Just been diagnosed.

Hi Tess, welcome to the group and bless you - the waiting is so difficult! I’m thought to be grade 1, stage 1a, but obviously whether it stays that will depend on the histology results after my hysterectomy. I’m 62, also only had a bit of post menopausal spotting, and was fast tracked back in September. I also had my hysteroscopy and biopsy under GA after a failed one under local, then after the cancer diagnosis, had the MRI and chest x ray, then my results, and have also my pre-assessment just over a fortnight ago. With all the waiting in between of course! My consultant/surgeon has changed and I’m seeing my new one for a face to face on Friday, and apparently after that I’ll be “dated” though at present I have no idea of how long that wait will be! I find the state of being in limbo difficult, also the just not knowing how serious things are. I’ve phoned the specialist nurse team a few times for support - they’re superb - and also the Macmillan phone line a couple of times. I’d definitely recommend reaching out for emotional support help when you feel the anxiety rising as it can be really therapeutic. Please do keep us updated with how you’re doing. Take care.

Hi Tess57 and a warm welcome to our spot in the Online Community. You'll find a lovely group of supportive ladies who have all been where you find yourself now so rest assured, you're not alone in this we're all here for you whether to answer questions or send a virtual hug. These are anxious times but we've all been there.

My journey started in a similar vein, pink spotting on my undies long after menopause. I had my hysteroscopy done by epidural and the biopsies found cancerous cells so I had a laparoscopic hysterectomy (keyhole) and removal of fallopian tubes and ovaries. I ws 67 at the time. My initial stage 1a/grade1 was changed to stage 1b/grade 3 following histology and I had 3 x sessions of Brachytherapy.

It’s always helpful to others if you write a little something (or a lot) about yourself and your journey to date. You can enter it into your profile (click on your username and select “Profile”) It’s helpful to other members with a similar diagnosis who can then hopefully answer your questions. It also means that you don't have to keep repeating yourself. 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.

It’s always good to talk and the Macmillan Support Services provides lots of information, support, financial guidance or just a listening ear. It's free to call on 0808 808 00 00  8am to 8pm, 7 days a week. Have a look to see what is available by Clicking here .

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

Sending you welcoming hugs, B xx 

Hi Tess, a very warm welcome from me too.  It could very well be that you have two separate cancers (i.e. endometrial cancer and ovarian cancer) and your ovarian cancer has not spread into the womb but it is endometrial cancer in your womb.  That is a very real possibility as that was the case with me.  Both my cancers were diagnosed as being at stage 1.  You say your blood work was ok, that is good news.  Can I ask did they do a CA-125 blood test and was that level below 35?  

My surgery was a vertical abdominal hysterectomy including having my ovaries and omentum removed too.  Some of my pelvic lymph nodes were removed too but the cancer was only found in one ovary and in the lining of my womb and as it was less than 50% in my womb lining the endometrial cancer was graded at stage 1a.

You've truly found a great support network with this forum and we're here to help and support you xxx 

Thank you so very much for your reply.

All they said about my CA125, was that it was normal. It's because one Cyst is so big that  it concerns them. 

Is everything ok with you now. xxx

Thank you so much for your message.

Waiting is the hardest. Not sure yet when my op will be. Am trying to stay positive. xxx

I feel extremely fortunate and count my blessings every day that both my cancers were found at such an early stage.  I have recovered extremely well from my hysterectomy and with my consultant even writing that in her report to my doctor so please don't worry about having a hysterectomy.  

I am having chemotherapy (Carboplatin) due to the cyst on my right ovary rupturing during surgery so this is to mop up any cancerous cells that may still be in my body.  I've only had one chemotherapy session so far and that seems to be going well.  I did have peripheral neuropathy (tingling in my hands and feet) which lasted approximately half an hour and that does still concern me a little and will mention this to my consultant but apart from that the chemotherapy is also nothing to worry about.  

Similar to you I was also told that if they had found cancer in my lymph nodes then I would be diagnosed as stage 3 and as well as requiring Carboplatin would also need Taxol (chemotherapy drug).    

The hardest part is waiting for the diagnosis.  I had my hysterectomy on 21st October 2021 and was only informed on 19th November of my diagnosis.  That waiting of just over four weeks has been one of the most difficult times in my life and we understand how you are feeling.  The only way I could deal with it was to approach this one step at a time and at that stage it was focusing on my recovery from my hysterectomy.  

If you have any further questions I will do my best to answer them for you.  My only suggestion now is to start a list of what you need to take into hospital and my tips would be: a long cable for your phone, drinking straws, two or possibly three night shirts (not pyjamas) (and no need for day clothes in hospital), peppermints and peppermint tea and big, loose white pants/knickers and one or possibly two plastic cups for the hospital.  I drank lots of water in hospital to help with my recovery and it is difficult to lift the water jug and whilst the hospital I was in was great they could only provide one (hard) plastic drinking cup so my other cup was a very flimsy plastic cup.  

Wishing you all the best xxx 

Hi Sarah,

Do glad you are doing well on your journey.

Thank you for your great advice. I'm sure that I will have lots of questions further along. I am still waiting for my pre op appointment and hope that comes soon so I can get my op date even though I am terrified, my lady plumbing needs to go. 

It's still very raw at the moment, and still getting my head around what's happening to me. But I am trying to get my positive head on as I know I will need it for the journey ahead.

I will be in touch once I have more news. Thank you for your support. Really appreciate it.xxx

Tess, being positive is good, but just as long as you know it’s totally okay to have days when you’re not feeling positive. It’s okay to be anxious, tearful, have a short fuse, forget things, lose concentration, feel tired, and all sorts of other things that can be signs of stress from worrying about it all. Putting yourself under pressure to be positive, and feeling like a failure when you don’t, is not healthy. It’s really good that you’ve reached out for support today and I’d encourage you to keep doing that. Have you called your specialist nurse team or Macmillan help line yet?

Thank you,I know where you are coming from. I have days when I ring my best friend and rant, cry and repeat myself.  I have no children of my own and my partner's children (grown Adults)  do help as much as they can. Paul my partner works full time from home, and my  brother's, one in Australia and one lives a fair distance from us.

My best friend lives a good 5 hours drive from me, as we moved away from my home town 5 years since.so we manage a phonecall every day or more when needed. I gave up work a couple of years ago. It's been approx 3 months since the start of my journey and I haven't really seen anyone face to face to talk too apart from the hospital appointments and my partner, so I feel quite lonely at times. My thoughts and feelings go on overdrive, especially in the early hours

My anxiety levels are up and down and I do repeat myself a lot with my partner. Sometimes hard to talk with him, as although he is very supportive he has a very stressful job.

I try to keep myself busy at home, but doing the same things every day doesn't help

Everyone here seems so supportive, and I needed to reach out. So Again thank you.xxx

Hi again Tess, we’re all different and each have to work out what works best for us. My husband was the first person I told when I got my cancer diagnosis (by phone), and I cried, and I’m always honest with him if I’m having a bad day, but I also don’t want to dump it all on him because then (to my mind) he’s having to carry all my stuff as well as his own worries about me. I also don’t want him feeling responsible for my mental well-being. I feel the same about my adult children. So when I feel my anxiety rising to a level where I begin to feel overwhelmed by it, I phone the specialist nurse team at my hospital or the Macmillan support line. There’s also a Macmillan unit at my hospital that I may try next time I’m there. I hope you’re able to work out a support system that works for you.