Hello everyone,
I’m new on here and just wondering if anyone could help me out maybe any positive stories or amwhst to expect. Would appreciate all honesty too X
In May 2024 I was referred to oncology team & had an MRI as was having symptoms such as bleeding, pro longed heavy periods etc.
The MRI shown a large mass which they said ‘likely represents a cervical fibroroid but recommended a biopsy’. However, oncology was confident that no biopsy needed and I was referred to benign gynaecology.
however, by July I was presenting with extreme bleeeing gushing when using toilet loosing blood clots. I presented at emergency gynaecology sometimes 2 a week. I was given prostap injections, hormone medication, Tranexamic acid ( for 4 months) received blood transfusions etc.
as a result on 4/10 I was given a full hysterectomy. After surgery I have now just been told that I didn’t have a fibroid but I had a 7 cm tumour aggressive grade 3. They made a mistake!!!!
I a m in total shock, upset, scared etc I am awaiting further tests to see if spread. I have just been told that the surgeon had no idea, everything surrounding was reported as normal and no bulky nodes. However, apparently this cancer can spread by blood vessels.
im so scared as this has been inside me for so long as I was told it was a fibroid.
Can this cancer of been contained & not spread?
thank you sorry it’s a long post just very anxious! Xx
Hi KoT and welcome to our group.
I’m so sorry to read what’s happened to you, and no wonder you are scared. I haven’t seen any similar stories within the group before-from what I’ve read here, and in my own experience, it is standard for biopsies to be taken to identify polyps/fibroids/ cancer before any surgery could be considered.
Given the size of the tumour, a hysterectomy would not have been performed if a biopsy has been taken and identified cancer as it was too large. You have mentioned the grade as being stage 3, but you haven’t mentioned if you were giving any staging information? My tumour was 3.8cm when I was diagnosed which was too large for a hysterectomy and I was staged at 2b. The danger of doing a hysterectomy at this stage and size is the risk of the cancer spreading, so standard treatment would be chemo/chemoradiation.
Can I ask what the next steps will be for you? More scans for example? None of us can say if the cancer might have spread so you need to know from your next tests if it has, in order to get the correct treatment plan put in place. Cervical cancer can spread via the lymphatic system or blood vessels so it will be important to establish if this has happened.
This is an awful situation to find yourself in, and if I were you I would want to be making a formal complaint, but I appreciate you may not be in the right mindset to do this at present. When are you next seeing your consultant? You should take some time if you can to think of the questions you need to ask about what has happened and why, and what will happen next. I am so sorry this has happened to you.
Sarah xx
Hi KoT
My tumour was growing into my vaginal and had spread a little into the tissue around the cervix-this is called “locally advanced” cancer. That’s why a hysterectomy was not possible for me, but it had not spread to other organs or lymphnodes/blood vessels.
At least your scan is not too long away-do you know what type of scan it is-MRI, CT or PET scan? They all give different types of pictures providing different information.
The grade of cancer, on a scale of 1-3, basically describes the level of abnormality in the cells, with 3 being the most different from normal cells and potentially most aggressive. Staging will be on a scale of 1-4, and I see your provisional stage is 1b3. This could change depending on your scan results as you say.
In addition to the grade and stage of your cancer, they should tell you the type of cervical cancer-you have as there are several different types with some being more aggressive than others. It will be important to have this identified.
I would be angry too in your shoes-and would definitely be asking why no biopsy was done on such a large tumour. Try and makes some notes of timescales for when things happened, and what you were told, as this will be useful if you make a complaint, and continue to do this from now on. You are also entitled to request your medical records.
Sarah xx
The petscan will be a good one to have but it does take a while. You’ll need to have a radioactive tracer dye put in via a cannula, and then sit quietly in a room as the tracer makes its way around your body.
When I had mine, I wasn’t allowed to move about or leave the room, and wasn’t allowed to take my phone in. I was just sitting for around an hour, then had the scan which I found much easier than the mri. You lie on the table while the scanner moves over your body but you’re not enclosed like you are in the mri scanner. From memory this took around 20 minutes for me. The scanner will highlight any “hotspots” anywhere in your body to see if the cancer has gone anywhere else.
I had mine to check things as I had a recurrence some months after my chemoradiation treatment when I was first diagnosed. Only the new tumour in my cervix lit up, so it still hadn’t spread anywhere else. It was just a tumour in the same place again.
I know it must be really scary for you going through this when it was such unexpected news, but I hope everything goes well with your scan and you get some answers about what might be next.
Sarah xx
You can click on someone’s username to find out their story-diagnosis/treatment etc if they have filled in their profile info. You might want to do this yourself as it can be helpful for others to read.
Sarah xx
