Just been diagnosed with endometrial cancer

Hi Mrs stocks, and welcome to the club no one wants to join but I'm glad you have found us.  The first thing I want to say to you is please please do ring your CNS specialist nurse.  It is absolutely her role to explain things to you in a way which the doctors just don't have enough time to do.  Most of us here have found our nurses to be really fantastic sources of information, help and support.  She won't think your questions and concerns are trivial.  She'll have access to your notes and will be able to explain things to you.

Secondly, it's great that you already have a date for surgery and means you can start preparing.  Personally I was terrified about my hysterectomy but found it all much easier than I thought.  I expected to be in a lot of pain afterwards and wasn't.  I expected to hardly be able to move around afterwards but in fact I was walking about within a few hours and home the same day.  And I'm 65.

My top tips for preparing are

Get some big knickers, a size or two above your actual size so that they won't be tight around a rather tender tummy

Have some loose fitting trousers, skirts or dresses for the same reason

Take a soft cushion with you, it's very helpful to press gently against your tummy, especially in the car or taxi going home.

You'll be given instructions about eating and drinking before your op.  Whatever the deadline for your last drink is, make sure you have a good glass of water or juice then, this will make sure you don't get dehydrated.  Also, as soon as you wake after your op, accept all drinks of water, tea or whatever.

That's enough from me.  I'm sure the other lovely ladies will be along soon with their advice

Don't forget to ring your CNS will you xxx

Steph

Hi Steph

Thank you for replying this has eased my mind a lot in particular for the preparation i would never have thought about the clothes and i pillow this gives me something that i can do and control if this makes sense.

I will definitely ring my CNS on Monday i think i am going to write the questions down so i know what to ask as i keep forgetting and then remembering. When i have spoken with my family about the questions i have they have said dont worry about that just focus on your operation but its the worries that keep popping up so i am definitely taking your advice and going to call her. 

Thank you again Steph for your kind words

Amanda

Hi Mrs Stocks,

Grade 1 endometrial cancer is the least harmful kind, and is generally cured by surgery only. When they say you wont need further treatment they mean you are not expected to need radiotherapy or chemo, just the operation. They should give you confirmation of that when they have examined your womb under the microscope after they have removed it. Then they can give you confirmation of the grade and the stage.

Sounds like they expect you to be at stage 1 as well as grade 1, which would mean no more treatment required. 

Mine was grade 3 ( the aggressive sort) stage 1B so I have had further treatment,  and will be on 3 monthly review for 2 years , then hopefully longer intervals.  No doubt one of the others on here with grade 1 stage 1 can tell you what happens about follow up with grade 1.

Again, because mine was grade 3, and that has some similarities to ovarian cancer, I am getting a genetic test, but I think that is not considered necessary for grade 1 as it's not the same type and therefore I believe not likely to have a genetic risk.

That is a question you could still check with your oncologist after your post op biopsy results.

I too found the operation not difficult to handle.  I am 63, had an open abdominal op due to previous internal scarring and adhesions,  but was still up and about the next day and only in hospital 2 nights ( my op was late afternoon). They will give you advice about taking it easy and no lifting for a few weeks, but it's very do-able. 

I hope you have an uneventful way through this and are on the road to recovery in  no time. Do use this forum for any questions or when you just want some support x

Thank you that is such a relief to hear as i was more worried about the impact on my daughter than myself so this has been really reassuring for me fingers crossed it will remain grade 1 post operation thank you again. X

Hi Mrs Stocks,

I was 35 when I was diagnosed with womb cancer in 2017 and I'm 38 now, I had grade 1 stage 1a womb cancer and my treatment was a hysterectomy, I didn't need any follow up treatment. Follow up appointments vary in frequency by area and by individual but they will at least give you a contact number where you can report any concerns and they will see you in clinic or give you advice, I had six monthly checks for two years then a check next year and then I'll be on open appointments for two years. 

