Help

Hi I am 53 and got diagnosed with womb cancer on Thursday.  Although I suspected it was a possibility hearing those words has hit me like a ton of bricks. I'm now waiting for an MRI scan to stage it and decide which hospital will perform the hysterectomy.  I am absolutely terrified that the MRI will show that's its spread and that I haven't got long left...I wasn't able to have children and went through the menopause around 47 and apart from vaginal dryness I didn't suffer with a lot of the more common symptoms...I'm now wondering if this was the start of it.  Have others here taken the private route for treatment ? I am covered under my husbands BUPA but my NHS hospital have said that there can be delays in receiving info from private hospitals at the MDT.  How long have others waited for an MRI and surgery..  any help or advice would be appreciated as I'm feeling very low and my family are worried sick.

  • Hallo Ejax, and welcome to the group! Bless you, I can identify with the feelings of shock and anxiety, and feel for you. I was diagnosed in November 21 after a hysteroscopy, had an MRI and chest X Ray within a week, results in just a few days, had my op pre assessment in December, and had my hysterectomy in January 22 and histology results two weeks later. And then for me radiotherapy starting in April which finished last Thursday. All on the NHS, and personally I’d favour staying with the NHS for precisely the reason you were given as my CNS warned me about this. A lot of catching up has been done in the last few months and I think the NHS are really on top of things at the moment. Were you given contact details for your CNS? Mine were wonderful for support. 

  • I was diagnosed in September, had surgery in November and started chemotherapy in December.  When I was diagnosed, my ct scan was booked for a few days later, I had to wait about a week for the results then waited about two weeks for an appointment with the doctor as I had surgery in a different hospital to what I was diagnosed at, had my pre op the day I saw the doctor then had a few other tests done then was approved for surgery within a week then got a date for surgery two weeks after that.  It all seemed to happen really quick. X

  • Hi and a warm welcome to our spot in the Online Community. All of us in this group can fully empathise with the shock and disbelief you experienced when you got the diagnosis. Mine came straight out of the blue, just mentioned to my bestie I'd had pink mucous like spotting on my undies a couple of days apart and she said I must get it checked out.

    Now the Covid pandemic is a bit behind us it seems the teams dealing with cancer patients have really got their act together and act quickly. Some going from diagnosis to op within 5 weeks. Mine was more like 12 weeks because I was right smack bang in the middle of the pandemic. 

    Be a little reassured our caner is slow growing so don't panic unnecessarily. I think most of the ladies here had NHS treatment and were happy with it. All the years I worked I was entitled to private medical care and needed it once retired!!

    It’s always helpful to others if you write a little something (or a lot) about yourself and how you came to find yourself here. Why not take a few moments to update your profile. It's always helpful for us to read if we want to ask you questions and you also won't end up repeating yourself. You can enter it into your profile (click on your username and select “Profile”) . You can amend or update it at any time. If you’re not sure what to write, just click on my username.

    If you want to ask any of us any questions please come back and do so. There's always someone around and we can offer a shoulder to cry on, a hand to hold or listen to a rant, we’re here for you.

    It might also be a good idea to download this booklet Understanding Womb (Endometrial) Cancer. I found it invaluable on my journey. 

    Click on the link I’ve created to find out more information covering diagnosis and treatments for Womb cancer.

    You might also find this link to what to take in my overnight bag useful for when you have surgery.

    You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.

    There is also an Ask an Expert section, but you should allow two to three working days for replies from our expert team.

    Sending you welcoming hugs, Barb xx 


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  • Hi Ejax,

    I’m so sorry that you find yourself here. My diagnosis came out of the blue too, so I completely understand how you feel. 

    I know I’m in the minority here but I’ve had all my surgery and chemotherapy treatment via Bupa (I’ve got private healthcare via work too). The main reason why I went down the private route was due to my local NHS Trust being absolutely useless (I live in Shropshire). 

    Unfortunately there is zero compatibility between NHS and private hospitals. However, I’ve never experienced any delays with my treatment. Both my gynae surgeon and chemo oncologist are on the MDT board at the QE in Birmingham, so my results are always available for review. If they’re not reviewed, then I get a phone call a few days later once they’ve been checked.

    So, it really depends on how good your NHS Trust is and what treatment you may need. For my first surgery back in 2017, I knew I was going to be in for 5 days, so I wanted a private room for privacy reasons. The same reason for my recent surgery too, I was in hospital for 8 days this time.

    All of my appointments have been after NHS working hours, so I normally have evening consultations. I also have my scans at the beginning/end of the day, so it fits in with work. My surgery was on a Saturday too.

    Another thing to bear in mind is that you have access to different drugs via Bupa. I had a reaction to one of my chemotherapy drugs, so I was switched over to a drug that is not readily available on the NHS (unless you have aggressive breast cancer).

    The only negative thing I can say about private healthcare is that I didn’t qualify for the NHS wig voucher when I lost my hair through treatment. Looking at my Bupa portal, I’ve saved the NHS over £70k by having my recent treatment and surgery privately. It still annoys the hell out of me as I’ve been paying NI contributions for the last 30 yrs!! 

    Good luck with your MRI results, fingers crossed they’re the best that they can possibly be.

    Take care,

    Liz x

  • Just to say that I had my op on a Saturday on the NHS. My local NHS trust is super (Southampton)! 

  • Hi Ejax

    Welcome to the group. I have private health insurance via my husband's job but chose to stay with the NHS and I'm pleased I did. I had daycase surgery for the hysterectomy and a single room with ensuite for the second surgery. I have had excellent care and can't fault any of it.

    Amanda x