Is it normal to be paralysed with fear awaiting MRI?

Post as much as you like, we all want to help you get through this time.
Oh yes, I felt that way. I had chest X-ray at same time as MRI scan, and was convinced mine had spread further, was only a random comment to GP(didn’t realise she had the results of chest X-ray) about being concerned it had spread, and she told me the X-ray was clear, was so relieved.

Even though mine had spread …few cells on ovary, I can’t tell you how much calmer I was once I knew, it just takes away all the stuff going on in you brain, and you can then feel more in control knowing what needs to be done, rather than worrying about what the hell is going on in my body.  

You will get through this x

Thank you for taking the time to reply again, I hope you got this level of support when you were going through it. 

can you remind me what your initial grade and then stage was please? I’m low grade and it’s apparently not spread to my cervix - did you have your cervix checked at the time of your initial biopsy? And I think you have the all-clear now?

you’re so very kind to keep replying to me 

My diagnosis was a bit confusing to start with, following awful hysteroscopy with lot of bleeding. Biopsy of womb came back with pre cancerous cells, with report saying suggesting there was cancer. Following MRI they sent me for PET scan as MRI had shown “prominent but not enlarged lymph node”. PET scan showed nothing in lymph nodes but few cells on ovary. Cervix was clear. So I got told stage 3a just ahead of op. Post op nothing changed was still stage 3A, and it was then I got told grade1/2.

Yep, all clear now. They took everything out on 2nd December last year, and PET scan just before op stated no evidence of disease elsewhere.  I had follow up radio and chemo to make sure there weren’t microscopic blighters hanging around. Had scan 3 months ago, and no evidence of disease.

This site helped me so much during my bad times, even if this was just reading other posts about how others had found things. People here understand what you are going through, as we have been there ourselves.

hang in there.

No need to feel sorry for posting. I would much rather someone keep posting and asking questions than sit at home and worry. 

I also felt really anxious before my scan and my mind kept thinking the worst- that it had spread and nothing could be done. It was hard to think of much else. Luckily for me I did not have to wait too long for it to be done and for the results to come back.

Your biopsy showed it to be a low grade cancer and these tend to be found at an early stage and are far less likely to have spread at the time of diagnosis. At the moment it sounds like the cancer cells were only found in a polyp so literally at the earliest possible stage. Stage 2 has pretty much been ruled out when your cervix was checked. Although it is theoretically possible that some cells have spread further afield you have not mentioned any symptoms that would suggest it has gone further. 

I think try and focus that the MRI is a positive thing as it will clarify exactly where any cancer is so that they can accurately treat it. For the majority of ladies, whichever stage 1,2,3 then a hysterectomy is normally offered. After the surgery there can sometimes be a bit of follow up treatment and that is to try to ensure nothing is left behind.

I do understand- it is scary and you are doing really well in being able to reach out on here, calling the Support Line and getting support from your GP.

Once this scan is done, I think things will probably feel a lot more under control as you will have a plan moving forward. This limbo stage is really tough.

We are here for you

Jane

Thank you Jane, everyone on here is so kind and supportive.  I feel as though I'm in purgatory although I've managed to take my mum out for a few hours today.  She has dementia so I try to take her out once a week to give my dad a break but I could only be with her for a few hours today as she is hard work and I felt as though I couldn't cope with caring for her today, so now I'm feeling guilty about that too!

I keep reading the stats, they seem to be in my favour, as are the comments from the medical professionals but I just feel completely lost in all of this, I truly keep thinking that this is the end for me.  I've been through a lot of trauma the last few years and I had recovered and was living a lovely life - I feel as though I'm not meant to be happy.

I'm so happy that you are all clear, you sound like a wonderful person and I can see how supportive you are to women on this page.  Do you find from the majority of posters that we get through this?  I'm only 46, I've been told that I'm quite young for this to have happened, I'm not really peri-menopausal yet.  I have adenomyosis which is caused by high levels of estrogen and so I'm assuming that this may be the cause.