My CNS arranged for me to speak to a genetic counsellor after my operation who looked into any genetic risk factors. There wasn't any genetic risk in my case. I'm not a medic but my understanding is that are different types of womb cancer, the most common type is caused by a thickened womb lining due to unopposed oestrogen (this is the type that I had). Some women who have this type caught early can be treated with a mirena coil, oral progesterone and regular check ups and procedures. Your CNS should be able to tell you more about the type of cancer you have. 

Some people get an MRI scan and / or a ct scan, but some people don't have any scans, they weren't going to scan me but decided to give me an MRI as I was getting some odd symptoms. 

Any other questions, just ask, feel free to send me a private message if you prefer, no question is daft or too personal, I know how you feel just now, it gets better as time passes, I was so happy to get the op over with. By the way the op was nowhere near as bad as I feared.

lots of love

xxx

Hello Mrs Stocks.  When you phone your nurse, ask about the do's and dont's for after surgery (if you haven't already been advised) e.g. movements and activities to avoid and for how long, when will you be allowed to drive again, things you would need help with.  This will give you a chance to get your home prepared now for the post-op time, and get some help organised so you don't have to exert yourself.  Your post caught my eye because your operation date is exactly 2 years after mine - and I am fit and well now.  The operation I had was TLH and BSO.  The scars are barely visible. For any appointments or phonecalls I suggest write down your questions in advance, and also write down any answers you get from the doctors and nurses, because at this time you are hit with so much information it is hard to concentrate.  Wishing you lots of luck and I hope Oct 23rd is a good date for you, as it has been for me.

Hello  A very warm welcome from me too. The lovely ladies have given you some fabulous advice. I’d second the advice to use your CNS - she has access to your notes and she can refer to the doctor too to ensure what she says is specific to your case. A good CNS is worth her weight in gold and definitely won’t mind you phoning. The best advice I was given came from my nurse, who said try not to second guess anything and just take things a day at a time. It was hard to do that at first as I’d just been told I had an aggressive type of cancer. However it was definitely worth doing and looking back I can see that when I managed to do this I was able to see the good things that were still going on in my life. 

You don’t say how old your daughter Is. I’d just say that if she’s school age, depending on how much info you tell her, you might consider telling her class teacher and the schools learning mentor so that they can provide an extra layer of support for her and for you too. That’s not in any way decrying the great support you and your family will give her at all. My observation from having been a school secretary is that children given good quality, age appropriate information seem to cope well with situations like this. 

It’s not long to your surgery so I’d just add try and plan in some fun things for you and your family between now and then.  Keeping things as normal as possible can help keep things in perspective, plus the fun things will give you lots to talk about together when you’re not as mobile in the early days of recovery.

Sending you a gentle hug and lots of good wishes x

I can not thank you all enough for the advice you have given i was really nervous about posting at first but it has made me feel so much more at ease. This i can not thank you emough for. 

Hi fairycake my daughter is 16 nearly 17 she has just started  college and has a little part time job so she is very independent and wont let me speak with college unfortunately however i do trust her to speak up if she needs to and i keep checking in with her. Xx

Dear Mrs Stocks, 

This is the first time I've ever posted on any online forum! I was very struck to read your post as I'd been searching on Macmillan this morning for help having received a diagnosis of endometrial cancer yesterday afternoon. I'm reeling from the news and feel very anxious about what is to come.  Like you I'm 43 and I've been told my cancer is 1a, I am guessing they will be able to confirm this fully after surgery. 

I'm waiting to meet with the surgeons,  with a view to a total hysterectomy in the next few weeks.  Surgery will need to be open surgery for me as I have had a lot of surgery obviously for Crohn's disease.  

I wondered if anyone could provide any advice/experiences of how they felt after surgery in terms of the impact of the ovaries being removed? I'm pre menopausal and I'm worried about how great the impact will be in terms of hormone change. 

Thank you

Morning  noticed your message is for  but noticed you haven't actually 'joined' the group as yet. Don't fret you haven't done anything wrong this is just a bit of info 

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Best wishes for a speedy recovery from your surgery, G n' J