experience, which I completely understand, but it’s an especially difficult time when you first receive a cancer diagnosis.
I always appreciate seeing ladies coming back to the group to reassure others facing similar things, when they might really appreciate some extra support from someone who has been through the same.
I’m 62 with 2 daughters in their 30s, so it’s good to connect with someone at the same stage in life!
Sarah xx
