Guess this is where I need to be now.

Hi Loopt, welcome to the group and to this emotional rollercoaster ride we’ve all either been or are on. You’ve had a big shock, and it’s understandable and okay to feel and overwhelmed. I was diagnosed in November 2021, and can still remember the phone call when I was told, and the feelings I had at the time. I also remember an often daily feeling of all my thoughts, major and minor, being up in the air and finding it hard to let them all settle and ground myself. We all find our own way through, and so will you. For me, my focus was on coping “well” so that my loved ones could see me handling it as well as I could, so that they didn’t feel responsible for me. This involved me reaching out by phone to my CNS (cancer nurse specialist) team for support from the start and also phoning the Macmillan help line. I phoned my CNS the same day I was diagnosed, and called them as needed right the way through the whole process. They were lovely and said that’s what they were there for. I had face to face meetings with them twice too. They work 10-4 Monday to Friday so if I was anxious early mornings, evenings or weekends I phoned the Macmillan helpline as they’re open 8-8 7 days a week. Sometimes it would just be me phoning up and saying “hi I’m feeling anxious” and as we talked the feelings would subside. I also made sure my husband had an outlet for his anxiety - I told him from the start that I needed him to cope, and that I needed to see him coping. I felt if I was coping okay, then he would too, so that was my goal, to keep that going. For him his outlet was his golf buddies, and I actively encouraged him to talk to them about how he was feeling. For me, I was extremely careful about who I told, and I actually told very few as I needed to trust their reaction and didn’t want any shocked faces or “how awful” or pity, as that could have eroded my resolve to cope. 

The next step for you will likely be an MRI or CT to predict the stage. I had an MRI and also a chest X Ray, Thanks to being in touch with my CNS I got my x ray result the next day over the phone, and thr MRI results only too 3 days as the MRI was on a Tuesday and the results were back in time for the Friday’s MDT (multi displinary team) and I got my results then. Some results take longer, it depends on the hospital. Once the predicted stage is known, you then get an appointment for a pre-assessment for the hysterectomy, and then a date for surgery. The waiting is horrendous, and for me and many others it was the worst part. But with support you will be ok, and this group is wonderful for that. Please feel free to ask any questions - and if you want to read my story, click on my name and read my bio. 

One more thing after my essay! Try and ignore the temptation to Google! It won’t help as it will be hit and miss as to whether it’s up to date, reliable, appropriate, accurate etc. The Macmillan website is super for info. Have a look at this link: https://www.macmillan.org.uk/cancer-information-and-support/womb-cancer

It’s great that yours is Type 1 - that means it’s Grade 1 or 2 which are typically slow growing. The terminology (type, grade, stage) can be a bit confusing but the link I gave you above has helpful links to explain each one. Mine was type 1 and grade 1. 

 MarmiteFan59 I feel a bit freaked out reading this as I didn't realise that mine was type 2 and am now concerned about no further treatment....

Thank you. I'm just so worried about having the symptoms for years. It's had so long to grow and spread.

I haven't been given any nurses or numbers to call. Just got told to wait for them to contact me after the mdt. Dr wasn't sure if it's this Thursday or next. 

Last time I had an mri I freaked out and they couldn't continue. I'm Hoping they will just do a ct. 

I had the symptoms for years also, I am 49 now so they kept thinking it was peri menopause for me. I had also had a couple of scans due to weight loss, fatigue etc so, easier said than done but, try not to panic x

Hi again Loopt, I know it’s difficult but try and focus on what’s known now. You’ve had symptoms for years but they may not mean you’ve had cancer for years. I would suggest that you proactively phone the gynae cancer department at your hospital and ask for the contact number and email address for your CNS and then you can start getting support, and also info when needed. Mine had my case notes on their system and were able to check info, chase appointments and were amazing. When we get the news that we have cancer, it’s inevitable that will feel helpless and have no control and that’s scary and can be mentally disabling. Taking steps to find out info and get support can equip us and make us feel a bit better. We don’t have to feel like victims, we can own our diagnosis and take an active part in helping ourselves. 

Regarding the possibility of an MRI, I hear you and get it. I had one years ago and had to press the panic button. Someone told me whatever you do don’t open your eyes. So I of course did, panicked and pressed the button. But for mine for my cancer I told the technicians I was nervous, and they suggested an eye mask, and honestly that made all the difference. I imagined I was laying on a beach, and sang hymns in my head, and it passed very quickly, I asked them to let me know when we were half way through and when we were nearly done and that also helped, I went in head first but some ladies here have gone in feet first so that’s also worth asking about. 

Loopt, you may not need an MRI. I had ultrasounds and hysteroscopy but no MRI or CT. I had symptoms for ages too, I can't remember how long now but I was bleeding intermittently, in pain, pale and tired. I think I was Grade 1, stage 1A, I don't recall what "type" and I'm not going to look it up now as I don't want to think too hard about those days. I had keyhole surgery and - fast forward a few years - I am running, cycling, and (unfortunately?) able to do the decorating again too.  Good luck to you, let's hope it all goes well for you.

Just to say though that having an MRI or CT is the usual diagnostic tool nowadays to predict stage - and for me it was a massive relief to know that my cancer was contained within my uterus. 

Good to know. I recall now that I had biopsies during the hysteroscopy - I think that was how it was conclusively diagnosed - and I had a chest Xray. At the time I didn't ask much detail as I was in a bit of a mental tunnel, wanting to just move on to the next thing and get through it all and out the other end.

Hi again LittlleRunner, I had a biopsy during the hysteroscopy too! Different hospitals may do things differently - but maybe also standard procedures have changed since 2017!