New to this group - just been diagnosed

I'm earlier in the process, but finding it helps to look for distractions.  A riveting book, a new online game, a walk in the sun?  What works for you?

Hi NickyCros

I am sorry to hear that you have had a diagnosis of endometrial cancer. I remember feeling all over the place when I had mine in 2022. It is naturally a scary time and one where you have lots of questions. Most people feel the same and you are not alone. 

When you are first diagnosed it can all feel a bit of a shock. The next step is likely to be a CT and/or MRI to stage the cancer. This is normally done fairly quickly. From the biopsy and scan results they will be able to tell you a provisional stage and grade of cancer. This helps them know the most effective treatment. For most ladies, where it is medically possible a hysterectomy is the first line of treatment. Mine was in 2022 and done via keyhole. After surgery anything removed is sent to pathology to give a confirmed stage and grade and it is the post op results that decide whether any follow up treatment is recommended. For some ladies the hysterectomy alone is enough for others some radiotherapy or chemo may be recommended. 

It is hard when you have just been diagnosed but do not yet have a treatment plan in place. Once I knew what was going to happen and when, things felt a bit more in control. Please do carry on calling the Support Line as much as you need to. They will understand how you are feeling. 

Overthinking and panicking is not unusual. I know for me I became ultra aware of any sensations in my body and was worried that the cancer had spread or things were worse then they thought. It can help to try to just focus on what you actually know at the moment. You have endometrial cancer but that it is normally a very treatable cancer. And we are here to support you. 

Trying to keep to some normal routines can help- I know it can be difficult at this time of year- so regular sleep, meals, exercise -can help. Anything like that will help you be in the best place for treatment. If you do have a hysterectomy, mine was straightforward, I had little pain and was in hospital for 1 night. I recovered well at home. 

Jane

Hi Nicky, sorry to hear your news, I’m newly diagnosed too. My mental health has also taken a massive hit, you are not alone. I’ve had MacMillan, mental health crisis and my CNS on speed dial. I’ve also been in contact with my GP and been given different medications, including lorazepam, which does help. 

have you made contact with your local Maggies, or local cancer centres? I’ve found them a support

keep doing what you need to do to get yourself through this mentally, call all the numbers and get support wherever you can. 

do you have a grade and predicted stage? 

Hi, I've managed to get through that first week since diagnosis, using Mcmillan phone support a lot which has really helped. Been given date for CT scan (today) and MRI (next week), still a lot of worries, but it has helped knowing the dates for these now and that there will be a plan after. Consultant said in meeting and in letter that it is Level/Grade 3. Seems like hysterectomy will be most likely next step once results are back from scans. 

Hi Nicky, sorry to hear about your diagnosis. I'm still new to this group also.

My story is very similar to yours, I was diagnosed with stage 2, grade 1 on the 28th of November. Things moved quickly after that with scans etc. I had my hysterectomy 2 days ago. 

I know it feels like forever, but things do start moving after your diagnosis. I found once i knew the plan, my anxiety did calm a little as I knew what I was dealing with.

It was night time I struggled the most and my mind would run wild with the what ifs. I ended up listening to thunder and rain noises with earphones at bedtime to help me sleep and that worked for me. I at 48 have also for the first time ever got myself a journal and have been putting all my feelings down which has also helped me.  Like others have said try to keep your mind active whether thats a book, podcast or baking/crafts.

I hope things start moving forward for you now.

Thanks Michelle that really helps knowing that you are going through the same thing and have now had your hysterectomy. I wish you well for your recovery. I have had CT scan this week and got MRI scan booked for Tuesday. Hopefully things should move quickly then and I can have my hysterectomy. I have some anti anxiety meds which are helping me sleep and I’m am trying hard to keep distracted. It is hard not to think the worst. Sending you lots of positive thoughts back 

Hi Jane, I have so appreciated all the kind responses I have had on this forum since I first posted on 23-12 when I had my diagnosis. I have now had my CT and MRI scans, was discussed at the MDT on Thursday this week and now have appointment with consultant next friday 16th January. My mental health has taken a real dive, despite huge efforts to manage my anxiety I am not just not coping. I am thinking the worst and just can't face bad news, I am thinking I just don't want to be here. I am becoming increasingly agitated, my GP has prescribed Diazepam which is helping me sleep some, but my anxiety during the day is off the scale. I have been prescribed some beta blocker type meds which I need to pick up today. Just cant see how I am going to get through the next 6 days, before the appt. I can't see. a good outcome in my head. 

Hi Nicky, I just want to let you know that you are not alone in your mental health reaction to your diagnosis - I am exactly the same and each day is a struggle. I’ve reached out to all kinds of support lines etc and they all tell me that this is a normal reaction - not sure whether that helps you or not

I’ve found some local cancer support groups, have you looked to see whether there’s any near you? Is there a Maggies local to you? I’ve had help from them too

I’m on lorazepam, I’ve been using it to sleep during the day as sleeping gives me a bit of respite from the thoughts - I met with my surgeon and GP practice nurse this week who told me that if that is my coping mechanism right now, then just go with it. I seem to calm down at night, I think I’ve exhausted myself by that point 

I’ve used this site a lot, repeated myself a lot, and had a lot of support from here. Please keep checking in, everyone here knows what you’re going through right now 

Hi Michelle, just wondering where you are in terms of your recovery, my hysterectomy is on 22nd January. Hope you are recovering well 

Hi Nicky

I know that it is really hard. What is happening at the moment is normal. The diagnosis, then some scans, then the MDT and then the appointment with you. Try to think of the appointment as positive because it is going to give you the next steps in terms of treatment. So at the moment it can feel very stressful and sort of in limbo. By this time next week hopefully you will have a plan and possible date for your hysterectomy. (The normal first line of treatment). 

So rather than think of the appointment as impending bad news- think of it as the positive next step in getting rid of the cancer and the first step in getting better. You say you are worried about bad news- but in a way you have already had the bad news- the cancer diagnosis- this meeting is more about how they will be treating it. Once you know for sure how and when it will be treated, then you have time to prepare for it. Simple things like pack a bag for hospital, clean the house ready and set up some little things for recovery (duvet and cushions down stairs), sort some shopping so you don't have to worry about things. 

Well done for reaching out on here and for also speaking to your GP about how you are feeling. I hope that the diazepam along with the beta blockers will help. I know there are others on here who are currently struggling with their mental health so you are not alone. 

The Support Line is there for you from 8am-8pm daily. Please do call as much as it helps. The Support Line can also have a look to see if there is any support local to you. Maggies centres can be really helpful. 

If you feel your mental health is in crisis do give NHS111 a call for support. 

There are some phone numbers here in case you need them. 

Mental health helplines

Please do also continue to reach out to us on here. The Online Community is here 24 hours a day and it can sometimes help just to express how you are feeling by writing things down. Although you may not get a reply for a bit if it is late at night someone normally will respond within the same day. 

So today, pop out and pick up those beta blockers and get a bit of fresh air. Then take it easy at home. Do things one step at a time. I found it was simple things like keeping up with little routines that could make a difference. 

Jane