Good evening everyone,
I have been lurking for a little while but now am wondering if anyone can give me any advise or information as things have taken a definite downturn for me!
Briefly, following pelvic pain(I have a history of endometriosis many years ago) my gp referred me for an ultrasound at the start of January- this I had to chase and she then put me on the 2 week path to speed it up - the lining was 6mm and felt to be fine so I was taken off the path and told that they would arrange a hysteroscopy. Again I chased it up as the pain was becoming very difficult. I had by this stage had a very heavy bleed. I managed to get a cancellation for 2 days time after 3 days of phoning round (the normal wait can be about 6 months apparently). I was super nervous but the dr was brilliant, however I noticed that the atmosphere in the room had changed and he became much more serious. He was very apologetic and persevered and took 5 biopsies saying he didn't want me to have to come back and have it done under GA. He then put me back on the 2 week path, saying it was because it was Saturday when I said I had been taken off the 2 week path.
On the following Monday I then had a call from the hospital to come for an urgent CT scan in 2 days time and then 2 letters the next day for urgent blood tests and an MRI the following Sunday. I was reasonably hysterical by this stage - the gp surgery were reasonably useless as they didn't know what what was going on and even when the consultant faxed the biopsy results they had left them on one side as they didn't deem it urgent. At the end of the nightmare week I received an appointment for the following Tuesday with a cancer gynaecologist (I googled him) at a third hospital. By the time I went for the appointment it was no surprise to be told I had Grade 1 Stage 1a cancer - he was planning to operate within 2 weeks but then I ws phoned the next day to say that they were transferring me to a cancer centre as the mdt had seen a shadow on the cervix. I had previously been told that they had already reviewed me in their mdt but hey lots of balls seem to be being dropped on my journey. Incidentally, my gp was sent a copy of the mdt report about me that said I had mestastases in my lungs and it was only when she looked closely at the name on the scan she realised that they had made a mistake as it wasn't my scan.
Due to Easter there was a slight delay in getting to the new hospital but they booked me in for a hysterectomy saying that it looked like a shadow and it wasn't always easy to see on the MRI as the tumour was low in the uterus. On the morning of surgery the registrar told me that their mdt disagreed with the original mdt and that the cervix was clear. This was 4 1/2 weeks after the MRI. The next morning a very junior doctor came round and said everything had gone to plan and it was very straightforward. I queried the cervical involvement and whether anything looked amiss - he looked perplexed at the question and said that no everything appeared fine and I could go off and do anything I wanted.
I recovered very quickly (it was laparoscopic) and decided to put off my follow up appointment partly because I wanted to see if the original pelvic pain I had was gone as this had never been addressed. I wanted to put it off for a week but they put it off for 2 weeks.
On Wednesday this week I went to my gp to get some vitamins and she was asking about whether I had been told I could have hrt. I explained that I hadn't been yet and she checked the screen and looked at a letter that had been sent. Scrolling through I saw LSVI and so we printed it off and went through it. she was obviously not supposed to have told me. My first reaction was to laugh ...and then to cry.
So, my Grade 1 Stage I tumour has become a monster in the space of 4 weeks taking up the whole of the uterus and cervix and as it is friable prone to spreading itself as it is apparently now Grade 3 - it's stage is uncertain....I still cannot really get my mind around it but it seems so weird that one has an MRI to define the size and decide on the surgery and when they actually get in there it is not what was expected - what was the point of the MRI? And surely what came out was not what was expected - were they all napping during the surgery? My worry is that they probably should have done a more extensive surgery if they had actually had the full information.
I am very sorry for the super long post but I thought it may be helpful to give a bit of background. I suppose my question is whether anyone else has been in a similar situation? My original CNS who is very good and competent contacted the new CNS team who then phoned me and said that they will be offering chemotherapy as a first resort. However I have lost all trust with them and it seems a bit pointless if this can have grown so quickly in such a short time, bearing in mind it is now 41/2 weeks post surgery and the same time that my small, contained tumour grew from the MRI.
Thanks for reading.
Cx
Hello ,
Welcome to the community and as oldady has said many lurk before posting including myself. It sounds like you have had a lot of very confusing information given you so its no wonder you lack trust in your medical team. There is many questions that need answering, and its understandable to feel anger and frustration. Histology reports from post op appear to be around three weeks after although there is some who have waited different times. This helps to determine possible extra treatment like chemotherapy and radiotherapy. After they had the results mixed up have they double checked that the results they have for you are the correct ones is a definite question to ask. If they advice chemotherapy then its usually what they feel best for the individual patient like all treatments. Grade 3 cancer cells are faster growing then grade 1 and scans don't always give the full picture. It would of been better for your consultant to speak to you about this rather then your GP saying and they have to tell you what has been passed on to them, I am sure your GP is rather uncomfortable that you had no idea and that's certainly not exceptable at all. If results are correct then chemotherapy will help to clear the cancer cells as a few have had it for this reason. Mine was stage 1a grade 2 but was borderline but I only had surgery I have to think if that wa me being told well actually we got it wrong and its actually grade 3 and stage unknown I would be very concerned but I would not be very trusting either and would be wanting a second opinion but then I wouldn't want to dely treatment either. Treatment is ultimately up to the patient and options are looked at advantage over disadvantage.
I am sorry you have been so messed about and your CNS is the first port of call to ensure your being told everything now so you can make a proper informed decision.
There are a number of ladies here who have had chemotherapy and radiotherapy and I am sure they will come along soon to give you their experience.
But for now I just like to send you a gentle hug and support
_GBear Xxxx
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