Diagnosed today

Hello Nol and welcome to the group.

You’ve had a real shock with your diagnosis and it will take some time to get your head round things, but let me promise you straight off that it will get better! It may not seem like that right now, but it will.

First thing to reassure you with is that it will be treatable. No matter what stage you are diagnosed with, this cancer is treatable. But having CIN3 and a lletz suggests that it will be early stage. Your cervix would have been really abnormal looking with a more advanced cancer, so they obviously didn’t see this when you had your lletz treatment. You’ve had previously normal smears,so that’s good. Cervical cancer is typically slow growing and takes a long time to develop. 

Sometimes, unfortunately, there is cancer found when the tissue taken at the lletz is analysed. Cancer can sometimes be too small to see with the naked eye, hence the need for pathology which will show even microscopic cancer. 

It’s standard practice to have the scans next to determine the stage of the cancer and the treatment plan, and early stage cervical cancer is usually dealt with by having a radical hysterectomy. Until you have the scans, it’s impossible to say what might actually happen next, but the lower the stage of the cancer, the less chance there is of it spreading anywhere. Hopefully it can be dealt with by surgery.

We have all had to wait and the waiting is an awful time because it is filled with the unknown. Once you know what stage your cancer is, and how you will be treated, things become much easier, and less anxious and stressful.  There is always a wait for scans, wait for results, wait for a plan. We just want to get on with things but it’s the same for all of us. 

Trying to keep busy and distracted helps, as do relaxation techniques and Mindfulness, and there are lots of helpful free apps out there you could use. We have some other ladies who have recently been diagnosed, and who are waiting for treatment to start, or have just had treatment start, or surgery. I’m sure you’ll get plenty of responses and hope that you will find the group helpful and supportive as you go through this.

You can ask any questions, rant, moan, whatever you want here and it’s a safe place. We can’t always tell family and friends how we’re feeling, and it can be good to talk to others who are going through the same thing. Please never feel alone. We can all help you through.xx

Hi Nol 

I agree with Sarah, the waiting is so hard. I also had MRI,pet then a CT planning scan. The waiting time frame seems to follow a pattern. So I had a procedure done as an outpatient on 05/12/21 following a smear. It's called a hysteroscopy where they took a biopsy for examination. Following that I had my MRI and got my diagnosis on 04/01/22. What a shock I got!! Stage 2b cervical cancer. So after the numerous scans and appointments with consultants, my treatment begins this Thur (10th). It's realy hard trying to concentrate on anything but after my initial shock wore off I came out of work to concentrate on myself, I continued with outings with my walking group and had lots of visits with my grandchildren and got things done around the house that I put off due to work commitments. Things do settle down after a period of time. I also got councelling which ready helped but you will get through this. 

Best wishes 

Angela xx

Thank you so much for your reply Sarah. I really appreciate your ideas for distraction and your positivity. It is just what I needed  x

Hi Angela, thank you so much for your reply and sharing your journey so far.

I have been considering councelling so I am glad to hear this helped you. 

Hope your treatment has got off to a positive start and that you are feeling well?!

I have my first consultant meeting next week. X

Hi Angela,  

I’m also new to the group.  I was diagnosed like yourself with stage2b cervical cancer on 23rd September 2020.  My two previous smears were clear.  I had spotting going on for a few weeks (during our first lockdown) so after speaking to the practice nurse I was referred to the gynaecologist.  He took a couple of biopsies which came back as benign fibroids, so I was admitted to hospital on July to have the fibroids removed.  

All went well for a few weeks and then I started spotting again.  Back to the gynaecologist who examined me again and said everything looked fine but it didn’t feel right (cervix) so he took more biopsies which can back as cervical cancer. 

My treatment started on 2nd November 2020 and consisted of chemo on the Monday of each week with daily radiotherapy for a total of 5.5 weeks.  Topped off with two over night stays for 4 blasts of brachytherapy.  

I am now 14 months cancer free and continue to go for 6 monthly checkups.  

My tastebuds were affected for around 7 months (which is unusual with cisplatin) but they’re more or less back to normal.  I was extremely tired when my treatment finished.  

You will get through this! Remain positive and I wish you well xx

And thankyou katew. I try hard to be positive and push my way thru this process xx

Hi Nol.  

First of all may I say how sorry I am to hear of your diagnosis.  It’s very raw for you and very early days.  This in my opinion is the worst part… knowing you have cancer but not having the big picture.  Waiting for scans, waiting to see consultants etc etc.  

I’m 14 months cancer free now.  

Once you have a treatment plan and a way forward things will seem less daunting.  .  You have to get your head around the whole scary cancer diagnosis and then, I promise you… you’ll find an inner strength you didn’t know you had.  

I replied to Angela with my story, I meant to write and include both of you.  I wish you well in your cancer journey and there’s always someone who can give you words of comfort having been there before.  Xx

Hi Kate and welcome to our group.

Thank you for sharing your story and giving us the positive news that you are doing so well. I’m sure that will give a nice boost to our ladies who have just started out on treatment or are waiting to start. 

Sarah xx

Hi , I went in 4 weeks ago for a lletzz for what they said was pre cancerous,  I thought I was waiting for results to say all sorted but they called me 2 days ago and told me I had something rare , pre cancerous and cancerous cells at the same time ....I went for a xray of the chest and I'm waiting on a mri scan and my appointment to discuss treatment in 3 weeks!! I'm 33 with 3 young children and I'm petrified , the anxiaty and the fake symptoms that comes with is making me panic that it's gone too far , I don't have any advice unfortunately but you are not alone , at least when it's staged we have a plan x

Hi Cerrys and welcome to our group.

I’m sorry to hear what’s happened with you, and appreciate that must have been a big shock for you. However, if you had gone in for a LLETZ and they found cancerous cells at that point, it will hopefully mean that the cancer is very early stage. When cancer is advanced/spread it can be much more obvious even to the naked eye. It sounds they didn’t see an actual tumour at the LLETZ, but the pathology identified the cancerous cells. Early stage cancer is not likely to spread as it can be very, very small. 

It’s very tough to be in limbo and waiting for scans and results, but it will feel much better for you when they can tell you the stage and treatment plan. Early stage cancer is most likely to be treated by a hysterectomy, but you won’t know until all your results are brought together.

Try not to panic too much yet, as you don’t know anything concrete right now, but I know it’s hard. Keep chatting here with us as you go along-there’s plenty support and advice available in the group and we’re all here to support and encourage each other.

Sarah xx