New diagnosis and petrified

Hi Lizbot

Welcome to the Womb group.

I am sorry to hear that you have had a diagnosis of cancer and wish you well for your appointment tomorrow. Hopefully you will feel a little better once you have seen the consultant and have had a chance to talk about what happens next.

It sounds like you have a diagnosis of the lowest grade (1) and they believe it is at the very earliest stage ie in a polyp. 

The scan is done routinely and it is to give a provisional stage. They are checking to make sure there is no spread elsewhere. 

The normal first line treatment for endometrial cancer is a hysterectomy and it normally will include cervix, fallopian tubes and ovaries. For early stage and grade cancer this may well be the only treatment necessary. My surgery was in 2022 and done via keyhole It was pretty straightforward, I had little pain and only stayed in hospital over night. I recovered well at home. 

Early stage and grade endometrial cancer is a very treatable cancer.

My own surgery took place with in 4 weeks so it sounds like yours will also be done in a reasonable time. 

I was told for my cancer that HRT was not an option. However there may be alternatives. 

After surgery, everything removed is sent to pathology and it is these post op results that will confirm a stage and grade and a few other bits of information- and it is these results that will suggest whether any further treatment is needed. 

You are not over reacting and it is very normal to feel shocked, panicky and feel scared. However you are not alone and we are here to support you. There are many lovely ladies in this group who have been exactly where you are now and will understand how you are feeling and will want to offer support. 

Jane

Hi Lizbot

• I had debaulking surgery a month ago. They diagnosed me with stage 3 serous low grade ovarian cancer. I was first diagnosed in May and I went to pieces. One of my biopsies caused a fast growing tumour in my abdominal wall.  This resulted in my needing 6 rounds of chemo ovee the summer as it was feared this tumour was high grade. Thankfully it wasn't and the chemo did a good job melting away many of the small tumours across my pelvis. I'm now on letrozole with a good prognosis. I didn't have any symptoms. An MRI for hip pain picked it up. Try not to worry. Low grade grows slowly and now they'll keep a close eye on you. My op was only 3 hours. Full hysterectomy, some bowl lesions and all of my omentum removed. Scar runs from North to South. I'm now taking letrozole, the only drug  available for Low grade.

I hope I'm not in your situation but I'm still waiting for the results of the biopsy on a large polyp. However I've been researching the possibilities. Early stage endometrial cancer is eminently treatable and unless it makes you so worried you crash your car en route to the hospital you'll be fine. We face risks in our lives every day whether it's crossing the road or tripping at home but we dont get distressed by those. So yes you are over reacting but it's new and unusual and fear is perfectly normal. Very few people given a cancer diagnosis are entirely rational about it and there's probably something else wrong with them! 

The MRI is routine to check there are no signs of spread. Usually there are not as most endometrial cancers get picked up early. My consultant told me his nurses are back at work 2 weeks after a hysterectomy but if you are on your feet a lot 6-8 weeks is the usual recommendation. You are recommended not to lift anything heavy for a time so if you were planning a large turkey at Christmas  someone else will need to take over lifting it.

There are national guidelines on HRT after female cancers. If you want to read it it's here https://www.bgcs.org.uk/wp-content/uploads/2024/08/BGCS-BMS-Guidelines-on-Management-of-Menopausal-Symptoms-after-Gynaecological-Cancer.pdf

Some types of HRT are likely to be out but I'm way past menopause and I've never had HRT, it was not offered. Women survived without it for many years. Might have been less grumpy with it but there are advantages to reaching the dgaf stage. 

You have a lot of stress in your life and talking to the McMillan help lines might help. Personally I resort to dark chocolate and if you have a bath throw handfuls of epsom salts in it and have a good soak. Magnesium is excellent for stress and you'll absorb some from both the chocolate and the bath. 

You'll likely feel a little better after the MRI.

You’ve had a huge shock, and have a lot to contend, so not surprised as to how you feel. Good luck for the appt today. They are saying low grade, and hopefully caught early, so likely treatment will be the hysterectomy. Good news that they are saying this can be done before Christmas, not too much time to worry about it  ( you will be fine) but also some time to prepare. Once I knew what my treatment was going to be I was a lot calmer. Try to not look too far ahead as it can get overwhelming. Easier said than done.

Hi I am sorry to hear about your diagnosis, had the same diagnosis in January only grade 2. They have caught it early, I went through all sorts of emotions it is only natural. I had a full hysterectmy I was clear after it my only downside I had it 9 months before diagnosed and had not been eating so was weak for surgery so was sick after. Perfectly fine now. Menapouse hit straight after surgery for myself not to bad. You may need a moisturiser off the hospital as you may become dry. But you will be fine all here for you. No hrt but there are alternatives to that also. Remember good to talk and best of luck ️

Hi, I can totally relate to how you are feeling, although my fears have subsided a little, now I have seen the gynaecologist. I was diagnosed with grade 2 1b endometrial cancer which was confirmed after the  Mri and ct scans. The prognosis for low grade endometrial cancer is very good. I will be having my surgery on Thursday. It is a very scary time and the thoughts that can consume your mind are exhausting. Hopefully after each appointment you will feel a little better and more knowledgeable, I know I did. Hope all goes well today. 

Thank you for your reply. Can I ask what stage and grade you were please 

Thank you for taking the time to reply, I’m absolutely petrified. Had appointment yesterday, been told low grade, MRI on 4th December - been told it it’s grade 2 then they can’t operate? But I see so many posts on here saying women have had hysterectomies following stage 2? Would you be willing to give me info re. your situation and where yours had spread to to make it Stage 2 please?

Hi Lizbot

Grade 2 and stage 1b

Mine had spread to ovary so was stage 3A, but it does sound like yours has been caught early. Mine was grade 2. Had abdominal hysterectomy due to size of tumour, and I recovered really well, was able to drive after 3 weeks. The key is combination of doing things when you want but also resting. Fatigue came on suddenly for me in first week or two. Just need to be careful re lifting things.