update

Meb70, so sorry that you got this news today. When I got my diagnosis I was shocked rigid, I thought I was going to have a polyp removed and it never occurred to me that it might be anything else. Once I had my diagnosis things moved very quickly and I had my hysterectomy within two weeks by keyhole surgery, (that was 5 weeks ago so I am a bit of a newbie here too). Then there is the agonising wait to find out what stage it is and whether it has spread.

Everyone here is going through this, so we all know what you are feeling. Are you on your own or do you have support? You will always find a sympathetic ear here if you need to vent your feelings, or ask for other peoples experiences.

You will be on an emotional rollercoaster now for a while, but I hope you hear about your op soon. I must say I have recovered very well from my keyhole surgery and feel almost back to normal now. Take care and try not to worry....waste of time saying that tho!

xx

thanks for your reply jigsaw- I cant wait to get it out. can I ask if yours spread? Obviously that is the thing I am. most worried about! They say it is slow growing but I am not even sure when it started! 

Hi meb70,

I am sorry to hear you got the news that it is cancer and I know its a lot to take in at this moment. What is likely to happen now is they may do an MRI to check for any spread but it also helps them plan whether to do keyhole surgery or open too as my consultant told me. When you hear the word that its cancer I think we all go though different emotions shock, denial and frankfully anger. I remember thinking perhaps I was just looking into the room and it was someone else being told it was cancer I was angry pretty early on but this was partly due to the fact it had taken around 11 months from my first informing my GP about irregular bleeding and pain to actual being diagnosed with cancer. I believe because of my age at the time and it being rarer at my age the hospital did presume that it was just a couple of small fibroids and as was told nothing sinister to worry about as I had a ultra sound in August 2016, a couple of weeks or so after going to see my GP. The hospital nurse practisnor was concerned about an area of my womb but she was dismissed by one of the Doctors that its only a couple of small fibroids and perhaps going on the pill will help, it didn't and I kept going back the GP and saying I wasn't feeling better, they even changed the pill type, but I was told by the hospital that it can take around 3 months for the pill to start working so of course I waited thinking this was the case. In March 2017 I collapsed in pain at home and went to see the GP who sent me to hospital again I had a CT and was told its only a couple of small fibroids and was very rudely spoken too as I was told when the gynae consultant had decided not to see me in hospital but as an out patient at home and was told to go home because I was taking up a bed that a really Ill person needs. I knew there was more too it. I saw the consultant two weeks after discharge I explain again about the irregular bleeding and pain and fatigue and weight loss was happening too. I get told their going to do a hysterscopy to have a good look inside and maybe the Mirenna coil will help me. Roll on 7 weeks and I am back in too my GP getting worried and phoning the hospital thinking my appointment letter had gone missing. My GP even pushed too for me, I get an appointment but it was far too painful for me to tolerate the pain so I waited again for an appointment for it to be done under GA when I went there they then at first didn't want to do it as I had an infection I wasn't made aware of, that was diagnosed when I had been in hospital in March and they didn't know if I was clear and the hospital I went too was s sister hospital of the other and they don't have lab there and were saying that it would take time to send and get results and they need to rearrange my appointment, but eventually after many tears and argument of all the messing me about they had happened to me and me practically begging to have it done they did it and the consultant who did it was horrified what he saw inside I had a suspicious mass and my womb was full of polyps as well as the two small fibroids. I think it was about 8 days later I had appointment to be told it was Cancer. I really thought oh my god its going to be all over my body now to my surprise and relief after my hysterectomy I found out I was stage 1a grade 2 no other treatment as cancer fully contended in womb, so it can happen as mine was lucky slow growing and I always hope that that is case for you too. It all depends on the stage your at and indeed the grade to know if its slow growing or not. Please take solise that we all here understand your worry we have all been where you are now so lots of combined knowledge and experience to share. You will find it all becomes a whirlwind of appointments. My hysterectomy I know wasn't as bad as I had feared they did an incision in my belly button to remove my womb, falliopan tubes, ovaries and cervix I was impressed that it also meant I didn't have a big scar on the surface but lots of stitching inside or as my consultant said I am all roped up! 

