In process of diagnosis

Hello Londonfornow and welcome to this  very warm and supportive group. I am so sorry that you have been given this diagnosis and of course you will be very frightened. I too was diagnosed around this time last year. My womb also was 19mm thick and hysteroscopy showed a large polyp which resulted in it containing Serous cancer. Please read my bio for my story so I don't repeat. 

After you have the CT and MRI scan your case will go before the MDT meeting and a plan of action will be made. You will most certainly have a full  hysterectomy and may have an option whether to let surgeon take out lymph nodes or not for more precise staging. 

I remember at my pre assessment and after the hysterectomy the surgeon mentioned that I would need Chemotherapy but was quite surprised when the histology came back it showed  the cancer was only contained within the polyp so chemotherapy was now optional and they advised it was up to me as potentially they would be overtreating me as there may not be any cancer left to kill off. So I decided to go ahead anyway and have the treatments as there was no guarantee that one cell hadn't escaped and could start a recurrence.

It's been a tough long journey but one year on, I'm here and am living a normal life again. Please do ask anything else you need to know there's plenty of advice and support if you need it as you're very early on in this unfortunate period of your life we can help alleviate some of your fears. X

Madesp said:

It's been a tough long journey but one year on, I'm here and am living a normal life again. Please do ask anything else you need to know there's plenty of advice and support if you need it as you're very early on in this unfortunate period of your life we can help alleviate some of your fears. X

Thanks for you reply. Good to hear you’re back living a normal life, that’s very encouraging. Will definitely come back with any questions.

And of course it's so good you have the CSN details, they're a source of information that's particular to yourself, mine was glad to give me my scan results over the phone about five days after the scan as I told her I was so anxious and couldn't sleep but appreciate that not all can operate in this way. If I remember correctly the CT is for checks of spread to other parts of the body and MRI was to stage it, it was just before Christmas 2021 that she told me the stage and so I had calmed down a bit and prepared for the next hurdle. Anyway take care x

Hi Londonfornow,

Sorry to hear about your diagnosis, welcome to the group. I am also Grade 3 but stage 4. I am currently well and the disease is stable after treatment. I started bleeding and was in pain around this time last year. I carried on working up until my surgery date. Looking back, I was distracted and in pain and work was being heaped on me as I was going to be off. I should have been looking after myself but I was dedicated to the job.....you live and learn.

I hope your scans come through quickly, keep your phone on you as I found the hospital rings with apts and your diary will fill up quickly.

Keep in touch and let us know how you are,

A x

Thanks. Encouraging to hear you’re doing ok despite what sounds like a complex case.

I currently freelance part-time - have Long Covid which put an end to my full-time job with long hours. I’ll look at commitments beyond December - might be best to pit things on hold until after surgery (which I’m sure is coming) and then gradually phase back in.

Will definitely keep in touch here. Feels like a supportive and constructive space, which is what I was looking for when joining.

Hi new here, how do people deal with the wait from referral to appointment? It's been 1 day and my mind is going crazy ... its so hard to concentrate

Hi Nuttybutter, welcome to the group, it’s good to see you. So have you just seen your GP and on the two week pathway? It may sound a bit of a cliche, but we get through it a day at a time and with support - for me that was support from this group, from the Macmillan helpline and from my CNS nurses (I got their contact number once I was diagnosed). It’s a roller coaster ride, the waiting is horrendous, and it’s frequently overwhelming, but we can get through it - we can learn to take care of ourselves, learn how to let things settle and find a way through. And we can be ok. And you will be too. 

I’ve just tried not to focus on it too much. Easier said than done. I’m finding the period post diagnosis but pre-treatment plan harder than the initial wait - patience is not one of my virtues and I’d rather just get on with whatever needs to happen.

Hopefully things will move quickly for you.

sistermoon said:

I hope your scans come through quickly, keep your phone on you as I found the hospital rings with apts and your diary will fill up quickly.

Scans have come through quickly! Initially sent an MRI appointment for 30th Dec, which felt a long way off but yesterday evening the hospital rang with a CT appointment for today and MRI for tomorrow. The consultant had originally said the MDT would meet on 21/12 so looks like all is on schedule.

I saw my gynaecologist on Sunday and it was them who said I need a biopsy. Honestly after they said that everything else was a blur.