Recurrent Serous endometrial cancer

Hello Bricky

I'm sorry that you find yourself here as it seems you've had all the treatments to ward it off for good especially the brachytherapy which is supposed to kill any cells left in the vaginal vault.

I have had Serous too and my oncologist said it's the first two years to look out if  it comes back, but yours came back after three years I'm so sorry. Can I ask what stage you were when in 2018 it was intially found? X

Thank you for your prompt reply!  It was graded as stage 3B because it had spread into the cervix.  Naively, I thought that if they'd taken all that out with the radical hysterectomy then there was little chance of it coming back but I think the consultant explained that they can't remove all the lymph nodes in your pelvis because there are so many of them so perhaps that explains the recurrence 3 years later.  I, too, was told that the first 2 years are the most important and I saw my consultant every 3 months with regular CT scans.  It was such a shock when they told me at the Chelsea Marsden that I'd need this major surgery (apparently only 50% of the women who need it are offered it).  I just thought they could remove the rest of my vagina and give me some more chemo and that would be it.  How wrong I was! I've just read your original post - I'm 63 too and have 4 grown-up children and am expecting my first grandchild (due on Christmas Day!).  I had the same chemo drugs as you, the first 2 infusions while I was having 5 weeks of radiotherayy (the "blended" treatment offered by the Marsden in Sutton) which was tough but got it over with more quickly.  I wish you the very best of luck and hope you remain cancer free.  How often are your check-ups? x  

Hi Bricky 

I have a different cancer-cervical- which recurred 9 months after my successful first line treatment of chemoradiation and I had a total pelvic exenteration in March 2020, so a bit of a different situation to yourself, but I can understand what life is like after this kind of surgery.

I was told by my colorectal surgeon that there was no cancer in my bowel and they could save it but I asked them to remove it in the hope of limiting my chances of a further recurrence. As my cancer had already spread over my womb and bladder, I wanted to try and maximise my chances of a successful outcome, so I have a urostomy and colostomy now. 

The fear of recurrence never goes away for me, so I too have days which are not so good but this operation gave me a second chance at life so I don’t regret doing it. I was interested in you saying that 50% of women who need this surgery are not offered it as I’d never heard that before. The number of women who can be offered any type of exenteration is limited by the cancer and its location, so was it a surgeon at the Marsden who told you about women not getting it when required? I’d be interested in knowing the reason for that if you are aware of it.

Sarah xx

Hi Bricky we all live in hope and that's all we can do! My check ups have been every three months with a CT scan, my next appointment is February with gynae team as Oncologist has now discharged me from her department. I have been advised what to look out for but every twinge or feeling I have waist down I worry it may be something but otherwise trying very hard to remain positive as I tell myself it was caught very early and contained within a polyp in the womb. But as the oncologist said there are NO guarantees, so it's a time of just getting on with life, but I do think about reccurance.

Gosh I didn't know that only 50% of women get the op you had, I suppose they evaluate how likely survival rate is for the individual, so you could say you were lucky in that you were included in the high stakes of survival!

What is the plan to manage your condition now, this must obviously be so hard and with a grandchild on the way ( and Christmas) you want to be able to be well enough to be around and help?

I forgot to ask my oncologist if they count the cancer free period from the operation or after treatments? Do you know how it's calculated? 

Take care xx

I think they consider you're cancer free after treatment but probably best to ask your team to be sure.  I saw my consultant today and got very tearful because when he did the internal examination it was painful and I bled quite a bit.  Also, it was exactly a year since I had the big op.  I'll have an MRI scan tomorrow or on Saturday to see if there's anything suspicious in what's left of my vagina (very little) and my bowel.  They'll also be looking for adhesions.  I'm having a lot of abdominal pain at the moment and have been told to stick to a low fibre diet.  They'll ring me with a plan of action next week (can't have face-to-face appointment because nurses are on strike).  It's a real roller coaster, isn't it?  I feel very well supported by family and friends but sometimes it all gets too much and I can't imagine myself doing things in the future.  

Take care,

Bricky xx

Hi Bricky

You're clearly having a tough time. I too have a recurrence of Serous - after nearly 4 years. So annoying to think we were nearly out of the danger zone - what a beast this Serous is!! Mine is in the pelvic area and I hope that's all. Although I have chest scan booked later this week. I have chemo starting on 28/12 and am feeling very depressed about that, but as it will hopefully save my life am tryin hard to be positive about it.

All the best as you get sorted with your symptoms - it;s not an easy place to be, is it?

I'm so sorry your Serous has come back.  If mine comes back a second time I don't quite know what they can do about it.  Good luck with the chemo.  I had it in 2018 and I really do think it's not as awful as it used to be.  They'll give you anti-sickness pills and my oncologist just told me to eat whatever took my fancy because your taste buds might be affected.  Tinned pineapple was lovely!  Where was your original Serous?  

I'm waiting for my consultant to ring me on Thursday with the results of the recent MRI scan.  Hopefully, they'll be able to work out why I've been having such acute abdominal pain.  They think it's adhesions as a result of the major surgery I had last December and I don't think there's anything they can do but I just don't want it to be cancer again.  However much friends and family tell you it won't be, you can't help worrying, can you?  As you say, it's really not an easy place to be.

Good luck!

Hello Greenclifflady

I am so sorry you too have recurrence as they told me the first two years are the most watchful ones.

It's like you said....you just start to breathe again and it's come back! It's not fair!

If you don't mind me asking what stage were you when first diagnosed ? X

Hi again, my original serous was in my uterus- it had started to penetrate the womb lining. It seems so unfair to defeat it once then have to start again. 

Mine was the same - endometrial cancer which I think is the womb lining.  The histology following my radical hysterectomy showed a tiny bit of spread into my cervix which is why it was then staged as 3B.  I agree with you, it's bad enough having to defeat it once for it then to come back again.