Sending you a gentle hug and remember to keep asking questions as we will do what we can to answer and so will your team and your clinical nurse speacialist (CNS) is your go between you and your consultant and a mind of information too.

Hi meb70,

Giving you massive hugs right now as this news is a big shock I remember that sick gut wrenching feeling & then feeling oddly detached from the rest of the rest of the world & not being able to process it all. Please keep talking & asking questions as we can all help in some way & I hope you have some support at home also, as Jigsaw33 said it is a rollercoaster ride in so many ways & it's going to take a bit of time to sink in properly & hopefully you will only need a Hysterectomy.

We are all here for you anytime you need us!

Love & Hugs  xx

Morning Meb70, wondering if you got any sleep last night?  I have spent quite a few nights staring at the ceiling whilst my mind goes round and round!

I was told I had been caught very early, thank goodness my nurse sent me to be checked so promptly.  My cancer had not spread but it had grown more than halfway through the muscle of the womb, so I am classed as Grade 1 Stage 1b. Thus my consultant said I am 85% cured, but he advised  I have brachytherapy ( internal radiation treatment) to reduce the chance of recurrence to about 8% and i am waiting to find out about that. So in theory I am cancer free now...but strangely I am not euphoric because I don't really believe it, same as  I felt at diagnosis. Take care

xx

so I was able to get an appointment today with one of the top doctors in Boston which I am. thankful for. I am feeling weird in one of my breasts and it is freaking me out feeling like it is all over the place. my hormones have been all over the place for the past few months so I am hoping it is the type of cancer that is related to the estrogen levels ? I think that is the slower growing one? I am scared to know the stage as ii feel like if it is more than 1 I will be beyond hysterical with fear. I also dont know anyone (besides my sister!) who has had this type of cancer which is so weird - I feel like everyone has breast cancer but not this . I cant have my husband go in the room because of all of the covid rules and hope that I can remember everything the dr says . all of my friends and family are devastated but then say "Im sure you will be ok!" and I think well why are u so devastated then??!!!  I just keep praying Hail Marys 

I am so happy for u that it was the slow growing one and that you seem to be on the other side of it . thank u for writing to me . it is beyond helpful reading these

thank u just65 .  I cant believe a month ago I was sitting on a beach in cape cod oblivious to all of this . I dont think there are any tumors just a thickened lining and I cant tell which is worse and afraid to google . scared to death of an MRI since I have such bad clostophobia sp? I hope u are doing ok now

Hi meb70,

We all understand EXACTLY how you feel !! Like you say one month ago you were sat on a beach just goes to show how quickly life can change. Thickening of the lining of the Womb is the most common & the most Easily treated, so hang on in there my love. I know this is terrifying & scans are scary, but they are very necessary so they can give you the best possible treatment plan. Please try not to Google, I found for myself & speaking to other ladies on here it made things worse put your trust in the professionals who know what they are talking about.

This is all confusing right now but treatment is usually sorted out quite quickly which is standard, so please don't freak out too much. We are all here to help, so please keep talking & asking questions & let us know how your appointment goes.

Love & Hugs 

Cape Cod sounds beautiful, hold on to this memory, may sound silly but it can help to cope with all the emotional shock. Womb cancer can be related to your hormones its a reason I can't take HRT because of first my age but also that because of the type of cancer I had it puts me more at risk of breast cancer. You do make a good point its ironic that womb cancer effects more woman then breast cancer yet I had never heard of it before hand. So then your mind races is it a rare cancer and yet its a common one. I am unsure if you have ever heard of the eve appeal they are souly a charity to raise awareness of gynae cancers and I found it helpful to understand it all. eveappeal.org.uk maybe worth a little look if it helps.

Sending you a big hug