Newbie here

Hello Joanne Louise

Welcome to the Online Community.

I am sorry to hear that a mass was found in your uterus after your CT and MRI. I can understand how scary it must have been to be told that. It is good that you have been assigned a clinical nurse and are able to ask questions when you need to. Mine were brilliant. She is right though that unless there is a biopsy before hand- no one can tell exactly what you are dealing with until the post op pathology comes back. I am not sure why you have not been offered a biopsy before hand and can only think that because of the size of the mass that has been found then the hysterectomy would perhaps naturally be the next step? There may well be other reasons for the mass but I would have thought that whatever it was would need to be removed. The consultants by nature are so experienced that they would already have a good idea just from the scans. Mine did. 

In my case I had some bleeding so I had a biopsy done and this showed it was cancer. Then after my hysterectomy I had the full pathology back that confirmed the actual stage and grade. Mine was a carcinoma sarcoma. If you click on my name, my profile will come up and it will show the timeline of what happened. My surgery was done 4 weeks after my first symptom. So it sounds like they have put you on the more urgent list for the surgery? 

I would recommend that you think about contacting either your hospital or if that is not easy to do then consult with your GP to get some more answers.

I would be asking about the timing of the hysterectomy and whether it may be done earlier or if there is a short notice cancellation list you could go on. I would also ask about the pre op checks and when they may be done as it would be good to get these out of the way.

I would want to discuss the pain you are in and ask for support/medication.

And I would ask to be talked through the results of the scan and ask for some clarification about whether they are sure it is a uterine sarcoma or if there is something else such as fibroids that could be the mass. I would also ask why they are unable to confirm by biopsy or other means? whether or not it is a cancer. If your doctor has been sent these results they should be able to talk you through what has been shown.

I am suggesting this as after my diagnosis there were a couple of weeks when I did not know what was happening or when it was going to happen. I was really anxious and starting to get some pain. I did an online consultation with my GP who was able to contact the hospital consultant directly, get answers and more importantly got back to me 2 hours later with an appointment to see the consultant on the following day which was a Friday. I saw the consultant for the first time on the Friday lunchtime, had my preop checks on the Friday pm and had the surgery on the Monday. It might be worth a try.

I can understand that you don't really know what to say to family. In these cases I found that honesty was just the best policy. They have found a mass, we think it maybe cancer but we do not know for sure and you will be having an operation. I know its tough though as when I told people they naturally had more questions and you don't yet have the answers to those questions. 

I am sorry that you are going through this and I hope that you are able to speak with someone soon and get some more answers. In the meantime if there is anything else we can do to support you, please do ask. There is also a Support Line on here that you could give a call and speak to someone if you think that would help.

Jane

Thank you so much for this response. It is so helpful.

The nurse said they maybe didn’t do a biopsy because they didn’t know what they were dealing with and sometimes upsetting it can make it worse. (At least that’s what I look from the conversation).

I am usually a person that will just sit and wait and I have a high pain threshold (usually) but every bit of twinging is making me paranoid. 
I will get onto them Monday. 

thanks again xx

That does make sense - what the nurse is saying about the biopsy. From my experience and from being on here it seems to be that biopsies seem to be taken when there is a thickened lining or post menopausal bleeding. 

I can understand about the waiting- it is hard to just sit and wait and I think contacting them and finding out a bit more may help. I still worry about every twinge and I think from my point of view, having had cancer and being through the treatments, it does make you aware of every little twinge. Any aches and pains I immediately think the worst. 

From my own experience I found that I did have a feeling of fullness, uncomfortable and some pain before the surgery but my womb was quite enlarged and just having something in there that shouldn't be- I could feel it sort of pulling and a sense of something that was there that shouldn't be- my womb had always been in one position and something was now irritating it and causing me to notice it more. So to have a mass in your womb it is bound to give you some pulling/stretching/ possible crampy sensations I would think. I remember my nurse saying something similar.

Let us know how you get on and anything else just ask 

Hi Joanne Louise, sorry to hear about everything you've been going through. I think it would be helpful for you to get more information about the results of your scans and what they think they are dealing with. Jane has suggested some very helpful questions to ask which should give you a clearer picture about your situation. I was diagnosed with endometrial cancer last July. I was placed on a fast track referral by my GP after experiencing a slight pinkish discharge and some bright red spotting. I had a transvaginal scan after which I saw a consultant who took some biopsies from my womb. She said I had 3 fibroids but also a thickened lining. I saw her a week later when she confirmed I had cancer. After that I had a CT and an MRI scan which I understand are used to determine the staging and grading of the cancer and also to decide on the treatment. I subsequently had a hysterectomy followed by brachytherapy, a form of radiotherapy. I didn't tell anyone anything until I got my formal diagnosis as I didn't want to worry them unnecessarily. I live on my own so had to rely on telephone calls to my immediate family and friends. I got a bit anxious about it but felt better and relieved when  I had done it, one less thing to worry about. I hope you manage to get some more information soon about your situation and your treatment. Feel free to seek support and advice from this group but also have a chat with you CNS, mine were, and continue to be, very helpful and approachable. 

Thank you for this, I think those initial chats are all a bit scary and I certainly didn’t ask anything useful. I will ring on Monday and get more answers. Thank you. I hope you are cancer free now? Xx

It's always a bit daunting when you see a consultant. Even though I was expecting to be told I had cancer it was still a shock and couldn't really concentrate on anything else! It's usually afterwards when you think of all the questions you should have asked. My last MRI scan was NED, no evidence of disease so that was reassuring. 

I spoke to the clinical nurse again, the do suspect it is sarcoma, my operation date is the 5th of October and I have an appointment to see the surgeon on Monday.

I’ve asked to be on the cancellation list.

I guess there is nothing else I can do except get myself in the best possible shape for surgery. Even though I’m in constant mild pain they said it would hurt to go back to they gym so I went last night. Today I have a huge headache but I think it’s probably tension headache. 
thank you for your advice. It helps x

Hi Joanne Louise, it's a positive step that you have a date for your operation and a good idea to be placed on the cancellation list. The appointment with the surgeon will give you an opportunity to discuss the concerns or queries you may have. You will also have a pre op assessment at some point, mine was a few weeks before the operation. It involved basic checks e.g. Covid, blood tests, BMI, BP etc and going through a series of questions. Hope the appointment with the surgeon goes well. 

Hope your headache goes- probably right- tension headache with all the worrying. At least you have a date to work towards now. Cancellation list is a good idea. Gives you a bit of time to prepare for it all and as you say be in good shape for the surgery. If you have any change or worsening of symptoms do contact your CNS as this might help move things along a bit quicker. In the meantime if there is anything you need or want to ask . please do so 

Thank you x