Hello. Had a biopsy done 2 weeks ago. Received my diagnosis last Thursday - grade 3 cancer of the womb. Had CT scan today. Expect to go to see the surgical team next Tuesday. Off work as I’m so tired already. Emotionally ok but agree the waiting for a call is awful

Hi and welcome to the forum.

Everyone on here will tell you that waiting is the hardest part. I don’t think anyone can give a definitive answer as to how to cope because everyone is different. Some say keep yourself busy, others fill time with things you like doing. I’m afraid that didn’t work for me at the stage your at. I eventually went to my gp and he gave me a low dose diazepam which I took for less than two weeks. It helped but that’s not the answer for everyone. All I can say is that things seem to get easier once you know more about your diagnosis and there is a plan in place.

I was diagnosed in April this year with endometrial (womb) cancer and I was absolutely devastated.  I had untrasound, hysteroscopy, biopsy and MRI before the diagnosis was definite. The waiting for each result was hard but once I knew the treatment plan it was easier to cope with. I’ve had two lots of surgery and internal radiotherapy and today I had my follow up appointment at the hospital. I am now on regular 4 month appointments with my gynaecologist for the next year and then yearly appointments after that. It seems to be such a short time since April and yet the longest eight month of my life. But I’m here and have just come back from a lovely cruise. It is doable although I wouldn’t have said that at the start. Hang on in there. Take one day at a time and don’t look too far ahead at this stage.

There are always people around here who will listen and support. If you want to ask questions, shout, scream or just have a good moan, go ahead. If you want to ask questions but not on the open forum, I’ve sent you a friend request so you can private message me. It’s up to you whether you would like to do so, 

I am sending a virtual squeeze from my hand to yours.

Sundial.

Hi there, thank you so much for your kind words. I think it’s worse as I was a theatre nurse for 13 years, so know exactly what is going to happen to me. The surgeon told me to make a list of questions for next week, but I have no questions at the moment as I don’t know my treatment plan other than knowing that a hysterectomy and removal of cervix, tubes and ovaries is a definite. I had occasional spotting and then daily staining for the last 10 months. I had a smear test in March, but had to have it repeated because the slide was out of date. I had the repeat smear in October, and it has come back clear. I’m hopeful the cancer hasn’t spread. To be honest I wasn’t surprised as I knew there was something wrong. I should have gone earlier, but no point beating myself up, it is what it is and I just have to deal with it. I have an elderly mum and a 37 year old daughter, and a 19 year old granddaughter and have decided not to tell them anything until I know better myself. I am 56 years old. Apologies for the long post.

Hi there, thanks for your reply. It’s good to know I’m not alone. I have decided to continue working until my surgery. I work night duty so hopefully being busy will stop my mind running away with endless thoughts. My husband has not taken the news too well and that’s before invasive surgery!. Hopefully on Tuesday you will be given a treatment plan and can start being proactive. I have cancer, but it does not define who I am. It is a minor blip!. Stay positive X

You are very welcome. Yes being s theatre sister could be a blessing or a curse. I went in for my hysterectomy in ignorant bliss and hopefully so it will remain I had keyhole surgery, everything removed and home next day. My cancer was upgraded from 1 to 3 after histology so I had further surgery to remove 92 lymph nodes, all of which were clear thank goodness. I believe the cancer had been there some time as I had three bleeds over eighteen months, the first two misdiagnosed by my gp. Fortunately it had not spread beyond the endometrium and was deemed stage 1b hence the internal RT. When I say this is all doable I managed despite having had type 1 diabetes for 56 years and luckily I’ve had no major side effects so far. Incidentally I have a 36 nearly 37 year old daughter too....and a 38 year old son, no grandchildren. I told them almost immediately and was grateful that I had. They were my rocks through the last eight months. My daughter came with me to the hospital even on surgery days and visited me in hospital when my husband could not because of illness. I truly don’t know how I would have coped without them all.

Take care. Keep us posted.

Sundial

Hi All 

Im 39 but have been referred for hystoroscopy - urgent referral but waiting times are currently 6-8 weeks. I had some minor spotting a few weeks back and so popped to Dr as I take the pill and don't usually have periods. I had an ultrasound which picked up some fluid in my womb. I am completely terrified. No one has mentioned the C word but I am beside myself with worry. I suffer with crippling anxiety which is making me so much worse.  The Dr hasn't said specifically why they have referred me, I just had a letter through the post! Can anyone help ... I'm sat at my desk at work worried sick. I have two children 15 and 11. Thanks in advance !

Hi there, having worked in the NHS as a nurse for 30 years I would say be proactive and ring the appointments department. Tell them you have been red flagged and are waiting for an appointment for a hysteroscopy and have they any dates for you yet.. Also tell them you are happy to go at short notice if a cancellation occurs. Usually your appointment is pretty quick, I had an appointment within 2 weeks of seeing my GP. Also make an appointment to see your GP and take your letter and ask for more information. Tell him you are worried sick. GPs are pretty good at explaining reasons for referrals, so I’m appalled that yours gave no explaination. They might be able to give you something to settle you while you are waiting.

On a more positive note you are young, so the chances of cancer are much much smaller. Womb cancer usually occurs in menopausal woman who are at lest into their fifties.  You have to try and keep the negative thoughts at bay as you can’t do anything at the moment and you are just making yourself ill. I have moments of crying hysterically and thinking the worst case scenario, but I don’t know the outcome at the moment, so for me are useless energy sapping episodes. Once you have your hysteroscopy you will be in a better place to deal with things. Keep busy and positive and don’t put your life on hold.

keep us posted X

Hi Sundial, as a double whammmy I now work as a palliative nurse for Marie Curie, so my mind is going mad thinking of the worst case scenario. I live in Ireland and my family are in England, and that’s why I’m holding back from telling them before I need to. I have a few fab friends and a wonderful mother in law who are supporting me and will be there whatever happens. I am trying to be positive, and have found great comfort from this forum, knowing that I’m not alone. Trying hard to control my head until I know better. I’ve called my cancer Charles after an old boss who tormented and bullied me, so can’t wait to rid myself of Charles haha.

Thanks once again for your support X

Hi TabbyQ

Good advice from JaneD. I couldn’t have put it better myself.

Sundial

Thank you!! Funnily enough that was the information I have when I rang the appointments line! They said listed as urgent but waiting lists were waiting lists ! I'm going to try and go to GP though they have been unhelpful. I even said I'd take phone appointment but was advised by receptionist that the Dr had said there was no need. I'm trying to think that it's probably something and nothing but why urgent??