I'm concerned that you say that your cervix was clear (as it mine) but that cells were found on your ovaries - this has sent my head into a spin thinking that I may have it in my ovaries too - I've not had any bleeding at all, and my stomach is always swollen from the adenomyosis.  Did you have any symptoms of ovarian?

Sorry for asking so many questions - being single isn't helpful as I have no partner o turn to/rely on, my parents are elderly (my mum has dementia) and my friends are being great but they all have their own lives.  I really appreciate your help 

Hi again Lizbot, every one of us on this group either has or has had endometrial cancer. Most of us here had or have had stage 2 or above and we are still here! (Most of the stage 1 ladies tend to move on post op histology). After I was diagnosed I was very anxious, as all of us are, but I found a way through it and so can you. I identified that my anxiety was worse first thing in the morning, so that usually when I phoned my CNS or the Macmillan helpline - and some weeks that was every morning! My CNS soon learned to recognise my voice and I didn’t even have to say my name when I called! 

Would you like to ask us any questions about the MRI? Have you had one before? Do you know on which day your MDT meet? That should give you a good idea of when you will get your results. I was very fortunate as my MRI was on a Tuesday and the results were back by the time my MDT met on the Friday morning so I got them three days later, but some ladies have to wait a couple of weeks. 

I think we all remember the stress of waiting and our thoughts getting away from us so understand something of what you are feeling. Part of me was amazed I could do anything while my mind was in such a whirl. Sometimes I had to go for a walk round the block in desperation although I did stick to daylight for that particular coping mechanism.

I felt the MRI was a really good step to get done and to go on forward from there. You are not alone.

Hi thank you for your response.

I've never had an MRI before, I'm stressing about that as I had my gallbladder removed 5 years ago and I'm not sure whether I have metal clips in my stomach, but they've told me that I should be okay.  What about fillings, I have quite a few.  I didn't think to ask about that!

My MDT meet on a Wednesday which isn't helpful as my MRI is on Thursday so I assume that I may have to wait a week.  I really don't know how I'm going to cope, I'm currently on a cocktail of propranolol, lorazepam and Rescue Remedy.  

You say that most ladies are diagnosed with Stage 2 - I hear that this is still a good prognosis for curing this, is that correct?  My Consultant feels that it won't have spread due to my cervix being clear but I just keep thinking that if she knew that for certain, then there would be no MRI, which is a ridiculous thought as I know it's the next step.

Are consultants/MDT usually close to accurate with regards to their outlook when first grading?  My nurse at my GP has told  me that it seems positive and the letter from the consultant says 'curative.'

I'm calling the CNS and/or MacMillan daily at the moment, don't even know what I'm calling for half of the time.  I just feel adrift and terrified.

I keep seeing (got to stop Googling but a lot of it is positive) that both Stages 1 and 2 have an 'excellent' prognosis - does this generally seem to be the case from the ladies on here?

Thank you all so much, you wonderful women 

Hi Clem, thank you for responding.  I'm actually frozen at the moment, having to force myself to do things.  I've cleaned up and mopped downstairs this morning which took so much effort.  I've taken my mum out for a couple of hours.  I'm hardly eating, I've no appetite.

My anxiety creeps in as soon as I wake up.  I've started taking .5mg lorazepam at around teatime and then another half before bed and it really helps.  I think I'm going to have to continue to do this until I have more answers etc.

Can I ask what grade you were please, and then what stage this led to, and whether you have recovered?  Also did you have any symptoms?  I haven't had any - I had really bad pain in February and so an 'urgent' scan was arranged, which didn't take place until August.  They saw what they thought were polyps, lots of polyps were removed during hysteroscopy on 12th November.  One of them has tested positive for cancer.  A biopsy of my cervix was taken too, and that is not showing any malignancy etc.  My consultant has told me that she is confident that it won't have spread but I'm just dreading the worst.

Thanks again for taking the time to respond and any answers you can give me would be more than appreciated.

Liz