STARTING TO SINK IN

I don't really know how to post a new comment on here and can only reply! Anyway, I need to reach out without stressing others out if you know what I mean....

I was diagnosed with grade 1 EC on Monday and am still in shock. I was kind of coping with it when I started getting pain in my right ovary area.. I've had an ovarian cyst there for years but when the hospital did the recent ultrasound, they said they couldn't see my ovary, let alone the cyst! Apparently this happens sometimes in older ladies. Anyway, I've been getting what feels like the usual ovarian pain for a day or so when I started spotting again, which has me worried now. What if the cancer has started spreading to my ovaries already? I hadn't bled at all for over 3 months until now and with the pain, I am really worried.. My MRI is on Tuesday and of course they will check everything but I am still writing to my consultant to flag this up. Do you think I might need to speak to someone at the hospital when I go on Tuesday or just wait for the MRI results, which could take weeks? Maybe my GP could help - I don't know what to do really. I have had pain with the cyst for so many years but now I've been diagnosed with EC and starting spotting along with the pain, I am in a boatload of misery. Sorry to ramble on but I am in a state of panic now and not sure what to do.. Thanks in advance.

HI Lola, 

Just a handhold here really, 

Before my scan results every cough was it in my lungs, an achey hip was it in my bones etc. A very anxious time .

There's no magic answer but try and be busy is my advice, and physically tire yourself during the day so you have the best chance of sleeping. 

Even if bad news is coming (which of course hopefully it's not) you will mentally cope better as time goes on. When I was first diagnosed it occupied my every thought and now 6 months into the journey I think about other things and it's not so all consuming,

Hope the time passes quickly for you, we all understand the anxiety with waiting,

Hi Act, I just wanted to affirm you for your wise and helpful words! 

Hi Lolabear, your anxieties are all very understandable, but if you’re to get through this well it’s really important to try and keep reining in the overthinking and the what ifs and instead to try and focus and what’s known now, today. And to believe in your medical team. The MRI will check for spread and the results may come in quickly. Mine took just 3 days. My MRI was on a Tuesday and my MDT meet on a Friday and I was lucky in that they were back in time for that meeting. Do you know on which day your MDT meet? That may give a clue as to when the results may be given to you. All the best for Tuesday. 

Thank you so much for replying! I guess I am an overthinker (work history of being a lawyer doesn't help much lol!) but I understand what you mean. I have had a CA125 a few months ago which was clear, so hopefully it will be OK but I won't know until the MRI results are back obviously. My scan is Tuesday and I have a feeling that the team meet on Fridays but I I will check. Meanwhile, I welcome your support and I will try not to obsess too much....

Thank you so much your reply. Yes, it's hard not to think that everything is spreading around all the time isn't it? I know it sounds daft, but I even move more carefully, as though the cancer's going to somehow get shaken-up and run around all over the place! I did have a normal CA125 blood test recently, so hopefully it's not spread to my ovaries and it's a grade 1, so maybe it will be fine. I am getting a phone call from someone from a charity tomorrow, which may also help. My mind goes into overload all the time but I have plenty to do for sure. 

What is also frustrating is that the hospital don't even respond to emails and when you call, there is just an answerphone on all the time. I was asking about the contrast dye they use for the MRI, but no answer from the hospital. I have a past history of allergic reactions, including anaphylactic shock after a flu jab, so don't want the dye. I will just talk to the Radiographer on the day. Thanks again and hope you are well. 

Hello SueB4 

I can relate to your feelings around your diagnosis and the WAITING for results is very difficult. All of us who have been in this position really do understand.

If you want you can click on my name and read my story so far. My surgery was in September 2023. The run up to surgery was full of "what if" moments. Every test, every scan was "what if this has spread".

At that time, my source of reassurance and wisdom was this forum. Thank you jane2511 and MarmiteFan59 and others who replied to me and metaphorically held my hand at that time.

Ask as many questions as you need to. There is always someone here who "gets it".

Contact your Macmillan nurse to chase things up if needs be - ask questions.

Call the Macmillan helpline to talk things through.

Be very kind to yourself - you have had a shock.

1. Sending a big virtual hug.

Lolabear, I appreciate you’re anxious and it’s understandable but I wouldn’t expect my medical team (except my CNS) to be able to keep up an email correspondence with me! The MRI team on the day are trained and experienced and will also go through a detailed questionnaire with you beforehand! Which includes allergic reactions. They do know what they’re doing! For what it’s worth, I think the dye is only iodine, nothing like what goes into a vaccination, and it helps give a much clearer image of what’s inside and a much better idea of possible spread (or not). If you have any more questions I’d suggest phoning your CNS (office hours Monday to Friday usually) as that should give you a better result.

Hello LolaBear 

The MRI team will ask you lots of questions on the day. In the meantime try calling your Macmillan nurse and explaining your understandable concerns  They could probably liaise with the MRI team beforehand. 

Best wishes. 

I just talked to the team on the day at the Radiology Dept and it was OK. They decided I had too many allergies, so I didn't have the dye anyway! It went OK but was very noisy, as you'd expect. Results in the next couple of weeks I think. Thanks for you reply!