Following an infection and MRI, cancer has been found at the top of my cervix. A consultant told me an operation is not the answer and it’s not ‘new’. She told me that I need a PET scan to see if the cancer has spread. They are not sure if it’s in my lymph nodes - MRI of my pelvis showered the lymph nodes enlarged but did state that it could have been the infection. I’m very afraid and my mind is racing…. I had a biopsy but the nurse called and said they couldn’t get anything from the biopsy and could have just been scar tissue. I had a LLETZ procedure in 2019 to remove pre cancerous cells and my smears after that have been clear. Last one in 2023. This has hit me out the blue. No pain during sex or bleeding. Periods irregular for 6/7 months but put it down to menopause…. I’m so incredibly afraid that the cancer has spread and my mind races a lot to the worst case and death…. I’ve yet to have my scan and now a biopsy taken under general anaesthetic. I’ve got a good family and I’m trying to stay positive but it’s soo hard. I’m trying not to google but I’m not sleeping, my mind races to thoughts of my young children not having a mum and it’s breaking me. I’m 44 this year and I’d like to think I’m strong and healthy. How do I cope with this being in limbo and how do I gain strength to deal with this? Anyone else had similar?
Hi Mummyof2 and welcome to our group.
I’m sorry to read you’ve had a cancer diagnosis, and the fear of what’s next is coming through in your post. It’s all very scary, isn’t it?
I’ll try and go through some of your worries and see if I can help settle a few things for you, having been through this myself more than 7 years ago now. I do understand how your mind can race ahead of what you know so far, but try to focus on what is known now at this point.
I remember probably my biggest fear was that the cancer had spread as I’d not gone to the doctor when I did have symptoms, which for me were pain and post menopausal bleeding. My diagnosis came after a biopsy, mri and ct scans. It hadn’t spread, other than a little bit into the surrounding tissues. My doctor did explain that surgery wouldn’t be possible, and I would need chemo and radiation.
A hysterectomy is only normally possible with an early stage cancer, so chemo and radiation is a very common treatment plan for our cancer. It can also be very successful.
I’ve had a biopsy under general anaesthetic-this was just to check whether I had scar tissue after treatment. It’s a short procedure-I was in hospital as a day case, taking the biopsy took about half an hour, and I came home after this had been done and I’d had a cup of tea. I felt a little uncomfortable and had some bleeding, but nothing major and I was fine in a couple of days.
I’ve also had a petscan, and found this much easier to go through than the mri. It took about an hour in total, but most of that time I was sitting quietly in a room waiting for the radioactive tracer liquid, which was inserted via cannula in my arm, to go round my body. The petscan identifies any areas where there is “uptake” in cells, and mine didn’t identify any spread. It just lit up in my cervix where my tumour was. My lymph nodes were clear.
The petscan is another piece of the jigsaw of determining where exactly the cancer is, and along with the biopsy and mri it will establish the stage of the cancer. Once all the information is gathered, the best treatment plan can be decided,
There is a wait normally for results from the biopsy and scan results, and these results are discussed at an mdt (multidisciplinary team meeting). This is where all the staff-radiologist, oncologist, cancer specialist nurse discuss all patients currently undergoing tests or treatment and decide your individual plan. Normally you’d have an appointment with your consultant to discuss what has been decided. So, unfortunately the being in limbo will continue for now.
I’d recommend trying to keep off google looking for information without a confirmed diagnosis and plan-just for your own sanity! It’s likely to increase your anxiety and not really serve any purpose. You can read information which might not be reliable, and might be wrong. Google cannot diagnose you, and you are an individual, so if you can leave it alone and trust your doctors to make the best decision, that should make things easier for you.
You ask about finding strength to go through this. I wasn’t sure I could find this at the start, but I have always tried to be as positive as possible. I found things easier once I had a treatment plan, and had something to focus on. The strength was actually there, and when faced with cancer, it’s possible to find a strength you didn’t know you had, especially when you have children. I have 2 daughters, who are adults, and I told them I had no intention of leaving them!
I know how worried you are right now, you’re scared, you’re facing the unknown, and that’s a really horrible place for you to be. I’m hoping you’ll feel better once you have more information and you can get started with treatment.
I’ve said I was diagnosed more than 7 years ago, but my cancer did come back. However, I have now passed the important 5 year milestone of having no further recurrence, and my consultant considers me cured.
I hope that I might have given you some hope to tackle this. There is support for you here in the group for any questions or worries you might have and there are ladies who are very happy to share their experiences with you. Please keep in touch and let us know how things are going.
Sarah xx
I’m not sure that focusing on stage 4 cancer without a confirmed staging is necessarily a positive thing to do, as you may read some stories that might scare you rather than reassure you, but I can see that you are looking for hope.
My cancer was considered “advanced stage cancer” when it came back, but my consultant never used the words stage 4, only “recurrent cervical cancer”. Focusing on a stage number would not have been helpful for me personally as I might have been thinking at stage 4 I was perhaps beyond help. I did know, however, that things were very serious for me.
But even an advanced cancer like mine could be treated. It became very aggressive and spread all over my womb and bladder. But I was prepared to undergo any kind of treatment or surgery that might work. Luckily I had an extremely positive consultant who believed she could help, and I owe my life today to her and the other 2 surgeons who worked with her.
It is less usual, but not impossible, to be diagnosed at stage 4 from original diagnosis, but even then there are treatments which can help keep the cancer at bay for a long time even if it cannot be cured.
Once you have the petscan you’ll know where you are, and things may well not be as bad as you are imagining.
Sarah xx
