Mum's diagnosis after hysteroscopy

Hi hopefulclub it's always such a shock getting a cancer diagnosis and they do bombard you which a lot of info that's overwhelming. The biopsy will indicate the grade and type of cancer scans will look and see how far it's penetrated the womb. The lower the grade shows it's slow growing and less likely to have spread. I expect jane community champion will be along shortly to explain everything fully to you.

• Thank you so much papermoon. The MRI is full body, is that normal? I thought it may just be the womb area. Reading into everything like we do :( 

Hi Hopefulcub

After my hysteroscopy I had a full body CT scan and a pelvic MRI. It seems different hospitals have different procedures as to which scans they use. I think it’s normal to worry about the what ifs I know I did. I had had symptoms for a few years before I was diagnosed so I was fully expecting it to have spread everywhere. In fact I was stage 1b grade 2. Try not to panic I know it’s hard not to but after the MRI you will know what you are actually dealing with and will have a plan going forward. 

Linda xxx

Thanks so much for sharing your experience, it's really helpful x

Hi Hopefulcub, welcome to the group! Is your mum going to join too? Many of us here are either diagnosed and awaiting scans, had scans and awaiting hysterectomy, had hysterectomy and awaiting results, had hysterectomy and needed no treatment, had hysterectomy and due to have/having treatment, had treatment and out the other side and having checks, or having ongoing care of some sort. We’re a lovely supportive group and your mum may find it helpful to chat things through with us! 
Are you in the UK? If so your mum should have access to one or more CNS (Cancer Nurse Specialists) that she can phone office hours Monday to Friday with questions or when she needs support. I was given the contact details for mine when I got my hysteroscopy results over the phone. If she hasn’t been given their phone number already, I suggest she asks her consultant’s secretary for them. Our CNS have full access to our notes so know who we are, and mine helped by being a listening ear and also chased appointments for me sometimes as they had direct contact with my consultant. It may be useful for your mum to enquire about the type of cancer (there are a few different types of endometrial cancer) and the likely grade. Her CNS should be able to tell her this as it will be on her notes. It may also be a good idea for her to ask which day her MDT meet - this stands for Multi Disciplinary Team - they’re the ones who look at any test results before we’re told, and it’s handy to know the day of the week when they meet as that can give a clue as to when we get results. For example I knew that my MDT met on a Friday morning, so results were most likely to be given Friday lunchtime onwards, or, if not, then not for another week. The predicted stage can be determined from the MRI but it’s not fully known till after the hysterectomy. Feel free to ask us any questions you want, but please also do encourage your mum to join the group. And don’t Google - as you’re highly likely to find out of date, not relevant or even totally wrong info that will just scare you. Macmillan is a super and reliable resource. Click on my name if you’d like to read my bio.

Thanks so much MarmiteFan59, 

Yes we have a nurse, mum hasn't been intouch with her though, she's struggling to make any phone calls etc she's just shut down and not really functioning. 

My obsessive personality means that I go into overdrive researching 24/7, hence me being here! This is the best source I've found so far, you are all so inspirational. 

Do you think the nurse would talk to me as her daughter? 

Good idea about the asking the day of the meet! The waiting is torturous isn't it? 

Thank you again you've been really helpful x

Hi again, the CNS may not be able to talk to you about your mum’s case without her having given permission, but she should be able to speak to you and give you advice as to ways in which you can help your mum, such as signposting you to the local Maggie’s Centre or whatever other support your hospital has. Are you going to be taking your mum for her MRI? If so, you could maybe try and see if the CNS would be available afterwards to say hallo. For me, I didn’t even tell my adult children about my cancer diagnosis until after my MRI results as I didn’t want their potential reactions to unsettle me while I was trying to stabilise myself mentally. I had told them I was having some gynae investigations but that was all. For me, how those around me reacted to it all was paramount - I didn’t want panic, or fuss, not because I wasn’t scared but because I was, and I didn’t want to be having to deal with their scaredness too. We’re all different but I’d suggest that you finding a way to cope with this yourself may then help her cope better. It’s okay and understandable for her to feel overwhelmed and scared. And for you too. By the way, the Macmillan phone helpline is open 8-8 7 days a week, and you can call them with help and support for yourself.

Hi again,

Yes we are certainly all different. I've been very positive and supportive, not showing her my fear. 

The point of me being here is to pass on all the positive, successes to her. She can't remember some of the info that was said during the consultation but remembers some positive snippets. I wasn't there so I need clarity to reiterate and encourage her. 

The more time goes on, the more she's only focusing on the negative and worst case scenarios. We lost my dad to cancer 11 years ago, I am trying to convince her that this is totally different (he had stage 4 pretty much everywhere). 

Thanks for your advice

I was given chest pelvis and abdomen cat scan just pelvis mri. 

Hi Hopefulcub

I took my son with me for the results of my scans. It really helped me because I tend to get things out of context and think the worst case scenario. My son basically listened and took notes during the appointment. He also asked questions that I didn’t think to ask and it was reassuring to have him with me. Perhaps it would be possible for you to go with your mum.

Linda xxx