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.
I'm glad you have plucked up the courage to post here. I too lurked for quite a while before I contributed. Everyone is very ready to offer support and help. I'm sure one of the Champions will be along soon to welcome you and offer better advice than I can.
LVSI is one of those things that can only be confirmed from the post surgery histology. I had a shock when I was told I had it as I had never even heard of such a thing. Over the last few years I have read several posts where the histology has shown further cancer in the tubes or ovaries although this was not visible in earlier scans or detectable during surgery. .
I was told after diagnosis that if the MRI indicated that it was more than a Stage 1a , my surgery would have to be done by a more senior team at a different hospital; So I thought the worst when my surgery was rescheduled at the bigger hospital; but afterwards it was still staged at 1a . So scans can be misleading. I think it is it is more likely that your scans were not very clear than that things have grown quickly as Womb cancer is regarded as quite a slow growing cancer.
It's a pity that the way things have been communicated to you has been so unsatisfactory and I can understand your lack of trust. I hope you will soon get a face to face meeting with oncologist/gynaecologist and will be able to get answers to your as yet unasked questions.
(Class of 2015!)
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
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welcome to the site although I am sorry that you have had to join and that you have been through a traumatic few months, it sounds like an emotional rollercoaster, no wonder you don't know what to believe anymore. I was told on day one that only the post op histology would confirm my diagnosis, that they could give me a best guess based on my MRI scan and my hysteroscopy, but only the lab analysis would confirm it.
In terms of surgery, did they tell you what would be taken? It's worth confirming, as if you have part or all of your cervix in place you still need regular smear tests. They took my ovaries, tubes, womb and cervix.
When is your appointment with your surgeon? It might help you to start a list of questions for them, the eve appeals gynaecologist nurse specialist can help you prepare for your appointment, they are at https://eveappeal.org.uk/supporting-you/ask-eve/
You are also entitled to ask for a second opinion or to be moved to another hospital if you are not happy with your team, the only thing to watch with that is that it might delay your treatment.
I'm sorry that I can't offer any wisdom about what happens next but the others will hopefully be along soon to share their experiences
If you need any practical assistance or support the Macmillan helpline can help on 0808 808 0000, I've also heard great thinks about maggies centres.
lots of love
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The MRI is to give them an idea what they are dealing with before the op. As others have said, the definitive staging is after the post operative histology.
I have grade 3 had no LVSI , but was told that either way that is not particularly important. The letter post op to your GP should say what they removed. Would be surprised if not uterus and cervix at least. A friend of mine had just her womb and cervix out, not for cancer, then they found cancer, so opened her up again and took her tubes and ovaries. So that is do able . She was early stage so that was it.
I could not have lymph nodes out or omentum biopsy but there are 2 medical schools of thought on wether or not to remove lymph nodes, so that is no biggy whether they did or didn't.
The solution then is systemic treatment with chemotherapy. Zaps the stragglers wheteverthey are. I am also having pelvic radiotherapy, targeted at uterus' surrounding area, pelvic lymph nodes, vaginal vault
The most recent clinical trial says either chemo, or radiotherapy, have similar outcomes. Hence my consultant said radiotherapy, and gave me the option of chemo. I'm having the lot to throw the kitchen sink at it.
My chemo/radiotherapy started 8 weeks after my hysterectomy. It's very capable with, but takes it out of you a bit so they like you to be well recovered from the op.
So, sounds like you are still on track.
Good Luck, and Hugs x
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