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Late Stage Endometrial Cancer

24 Dec 2017 06:13

Have just been diagnosed by the world's most callous consultant - too late for surgery evidently and she seemed to be offering a spot of chemo almost as palliative, rather than a structured programme which might help fight the disease.  I understand that it has spread, but SURELY something must be possible?

Horrified as have never had a day's illness in my life and there were no symptoms.  Husband is beside himself.  Christmas is cancelled.

Has anyone else been through this cancer?

Happy Christmas to you all

Re: Late Stage Endometrial Cancer

25 Dec 2017 01:26 in response to dogspire

First of all Merry Christmas despite the circumstances - it's a sad christmas for my house as well, so I can relate to that.

I'm not dealing with the same cancer and I don't know much about it, but I noticed you hadn't gotten a reply yet and I wanted to recommend you a blog called lymphomabarbie - it's about a woman who went misdiagnosed for years with Hodgkin's Lymphoma until she was stage 4 and it had spread to every organ in her body. Her hospital refused to treat her, claiming there was nothing they could do, but she was sent to a different hospital where her doctor put her on immediate salvage chemo, and later on she went into remission. Something IS possible. Get a second opinion if needed, or a third. 

It's a very inspiring and heartfelt story, and her attitude about it all is very comic and kick-ass. I know it definitely helped me, even though I don't have Hodgkin's Lymphoma either. 

It's tough, but you're tougher. Major hugs.



Re: Late Stage Endometrial Cancer

25 Dec 2017 02:57 in response to flexiblestraws
Thank you so much for taking the time to reply. Given the timing of this,feel the hand grenade has been lobbed and the whole world has now gone on holiday. Support man's the world, friends, family and now people I have never met. You have no idea the comfort you have given me as I lie sleepless no Christmas morning. Sending love and hugs to everyone going through s***, especially at this time of year. Dogspire

Re: Late Stage Endometrial Cancer

25 Dec 2017 08:37 in response to dogspire

Hi dogspire.  Sorry I too have just caught up with your post - so many people having a difficult Christmas and everyone being so busy makes for a very difficult time of year for many.  I think it would be a good idea to see if  you can get another opinion.  It might be a different opinion or it might not but never say die and doctors, no matter how experienced, can be surprised by what we are capable of.    Fight the good fight and you will see what you are capable of achieving.  In the meantime have a good Christmas.  Sorry you are having such a rough time.

Re: Late Stage Endometrial Cancer

25 Dec 2017 09:39 in response to dogspire


I was diagnosed stage 4 endometrial cancer in 2014. Following a hysterectomy. It had spread to the lymph nodes in my groin.

I had the chemo and radiotherapy and am in remission.

I would get a second opinion especially if you can from a cancer specialist hospital.

Don't cancel Christmas I know it's tough but you really have to make the most of every moment.

Best wishes to you River

Re: Late Stage Endometrial Cancer

25 Dec 2017 10:32 in response to river56

Dear Dogspire,

I was in a similar position to River.  In November 2014 I was asked if I really wanted an hysterectomy as I was in my 70s and my cancer was so advanced and wouldn't I just like chemo? I did consider this but I asked for a hysterectomy and had it in December - It was a difficult operation and I did have a painful Christmas but following chemo and radiotherapy I am still here.  I don't think that my oncologist was too hopeful saying it was not IF it came back but WHEN it came back.  Well, so far it hasn't and it looks like I am in remission. I know that we are all different but before I read your post I was just dwelling on how I was three christmases ago and want to send you love and hope.

Unfortunately some of the medical profession need to go on retraining in TLC - in my case it was the nurses!



Re: Late Stage Endometrial Cancer

25 Dec 2017 11:10 in response to tosyn
Thank you so much for taking the time to reply, especially on Christmas Day when everyone is caught up in jollity. I haven't been offered surgery as it has spread too much, but I would like to be offered a glimmer of hope to cling to and your post certainly have me that. Am prepared for tough times ahead but not for being written off before we even get started. Huge. Thanks and big hugs Dogspire

Re: Late Stage Endometrial Cancer

25 Dec 2017 19:51 in response to dogspire

Hi again Dogspire,elog

You might find it useful to try the Macmillan cancer forum as well as this.  I belong to the womb cancer group and the living with incurable cancer group.  When I was first diagnosed I was terrified as it was immediately stage 4 grade 3 and the latter group was so helpful to me as I could see that there were many many people diagnosed with stage 4 cancer still with us years later.   That did me a power of good and I realised that incurable did not mean untreatable.  If I were you I would most certainly try to find another oncologist hopefully at another hospital.

With love and thoughts


Re: Late Stage Endometrial Cancer

25 Dec 2017 19:53 in response to tosyn

sorry - dont know where elog came from or what it means!!

Re: Late Stage Endometrial Cancer

2 Jan 2018 22:42 in response to dogspire

Hi dogspire,

Just wanted to check in and see how you were doing. I know you and I were diagnosed around the same time and I know how rough it was going through the holidays and having a bomb like that dropped on you. Have you looked into getting any second opinions?

I hope you're doing well despite the circumstances, as well as your husband.









Re: Late Stage Endometrial Cancer

3 Jan 2018 04:04 in response to flexiblestraws

Hi Dee

Thank you for your reply.  Hope you are doing well.  Am getting my head around things more now, although it is still very shocking.  Start chemo Fri.  How about you?

I have a lovely consultant but have asked for second opinion, really so as to leave no stone unturned rather than anything else.


It's a very scary journey bwe are on isn't it?

good fortune with yours


Hugs from dogspire









Re: Late Stage Endometrial Cancer

4 Jan 2018 04:36 in response to dogspire

Hi dogspire,

Good to hear you're starting to wrap your head aroud it - and that your experience with the consultant is better, as I remember you feeling that they were very dismissive initially. Nobody going through what you are needs any of that, not at any point. Awesome to hear that you're going for that second opinion, do you get to pick which specialist to go to yourself or are you getting a referral from your current one? 

I am doing alright as well thank you, although I feel like it's a roller coaster ride - some days I'll be more stabile and more in a "take it day by day"-mood and then other days I feel...well, you summarized it the best when you said scary journey. I frequent this forum and another one that's more specific to my type of cancer, but I've noticed that the bad days are worse when I visit the other one, not for lack of supportive members but because there seems to be so many bad news and outcomes. Somehow the air is lighter here and I get reminded more and more about what you said in another thread - everyone is a statistic of 1, and a lot of factors play into that. Thank you for that. I have a CT-scan next week so we'll get a better idea of tumor size and how invasive it is. 


Hugs hugs hugs,


Re: Late Stage Endometrial Cancer

4 Jan 2018 04:52 in response to flexiblestraws

Good luck with your scan.  I follow Macmillan and this .  Have to stop myself becoming obsessive though.  Hasn't worked too well as you can see by the time.  Sleep is a rather elusive commodity nowadays.


Hugs and blessings to you.





Re: Late Stage Endometrial Cancer

4 Jan 2018 17:31 in response to dogspire

Hi dogspire

Good luck tomorrow.  Ask as many questions as you want even if they seem silly the more information you have the better.  I used to write a chemo diary of how I was feeling each day and this helped me with the bad days as I knew when they were going to come.  I had a reaction to the steroids so they reduced the dose so any feedback is useful.

To Flexiblestraws also - you will get up and down days I went from being really posative to planning my funeral so its perfectly normal.  One of the things I did was decide who I was going to leave things to - not the big things the little things like my handbags, costume jewellery, scarfs etc after about 10 mins of this I cheered up thinking of what my friends and relatives were going to do with all my stuff.

best wishes to you both