Relapse

Hello Selgats

Welcome to the Womb forum. I am so sorry to hear that you have had a recurrence 2 years after your surgery. 

It must have been really hard and it is something I think that we all fear and understand on here. I suppose at least it is good that it has been picked up at a routine appointment and that means that treatment can be quickly planned and hopefully started very soon. 

I can understand that it is hard to feel positive but at the moment you do not yet have the full picture and hopefully the MRI will bring some precise answers and then you will be able to know what needs to happen to deal with it. The waiting is hard but hopefully once you have a firm plan ahead then things will feel more in control. 

I myself am on regular check ups (every 12 weeks) and I asked during one of these what would happen if the cancer recurred and I was told that options could be surgery, some more chemo or potentially immunotherapy. I know it is hard news to take but try to take comfort that they have referred you to a specialist to discuss treatments that may help. 

If you feel like talking  things through would be helpful then please do give the Support Line a call. They are lovely on there and will understand how you are feeling. The number is at the end of this.

Also if there is anything else you need then please do ask. There are a lot of really supportive ladies on here, all at different stages in their journeys and they will want to help.

Jane

Hi,

I have just learnt that I have a recurrence.  The endometrial cancer has spread to my right lung.  I had only been in remission for 6 months.  I had a total hysterectomy in January this year.  A routine CT scan has picked up 3 small nodules on my right lung.  I am now waiting for a PET scan and then my oncologist will be able to decide on what treatment is best.  I am absolutely gutted and terrified and like you, feel that the last two Christmas's have been ruined with this.  I don't know what my prognosis is.  My oncologist said he didn't think it was necessary to start treatment straight away as the nodules are very small but I will need treatment in the New Year.  Could be more chemo, radiation or immunotherapy or a mixture of all of them.  The last thing he said to me was, lets get this back into remission.  But everything I read online says the prognosis of this metastatic cancer is really not good.  Really low in terms of survival rate.  So I just don't know what to think.  Is this it for me?  Is this the end of the line?  Or is this something that I am going to have to live with for the rest of my life, however long or short that may be.   I know we all have to go sometime but I am only 57.  I'm not ready to go yet!

I'm so sorry to hear this, I started reading prognosis aswell and stopped, it wasn't helping...one step at a time I think...take care

Thanks for such a supportive message, nurses have advised possible combination of both chemo and radiotherapy... focusing on the positives of each day, baby steps..x

Hi Selgats

I'm so sorry you have a recurrence, can I please ask what Grade of cancer and stage you were originally diagnosed with, if you don't mind sharing? Also did you have symptoms that led you to believe that you may have a recurrence of cancer?

It's a major worry for all of us on here and a bit like dodging the bullet!

Dodging a bullet is exactly how a friend of mine described it, it's clearly rickashawed back...it was initially 1b but specialist centre downgraded it to 1a, was borderline 50%as best I could tell

Re symptoms yes though I understand they were unlikely to be linked, acute episodes of excruciating severe pain in pelvic lower area alongside a resurgence of persistent lower pelvic back pain ,(my original presentation)...if it wasn't for ringing the cns thinking it was nothing, id be unaware

Gosh yes, these are symptoms I have been asked to look out for and bleeding. I was Grade 3 Stage 1a too. The thought of recurrence never ever leaves my mind. 

Did you have Chemo and Brachytherapy, as some hospitals don't offer this for early stage 1a cancer. 

No to chemo and radiotherapy though radiotherapy was initially suggested then downgraded....am told it could be both this time, results in two days time

I’ve read your post where you said stage 1b downgraded to 1a - may I ask what grade it was please?